A Matter of Life and Breath

The State of Our Union

2012-01-24T21:49:00.008-05:00

Patients, Friends and Family, Doctors, members of the CF community, and my fellow humans:

During my term as author of this blog, I have been honored by the chance not only to share my story with you, but to share yours with the world. The voice of all of us as a single, powerful whole has always been, in my mind, the driving power behind these posts. And so, when I came to you in 2008 to write about my conflicting emotions over being evaluated for lung transplant, when I came back in 2009 to post about my joy and sorrow over being listed and my fear that I might not make it, when I came in 2010 to post about the agony of waiting, and when I came in 2011 to wonder at my life with new lungs, I did it all with the knowledge that I was sharing scenes of a battle that was never only mine to fight. I did it with the knowledge that there would always be someone here who would understand, and that I, in turn, would always strive to be there for others. I did it because I knew -- have known all along -- that this war might be a long one, with lots of rocky battlefields along its way, but that together, we would always claim victory.

So when I wrote about those moments, whether happy or sad, I wrote the words with hope. And when I wrote about the Cystic Fibrosis Foundation and the amazing drugs in our pipeline, I wrote those words with conviction. Because when I wrote about the need for US -- for you and for me and for everyone who can -- to take the lead in making our disease, our communities, and our world into something we can live with, I did so with utter and unwavering faith.

And now, it is my true honor and privilege to stand (sit) in front of you (or in front of your screen, anyway) and send out this message with every last bit of the hope, conviction, and faith that I would like to think has characterized this blog from the very beginning.

Ladies and Gentlemen: THE STATE OF OUR UNION IS STRONG.

The state of our union is strong because even as more of our friends and loved ones continue to lose their lives to this disease every.single.day, we continue to fight, and we know that every angel only makes us that much stronger against this monster.

The state of our union is strong because we are leading the way in drug development for all genetic illnesses -- not just ours, but all of them. We are solving problems and searching for answers that others have deemed too challenging, and we are succeeding.

The state of our union is strong because we don't take no for an answer. Ever. And we never will.

The state of our union is strong because we come together in tragedy and in triumph. We know that neither one ever comes in isolation and we have learned that anything worth doing is going to come with pain. We don't need every second of every minute of every hour of our lives to go exactly as planned; we know that life is worth living just by virtue of being life itself.

The state of our union is strong because we celebrate it.

The state of our union is strong because we never forget who we're doing this for.

The state of our union is strong because we are seeing results. We have a new drug in front of the FDA right now that will probably change the face of this disease for ever. We've done that. But we're not stopping there, and we have new drugs already in testing, new partnership agreements already signed, and new dollars pledged for even better results in the future.

The state of our union is strong because unlike some people and some officials sitting on a certain hill in a certain district-that-shall-not-be-named, we are working for everyone. When we say "no CFer left behind" we mean it. And our officials in the DC/Bethesda area are actually doing what they promise. Yep, the state of our union is pretty unique in that way.

The state of our union is strong because the state of our union is up to us.

And we choose strength.
We choose to fight.
We choose to lead.
We choose not to take no for an answer
We choose to come together.
We choose celebrate and never forget.
We choose to work because we know we matter.
We choose us, and our choice is a cure.

If I could leave you with one final thought on this blog -- if I thought, as we CFers know all too well -- that I might not be here tomorrow and that this was the last sentence I would ever type, it would be this:

That you are all magical, and that I cannot envision what my life (short as it might have been) would have looked like without your help and support. That you have already made a difference. Yes, you. So never doubt that you can do it guys, because I have seen it too many times to stop believing now.

Look, if CF or politics or life itself have taught us anything, it's probably that things can change, and often do, on a dime. So why not put that dime to work for real change and reinvest it into the change you want it to be? And if not that, then why not use your other talents instead, because things can also change in heartbeat, in the blink of an eye, or even, sometimes, in a single breath.

And so it is with us. Each time I look at your emails, your FB posts, or your blogs, I am reminded that our union is stitched together by the common threads that bind us as CFers and as people. No one of us alone, as my dad likes to say, is strong enough to beat cystic fibrosis. No disease alone, however, is strong enough or could ever be strong enough to beat us. If we remember that simple truth, then no battles will ever defeat us, no tears will ever wash away our hope, and the state of our union will ALWAYS be strong.

With love, respect, and gratitude beyond measure,
Your fellow fighter

Prolonged, But Not Saved

2012-01-20T05:46:00.004-05:00

I don't know if any of you out there frequent or even glance at the online news source known as The Huffington Post. It's not my sole or even favorite place to go for news, personally, but I do follow it on Twitter (you can find me over there at @piperbeatty, by the way) and I even drop by the website every so often. And last night, as I was waging yet another (unsuccessful) battle for sleep against the twin terrors of prednisone and prograf, I noticed the following article:

Girl With Disability Allegedly Denied Kidney Transplant

Okay, let me just start out by saying that I have done exactly zero outside research on this particular story. I am not, in any way, shape, or form, posting the above link as a statement of fact or as a condemnation of CHOP (the hospital referenced in the article). I don't have any rights to this story and I don't make any representations as to the article or its content. Everyone straight on those facts? Okay, cool.

All disclaimers aside, what I did do is read the article. And while I was doing so, I found the following statement, attributed to a pediatrician and geneticist, that the young subject of the article should probably

"...use a 'living designated donor' who would understand that 'Amelia's life would be prolonged, but not saved, by the transplant.'"

And that, guys, is where I had to stop reading, look around, and then read the whole piece again from the beginning. Because, quite honestly, I was baffled.

What, exactly, is the difference between "prolonging" a life and "saving" it? I mean, heck, we all die eventually, right? If I throw myself in front of a speeding bullet headed straight toward an innocent child, I haven't really saved that child in the sense that she will never die, have I? What I've really done, really and truly, is prevented the child from dying that day, that minute, that instant, and from that bullet. Assuming that my attempt is successful (I don't know that when I make the decision to leap, after all), then the child will still die somewhere down the road, though I think we can all agree that it would hopefully be a long way down the road and not just around the next bend. But even if it is sooner rather than later, my act of jumping in front of the bullet is still considered "saving her life", right? I mean, if the kid dies in 6 years, no one is going to look back at my action and shake their heads sadly, muttering "well, that's a darn shame. She only prolonged little Suzie's life, when she thought she was saving it!"

On some level, I read the doctor's attributed statement as reasonable, I guess. It seems to be saying that the donor should know in advance that the kidney transplant will not cure the child's disease or other disability -- that she will likely still suffer complications down the road and possibly reject the kidney or damage it, or maybe die of other causes. And I get that, seriously. As someone who was blessed to receive new organs, I know the sad truth that these suckers are scarce (sidenote: go here and sign up if you agree with me and want to fix that!). I understand that not everyone can receive new organs and that doctors have to make extremely hard calls about who can and cannot be placed on the transplant list. All of that makes sense to me, even if it does sometimes strike me as incredibly sad.

But as to informing donors that their gifts are "prolonging" rather than "saving" lives? Well, that, to me, is where things get murky. I'm 100% for information and informed consent, but I also don't know how or why that information is really valid. What sounds more reasonable (and maybe this is more along the lines of what the doctor had in mind in the first place) is to tell donors and recipients alike that transplant is not always (or maybe ever) a total cure. Transplant comes with risks, it comes with side effects, and sometimes it comes with unexpected results. What it never comes with, unfortunately, are guarantees. And as someone with a disease that was not cured by my transplant (I still have CF in my other organs and in my sinuses), I also take it as somewhat of a given that transplant does not have to be perfect to still be a wonderful, joyous, and very much worth it miracle. I have no doubt whatsoever that the doctor quoted in this article would agree with me on that as well.

What scares me is the idea that potential donors out there might think their gift is any less valuable if it simply "prolongs" a life rather than "saves" it. That scares me because I have spoken to transplant patients who have told me that "even just having one deep breath with these new lungs would have been a miracle big enough to make everything worth it." It scares me because I know myself, as a patient, how valuable an organ is to anyone who is lucky enough to receive it, and also to their family and friends. It scares me because the real value of a life is not measured by the number of days it continues, but by the passion and the strength and the goodness with which it unfolds, even if that unfolding ends far too soon. It scares me because some of my favorite stories are short ones, and I want to make sure that those stories are cherished just as much as the longest novel.

Most of all, though, it scares me because it ignores the fact that all donors, all gifts, and all recipients are, at the end of the day, equal. The beauty of organ donation for me lies in the personal connection it represents: one soul reaching across the void or the fear to offer another soul a second chance, because we are, after all, made up of the same stuff. And the best thing about second chances is that they are always a testament to faith and spirit -- even if they don't always last forever.

So probably it is true, after all, that most transplants are more of a "life prolonging" surgery than a "life saving" one. But maybe the deeper truth is that if we could all be so lucky as to prolong the life of another, then we just might end up saving our own.

Little "Miss" Compromise

2012-01-17T15:05:00.012-05:00

A lot has happened since I last updated this blog, so please bear with me if this post seems a bit all over the map. It's a common problem in my world, though I can honestly say that I wouldn't have it any other way.

The most exciting news is that a dear friend from my hospital's transplant program (and a fellow CFer) got his brand new lungs just about 48 hours after I wrote the last post about our little "CF/transplant group." For all the dry runs and the drama and the frustration of my time on the list, I truly can't imagine what this guy went through in waiting for over 2 years for lungs, all while attempting to keep up with the first one and then two handsome sons he shares with his gorgeous and incredibly loving wife. They are truly inspiring people and wonderful parents, and I am so excited for them to move forward together as a perfect, happy, and HEALTHY family. To the donor and the family who made this all possible, wherever you are today, thank you from the bottom of our hearts from all of us who know and adore these special people!

As for me, I get to take care of several routine and not-so-routine health matters before the month is out, including transplant clinic, some less-than-awesome digestive "fun", the endocrinologist to follow up on my pathetic Vit. D levels, a bravo test for my reflux, and the dermatologist. For sanity's sake, we'll keep the discussion of most of those to a minimum and just focus on the circus du jour, otherwise known as a complete dermatology check up.

For those of you who have never had the pleasure of this experience, you're missing out. The process basically involves stripping down and getting a complete body once over by someone trained to know the difference between a freckle and a serious problem. In my case, since I'm covered in freckles pretty much from head to toe, this typically feels like a some sort of military hazing activity. Luckily the visit today was less painful (literally) thanks to the presence of hand held mirrors. Points to the doc for thinking up that one.

What was fun, though, was the final "consultation" part of the program, during which I was informed by the staff that people on immunosuppressive drugs are 65 to 250% more likely to develop skin cancer than your average John or Jane Doe. Where exactly I fall within that large range was never actually explained, but since I have pretty fair Irish skin I'm guessing it's in the upper numbers. Skin cancer, I was told, is dangerous and possibly deadly. The take home message was definitely that the sun is a monster of which I should be afraid, be very, very afraid.

Now, I am cautious about the sun by pretty much any standard. I've known about the increased skin cancer rates since before I had my transplant, and I've also known that certain of my other drugs (like antibiotics, for example), make me more sensitive than most people to the sun and more susceptible to sunburn. Also, as someone suffering from chronic and incurable whiteness, I learned at a very young age that I go straight from pale to burned. There is no tan in my world, there is just increased freckling that sometimes blends together in some form of brownness -- and that only seconds before I turn roughly the shade of a lobster in a boiling pot. I was about 5 years old when I discovered SPF 45, and I can honestly say that I've never looked back.

But that, according to the helpful folks at the dermatology department, isn't quite good enough. In fact, their list of suggested precautions went something like this:

-NEVER EVER EVER leave the house (regardless of weather) without wearing SPF 30 or higher on all exposed skin patches. EVER.
-In fact, since sun and UV rays can come through windows, always wear sunscreen indoors as well.
-Not that it matters anyway, though, because no part of your skin should ever be exposed to the sun. Wear hats with sun protection and SPF clothing at all times.
-SPF 15 is useless. We laugh in the face of SPF 15. It is basically grease. It probably attracts the sun. The makers of SPF 15 are probably paid by the cancer lobby.
-The safest place to live is in a dark hole underground. Second place goes to houses and apartments with no windows, provided you never leave. Anything less than that and you're screwed.

Basically the advice could be summed up as: go outside as little as possible and when you do wear long sleeves with sun protection built in and SPF 30-45 on any exposed parts. And stay away from windows."

Here's the thing though: I'm not afraid. I know the sun can hurt me and I know I'm not invincible (nothing like CF and a lung transplant to teach you that lesson!) and I know I need to be careful. I know all that. But I also know that a lifetime of defying expectations and refusing to listen to life expectancies or warnings not to ride my horse or play too hard or travel too much or whatever have NEVER ONCE persuaded me that the right way to live is to value caution over life. Not then, not now, and hopefully not ever.

So here's my compromise:
-I do wear sunscreen, and I do wear SPF 30 or higher.
-I do NOT wear clothes with SPF, not because I'm stupid, but because fashion is actually important to me. My sister designs gorgeous clothes and I want to wear them.
-I do NOT always cover up every part of me. I do, however, take basic precautions like wearing sun hats.
-I do try to avoid being outside in the sun for extended periods of time, if I can do so without missing out on an activity that is important to me.
-I do not currently wear sunscreen in the winter, but I will going forward. That seems reasonable. Also, I will remember to wear it even if I'm not planning on being outside, particularly in summer.

Okay, so it's not perfect, but I think it strikes a nice balance between being careful and allowing me to be myself, which includes the part of me who grew up in the mountains and loves the outdoors. And who knows? It might even help a little with my low vitamin D levels, which are of course related to sun intake.

The reason I chose to write about this though is not to get approval of my personal compromise plan. In fact, quite the opposite -- I'm quite positive that by posting this I'm leaving myself vulnerable to actual criticism from some of my doctors and the medical staff at my hospital, at least a few of whom know about this blog and occasionally read it. Trust me when I say I'm not expecting any kudos here, nor do I expect everyone will agree with me. Instead, I chose to write this because I think it's important that we, as patients, know and understand our own power to take well-meaning medical advice, think about it logically, and make our own decisions about how to integrate it (or not) into our own lives. I would actually go so far as to say that I think this is the number one job we have as patients: not to follow instructions blindly, but to have an active sense of our own health needs and emotional priorities and to spend at least some time deciding for ourselves how best to balance the two. Anything less is, to borrow from earlier in this post, missing out.

Look, I know my lungs are a gift, and the last thing I want to do is jeopardize that gift by being stupid in the sun. I have friends who didn't make it to transplant, and others who died after their bodies rejected their lungs. To do anything less than the best I could by this new set is in some ways a slap in the face to all those who die each year without the chance at new life, or to my donor who gave me my life back. I know this, and believe me: it is not a responsibility that I take lightly.

At the same time, though, I know my lungs are my chance to live my life in ways I haven't been able to for a long time. For me this means outdoor activities. It means not allowing my health to dictate everything from my clothing choices to the amount of time I spend at the window. It means never taking a single breath for granted and knowing that sometimes I will have to suck it up and do things I don't want to do for the sake of my body, but not that I need to stop living. To put it another way, wearing SPF clothing might not seem like much of a compromise to make. Nor, for that matter, is giving up eating raw food or alcohol or going outside without a mask or riding the subway or swimming in indoor pools or taking all the drugs or not allowing my dog to sleep with me or not taking Communion at church or not shaking hands or avoiding crowds or taking the blood thinner shots that give me nasty bruises or never touching a public computer or not eating from a communal chip bowl at parties or never sharing food or...well, you get the idea. Every single one of these things, taken individually, is actually a reasonable suggestion. Put them all together, though, and it's easy to see how these rules can start to take over your life. And since a lot of them CAN'T be compromised AT ALL (taking all the drugs, for example) then it stands to reason that where one might negotiate leeway is in some of the others (I shake hands with strangers all the time, and then I use hand sanitizer). I personally don't think this is a stupid risk on my part, but I guess that's open to interpretation.

So now I want to hear from a couple of you, if possible. Email me or comment below or whatever, but share a little about how you deal with the "life"/health dichotomy. When, if ever, do you make compromises? Why or why not? And, hugely, what do you do to ensure that you don't "miss out" on any of the things that are important priorities for YOU?

Love, light, and best wishes for a happy and healthy 2012, beautiful people.

Just Imagine

2011-12-22T17:21:00.009-05:00

'Twas the holiday season
December was here
The streets filled with the bustle
Of holiday cheer

But like any good season
It also brought tears
Some are fighting new battles
And facing new fears

Some are launching new efforts
To make themselves heard
To change laws, to find justice,
Or just spread the word

Of the beautiful people
Who fight through it all
For whom life is a blessing
No gift is too small

For people like all of us
Like you and like me
Those who know there's no limits
To what we can be

Because we are the heart of
This whole crazy deal
All the money and new drugs
Affect how WE feel

So all I want for Christmas
For you and for me
Is a present that can't just
Fit under a tree

It won't come from the North Pole
Or deer who can fly
Or a break in at midnight
From some fat old guy

Just believe in your power
To make this thing right
You can help make a difference
And tell CF goodnight!

Dear friends, family, and loved ones:

Happy holidays!

I have to admit that I always struggle a bit about what to say in these sort of "milestone" messages. It's always tough to sum up an entire year in a few paragraphs, particularly when your life for the past few of them has been a constant roller coaster of thrilling highs and some serious drops. And this year, somehow, feels even more poignant to me for some reason -- more so than the years I spent trying to pretend that I wasn't getting sicker, or the near-year I spent on the transplant list updating you on my precarious health. It feels more poignant, even, than the last Christmas message I sent out into the world, announcing my first ever celebration of this beautiful season with my beloved Donor Bob. And to help you understand exactly what I mean by that, I'm going to have to ask you to come with me on a little holiday journey. So close your eyes and hold on tight, guys, 'cause I'm not sure this sleigh has seat belts.

It's because that this year was all about my friends.

Imagine sitting down to write Christmas cards and realizing that, at this time in 2009, yourself and nine of your closest CF friends in the city were all facing serious, potentially fatal health issues. Imagine that every single one of you was or would be in need, within the next two years, of a new organ. Imagine that for three of you, it would be your second transplant. Imagine that every single member of your group was either in their 20s or 30s, and all but one was under 35. Imagine that seven out of the nine of you (yourself included) spent most of your time connected to an oxygen tank. Imagine that in this group were two parents of young children, a nurse, a lawyer, a teacher, a social worker, two older sisters to brothers who also have CF, and one who had already lost a beloved sibling to this terrible disease. Imagine that all of you, from various walks of life and various backgrounds, had three things in common that bonded you forever: your disease, your hospital, and your collective decision to live your life the best you could despite it all.

Now imagine yourself today. Imagine looking out your window, past a glowing Christmas tree, and snuggling your puppy closer as you take a sip of tea and reach for your stack of Christmas cards. Imagine lifting up your pen, preparing to write, and taking a grateful, deep breath of delicious air. Imagine knowing that you could do that only because of an anonymous donor and his wonderful family's decision to give you his lungs.

Imagine how grateful you would feel toward the heroes (yes, it was a team effort) who saved your life.

And imagine that for your group of ten close friends, all sharing the same disease and the same hope for the future, there had been six such life saving transplants in the past two years. Twenty-four short months that brought with it six transplants. Imagine that two of your friends were leaving the hospital that very day, that they would be home for Christmas along with four of the rest of you who now were, collectively, the proud recipients of five sets of new lungs and one kidney. Imagine that one more of your friends would also be home and enjoying Christmas with his wife and two wonderful sons -- and his oxygen concentrator. And imagine that, come the new year, all six of you would make plans to go together to visit the other three, no longer in this world but still so very much a part of it.

Imagine they were heroes too.

Now imagine yourself back wherever you are this holiday season. Open your eyes and look around you at all that you have, all that this world is, and all the blessings that are out there every single day.

And imagine we could do better.

This holiday season, please take a moment to give a true gift to yourself and to the world. I honestly don't care HOW you do it, but I promised myself, my friends, and my donor that I would ask you to do SOMETHING. There are so many ways to get involved, so many problems to be solved, and so many answers that I know are out there -- we just have to stand up and let the world know we have them. And if you're looking for inspiration on this, you might want to start with the CFF (there's ways to get involved that don't require any money!), or with my friend Josh and his crazy puppet friend over at Welcome to Joshland and The Moganko Project, or maybe just in your own community and with the world right outside your front door. Because what my life, my family, my friends, and my donor have taught me again and again is that every single one us, no matter how sick or how wealthy or how old or how wise, can make a difference. Every single one of us can find some way, some tiny act or little gift, that can make us into the hero we've always wanted to be.

Imagine that.

Merry Christmas, Happy Hanukkah, and a Blessed Season full of love and light to all of you, everywhere.

xoxo,
Piper

Man of Mystery

2011-12-17T15:45:00.006-05:00

I remember the first time I heard anything about the man who saved my life. I was in the Cardio/Thoracic ICU in my hospital, recovering from my double-lung transplant and just generally acting like a crazy person. In my mind I was a radiant source of benevolent light who was, in no uncertain terms, a model patient through and through. As it turns out, I learned later, I was in fact a model patient -- providing the model you were seeking was a cautionary tale of how NOT to act after transplant. Whoops.

But a couple of things I do remember correctly. I remember, for example, that a fellow transplantee at my center who I knew from the CF community came into my room (how she got past the nurses I will NEVER know) and gave me a small stuffed dog, which I still keep on my desk to this day. I remember that my CF doctors and nurse came by and spoke with me, not over me or through me like so many of the other medical staff. They asked me questions and listened and told me they were happy to see me smile, which I did for them -- a genuine smile despite the pain. I remember that my wonderful transplant doctor came in to check on me with his son in tow, and that I wasn't listening to him because I was more intrigued by the fact that the child liked my ipad. I watched Erin playing with him and thought "wow, even in this house of horrors there is actual LIFE going on." And I remember when I took my own ipad back and wrote my first few post-tx sentences on this blog, which were in rhyme and read:

Not much to say.
I did my vest.
I got some rest.
I passed the test!
(From: "Live From New York, It's Sunday Night!")

(And yes, they did bring me a vest in the ICU. It was torture.)

I also remember very clearly that my sister came in and told me what she knew about my donor. She said that through a collection of conversations, my family had learned that the donor was mid-40s and that one doctor had explained that he was male and tall, which is why my new lungs were a bit too big for me. It wasn't a lot of information to go on -- not that we were planning on tracking down his family through detective work anyway -- but it was enough. I immediately proclaimed that my donor needed a (new) name as a part of my family, and with that short introduction and a whole lot of love, "Donor Bob" came into our lives.

Every so often people ask me what, if anything, I know about my donor. And I tell them precisely what I just told you: that he was male, that he was slightly larger than I was in terms of lung size, and that he was somewhere in his mid-40s. I am also quick to point out that this is just hearsay, and that I'm not positive about any of it. Because I just don't know. I don't know if he was married, or had children. I don't know where he lived, what he liked, who his friends were, or whether he played sports. If I get a plane, I have no idea whether my lungs have been to my destination before or not or, if they were there, what they saw, what they breathed, what they knew. I don't know if my lungs have ever climbed the mountains of my home state, or stood at the top of the Statue of Liberty looking out over the island I call home. They live in a lawyer now, but I don't know where they lived before, what skills they might know that I will never learn, what names they called out in joy, what sobs they might have let loose in grief, or what words they uttered with their final breath in their first home. I don't know any of that, really.

If my lips could form the words to say hello in another language, would the sounds be familiar music to my lungs? If I sit fumbling with the strings of a guitar, would my lungs be able to tell me how to strum it? When I reread my favorite books, muttering my favorite passages under my breath, do my lungs thrill to the sound of Keats and Marquez and Walker and Stoppard? Do they gasp just a little to stand on the shore of the Hudson and see the twinkle of a skyline they might otherwise never have experienced?

Does the experience of my body now -- the known and the unknown -- mean that I have done more than I will ever imagine? Does it mean that when someone asks me if I've ever been to Mongolia that I can now say, with a straight face and complete honesty, that I don't know, but I hope so?

Because I do hope. Not knowing what Donor Bob did in his life does not in any way take away the reality of what I wanted for him. I hope that he had a ton of fun. That he had people, lots of people, who loved him. I hope he was fiery, passionate about something, and that he liked to laugh. I hope he read books. I hope he felt, even every once and a while, the Earth beneath his feet and the stars about his head. I hope that if he saw Les Miserables at any point in his life that he thought it was beautiful. I hope he aimed to be kind, and that he succeeded just a little bit in that goal. I hope he liked animals, especially dogs or horses, and I hope he got to try really amazing bar-b-que at least once. I hope he liked music and that he tried dancing in public, even if he was terrible at it. I hope he got caught in the rain at some point in his life. I hope he was funny. I hope he had questions. I hope he had faith, though I don't care what kind. I hope he was, is, and will forever be happy. I hope someone he loved was with him when he died. I hope I can make him proud without losing myself.

I hope for a lot of things.

The other thing people ask is whether I've reached out to him, or rather, to his family. The answer to that question is kind of hazy. I have not written the typical donor letter. My center asks you to wait a bit before you do so anyway, but I spent the first year after transplant dealing with a lot of residual infection and hospitalizations. As a result, I decided to wait to write until I felt more at home with the gift that I know these lungs represent -- after I had lived and loved and laughed with these lungs for long enough to find my own voice again, to hopefully communicate the incommunicable and explain the inexplicable to the family whose son/father/husband/cousin/lover/friend or whatever gave to me the greatest gift that I will ever receive. I knew I wanted to wait until I could write a thank you not just from my heart, but from the collective body of heart, soul, and lungs that I am now: one part Bob, a lot of parts Piper, and one wholly grateful and beautiful human being.

But there is a wonder, no doubt, in not knowing everything. There is a joy and an excitement in allowing my Bob, as it were, to just be -- to be all he is and all he ever was, just himself, and independent of medical hearsay, of other people's opinions, or even of my own hopes. A true man of mystery in every sense. A truly unconditional, even unidentifiable, source of love, strength, and opportunity.

And the greatest friend, without a doubt, who I may never even know.

This Post Brought to You by The Letter D

2011-12-13T02:15:00.003-05:00

Vitamin D, that is. Not that I have any to spare.

So, like a Dummy I just realized that it's December and I haven't really given y'all any Details on my Disease Developments in, well, a Decidedly (in)Defensible Duration. Duh, Piper.

Okay, enough of that.

In all honesty, though, the letter D seems like an appropriate theme for what I guess is a long overdue health update. I get so excited by all the cool things going on in the CF world sometimes that I sort of forget the original purpose of this blog -- which was, I seem to remember, to share my own journey through CF and transplant and all the cool (and not-so-cool) stuff that goes right along with it. It's a journey, of course, that is far from over.

And as the CF community reels from the loss of yet more CFers (breathe easy, guys) and rejoices in the successful transplant and calls for transplant and other major and minor successes accomplished by so many of you out there, I'm reminded more and more of the value that sometimes comes simply from sharing our stories. These messy tales of hospitals and doctors and needles and pills and fears and triumphs and testing and even just of breathing are the things that bring us together and that set us apart. So with all that said, well, here goes something:

Doctors

I went to a new doctor today. I think she's an endocrinologist by trade, though she's not my endo and she seems to specialize in bone disease. All I really know is that she works at my hospital and is incredibly nice, which made it a whole lot less painful than it should have been for me to drag myself all the way up to 168th street today even though I have to go up there again tomorrow (for those counting, I live somewhere below 14th -- you do the math). I jokingly noted that the last thing I wanted for Christmas this year was another doctor, but frankly I'm okay with it as long as all doctors from now on get to be like this one. I had a little bit of an ordeal when I first arrived at the hospital, but after that (which she had nothing to do with, by the way) and the inevitable waiting, she turned out to be pleasant, easy to talk to, knowledgeable about CF, and generally worth the extra effort.

Vitamin D

She also told me what I already knew, which is that my Vit D is low. I knew that because that's why my transplant doctor referred me to her in the first place. What I didn't really know, however, was that my level is apparently 3 (or was, as of my last bloodwork) -- nor did I know that "normal range" on that is 30-75. Yeah, as in 10-25 times my level. Nice.

My understanding is that low vitamin D is linked to all sorts of nasty problems, not the least of which is rejection of the lungs. I don't want that. So needless to say we're moving forward with a couple of treatment options, such as increasing my already high supplemental dose of oral vit D. That's just more pills, so I can handle that. We're also doing some extra lab tests, including blood tests and the less pleasant urine collection test. I would say yuck right now, except that's still a preferable option to rejection and/or bone density loss. Also rickets. Urine is definitely preferable to rickets. So yeah, that's all on tap for the upcoming holiday season, along with follow-up appts and all that jazz.

I'm scheduled for an appointment at my transplant clinic tomorrow as well. Between that visit, today's adventures, blood labs tomorrow, the less pleasant test, and whatever new hoops they can think of for me to jump through, I'm pretty sure I'll survive VitaGate 2011. Here's hoping, anyway.

Demonstrations

The more exciting part of the appt came when she asked me to stand up, shut my eyes, and perform circus tricks. Well, sort of. I got to stand, shut my eyes, hop on one foot, and the like. Apparently this was to check my balance, but regardless of its possible diagnostic value it was by far the most challenged I've felt in a doctor's office for a while. And, while I thankfully remembered to point out a foot injury prior to my showstopping performance (that's its own story, believe me), I somehow failed to mention that I have minor balance issues left over from my tenure as a frequent IV drug junkie. So when she asked me to stand on one foot, I didn't think it was the right moment to make excuses, and I just decided to suck it up and stay silent. 30 years of tobra use says that's not a good idea, folks. Needless to say, I will not be quitting my day job for a career as a tightrope walker anytime soon.

Which is helpful, I guess, seeing as I have none to quit.

Donors

The best thing about today, though? Definitely the moment when I realized that Donor Bob and I have been together for exactly 1 1/2 years on the dot. Delightful. And let me be clear that coming to said realization was worth all the new doctors and low vitamin levels and weird acrobatics in the entire world. I'm so thrilled to be still living, still breathing, and still hopping (sort of) with these lungs that I sometimes feel like I could conquer the world if I had to.

Or, at the very least, the world that is mine -- Doctors, Vitamin D, Donors, and all.

Blogger Challenge: Emily's Entourage

2011-12-02T18:41:00.008-05:00

You know how every so often you come across someone who is smart, kind, loving, beautiful, and 100% devoted to making a difference?

A few weeks ago one of my good friends and fellow CFers, Emily, contacted me with an idea and a vision. Apparently some of her close friends and family had recently participated in a stair climb for the Cystic Fibrosis Foundation, and (as so often happens when we climb to new heights together for a cause we believe in) they had left the event feeling inspired, energized, and ready to do more. And that "more" in their case came in the form of a video, spearheaded by Emily's brother, that was designed to make something happen for people with cystic fibrosis.

When I first spoke with Em I was impressed by her commitment (she and her friends had already filmed the video and were working on a website) and by her drive to make a something happen in the CF world. "Wow," I remember thinking to myself, "this girl is talented and eager to fundraise. Awesome." Before she even had two words out of her mouth I was plotting ways to leverage her connections to bring us one step closer to that cure.

But when I sat down to actually view her video -- with her still patiently waiting on the other line, no less -- I found myself actually left speechless. Far from simply asking for donations from her viewers, I realized, this girl was asking for participation. She was asking for each person who saw the video and felt connected to her message to donate what they could and then to pass it on. To share the vision. To advocate for themselves, for their children, for their siblings, for their friends, and for everyone else with cystic fibrosis. She was asking, in other words, for more than money -- what she wanted was a movement.

And so, in the spirit of Emily's vision and the power of her devoted "entourage", I am asking each of you to take her challenge.

Please everyone, take a moment to view this video (and have a box of tissues ready when you do so, because you'll need them!). Take a second to contemplate all the love and energy that is reflected back on you from the screen. Remember, if you can, that this is a video put together not by workers in an office or by someone hired to do it, but by a wonderful and hugely inspiring woman, graduate student, employee, daughter, sister, friend, and activist who actually needs this cure. Then think about what it's asking for -- a couple dollars, a couple seconds of your time, a couple words for you to spread the message to your friends that this is a cause that can't wait any longer -- and see if you can really find in your heart a good excuse not to make that small request happen.

Yeah, I couldn't find one either.

So with all respect, love, and faith in the unbelievable power of this community, I'm officially declaring this to be the latest and possibly greatest "Matter of Life and Breath Blogger Challenge: Emily's Entourage Edition." Here are your official rules for participation:

1) View Emily's amazing video here, then consider making a donation of your own or "liking" her page on FB (neither is required, but both are encouraged!).
2) Create your own blog post, FB status update, or other form of social networking tool (letter, email, whatever). In the body of the message, place a small paragraph of why YOU fight for a cure for cystic fibrosis and why this cause matters to YOU. This can be your CF story, your wish for the holidays, your version of community -- whatever.
3) Link to Emily's Entourage Website and encourage your own readers to take up the challenge.
4) Comment back here with a link to your blog a message about how you shared this vision for an automatic entry into a drawing for a very special CF/transplant-awareness prize package, including gifts from iheartguts.com, apparel, and other fun goodies!
5) Re-post these rules on your own page.

Drawing will be held on Dec. 16 (2 weeks from today!).

**As always, you do NOT need to link back to my blog on your site. However, only those whole leave a comment on this post will be entered into the drawing for the prize. Non-CFers and community members of all genders, ages, sizes, and disease status absolutely encouraged to participate.**

The Big 3-"Oh! What a Ride!"

2011-11-26T21:59:00.007-05:00

On the eve of my thirtieth birthday . . .

To My Family:

As an English major, a sometimes speaker, and a sort of writer, I'd like to believe that there are words for every experience, and for every emotion. What can I say to all you then but this: thank you, ever and always, for proving me wrong. Some things -- some people -- are quite simply beyond all words.

All of you are, individually and collectively, the most amazing, most inspiring, wisest, kindest, and funniest people I know. Thank you for the jokes that you have told, the strength that you have shown, and the love that you have given so freely and unconditionally. When asked recently what small advice I could offer to a new family struggling to raise a child with CF, I replied with the simple truth that I have learned from a lifetime spent watching all of you: that if we can all be proud of one another in our successes, and still manage to believe in each other in our failures, then we can move mountains -- even if it isn't always easy.

Most of all, thank you for making each and every day for the past three decades a gift and a privilege and a life worth fighting for. You taught me to to wonder, to ask, to explore, and to act. And then you taught me how to do it in style.

I admire you.
I love you.

I breathe you.

To My Friends:

A very smart guy once told me that, if given the choice, he'd rather collect friends than years in his lifetime. And as I approach thirty years of those wonderful, magical things called friendships, I think I'm finally able to appreciate what he meant. Because years themselves in exclusivity are hardly worth noticing. It's the people you meet in the minutes and the hours -- the ones who help you fill the days -- that truly matter.

Each and every one of you, whether you've been a part of my life for twenty-plus years or twenty-plus minutes, is a reason to smile. I'm so beyond grateful for the privilege of meeting y'all, for the chance to share in everything from late-night sleepovers to college-age drama to present-day, well . . . adventures.

It's been a hell of a ride so far, guys, and all the more so for having you each along for it. For all the extra years in my life now, however long that might be, I'm most excited for the chance to keep on sharing them with you.

To My Doctors, Past and Present:

I'm not quite sure how to go about thanking a group with which I've had such a complicated relationship. We've certainly been through a lot together, after all. Like a good made-for-TV movie, y'all have made me laugh, you've made me cry, you've made me roll my eyes, and you've made me want to simply walk away. Most importantly though, you've been the reason, more than anything, that I am able to believe in happily ever after. So here it is, after thirty years of sarcasm, challenge, and maybe just a hint of well-deserved teasing: thank you.

Thank you for the procedures and the medicines and the appointments that I never really wanted to go to until I needed them, and then they couldn't happen fast enough. Thanks for being patient with a sometimes impatient patient who admittedly hates to go in-patient. Thanks for talking to me and, even more so, for listening to me. Thanks for giving the best advice you knew to give, even when I didn't want to hear it. Thanks for not believing my bullshit. Thanks more than anything for always believing my truth. Thanks for admitting when you've been wrong and thanks for never rubbing it in my face when I was. Thanks for locking me up, for letting me go, and thanks, most of all, for never losing sight of my humanity -- or for allowing me to lose sight of myself.

Thank you, in short, for everything.

To The CFF:

Thank you, thank you, thank you, thank you. No, seriously guys: THANK YOU.

And last but not least . . .

To My Beloved Donor Bob:

So here we are about to turn thirty, dude. It's weird enough to do it once, so I can't imagine what it must be like to do it twice. But then again, you've always seemed to me to be exceptional. And believe me, I don't say that often about someone whom, when truth be told, I've never even met.

I think it was Aristotle who once said that true friendship is a single soul in two bodies. A single mind inhabiting two lives. It's easy to see why he said this -- the deep bond that comes from shared purpose, shared experience, and shared emotion across two lives and two existences is, without a doubt, a special thing. And finding other people with whom to share your life is, undeniably, an act worthy of even the most flowery language and classical, philosophical cliches.

But what about two entirely separate souls who meet somehow, through fate or God or just the sheer force of human kindness (to the extent we believe, of course, that those are separate things at all), and merge together to support one body? What of the moment when two purposes, two sets of experiences, two lifetime's worth of emotions, meet to engage in the single bodily act of existence -- to continue one life through the graciousness of another? What then, Aristotle? What's your fancy Greek metaphor for THAT awesomeness, huh?

Donor Bob, we may never meet in the traditional sense -- may never share a laugh or a handshake or even just a casual passing smile on the street -- but I promise from here on out to share my life, my body, and my existence with you, just as you have shared so willingly with me. I promise to think on you often, to live by your example of kindness (especially to strangers, which is always harder), and to laugh as much as I can for both of us. I promise to always be grateful for your gift without forgetting that I was, am, and will always be, a life worth saving. I promise to relax into our shared complexity as much as possible, and to spend as much time as I can in living, and not just in existing. You are not my soul, you are not my body, but you are, and always will be, my friend.

With love, thanks, and million moments left to go for all of you, beautiful people.

xoxo,
Piper

The Puzzle People

2011-11-05T13:27:00.007-04:00

Okay, before I get started here today, I want to make a very special introduction. This, beautiful breathheads, is my friend Allison. I'm sure some of you already know her, and for those who don't (yet), Allison is the gorgeous woman I wrote about a few months back when we discovered she was in need of a new kidney thanks to the anti-rejection meds she's been taking since her double-lung transplant. Several of you stepped up in a way that was nothing short of breathtaking and offered to get tested. Well, I'm delighted to announce that Ms. Allison has found her donor and is now chronicling the story of her journey to transplant #2 on her wonderful blog: "Life, Coffee, and Second Hand Organs." Please check it out and send her light on this fabulous new adventure. As I pointed out to her, she's well on her way to being like 1/3 of the way CF free: now she just needs a liver, pancreas, sinus, trachea, and intestinal transplant and we'll be good to go. Any offers?

Good luck, Alli-Cat. Your friends, and especially your "cysters", are cheering you on every second. And a huge shout out as well to your gorgeous friend and donor. We could not be more grateful.

For those of you who wrote in asking, no, needing a second organ isn't uncommon in CF transplants. Other than a lung retransplant as treatment for chronic rejection, kidneys seem to be at the top of the list when it comes to second "second chances." This is because the drugs taken for the original transplant are super hard on the kidneys, particularly prograf. Most people with lung transplants take two anti-rejection drugs: prograf and something else. The "something else" varies quite a bit, but the prograf is almost universal. And because lungs have a higher rate of rejection than other organs, we take quite a lot of the stuff. Add to that the fact that many post-transplant patients (particularly CFers, who still harbor infections and other grossness in our sinuses and the rest of our bodies) spend at least some of their life after surgery on heavy-duty IV antibiotics that can also be rough on the kidneys, and you're well on your way to understanding why this isn't exactly a strange situation. Some CFers and transplantees, of course, can also require other "second" organs. My friends Patti, Gary, and Laura have all had double-lung/liver transplants because of CF, while other diseases require heart/lung transplants. There's even extreme cases like this amazing woman, who is pretty much a walking testament to organ donation at this point.

For me, I think the further I get down this crazy journey with borrowed organs, the more in awe I become of the whole process. I remember when my pediatric CF doc first sat me down and told me that "every person with CF will eventually need a lung transplant." I thought he was nutso, frankly -- not because I didn't believe him that all people with CF would eventually reach end-stage, but because I just couldn't imagine the prospect of going to sleep and waking up with a my chest. My initial response was something along the lines of "hey, this isn't Frankenstein, dude. People don't just go 'til they're worn out and then replace the parts, do they?" And for years that's what transplant remained for me: this somewhat obscure process that all my doctors were talking about, but that seemed way too science-fictiony for me to ever imagine actually happening.

When I went on the list, of course, that attitude started changing. For one thing, that was when I started meeting other post-transplantees in earnest. Because confession time: up until about 2007, I was very active in the CF world from the standpoint of speaking for the CFF, participating in studies, and fundraising. I was far less active, however, in the actual CF community, mostly because I didn't really see how we could help each other. In an ironic way, transplant not only gave me the actual gift of life in the literal sense, but it also gave me a much deeper understanding of the more indirect gifts of living that we all give each other every day. It brought me closer to a community of people that I cherish and value now beyond all reason, it bound my pre-existing community of family and friends even tighter together, and it offered me a glimpse into the way one soul (or a whole collection of souls, in some cases) can choose to save another simply by making a choice and taking an action -- even if you never get to actually meet the person (or people) you're saving.

I'm approaching 30 now and (thankfully) still on my first second set of organs. I hope to keep Bob around for a very long time, and I also hope to keep it to just the two of us for as long as possible. But even as I write those words and give a little chuckle, I know I'm blessed to be a part of what just might be the world's largest "truth is stranger than science fiction" novel ever written. All of the recipients, the donors, the will-be donors, the family and friends who have given life through their grief, and all those who have seen a loved one saved by a miracle are testaments (and in my case, a living, BREATHING testament) to the power of human action and the amazing results that can grow out of one simple choice to make a difference. Better yet, we are proof positive of the fact that humans are humans; that at the end of the day we are all unique, all individuals, and -- at least in some ways -- all interchangeable. I once heard us called "the puzzle people" somewhere, and I loved it. Because what better way to show how we all fit together, even as we all have our own place?

Congratulations, Allison! I'm looking forward to knowing the new parts of you that will emerge from this latest adventure, and to (re)discovering the you we've always loved.

And to her wonderful donor: our gratitude is beyond words. You are quite literally a part of us now, and we couldn't be happier. Thank you so much for helping to complete our beautiful puzzle.

What Are You Reading?

2011-10-20T16:56:00.005-04:00

Because I've been reading a LOT of really great stuff lately. Stuff like, oh, this for example:

Not Just a Cheerleader: Foundation Helped Drive Cystic-Fibrosis Research

and this:

Vertex Submits Application for Priority Review

or even this:

New Drug Targets Cystic Fibrosis

Talk about a fun mid-semester reading list, right?

As most of you already know, Vertex Pharmaceuticals announced a couple of days ago that it was submitting its new drug Kalydeco (formally known as VX-770, though I still think they should have gone with Em Schaller's and my suggestion of "Blue Lightening") to the FDA for priority review and approval in the treatment of cystic fibrosis patients with the G551D mutation. In English, this means that Vertex, a large pharma company that has been partnering with the CFF for several years on the development of this and other CF drugs, has asked the FDA to approve a new drug that targets the actual defect of this disease for about 5% of CF patients. The 5% in question all have copies of a specific gene mutation that causes a channel blockage in the CFTR process. This drug opens the channel, and that is awesome.

What's even more awesome, though, is that this drug might actually have a wider application than 5%. Right now we KNOW from clinical trials that Kalydeco is effective at helping folks with this specific mutation. What we don't know yet, and what the CFF and Vertex are now working tirelessly to find out, is whether the drug will work for other patients with similar mutations (commonly referred to as "class 3" mutations), whether the drug may be useful in the treatment of so-called "milder" CFTR mutations ("class 4" and "class 5" mutations), and whether the drug might be able to be used in combination with other drugs to treat more common mutations (including DF508, the most common CFTR defect and one that is officially considered a "class 2" mutation). We don't know this stuff yet, but the folks behind this new drug are already on it, and new trials are launching to figure out the answers.

So, you know, if you have CF and feel like being part of something truly magical (and maybe giving your lung function a serious boost in the process!), check out the CFF website to see if there are any relevant trials near your clinic: Find a Trial.

Because this stuff can't happen without us, guys. I promise.

I have to say that it's fascinating to me whenever "my" disease starts appearing everywhere in the media. As a CFer, I've gotten pretty used to being somewhat under the radar when it comes to common medical knowledge. I never tell anyone I have CF without having my explanation of the disease ready, and I'm certainly not prepared to tell someone and have them respond with "ooooh, yeah, I read about that the other day in 'The Cape Cod Times.'" It's a new experience for me and, I'm not going to lie, at least a little unsettling. But it's also revolutionary, in many ways, because what this means is that the world is taking notice of us: of a (relatively) tiny little orphan genetic disease that affects about 70,000 people worldwide, many of whom will die fairly young. And the only reason people would do that, guys, is that we are creating miracles. We are giving them something to believe in, to hope for, and to strive toward. Or, to put it another way, we are giving them answers to questions they never even knew they had.

Take this article for example: Smoker's Lungs Similar to Those of Cystic Fibrosis Patients. This made its way around FB the other day and I snatched it off my friend Amy's profile. The interesting thing here isn't really that smoking makes your lungs suck (we knew that, right?), but more that smoking makes your lungs suck and CF research can help. Recently CF has been all over the place because the stuff we're doing -- the money we raise and the research it supports and the science that creates -- has implications for all sorts of disease out there. Genetic ones, yes, of course, because NO ONE has EVER cured a genetic disease before, and we are so so so close to being the first. But other diseases as well, because just as I now know several non-CFers who inhale Tobi and use the Vest on a regular basis, it's clear to all of us at this point that pushing the envelope on CF treatment to the extent we are all doing, every single day, is going to change the way people think about medical research. Period. And that, quite frankly, is the sort of news I absolutely love to read, and the sort of thing that makes me -- dare I even say it? -- super proud to have CF and to be a part of this community.

So we might be a super small group of people with a super weird set of genes that is super easy for the rest of the world to ignore, most of the time. But I'm happy to say that we're also super dedicated, because we get stuff done. We're super persistent, because we don't take no for an answer -- whether that no comes from a set of doctors who said we'd never live to graduate high school or a set of pharma companies who said we'd never be profitable. We're super loud, because we know that it's not so much the size of your crowd as it is the strength of your voice and the truth of your message. And we're super close, because let me tell you guys: it's working. And if you ask me how I know that now, well, I've got a seriously good answer.

I read it in the paper.

Ask Not What a Cure Can Do For You

2011-10-08T13:12:00.011-04:00

I like to come on here every once and a while and brag about my family. This is, of course, partly because my entire family is pretty much awesome, and I love them.

The other reason I like to brag, though, is a little more selfish. You see, I happen to have a family that is 100% committed to combating, controlling, and yes, to eventually curing cystic fibrosis. Not only do these wonderful folks donate money any time they can to this cause and support me through thick and thin with the disease, but they also serve as volunteers with the CFF, they get out and walk to raise awareness, they spread hope and prayers and love to just about everyone in their communities (but also to families dealing with CF), they serve on boards and chair committees, and perhaps most importantly: they continue to ask.

My father likes to say that "making the ask" is the most important part of curing this disease. Recently I heard him speak at the CFF's Greater New York Chapter Bi-Annual Scientific Update. This was a wonderful event put on by the amazing staff at the GNY Chapter to help answer questions about the sometimes crazy weird science that accompanies this disease we all consider to be a part of daily life. The program featured CFF Vice-President for Clinical Affairs, Dr. Bruce Marshall, and Emily Schaller (founder of the awesome Rock CF Foundation), both of whom gave testimony to the amazing new class of drugs out there that will treat the underlying defect of cystic fibrosis -- that amazing triple-punch combo of Ataluran (nonsense mutations), VX-770 (currently for G551D, though may have wider use), and VX-809 (DF508); and the new drugs like VX-661 that are just entering development.

These are awesome new drugs guys, and they work. We know that. We know that they do at least some of what they are supposed to do. We know that we are closer than ever to figuring how they work best, who they work for, and what might work better down the line. To that end, the CFF continues to do studies, pledge money, and move forward in solving this equation that we worked so hard to figure out in the first place.

I say "we" there because this really has been a collective effort. 56 years ago when a group of CF parents and loved ones came together to say they'd had enough of their children's fatal disease being ignored or unfunded, one might have said that it was them against the world. As recently as the early 1980s, the CFF had a working budget of about $1 million dollars to wipe out one of the most deadly and most common genetic illnesses in the US. The numbers have grown quite a bit since then (and, not coincidentally, so has the science and the treatments and the life expectancy), but one thing hasn't changed at all: this is still a community-based effort -- OUR effort, guys -- that relies 100% on donor funding.

So WE are super close, but WE'RE not really there yet. There's a lot of stuff to be done, including studies that take a lot of money and a lot of help. And that guys, is where WE get to come in again. Because something my dad said in his speech the other night really stuck with me, and I think it's worth sharing here:

"We are no longer looking to invent the lightbulb or to find the light at the end of the tunnel. We've done that. All we need now is money to fuel our lamp. And we have to realize that in our future either one of two things is going to happen:

Either we will have to end each day knowing that someone out there is saying goodnight and goodbye to a child, a sibling, a loved one, or a friend with this disease;

Or together, WE can say goodnight, goodbye, and GOOD RIDDANCE to cystic fibrosis."

I think right then was the moment I decided to stop asking what a cure could do for me. Instead, to paraphrase our late President John F. Kennedy, I think it's time we start seriously asking ourselves what WE can do for a cure. And hey, while you're asking yourself, why not ask a couple of friends as well? And why not ask them to ask a couple of others? Because I'm pretty sure most of you guys out there have friends and loved ones, and I'm pretty sure most of them do too. And I'm sure you get where I'm going with this, because while no gift is ever too small to accept, it is equally true that no gift should ever be big enough to make us stop asking until this disease is cured.

So what I'm asking you guys to do is this:

Get involved in your own health and your own cure. Different people are going to do this in different ways, obviously, but I think the main message is that we should not wait to see what other people, other groups, and other treatments are going to do for us. WE need to be the ones out there spreading this awareness. WE need to take the information about our disease to the next level if it's not good enough yet (and here's a hint, it's not). WE need to seek out and participate in these studies as much as possible. WE need to keep on it and get out there. WE need to give whatever we can in the form of time, energy, money, space, whatever to get this job done. There's no one specific action that I'm asking you guys to take here. I know circumstances vary. But I am asking -- pleading, beseeching, begging -- that each and every one of you take a second (or maybe even a blog?) and try to figure out a way that you personally can be more involved in your own community and in the fight(s) for the cause(s) you believe in.

Because WE as CFers, as people, as a world, simply cannot wait for the cures that will save us.

WE have to be them.

Chaos Theory

2011-10-02T03:05:00.018-04:00

If you had asked me when I was ten years old where I would end up at almost 30 and what I would be doing, I probably would not have guessed correctly. And no, I don't just mean the fact that I am awake in the pre-dawn hours of a West Village morning thanks to a surprisingly effective combo of insomnia and noise from the nearby bar, though I probably wouldn't have seen that one coming either. What I do mean is that I probably wouldn't have counted on living in New York City, at sitting here late at night with my adult thoughts and a really cute little mutt curled up by my feet and another beautiful soul's former lungs in my body.

You know, all the normal stuff like that.

My family spent almost every Thanksgiving holiday when I was growing up on a special vacation to New York City. We would stay in the same apartment on the Upper East Side, eat Thanksgiving dinner at the Waldorf Astoria, and see a ton of family-friendly Broadway musicals (Cats! Phantom! Les Mis! Cats again!). We would wander through the streets and look at the windows in Saks and the lights on 5th Avenue and we would brave the 6am cold to get awesome "seats" in the front row of a New York sidewalk curb for the Macy's Thanksgiving Day Parade. We would eat hot dogs and bagels, we would ride carriages in Central Park, and we would all smile through the bitter cold, because I'm here to say right now that anyone who ever tells you that Colorado is a cold state has never, ever lived in the northeast. And, of course, we would always make our way eventually into the hallowed halls of FAO Schwartz toy store, which as far as I could see was pretty much heaven -- from the huge stuffed animal section right down to the never-ending musical strains of the store's theme song: "Welcome to our world of toys!"

Heaven, no joke.

What was NOT heaven, however, was the sheer size and chaos of the city itself, or at least not from my slightly limited perspective. My Colorado mountain girl self thought the Big Apple was pretty much the definition of scary from day one. Case in point, I kept the apartment's address written on a business card and firmly shoved in my pocket with a ten dollar bill as insurance against the terrifying fate of being alone in this super crowded place with the crazy yellow cars and the buildings that seemed to me just as high as the peaks that surrounded my hometown. I always loved the lights and the colors and the food and the musicals; I just wasn't sure about the, well, about the flat-out extremeness of the place, to be honest. I may have been a child with a whole lot of spirit according to my report cards (I always took it as a compliment), but I was also a fan of at least some sort of security and routine.

(And as an aside here, my wonderful sister attempted to solve this problem by telling me I had a special pigeon who followed me in every major city to make sure I was okay. If pushed, she would acknowledge that this particular pigeon was recognizable by its distinctive grey body and somewhat iridescent green markings, and the fact that it had wings and was always the pigeon closest to me, obviously. I was 100% convinced she was telling the truth.)

Fast forward give or take 22 years. I live in New York, more or less alone (sorry, Sampson), and I am happy. I am happy to be here. I am happy and proud to call such a chaotic mass of stunning humanity my home. And I am happy beyond all reason when I am walking the streets of this wonderful place. Particularly alone. Particularly when it's most alive all around me. Particularly, oddly enough, when it is at its most overwhelming and, yes, even a little bit scary.

Of course, when I say that I am happy, I don't mean that my life here is totally free from worry or stress. I don't mean an existence without problems, or without concerns, or without anxiety. I don't mean that it's always easy to live in this place that I've come to love for its complexity with this body that I've learned to adore for the exact same reason. I don't mean happy in the way I might mean it, for example, if we could suddenly imagine a life or a world without things like cystic fibrosis or pain or fear or any of the other things that threaten to hold us back on a daily basis. In fact, just thinking about that sort of stuff can sometimes threaten to send me off in a tailspin, whirling my way straight back to that somewhat timid little girl with the address in her pocket. Because the craziness and the uncertainty are all still out there, right? They never really go away, I guess. Not for me, and probably not for any of us, if we're really being honest.

And yet I will say it again: I am, in fact, happy. Like, really happy even. I am the kind of happy that comes from having at least one moment every single day of raw, unadulterated joy. I am skip down the street like a 5-year-old kind of happy. Dance with the dog in the living room to Belle and Sebastian kind of happy. Laugh at absolutely nothing just because the whole wide world seems funny kind of happy. Oh, yeah, and "take-all-my-meds-and-go-to-all-my-appointments-or-blood-draws-or-whatever-and-smile-because-when-all-this-is-over-I'm-going-to-be-walking-back-out-into-the-best-most-crazy-beautiful-amazing-existence-any-girl-could-ever-ask-for" kind of happy.

Yep, that kind.

The difference now, I guess, is that even though my life might still be a whirling, chaotic, overcrowded ride sometimes, I think I'm coming to a point where I can not just accept that movement, but maybe even learn to embrace it. I think at some point in my life with CF I came to realize that nothing is ever guaranteed, but that the fact of the matter is that even the stomach-dropping sense of being off balance every once and a while can ultimately make me a lot more steady on my own two feet. And even if the prospect of being alone in a strange city, in an even stranger body, with a stranger's lungs and a crazy, beautiful, strange world out there all around me might sometimes be the most terrifying prospect imaginable, it is also, sometimes, the greatest blessing I could ever imagine. It's the sort of realization that can bring me back to myself amongst the madness, and back to the beauty that seems to go hand-in-hand with an existence that is, in many ways, well beyond my (or any of our) control -- and that is undeniably worth it, in every sense.

Or maybe it's that very chaos itself that makes this once so-very-scary destination also the place where I now feel the most at home.

How Does Your Garden Grow

2011-09-19T01:36:00.003-04:00

So I rearranged the top header of this blog a bit. It's the first time ever this blog has had anything other than text at the top. Let me explain.

The image now in the header is the lotus flower, taken directly from a plate I purchased in Turkey right before I got listed for new lungs. At the time, I wrote a post entitled "Love Among the Lotus Flowers" -- somewhat of a play on Robert Browning's "Love Among the Ruins", which you should totally check out if you're so inclined. He's way more eloquent than I am, but I digress.

Anyway, when I purchased the plate from which this image is taken, the Turkish painter who made these plates by hand pointed out to me that the lotus was highly significant in his town's culture. He told me about the way this particular flower lives in water, folding itself up at night and reopening each morning with the sun in a type of symbolic rebirth. At the time I was suffering both from undiagnosed sepsis from a port-a-cath infection (and about to come home to the scariest hospitalization of my life to date, hands down) and from a severe case of preemptive nostalgia. I was acutely aware that this trip to Turkey would be my last "vacation" at all (and certainly my last time in Europe) with the lungs I was born with. I thought about it constantly, in fact: "this is the last time MY lungs will get on an airplane"; "this is the last time MY lungs will visit Europe"; "this is the last time MY lungs will get spit on by a camel" (oh yeah, it happened). Basically it was just one weird string of "this is the last time..." moments. And of course, underlying all of that premature sense of loss was the unspoken addition to my "last time" statements, which was my own unacknowledged awareness that Turkey might well have been MY last family vacation, my LAST visit to Europe, MY last chance to pretend for a few days at least that everything was totally fine. I wasn't focused on that, of course -- in true Piper style I decided to transfer all of that emotion onto something replaceable like, oh, say a vital organ -- but that sense of urgency was definitely there, and I was searching for signs throughout the trip to help reassure myself that all these potential changes in my life, those acknowledged and those best left unspoken, were going to be okay.

The story about the lotus flower jumped out at me as probably the best darn "sign" I could have hoped for. Here was a story of rebirth and healing, combined with a flower known throughout several cultures as a symbol of good luck. The colors on the actual plate are vibrant and alive, and the attention to detail in the painting makes me wish I had enough patience to master that kind of skill. It is truly a work of art for which, in my case at least, the overinflated tourist price seemed like a completely fair bargain.

In the two years since bringing home my precious lotus flower, I have come to a couple of conclusions. The first of these is that having new lungs does not mean that I will never again be "Piper" in the way I feared. True, I lost a part of myself, and think I'll always miss it on some level, however rotten it was to live with. And also true that I was lucky. I was able to release my old lungs into the world outside of myself and welcome in a new (to me) gorgeous pair without some of the scary complications that can, in reality, go along with that. But the end result, I'm happy to say, is that I feel like myself, again. And also that I feel like myself, for maybe the first time. I feel like I'm able to fully access the person I was before my surgery (both my strengths and my weaknesses, my virtues and my vices seem well enough and alive in this new, renewed self of mine), but I am also able to do things that would never have been possible with my CF lungs. Simple things. Even silly thing, really, like lying flat on my back on laughing extra hard at someone's joke and not stopping until I darn well feel like it. I've realized that letting go does not always mean losing one's connections to the past, or to the future.

I've also learned that there's more to life than symbols and signs, though I don't doubt that they can be helpful, and even necessary. They were for me, after all. One glance through my sketch pad from my pre-transplant waiting period shows multiple depictions of the lotus, all in different colors and sizes and intensities. I'm glad I had that image to hold on to, for sure. Looking back at all of that, I can still appreciate the lotus for all that it was in my life during a difficult period, and for all that it is now -- which is to say a very pretty plate. I can remember my conversation with that lovely Turkish man and artist and I can smile, knowing that he and I shared something of value that he might not have even known he was offering when he made his highly effective sales pitch. I wonder now what I would say if I could take Donor Bob on a trip and go back to that workshop, find the new plate of the same general design that I am sure replaced my own, and sit there pondering the real meaning of rebirth: replacement breathing on replacement; old eyes staring at a new rendition of a familiar depiction; old design impressing itself upon a new pair of lungs set inside a familiar body.

This blog, like everything else in my life right now and hopefully always, is a constantly evolving feature. As I move from a world of documenting my journey waiting for new lungs, to a world of documenting the joys, sorrows, fears, and triumphs of living with them, and through to a world of documenting life not beyond transplant -- not ever beyond transplant, or beyond any other part of my personal history -- but life with transplant, I thought it was time, perhaps, for one more sign. So I offer you the lotus flower, its colors slightly faded from a journey across cultures, oceans, time, and body parts, to symbolize not only rebirth and second chances, but the fragility, beauty, mystery, and downright miracles that can sometimes come from learning how to let go within the darkness.

And how to blossom with the sunshine.

You Probably Think This Blog is About You

2011-09-15T23:19:00.005-04:00

Today I received a package in the mail, and when I opened it up I found a few copies of American Way Magazine, the official magazine of American Airlines, for those of you who keep your feet on the ground most of the time. (Take it from me: it's a great magazine for those of us who like to walk around with our heads in the clouds!) American is also the amazing sponsor of the AA Celebrity Ski event benefiting the CFF. And I have to be honest here, I knew this was coming, but it was still a huge delight to open the glossy pages and see this article:

The Fight of Their Lives

Wowza, right?

Okay, I'm not gonna lie: it's always fun to see yourself in print. That part of it was great, and I'd be a fraud if I didn't admit that I went squealing around my apartment and basically called/texted/emailed/sent-out- (lung friendly) smoke-signals-to every single person I knew to make sure everyone was reading this article. That was, truth be told, the very first thing I did when the darn thing hit my greedy little hands.

After my vanity died down a little bit though, I decided to sit down and actually read the article. So I opened a copy and started to digest the words, and the meaning, behind the story. I read about two of my very best friends from Colorado, my former neighbors who also have this disease and who are living amazing lives every single day despite its nasty grip on their routines. I read about their parents, two wonderful people I have known my entire life who would move mountains for their three daughters, and who actually do so in small ways all the time. I read about the love that family shares for each other, which came pouring off the pages in every sentence. I read about my own story. I remembered. I marveled at the way the article paints me -- paints all of us -- as brave, when most of the time I feel somewhat overwhelmed and fragile. I was flattered that someone would see us in that way. I was amazed that the words rang true and that I could suddenly, at some level, recognize that spirit within myself.

But most of all, guys, I was humbled.

It is no secret whatsoever that I am this community's biggest fan. Without sounding like more of a sap than I already do on a daily basis, I really love all of y'all. You guys inspire me. You encourage me. You remind me of why I'm here and why I'm still fighting -- why I will work to kick this crazy little monster's butt until the day it kicks mine. You make me think. You make me wonder. You make me crazy. You make me cry. And you make me laugh. More than all of that, though, you make me super-duper-uper proud. Every day, every minute, and every breath.

Which brings me to the thing that I like best about this article (other than the fact that I'm wearing SUNO in the pictures!). What I like most is that this article isn't really about me, after all. It isn't even about Sam and Libby, although it probably should be. And it isn't about CF, because goodness knows I'm not gonna let that bugger steal any of the spotlight. Nope, it isn't about any one of those thing, or at least not in exclusivity. Because this article, guys, is all about us.

If there's one thing I've learned from all of you guys out there it's that it takes a village. And preferably in an ideal world, that village would be chock full of thinkers, lovers, fighters, dreamers, learners, teachers, motivators, storytellers, writers, players, and doers. You guys embody that village for me, and that, without exaggeration, is the one and only reason I am still around to be featured in this story (or that I have the breath to shriek at its arrival!). I am alive quite literally because of the kindness of the beautiful souls who gave me these lungs, but it is equally because of my own village of friends, family, doctors, CFers, role models, confidants, CFF staff and volunteers, sponsors like American, and readers that I am even typing these words. Or, to put it another way, it's because of you.

What the article really gets at, from my perspective, is that people with CF are fighters. That we overcome challenges, and that more often than not we do it with a smile on our faces. It's about how we live each day of our lives with this disease, knowing it's there, understanding what it means, but still doing some pretty kick butt things while we're here. And that isn't, of course, a trait unique to CFers -- though it does seem pretty much rampant in the CF community so far as I can see. It's really about how any group can rally together and realize its strengths and its challenges through the individual and collective actions of its members. It's about how you, me, and all of us are finding new ways to live better even when things can seem a little crazy, overwhelming, or just downright hard. And, of course, it's about life. About living it, about embracing it, and about sharing it.

I think my favorite moment in reading the article was coming across the quote toward the end, where I said in a fit of inspiration that "I didn't want anyone using this disease as an excuse not to live life." I still believe that statement wholeheartedly, but I've also come to realize that the person I was talking to when I said was myself. And the community I have to thank for showing me that there is another, better way, is composed, in all honesty, of all of you. There is a better way to live with this disease, and more often than not, that way is simply to find your village(s) and to embrace them with everything you've got -- and then, if you're truly one of the lucky (and brave) ones, to learn to be yourself within that larger whole.

With love, light, and eternal gratitude to the village that sustains me always,

xoxo,
Piper

Back to School

2011-08-30T22:43:00.012-04:00

I received an awesome email today.

Our good friends and great CF supporters over at Abbott Pharmaceuticals have announced their winners for the 2011 CFCareForward Thriving Student Scholarship. The winners (both undergraduates and graduates) will each receive a $2,500 scholarship to continue reaching their educational goals and kicking CF's butt. And, as far as I'm concerned, that's actually some of the best news ever, for a couple of reasons:

1) I know several of the winners in both categories, and I can say with absolute certainty that they are truly deserving of this prize. Congratulations to all of you from the bottom of my heart!

2) These wonderful students and students-to-be are now eligible for an even bigger prize of $19,000. Better yet, WE (as in all the members of the CF community, including every single one of you) get to decide the winners of this extra bonus prize! One Thriving Undergraduate and one Thriving Graduate Student will be selected from among the general winners, and it's up to us to help make that selection.

It's my honor to write about this contest and to support the truly awesome winners of this scholarship. As some of you might know, education is hugely important to me. The CF community is hugely important to me. Making sure that each and every person -- regardless of circumstances, physical traits, disease status, or other so-called "disability" -- knows that he or she is capable of achieving amazing things is unbelievably, incredibly, and (I'll say it again) HUGELY important to me. The fact that these CFers are out there pushing themselves mentally and physically to achieve their educational goals is both inspiring and brave. The fact that you and I have the chance to help them in this pursuit is just the icing on Abbott's already very generous cake.

Please take a moment to visit the CFCareForward Scholarship Home Page and read up on all of these phenomenal individuals. Then do your part and cast your vote for one undergraduate and one graduate student to win the Thriving Student prize of $19,000 toward their educational goals. The contest will remain open until September 30, 2011. You can vote in one of three simple ways:

Online at www.CFCareForwardScholarship.com
By text message at 30364
Via toll-free phone numbers at: 1-888-305-9808 (Thriving Undergraduate Student) and 1-888-306-9683 (Thriving Graduate Student)

Help show these folks that we are behind them 100% in creating an even stronger community of awesome, high-achieving CFers. Help show Abbott that we appreciate this generous program to help us reach our goals. Most importantly, help support all of us by showing once again that we, as individuals and even more so as a group, are waaaaay stronger than this disease will ever be. Because together we will keep on proving again and again and again that we are all of us "thriving" in our own way -- and that we plan to keep on doing so for a long, long time to come!

A heartfelt thanks to Abbott Pharmaceuticals for their continued dedication to bettering the lives of CFers through treatment, education, support, and exceptional programs like this one, as well as to all those who applied for the 2011 CFCareForward Scholarship.

Lots of love, light, and learning to all of you, beautiful people.

A Brief Letter to a Wonderful Soul

2011-08-22T23:32:00.005-04:00

To my beautiful cousin:

I'm not exactly sure I know how to this write this. After all, I'm sure you understand that the one thing my life experience growing up never taught me to be ready for was the death of my so-called "healthy" peers, friends, loved ones, and family members. If I had been asked at ten years old what I would say to you after your passing at 29, I would have thought they had the roles reversed. I would have been ready for the question the other way around -- would have probably been somewhat blase about it all and even curious to hear your answer -- but I would never have guessed that it would ever come down to this. To me sitting here, writing this, and you somewhere out there, hopefully receiving it. Which is why I have to be honest here: this is not something I planned on, and it is not something I know how to do well.

I'm not sure how to say goodbye to someone I hadn't seen in so long, for example, but who I thought about literally more often than some of the people I talk to on a regular basis. It doesn't seem fair that after all that time apart we should have denied at least some form of a reunion here on earth, especially when I consider the fact that I talked about you to so many people. Seriously, dude, you should have heard how much I bragged about you to people you had never even met. You would have laughed at me, I know it. Would have smiled at the thought of me strutting around the manicured quads of my southern university, stopping to tell pretty much anyone who would listen about how my awesome cousin back in California gave his class graduation speech in sign language. Would have thought it was amusing how the simple fact of knowing (and being related to) you made me interested in learning more about the deaf community. Would hopefully have been touched by the fact that I felt connected to you, even across so many miles and so many memories. Would certainly have enjoyed the fact that I could never again watch "Seinfeld" without thinking of you.

I don't like having to let you go, dude. I don't like thinking of you as not here. I know how much you were loved and how much you did with your short life, and I just wish it could have longer. But I guess in this sense, at least, I am prepared. Because one thing I do know, cousin, is that life is sometimes way too short, and that being a great person, having a lot to offer, making a huge impression on everyone you meet -- none of that is insurance against unfairness. So I know better, by now at least, than to spend too much time wishing that you were still here, or that I could simply hop a plane to reconnect and erase the lifetime's worth of experiences between us. I know instead that I have to wish you well on the next part of your journey, whatever that entails, and that I have to send my love with even more strength and energy now to reach you. But I also know that it is worth it. I know that where you are is peaceful, and I know that you deserve every single little bit of that, and so much more.

For what it's worth, my friend, I don't think I could ever go long without thinking of the laughs and the lessons and the light you gave to me. Like the fact that there is so much out there beyond CF that we have to fight -- that there are so many other things that can take a life too young, and that there is no such thing as competitive suffering. We are all in this together, regardless of circumstances, and I will never, ever forget that.

Most importantly, though, I want to thank you for helping to show me that there are many types of beauty in this world, just as there are many different ways to express it. Thanks for showing me that sometimes obstacles in the traditional sense are no obstacles at all, but simply the things that make us special. And thanks for proving time and time again that true communication between two people goes way deeper than just the words we speak or the way we choose to hear them. If I could do one for thing for you it would be this: that I will promise to stick it out down here for as long as I possibly can, and that I will carry your message with me for anyone who will listen, however they happen to do so.

And if I have to be at least a small part of your continued life down here for just a little while, well, then you can be my ears up there. Because it might not be the way that anyone would have imagined this picture looking 29 years out, but I promise you this, dear cousin:

It will be beautiful.

With all my love and gratitude,
Piper

Be Unbroken

2011-08-19T17:50:00.006-04:00

On the evening of June 11th, 2010, I sat munching on a three-course dinner at a four-star NYC restaurant with my mother, father, and sister. The food was wonderful and easy to swallow; it was just too bad the same couldn't be said for the mood or the conversation. My family was, to put it mildly, a little bit distressed. A couple of days earlier we had received some disheartening news from one my doctors, and I was fairly certain that we were in for at least another month or two on the waiting list for new lungs. Another month or two of keeping my life "on hold", of living with ravaged lungs, of seeing the stress and worry in my loved ones' eyes. Another month of two of gasping for breath. Another month or two of hoping for a miracle...and of praying for survival.

Um, yeah, did I mention we were just a teeny, tiny bit upset that night?

Of course, many of you know the rest of the story from that evening. You know the part about how, just as our check arrived, my phone started to ring and the tell-tale number flashed up on my caller ID. You might have heard about how we rushed out the door of the restaurant, my dad sprinting for the nearest cab, my mom already on her phone to some of our nearest and dearest. And you may even remember the pictures of all 4 of us sitting in the admissions waiting room at my hospital, proudly displaying our "new lungs" t-shirts and looking pretty stunned to be there. We were jaded from too many dry runs and near misses, and we were none of us exactly sure what to expect that evening. That we would end up "meeting" my beloved Donor Bob in the early hours of June 12th, 2010, was almost more than we would have ever dared hope.

Yes, many of you know the story because we were blessed to have so many wonderful followers out there from so many different walks of life. Then again, you might not know quite as much about that evening as you think you do. Because the part of the story that you might not have heard is how much I cried.

As soon as I got the call I ran down to the bathroom of the restaurant and locked myself inside, where I quickly turned on the sink to make some background noise. I knew my family was waiting for me outside the door, so I made it quick. I looked straight in the mirror, saw the terrified, overwhelmed, exhausted face staring back at me -- and burst into tears. Not because of what I saw there, but because I knew I would likely never see that face again. I cried, in other words, not for the miraculous blessing I was about to receive, but for the wonderful thing (and yes, my lungs were wonderful, in their own way) that I was giving up. I cried for the part of myself that I was losing.

My father recently had a discussion with a wonderful CF doctor that my family has known and trusted for years and years and years. (Note the number there: I put in three because I'm almost 30 -- yikes! Who'd have thunk that, right?) This highly trained physician and researcher mentioned to dad that, at least in his experience, most transplant patients have an emotional element to their surgery that isn't really addressed or spoken of, or at least not super often. He compared it to the PTSD often seen in people returning from conflict or war -- basically the sense of having been changed by the experience, and the crises of faith or identity that can sometimes go hand-in-hand with an important and life-altering event. I'm sure there's a more technical description for all of that (and PS, if you have one, please share it!), but for my purposes here it's enough to know that it can simply be hard, on a lot of levels.

My first conscious thought after surgery was that this was going to be difficult. It wasn't so much the physical pain that was a problem -- I expected all of that, and more -- but the strange feeling I had of suddenly being out of control. As silly as it sounds, I had an immediate sense of "missing" my old lungs. They were little brats by the end there, sure, but they were brats that I knew how to discipline, knew how to coddle, and knew how to live with. All the new medicines and machines and doctors and surroundings confused me, even after I came out of my ICU madness (and for the record I was pretty bad in there -- they really shouldn't let people with law degrees get major surgery). For a long time after the operation I had a very unsettling tendency to burst into tears at random moments. And sure, probably a fair amount of that emotion was drug-induced or pain-related, of course, but I think there was something more to it as well. Weird as it is to admit, and certainly to type and record here for the duration of this blog, I think I felt a little, well...I guess the word would be lost. People around me were celebrating, they were grateful, they were "done." They wanted me to talk about how much better I felt, and how happy I was, and in a way all of that was completely reasonable. But there was also another part of it for me. I felt like maybe there was going to be more to this whole transplant thing than simply learning how to breathe again and then just getting on with it. Or, to put it another way, I suddenly realized that it wasn't going to be all "hey, cool, new lungs, new breath, new life. Bye, mom, and have fun back in Colorado! Thanks for the prayers, everyone. See you all when I win my Nobel Prize!"

Um, yeah, not so much.

Don't get me wrong, guys. I don't want anyone to misread my message here as a major Debbie Downer moment. I am thrilled and grateful beyond my wildest dreams to have been given this chance at life with new lungs. I am firmly and completely in support of transplant, for those who think it's the right choice for them, and I am 100% certain that I made the right choice. I love and respect my doctors, trust that I am getting awesome follow-up care, and count my lucky stars daily for all the support I received (and continue to receive) from all of the beautiful people in my life. To say I am blessed would be like calling the Empire State Building "tall" -- it just doesn't do the real thing justice.

That said, I was really intrigued when my dad told me about this doctor's perspective. He knows what he's doing, and he's worked with a lot of different CF patients of various ages. His observations about stress, trauma, and transplant certainly won't hold true in every case, of course, but I think I'm ready to admit that they really did ring true for me. Despite all the wonder and the beauty and the blessings and the crazy awesome stressful happy unfuckingbelievable madness of my story, I think it's fair to say that there is a little something of me that I still think of as missing. It's maybe just something that I am learning, however slowly and however different it may end up looking, to rebuild.

And so tomorrow night my wonderful Godmother is taking me out for a small celebration, to ring in 14 months of this new(ish) existence in style and to toast the start of new things. Although I am still on IV antibiotics and still struggling with certain aspects of this process, I am also starting -- again, however slowly -- to face my own reflection, even if it looks just a tiny bit different now. And as part of that moment, we will go back to the restaurant where it all started. Or maybe where it all ended, depending on your perspective. Because I want to go back there. Because I need to find my way back, no matter how corny or dramatic it sounds. Because I am ready to move forward -- whatever that means. And because I am always, eternally and forever, beyond grateful.

For all of it.

Top (CF) Chef

2011-07-29T17:15:00.008-04:00

Just about everyone who knows me will vouch for three major things about my personality:

1) I rarely, if ever, cook anything edible other than, say, the occasional bowl of cereal or, when I'm feeling super gourmet, some sort of random stir-fry/5th-grade-science-fair experiment hybrid involving pretty much every single ingredient that happens to be in my kitchen at that moment;

2) That the aforementioned lack of culinary skills does not in any way, shape, or form dissuade me from religiously watching just about every cooking show known to man, often DVRing the episodes and re-watching them later (as if the results of the show might have changed?), plate of take-out Chinese food in hand; and

3) That I have been, at times, known to be just a little, tiny, teensy bit competitive . . . although this one is somewhat up for debate. (And I WILL win that debate, I promise.)

All of which combined led me to literally squeal with excitement when I recently received an email from our good friends over at Abbott Pharmaceuticals. Turns out that the makers of Creon (you know, the drug that allows so many of us to eat all that yummy food in the first place) are sponsoring a new program called CFChef. And in my opinion, not a moment too soon.

CFChef is designed to help people with CF meet the intense and sometimes challenging dietary requirements of living with this disease. According to Abbott, the program (which can be found at www.Chef4CF.com) is there to serve both as an educational resource for patients and families as well as a sounding board for the sharing of information and recipes. Awesome.

So where's the fun part?

Turns out CFChef is celebrating its new launch by hosting a CF recipes contest. Now I want you all to close your eyes. Imagine your favorite Top Chef/Iron Chef/Food Network Star. Imagine s/he was cooking a meal for a CF audience and needed your help. You have 30 minutes and a mystery basket filled with dried pasta, brazil nuts, gas-station beef jerky, and ScandiShake powder (chocolate OR vanilla, just because I'm feeling generous). Your time starts...NOW!

Okay, maybe not.

But the contest DOES start now, and the rules are relatively simple. Just go to www.Chef4CF.com and enter your favorite CF recipe before Sept. 28, 2011. The top four winning recipes will be selected by a panel of experts including:

-Suzanne Michel, CF dietitian
-Boomer Esiason, Former NFL Quarterback, TV Personality, and CF Dad
-Michael Symon, Food Network "Iron Chef" (ohmigod, ohmigod, ohmigod!)
-Ali Christensen, CF Patient and "America's Got Talent" Contestant (Not to mention all-around sweetheart, as I had the honor of meeting her and her equally talented sister this year at the CFF's Volunteer Leadership Conference)

Tell me you're not super excited already. Go ahead, try and say it with a straight face.

Personally, I'm not much of a chef (and my recipe for "Piper's Special Stir-Fry Surprise" is just waaay too top secret to leak out onto the internet), but you can bet that I'll be encouraging my friends and family to enter! I'm also super excited to see (and to try!) some of the recipes that I know all my brilliant, beautiful Breathheads are going to submit. And if sharing and helping out the CF community while gaining personal glory isn't enough motivation for you, ask yourself when else in your life you're likely to have a chance to submit a recipe to a healthcare professional, a sport's star, a singer, AND AN IRON CHEF all at the same time? Yeah, that's what I thought.

Seriously though guys, this is an awesome chance to help out your fellow CFers, strut your stuff, AND have some fun in a program sponsored by one of the CFF's major corporate partners. What more could you honestly ask for?

So here's to community, cooking, creativity, calories, and, above all, to curing CF. Happy cooking, y'all!

Blogger Challenge: Personal Disease Perspectives

2011-07-28T01:30:00.009-04:00

I recently got asked a question by a CFer who was worried about her upcoming evaluation for lung transplant. She wrote me a very thoughtful and articulate email about the subject in which she noted that she did her vest 2-3 times every single day, took every enzyme and pill exactly as prescribed, and worked out 3-4 days a week on average despite her steadily dropping lung function and ever more frequent lung infections. She also noted that she sees her doctor at least monthly and goes on IVs every 3 weeks or so, during which time she carefully schedules her infusions to be exactly 8 hours apart and makes sure to follow any additional treatment instructions (such as extra rest or spacing out her calcium from her cipro) that her doctor might recommend. She follows a detailed dietary supplement plan worked out in consultation with her nutritionist and, in her own words, she "tries very hard not to let [her] mind make excuses for any lapses in [her] responsibilities to [her] body." She told me all of this, and then she posed a simple question: "Should I be worried that the lung transplant team at my hospital will decide I'm not a good enough candidate for lung transplant?"

Wow.

Faced with this sort of question, my first reaction was exactly what I hope all of yours was too, meaning that I basically just sat there staring at the email in shock and then started to re-read it to figure out what part of the puzzle I must be missing. "Good enough candidate" was her exact term, and for the life of me I couldn't understand why she was questioning herself like that. After all, the entire message leading up to that point was basically a textbook description of the perfect patient, someone both mentally and physically committed to fighting her disease and maximizing her chances for survival even in the face of some pretty tough obstacles. I thought surely she must have some other underlying health issue or random skeleton in her closet (did she smoke? was she secretly selling her antibiotics on the black market?) that she wasn't telling me about. Otherwise why would she possibly be worried that her transplant team would reject her? What would drive a diligent, motivated, and obviously smart young woman into a crises of confidence so severe that she was, essentially, wondering whether a panel of doctors would deem her "good enough" for a life-saving procedure?

So I asked her.

Turns out this young lady was worried not because of her compliance record or her past medical history or anything else having to do with her behavior either as a person or as a patient. She was worried precisely because, as she put it, "I keep reading stories about how people saved themselves through exercise, compliance, and changing behavior. I feel like I've tried everything, but my FEV1 is in the toilet and it keeps sinking lower even when I do everything I'm supposed to do. How do I know the doctors even believe me at this point that I'm trying my hardest to make things better? How do I even know I'm not missing something?"

Okay, I'm gonna say it again: wow.

The moment I read those words, I started crying. I feel like this young woman summed up perfectly the frustration, self-doubt, and fear that a lot of CFers unfortunately feel when they suddenly start to lose control over their health. CF is a crazy disease in that it is controllable, to a point, through proactive care, self-responsibility, and treatment. But that whole "to a point" caveat is where things start to get tricky, because for some people the "point" seems to be around 90% control, whereas for others it seems to hover much lower. We're all pretty used to hearing that each CF case is different and that genetics, compliance, environment, and lots of other factors all play into our personal progression with the disease. But what about the fact that even two people with the exact same mutations, same FEV1, same bacteria, and same exercise program can still experience different results? How do we account for that in a medical system that, understandably enough, has to quantify things like Lung Allocation Scores and the risk of non-compliance after transplant based on general assumptions like "people with a 45% FEV1 are less sick than people with 29%" or "these treatments work, therefore patients who take them appropriately and as directed should see improvement"?

I think this email also struck a personal chord with me because of my own recent experience post-transplant. It's weird, I feel like I've been relatively healthy, but I'm also not blind: I can see that most people at my center don't seem to spend nearly as much time on IVs or fighting weirdly yo-yo like PFTs as I do. And if I'm 100% honest, hand on heart, I'd also have to admit that I've had a few "what the heck am I doing wrong?!" moments -- times when I have literally freaked out at myself for the perceived "sin" of getting another infection, or having a low prograf level, or not blowing hard enough during the testing. I actually had one moment when a PFT tech asked me if I understood the proper technique for the test and I very nearly forgot that I've had close to 30 years experience with this stuff before I stammered out a meek little "um, I'm pretty sure I know how to do it."

For those of us who might be dubbed "crazy control freaks" by others (I personally prefer the term "highly motivated, results-oriented individuals who might admittedly be somewhat crazy"), accepting that there are parts of our bodies that might not be 100% cooperative is challenging, to say the least. We have faith in the power of individual action, and when it fails we feel judged and inadequate. For others who are good at grasping the uncertainty of life with a progressive, chronic illness, the challenge might instead lie in keeping a sense of personal responsibility in the face of what seems like an invincible enemy. There's judgment there also (probably as much by the control group as anything), as well as a sense of powerlessness. Oddly enough, both of these approaches can eventually lead to the same point: a deep-set fear that our disease is in charge, and that nothing we do will ever be "good enough" to stop it. In the worst case scenario, both approaches might even cause actual non-compliance, with patients adopting the mindset that nothing we can do as individuals actually matters when it comes to fighting CF. (And yes, I know this from personal experience. I spent a good part of my teenage years convinced that if I couldn't fully control every single aspect of my CF then I was failing and should more or less just stop trying. I'm embarrassed to admit how long it took me to snap out of that trap.)

This is somewhat of an oversimplification, of course. As lifelong patients, most of us will fall into both camps at some point or another, switching sides seamlessly as we get older, or sicker, or go through different life phases -- or even adopting different views for different issues (those who might be hardcore when it comes to doing treatments, for example, but nonchalant about the power of exercise). It's more of a spectrum than a true dichotomy, in that sense, with a whole lot of middle ground in between the two extremes.

So since I couldn't really answer the question (well, sort of -- I did write that I would personally go down there and tell off her transplant team if they dared decide that she isn't "good enough" for new lungs), I've decided to put it to a panel of experts in an official "Matter of Life and Breath Blogger Challenge: Personal Disease Perspectives Edition." Here are the rules of the game:

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

Much love, light, and healthy debate to all of you, beautiful people.

Our First Dance

2011-07-20T02:37:00.010-04:00

It's funny how often I get asked about my life post-transplant as some sort of comparison to my past. In the past year or so I've had people ask if having new lungs means I'm "cured", had people wonder aloud whether I feel "better than you have in years", and even had a small subset of people worry that transplant (or at least my so far kind of up and down experience with it, I guess) might not be worth it at all -- might, in fact, be "worse than it was when you were 'just' dealing with 'plain old CF.'" And, yeah, pretty much all of those are direct quotes from various blog readers, CF friends, other friends, family members, and just curious new acquaintances.

I always do my best to answer this sort of stuff accurately, but most of the time I just find myself sort of stammering around trying to find the right words to explain the inexplicable. And then, this weekend, I was lucky enough to have one of the many experiences that helps put this sort of thing entirely into perspective. So from now on, folks, here's my answer.

My cousin got married last Saturday.

She was, just in case you were wondering, a beautiful bride. For anyone who knows her (or knows anything about my family, really) this really shouldn't be surprising -- the vast majority of my nearest and dearest are stunning both inside and out. She was also, and this is the awesome part, 100% the center of attention throughout her special day (and the many hectic -- but special -- days leading up to it). Exactly as it should be.

I watched her get married without interrupting the ceremony with my coughs or the hum of my O2 concentrator. I watched her and her beloved exchange heartfelt, handwritten vows and promises. When she asked me to do a short reading (SUCH an honor, by the way), I was delighted -- not scared or spending my time searching through medicine cabinets in the reception hall for a contraband bottle of cough syrup. I ate their fantastic wedding cake (with insulin, of course), I laughed easily at the toasts their many friends offered up to the radiant couple, I marveled at the way the rainy weather seemed to clear up just long enough for sun-dappled vows, I watched family movies of both of them that seemed to re-emphasize the joy that comes with growth and community, and then Donor Bob and I hit the dance floor for the first time together. I danced. Holy f-ing shit, guys, I DANCED!

Now, granted, I wouldn't say I danced the night away or anything. Let's not get carried away, shall we? My prograf levels have been ridiculously low lately -- even slipping to "undetectable" at one point, despite the fact that I do NOT screw around with the dosage of those drugs. As a result, I've started taking the pills and dumping them under my tongue three times a day to see if sublingual absorption and more frequent dosing can help bring all the pieces of the puzzle back together and stabilize my levels. Which means that every so often I stumbled in from some activity and sat amongst my extended family members carefully pouring the powder of several tiny little capsules under my tongue. And let me tell you all right now: for a gal who can swallow close to 20 pills without blinking an eye and with only a small sip of water, this method of time-consuming powder puffing was a little much. There's very little way to do it without attracting a good deal of attention in the process anyway. Chalk it up to family bonding, right?

I also spent a good deal of time and energy trying to make sure I didn't eat the wrong thing (thanks, immunosuppression!), or hang out too much in crowds, or bury my nose deep into the beautiful bouquets of fresh flowers my cousin and her wedding party had picked for the big day. I had to understand that I do, in fact, still get very tired very easily, that I don't have unlimited energy when I'm on a bunch of drugs, that I'm still coughing up some junk (spent a few hours of the weekend on the phone with various doctors to schedule surgeries and whatnot), and that I'm still combating a breathlessness that I hope is not associated with the lower prograf level. Yikes. I did my pills -- both prophylactic and treatment --, inhaled cayston 3x a day, was a little extra careful with my brand new port-a-cath site, and tried very hard to be a good transplant patient while still being a fun human being.

And then I danced.

Just imagine not seeing your extended family for several years (actually having cousins you have NEVER met in person) and then suddenly needing a lung transplant and calling on all of them to love you and support you. Imagine that they come through with flying colors -- going in every sense above and beyond the call of duty -- and that because of their love, their light, their prayers, their support, and their help (coupled, of course, with not just a little bit of kindness from strangers), you and your immediate family are still together, still one complete unit of a larger whole. Still, dare I say it, even relatively sane. Then imagine seeing all these people again -- all of those who have been worrying and loving and praying from afar -- and being able to walk into the room not just as yourself, but as someone who is there for another. As someone who, for one brief instant, is able to maybe pay back even just a tiny fraction of the love and attention that she received.

Kind of makes the whole prograf thing seem kind of insignificant, right?

So next time I get asked what life with new lungs is like, I think I'm going to dodge the question -- or at the very least punt it over to someone else to answer. Because I think my family would all agree that the woman who helped celebrate her cousin last weekend was not the little girl with CF that they knew as a child. And I promise you they wouldn't say that I was cured after witnessing my attempts to freebase immunosuppressants or eat enough gas-station junk to maintain my weight. They wouldn't call me a brand new person because, to them, I will always be Piper (and always the one who might be willing to throw the word "mawiage" into the poem somewhere, right guys?). And they would never say that it wasn't worth it, because, after all, I was there with them, celebrating her -- and of course they saw me dancing.

What I think they would say is that it is what it is. That the world is still turning. That beautiful, funny women are still marrying handsome, selfless men. That sunlight still occasionally makes a completely unexpected appearance at just the right time. And that thunder and rain are still equally a part of the process -- but that even those can sometimes bring just as many laughs as they do tears. Most of all I think they would say that the truest gift of all, sometimes, is the one that lets you be there as yourself, rather than simply as your disease. The one that lets you forget about your scars for one moment and focus instead on the miraculous joining of two very special hearts right in front of you.

The one that lets you finally hit the dance floor, despite your complications, in celebration of life, of love, and, most of all, of everyone who ever helped to get you through.

With love, light, and best wishes to Rachel and Chris, July 16, 2011.

The More Things Change...

2011-07-07T18:54:00.004-04:00

. . . the more they stay just enough the same to drive you crazy.

December, 2009: Picture of dressing from port-a-cath #2.

July, 2011: Picture of dressing from port-a-cath #3 (in the exact same place!).

Happy belated 4th of July, beautiful people! As you can see, I've been a little busy, but I promise to be back soon.

xoxo,
Piper

Sleeping Lessons

2011-07-01T03:32:00.001-04:00

It's 2:27 AM here in New York. My puppy is curled up peacefully next to me, dozing with his head resting lightly on my leg. He seems happy and comfortable, like there's nowhere else he'd rather be in the whole world. Most of all, he seems secure, which is amazing given the fact that just a little over a year ago he wouldn't sleep in my room at all unless I closed the door to lock him in. His preferred resting place back then was with my mom, not so much because he likes her better than me (though he does love his "grandma", no doubt about it), but because my labored breathing, humming O2 concentrator, frequent coughing fits, and restless shifting during the night made him visibly nervous. Loyal little guy that he is, he normally started out with me until I turned out my light to fall asleep, and then he was off to quieter, less scary pastures. And who can blame him? I would have run away from CF if I could have, too.

So it's nice to have him here with me again and to know that I've gotten to a point in my disease where I at least no longer scare small children and animals with my symptoms. Or, you know, at least not often.

See, as I already mentioned, it's about 2:30 in the morning my time. I was asleep until about 45 mins or so ago, resting after a long day that (once again) included a visit uptown to my favorite hospital, as well as a couple of other appointments, a PICC line dressing change, some prescription refills, and all the other fun activities that seems to go hand-in-hand with his disease. There's not a ton of crazy stuff going on right now, just inhaled and oral antibiotics for an infection found during my bronch last week, a little bit of scheduling for a new port placement and a much-needed sinus surgery, and a confusingly low prograf level. The last one bothers me a lot, mostly because I can't figure out how to make this drug stay consistent with my body. I take it absolutely everyday at the right time, and the level is still all over the place, which is -- as we all know -- one of the single most frustrating things for a patient (and probably for a doctor as well). But even with that little kink in the plan, there's still nothing really going on right now that I can't handle, or that I haven't handled about 9 billion times before, for that matter.

Only I just woke up crying. And when I did so, I noticed that, for the first time in almost a year, my dog wasn't with me. He wasn't even with someone else, since it's just him and me tonight in the apartment. He was, instead, out in my living room curled up in his bed -- the one that he sometimes uses as a last resort when he wants to sit somewhere and I'm up moving around. I was able to coax him back in here with me, of course, but I wouldn't say he was totally eager to give it another try. The good news is that he is, as of now, perfectly content right where he belongs.

And I know that I will be too, eventually. I feel relatively hopeful, at least, that things are going to get easier and that sooner or later I'll be free of infections and IV lines and nebulizers three times a day and constant appointments and procedures and whatever else. (Note to the universe: as far as that whole "sooner or later" thing goes, I'd really prefer sooner, if you don't mind.) And it's not even that those things are honestly all that terrible anyway -- after all, I did grow up with cystic fibrosis, so let's be honest: I'm used to it -- but it's just that right now I kind of wish that I could run away from it all again, and that's not exactly where I wanted to be more than a year out of transplant.

I think the strangest part of trying to manage all these expectations is that we have to have them because they give us goals, they give us drive, and they give us hope. But they also give us preconceived ideas of things that don't always work out exactly the way we plan them, and when that happens we can sometimes find ourselves awake in the middle of the night -- tired, cranky, and trying hard to convince our loved ones, friends, or even our dogs that we are actually just a little shell-shocked, not crazy.

As for me, though, I think I may need to take a cue from my darling Sampson (who, by the way, is now sleeping on his back with his tongue out, because that's how he rolls) and just do the best I can to regroup, resettle, and trust that things are going to seem less overwhelming and less scary in the morning.

Or, at the very least, that next time I wake up, he's going to be right there beside me.

- Posted using BlogPress from my iPad

The Kindness of Strangers

2011-06-15T19:51:00.004-04:00

I write a lot on here about organ donation.

The above statement shouldn't be surprising, of course, considering the fact that organ donation is the sole reason that I am still alive to type those words. When you're breathing with the lungs of another beautiful soul, it gets real easy, real fast to become a preacher for the cause. Like many people with cystic fibrosis and other serious illnesses, I know firsthand what it means to truly rely upon the kindness of strangers. And, as one of the very, very lucky group who has received an organ transplant (or a lifesaving gesture of any kind), I also understand how deeply that sort of gift can affect a person. I know the gratitude, the honor, the raw joy and emotion that comes with being rescued, because I feel it and live it every single day. And I can say wholeheartedly that my donor has made me a lifelong believer in the strength, power, and love inherent in the human spirit. In a single act he has left a resounding echo not just in my life, but in the lives of my friends, my family, and every living being that I might someday have the honor of doing a favor. He is a part of all of that, and of everything good that comes from me, ever.

And, perhaps most importantly, he has taught me through his gift that there is never any shame in asking for help -- sometimes even from a stranger.

I have a friend who was also lucky enough to receive a double-lung transplant for cystic fibrosis a few years ago. She is, as with most of my friends, a truly beautiful person -- inside and out. She is sweet, outgoing, funny, giving, playful, and full of love. She is a teacher, a daughter, a sister, a friend, and the owner of a dog who is almost as cute as Sampson. She once stopped with her sister by the side of the road to help rescue a baby deer who had been hit by a car. She is one of the first people I call every time anything goes wrong with my health. She is the only person I know with enough spunk to bring a magazine with Johnny Depp on the cover into one of her bronchoscopies so that she could guarantee herself sweet dreams. She is a huge fan of cookies and takes really good pictures on the beach near her house. She is, in short, an amazing light. And she could really use our help.

One of the downsides of lung transplant drugs is that they can seriously damage the kidneys. Sometimes, as in my friend's case, the progression of kidney disease can be fast and unrelenting, taking everyone by surprise and wreaking havoc on wonderful lives. At this point, there is a chance that my friend's sister may not be eligible to donate her kidney. The renal transplant team at my friend's hospital has advised that she begin the search for another potential donor. To say that this is a major gift in every sense would be an understatement. To say that it would be heroic, life-changing, and deeply beautiful would be equally so.

If you are at all interested in helping to spread the word about this remarkable young woman, or if you think you might be interested in potentially giving new life while hopefully enhancing your own, please contact me at matteroflifeandbreath@gmail.com for more information about how to get in touch with my friend. I know it's a long shot, but as everyone who has ever received a transplant will tell you: it is the seemingly impossible miracle that sometimes, every so often, turns out to be the gateway to endless possibilities for all involved.

Much love, beautiful people.

One Year Later...

2011-06-15T01:49:00.004-04:00

The other night, I had a beautiful celebration in honor of my donor and his amazing gift to me. Surrounded by friends and family, I laughed harder than I have in a long time as we shared a great meal and toasted each other and "Donor Bob." It was a nearly perfect evening and a nearly perfect way to pay tribute to the lungs that now allow me to walk through a museum, talk with friends, run through the rain, or laugh until I cry. And I hope, also, that it was a nearly perfect way to show Bob (wherever he is now) how much I appreciate everything he has done for me so far, and everything we will do together in the future. I hope that, if his family could have been there that evening, that they would have found it nearly perfect as well. I hope that it would have been enough.

It's hard for me to describe what this past year has been like in terms of my life and my health and my spirit. One thing is certain: it hasn't been boring. I've been in and out of the hospital twice (which, granted, doesn't seem like much, although to be fair both times were super annoying), I've had a lot of bronchs, a lot of clinic visits, a lot of IVs. A lot of stuff that, to be honest, I wasn't really expecting out of life immediately post-transplant. And it's been hard. It was hard to lose a friend while stuck in the hospital and unsure if I would even make it to her services. It was hard to make myself chuckle when my homecare nurse joked that she'd never seen anyone on so many IVs post-transplant. It was hard to deal with not understanding my new transplant body and making what I'm sure were pretty rookie mistakes. It was hard hearing the words "rejection" and it was hard to change my eating habits and hard to have to watch my family scramble to rearrange their schedules at the whims of my doctors so that they could be there for important appointments or procedures. All of that was -- and continues to be -- really, really hard sometimes.

The difference is that now when there's pain, I can breathe through it. When I feel stuck I can take a deep breath to steady myself before moving forward. When things get too frustrating now I can let out a long, dramatic sigh. When I break down and start crying about the IVs or the medicines or the sleepless nights or whatever I decide is my complaint du jour, I have lungs that will sob right along with me without forcing me to break for a coughing fit. And when I finally come around to a place where I can laugh about it all -- or when I realize that despite the madness I'm actually still doing okay, still living, still blessed, still Piper -- well, I have lungs now that will let me laugh for hours if I want to.

So I'm getting my new port placed. And I'm going to have another bronch next week. I'm going to get sinus surgery. I'm probably going to go back on IVs sometime fairly soon after I stop them this Friday, if only as a preventative measure before and after the surgery. I'm going to take every single pill, shot, antibiotic, and sinus rinse they tell me to take. I'm going to keep rearranging my life to fit the needs of my body. I'm probably even going to keep asking for help. I'll be the first to admit that I'm not going to do any of these things happily (I can think of a lot of things I'd rather be doing, starting with swimming with sharks and moving on to making close friends with the rather large cockroach my dog attempted to eat off the street today), but I can promise that I will do them.

And I promise to try and treasure every single sigh of frustration along the way for the nearly perfect gift that it is.

Imagine Me and You

2011-06-12T02:05:00.002-04:00

Dear Donor Bob:

Happy anniversary!

One year ago this Saturday (June 11th) your family -- perhaps on your prompting? -- made a decision that changed my life forever. I remember it like it was yesterday, really. Sitting at an upstairs table in a busy NYC restaurant with my mom, dad, and sister, all of sad wondering if that crazy little miracle called transplant would ever come our way. All of us, that evening, had our doubts. All of us had fears, many of which we were too tired or terrified to even admit. We were testy with each other, fed up with the process, and we were waaaaay over the whole "dry run" thing. I personally recall feeling an odd mixture of grief and acceptance; after so many failed transplant attempts (and one very rare near-miss for organs) I had silently and secretly decided that perhaps new lungs just weren't in the stars. I didn't see how I could come so close so often without a match if I were truly supposed to get an organ. I was disheartened, and more than that I was really, really tired.

Tired of not being able to breathe.
Tired of missing out on my own life.
Tired of watching my family struggle.
Tired of the unknown.
Tired, most of all, of the waiting.

That all changed with a single decision, a single act, a single, precious gift from someone who had never even met me -- who was, in fact, unaware of my very existence. It changed, quite literally, in a phone call, in a breath, in a heartbeat. My sister claims she knew the second the phone rang that this was "THE Call." I was admittedly a bit more skeptical, and all through the hectic race to the hospital and then the even more hectic scramble to get me to the OR in time, I was fairly certain that, once again, something would come up that would keep me from receiving this priceless treasure of new life. I was, to say the least, a little bit jaded by that point in the process.

But I was also wrong. (And never, by the way, have I been so happy to write those words.) We were a match made in heaven set up by something far larger than ourselves -- and with a little help from some very clever matchmakers at my hospital. And if I sound a little overly sappy with that statement, well, I guess you're just going to have to bear with me on that one, because I can honestly say that you and I were meant for each other.

Bob, you came into my life at the perfect time, rescuing me not just from failing lungs but from a failure of spirit in one sweeping, gorgeous motion. I went to sleep that night somewhat broken, and I woke up not just restored, but also amazingly -- and irrevocably -- blessed. Because when I opened my eyes again on the morning of June 12th, 2010, I was not only wholly myself again; I was also imbued with at least a little bit of your light. And that, my friend, is a truly awesome thing, let me tell you.

And I really have to say, Bob, I couldn't have asked for a better partner for this journey. I mean, come on, how many men do you know who would tolerate a woman with some super disturbing little live-in "friends" (yes, pseudo, I'm totally looking at you) and put up with constant attacks from her very moody sinuses? Not many, in my experience. And yet you, friend, have weathered it all with a grace, good humor, and determination that even I find inspiring. It's truly breathtaking to watch you bounce back after every obstacle in a way my old lungs, wonderful and loyal as they often were, could never have done in a million years. I mean seriously, dude: way to breathe! And rest assured that I find it all beyond impressive -- even when the road gets, well, a little bumpier than you (or I) might have originally planned.

So today, beautiful soul, we celebrated you. And in case you missed it (which I know you didn't, because I could totally feel you with us): it was a celebration worthy of a hero. All of my friends absolutely loved you (they've had such fun getting to know you over the past 12 months, and were excited to finally raise their glasses to the man behind the magic), and you were a big hit with my family as well. All of which means, of course, that we're going to have to stick together. We're just too good an act to split up now. And hey, let's face it: we'd never be able to live without each other, anyway.

So to my friend, my hero, my beautiful stranger/soulmate: thank you for everything. I could never say it enough, but I hope that you know that because of you, I will forever breathe in beauty.

I have your lungs, and you, my friend, will always have my heart.

With Deepest Love and Gratitude,
Piper

The Conscious Patient Guide to The ICU

2011-06-08T10:03:00.001-04:00

I am sitting in the thick of a vast, foreign jungle.

No, not literally, of course (though that would probably be more fun). The truth is that I'm just hanging out in the Medical Intensive Care Unit (MICU) of my hospital. They moved me down here for a desensitization that, thankfully, went off without a hitch last night -- thus leaving me one of the very few fully alert and conscious patients in here. I'm not complaining, by the way.

I have -- also thankfully -- only limited experience with ICUs in general, and definitely never have I felt so much like myself while in one, so needless to say I was curious. What is this strange underbelly of the hospital like, anyway? What are its customs, who are its people, and how exactly do they expect non-bed-ridden patients to use the toilet? Wracked with these sorts of questions (and labeled with a decade's old allergy to sulfa drugs) I decided the time had come to explore this relatively uncharted territory. And for those of you who might someday dare to follow me, whether by necessity or to satisfy your own super weird need to see it for yourself, I present "The Conscious Guide to the ICU."

1) There's no harm in asking.

Nurses and doctors say a lot of things, and generally patients are expected to ingest whatever is said and acquiesce to any requests while simultaneously absorbing important information. For example: "I need to put a heart monitor on you to make sure we can track any cardiac reactions to the drug, so if you could just remove your clothes and put on a gown we can get started." The nurse said that to me yesterday, and then she turned away and started playing with my IV pump. I didn't question the first part (the whole point of the ICU is, after all, increased monitoring), so I just asked two simple clarifications: what cardiac reaction were they looking for (answer: anything abnormal whatsoever) and could I continue to wear my own pants? She was surprised at the last part, but then shrugged. "Sure, I guess. There's no reason you have to change fully, it's just sort of standard in here." Bingo. Having your own clothes on makes everything better and less, um, uncomfortable.

2) Get creative.

The ICU is a lot of very wonderful things. It is a place of caring -- intensively, even. It is a place of healing. It is a place where you can lie awake at night (assuming you're clever enough to figure out when it IS night, since the lighting in here never changes) and be gently rocked to sleep by the sweet symphony of varied beeps and the whispery flush of a sink toilet. Heck, it is a place of sink toilets, and that alone should tell you just about all you need to know.

What the ICU is not, inherently, is a place of great humor. This makes sense, seeing as most of the people in the ICU are there for something serious, and are appropriately sad. If, however, you are not there for something super serious and/or you would simply prefer not to be sad, it can be helpful to supply your own humor. Examples that have worked for me include: shocking the ICU doctors by engaging them in any form of non-medical conversation (I spent 15 mins discussing the Comanche Tribe with some poor guy, after which we segued seamlessly into Kim Kardashian's ridiculously large engagement ring), playing "ICU -- Do You See Me?" with people walking by your room and staring in (basically involves matching their curious, concerned expression and staring straight back at them in an intense and pondering fashion as they walk past the glass), sketching designs for a better hospital gown, and pretty much any activity involving the aforementioned sink toilet. Bottom line: you have to at least TRY and keep things in perspective, and nothing is too silly or too stupid if it helps get you there. After all, you're not dead, it's not the end of the world, and even hospitals can occasionally be funny. I promise.

3) Stay active.

"Active" is to the ICU as "good" is to hospital food -- which is to say that no sane person would ever use the two in the same sentence. I get that. No one is suggesting you run a 5k in the hallway and, if your hospital is anything like mine, you might even find yourself significantly hindered in getting out of bed at all. So far in this stay I've stood up exactly 3 times -- each to visit the . . . um, sink. Nothing else is allowed.

So do what you can and what you feel up to, within reason. Swinging your legs, stretching, ankle circles, kicking the person who wakes you up at 4 AM for a chest x-Ray (it happened) -- these are all great forms of ICU exercise. Jumping jacks on the self-inflating, bedsore-reduction mattresses? Probably not wise. But I know for me personally a lot of my frustration in hospitals stems from feeling helpless and/or disempowered. Movement helps with this, and it helps with pain, and it helps keep me relatively strong so that I don't get discharged and find myself unable to walk and enjoy my new freedom. So it's worth it, plus it looks impressive.

4) Patience is an (overrated) virtue, darling.

Yes, I know you want to be a perfect patient. You want all the nurses and doctors and orderlies and that guy who empties the sharps container to love you -- and well you should. You are, after all, a lovable group. Plus being kind is always a bonus. But there's a difference between being kind and being invisible, and in the hospital it can sometimes feel like a fine line. Keep in mind that there is a LOT going on around you at all times in this place, even if it feels to you like very little is getting done. In an average hospital you're probably competing for everything -- from an available bed to a slot for a procedure to your nurse's attention -- with a minimum of 5-10 other people. I discussed with someone yesterday how every hospital process takes a ridiculous number of steps, and of course any patient also knows that there is always a limited window of time in which to get something done before you are inevitably trapped for yet another day in the hospital. I like to imagine a large herd of hippos with only a small pond of water that replenishes each day.

Guys, be the hungry hippo. Or the thirsty hippo. Or whatever. Just figure out a (nice-ish) way to stand out from the crowd, and figure it out soon. Case in point, I am now asking my nurse very sweetly every single time she comes in my room when I am going to be leaving the ICU to go for my PICC placement. And when I do finally go, and get back, I will begin asking (with equal frequency and equal sweetness) when I can go home. I will not be mean, and I will not take her away from her other duties, but I will insist she prioritize my case, too. And at the end of the day she will probably still like me anyway -- though if she doesn't I guess I'll never know, seeing as I'll be at home.

And last but not least:

5) Keep your eyes on the prize.

You know why you're in here and what you're fighting for. Use it. Seriously. Yesterday I forced Ben into a 10 minute conversation about random NYC restaurants we have yet to try. He thought it was super boring; I thought it was a lifeline. I'd talk about the weather right now, quite seriously, just to remind myself that outside these walls it is hot, and people are outside, and they're riding their bikes and walking their dogs and kissing their lovers and laughing with friends and thinking that maybe they'll go out for a glass of wine tonight before dinner. I love these people. They are my friends, my family, and my fellow NYers. I love that they're out there, living. And I can't wait to rejoin them in that universal activity.

Again.

- Posted using BlogPress from my iPad

6 Stages of (Hospital) Grief

2011-06-06T12:31:00.001-04:00

I've noticed that every time I check into the hospital, I follow basically the same behavioral pattern. It's a fairly simple formula. First comes the moment when I suspect that something might be wrong and that it could, conceivably, be bad enough to land me in-house (keep in mind that I do most of my IVs and procedures as an out-patient, a personal preference that has, at times, both angered and delighted my various doctors through the years). As soon as I suspect this sort of "bigger" problem I start to prepare mentally, by which I mean that I become delusional and convince myself that I'm an extremely calm and serene person by nature (all evidence to the contrary aside). This part of my "Personal Patient Process" tends to involve lots of faraway, thoughtful gazes and the overuse of cliches like "it is what it is" and "things could be worse." On a more productive level, it is also characterized by an increase in my motivation to attack the problem itself, all in an attempt to avoid what is typically by that point inevitable. I do awesome things like cutting out all sugar from my high-fat, high-cal diet, or throwing myself even harder into exercise. Neither of these things has ever proven helpful, but I do them compulsively anyway, in the same way that I continue to pretend my dog might someday stop begging at the table. Sure, it's a long shot, but I'm a big fan of hope.

At some point during stage 1 of the process, I will also call and alert my doctor to the problem, assuming he doesn't already know. This part is tricky, because I tend to dislike it, but I'm also not suicidal, so I know it needs to be done ASAP. (I should note, at this point, that I only dislike it because I'm not a huge fan of feeling sick at all, much less admitting to anyone else that I feel that way. It is not in any way, shape, or form because I dislike conversations with my doctor generally, nor a statement about my team.) The other thing that makes this part tough is that it typically leads to stage 2: the moment when my doctor decides I need to be admitted, and tells me as much.

This is when I get sad.

Honestly, I think this moment is almost always the saddest part of my entire hospital stay, regardless of what comes next (with, of course, a few very notable exceptions). This moment to me represents pretty much everything I dislike about being a patient. It's the time when I'm forced to accept (again) that nothing I may have planned or wanted to do or hoped for will ever really trump CF. It's the moment when I have to acknowledge that everything I truly love and adore about my life is also wrapped up with a lot of things I truly dislike, and that the former simply isn't possible without the latter. It's the moment I remember that chronic illness is often way more than just a series of minor, fairly insignificant challenges or inconveniences; it has a much darker side too. And while, yes, I completely acknowledge that all of that might sound a little dramatic for a few days trapped in a boring hotel full of mostly much older people with a really bad meal plan, I still stand behind every single word of it. Because for me, personally, the hospital is very much wrapped up in the notion of submission to my disease -- something I think it's pretty obvious I don't like to do -- and I haven't yet found a way to reimagine that relationship.

Luckily for everyone involved, when stage 2 passes things tend to get better. Stage 3 in the hospital is kind of like a homecoming: It's annoying and hectic and definitely overblown, but I also get to see people again and I haven't quite remembered yet why I dislike being locked up so much. I'm also a little high on myself at this point for doing the smart thing and for being so darn nice. Blown IV? Laugh it off. 3 AM wake up call? What the heck, I slept fine yesterday in my own bed, so it's cool. This is when I put out my visitors welcome mat and vow that THIS time I'm totally going to wash my hair every other day while I'm in here. Depending on the length and intensity of the admission, this phase can last anywhere from 5 minutes to 5 days. Maybe longer, in a perfect world, but otherwise 5 days tends to be just about my upper limit.

And then we come to stage 4. The Wall.

Stage 4 isn't so much a state of mind for me as it is a trigger -- one relatively large event or a series of much smaller things that leads me to decide I've had enough. If I'm lucky, I can feel this stage coming on from a few hours away, and sufficiently warn people that The Wall is coming. I can suggest that maybe people might want to consider not visiting for a day, or running in, dropping off food, then dashing to safety until the next meal, much like I imagine the unlucky fellow who has to feed the bears and tigers must do at the zoo. And while it would be a fair statement to say that I'm not proud of the person I sometimes become during this particular stage, it's equally fair to acknowledge that I do, for the most part, refrain from causing any serious damage. I might snap, but I typically feel so guilty about 5 minutes later that I start entertaining crazy ideas like sharing my smuggled in non-hospital rations or allowing the wounded party to sit on my bed. Insanity, I know.

For the rest of the stay after The Wall, I typically slide seamlessly between some less-patient version of myself and a raging nutcase. Stage 5 is therefore lovingly nicknamed "The Asylum", as it more or less consists of me plotting escape and everyone around me deciding that I should probably stay put for a few more weeks, albeit most likely in the psychiatric unit upstairs and not the transplant floor. This is also the only part of the program that may or may not involve costumes (long story).

In the end, of course, I always get back to the same truth, which is that while there is plenty to complain about in here, there is also always plenty to celebrate as well -- such as friends and family willing to suffer through my antics. And even though this may not be the most fun place for Bob and me to hang out as we approach our one-year anniversary together (!!), I will say this: it is the right place. For now, anyway.

Which brings us to stage 6: Acceptance. Not that this is where I belong, but that it will bring me one step closer to getting there.

Stay well, beautiful people.

- Posted using BlogPress from my iPad

The Challenge of a LIFETIME

2011-05-30T16:39:00.011-04:00

Some things in life just don't come along often.

For example, it is extremely rare for me to start off a thought, sentence, or blog post with the sentiment, "One of the reasons that I'm happy I have CF is . . ." That's not to say that there aren't certain elements of having this disease -- and sharing this experience -- that I feel grateful for, but I am gonna go ahead and admit that I am not, in any real sense of the word, all that grateful to have been born with a fatal genetic disease. But, like any rule, there are exceptions, and this is one of them.

One of the reasons that I am happy I have CF is, I get to meet some awesome, incredible, inspiring, amazing, and downright fabulous people. People, for example, like all of you.

Or people like Mike Freemantle, whom I had the total honor of meeting a couple of weeks ago. And though Mike doesn't have cystic fibrosis himself, I still have to give credit where credit is due to CF for this meeting, because Mike is the kind of guy who . . . well, let's just say that Mike is a man of extreme energy. It's the kind of energy that leads people to push themselves, to challenge limitations, and to go beyond their own experience. In short, it's the kind of energy that connects everyone who has ever pressed against the outer realm of the extraordinary -- whether by illness or by choice or by anything in between.

Oh, yeah, and it's also the kind of energy that might lead someone to look at an ordinary road bike and think, "Hey, I think I'll hop on that sucker and take a leisurely 21 day coast-to-coast tour through 13 different states. And what the heck, maybe I'll raise about $50,000 for the Greater NY Chapter of the Cystic Fibrosis Foundation while I'm at it in honor of my friend (and fellow amazing rockstar) John. You know, just for kicks."

Right.

All of which leads us to yet another one of those amazing events that just flat-out doesn't come along often enough. Because this morning at the ridiculous hour of 6 AM, Mike and many of his supporters stood in the even more ridiculous sudden rain shower that swept across Times Square getting ready to launch what must have initially seemed to many people like the most ridiculous thing of all. One man, one bike, one big RV with the Great Strides/CFF logo proudly displayed, and more than a thousand miles between Mike and his final destination. But anyone who knows CF knows that the seemingly impossible is sometimes the most important, non-ridiculous goal of all. And anyone who knows Mike knows that the same is true about him. Because believe it or not he's done it before, and now he's decided to do it again.

Only this time, it's for all of us.

Below are a few pictures of the magic behind the madness (and the man behind the magic). Please, please, please check them out, then go to www.freematour.com to join and support Mike on his cross-country bike ride for a cure. He'll be keeping track of his experiences, his route, his pictures (the man has a camera strapped to his handlebars, people!) and, of course, his fundraising.

Because things like this just don't come along often -- and when they do we should all be so lucky as to have the chance to go along for the ride.

Only 13 states -- because he's an underachiever

Flier used to raise awareness of the cause

The one and only FREEMATOUR BUS in Times Square

Gosh, that's a handsome . . . logo. Um, yeah. The logo steals the show.

1 Bike, 1 Bus, 1 Rainy Horizon

"What, it's so wet that even Times Square is completely empty? Whatever. I've seen worse."

Start Your Engines

One small pedal push for Mike. One awesome push for CF awareness

Mike, you've got the wind of 30,000 beautiful people at your back, dude. Best of luck, safe travels, and, above all, thank you. For the chance -- and the challenge -- of a lifetime.

Because of You

2011-05-22T21:44:00.004-04:00

Dear Cystic Fibrosis:

I know it's been a while since I've written you, though I honestly can't say I'm sorry. It's true that you are not my favorite penpal, but in my defense, you've been kind of busy -- that whole "wreaking havoc on innocent, beautiful lives" day job of yours seems to take up a lot of time, plus I have yet to see you take a vacation. It must be rough knowing that so much is riding on your every move, that you literally hold the health and happiness of over 30,000 people just in the US alone in your hands. I'm not sure I would want that kind of pressure, to be perfectly honest, though I like to imagine that if I did have such power I would use it for good rather than evil. But hey, to each his own, right?

Anyway, I thought it was probably about time for you and me to get back in touch. In part this is because I think it's only fair to let you know that you are, once again, being a very royal pain in my butt. Not that you ever stop, obviously, but it feels like sometimes -- every once in a very blue moon or so -- you seem to back off just enough to give me a false sense of security. You lie low for a few days and I feel better, and my friends seem healthier, and no one is dying or sick or stuck in the hospital, and for just a few brief moments I remember that there was a time when I thought you maybe didn't matter quite so much. That maybe, if I kept my eyes shut and wished hard enough for long enough and with enough faith in the power of miracles, that you would just disappear. And yes, I feel weird writing that, even to you. It seems strange to have to tell someone (or something, rather) that you hate them. But I do, CF. I really, really, really do.

I hate you for what you do to my friends, for the lives you've taken, for the joy you seem to take in hurting families, worrying loving parents, leaving behind dedicated spouses, and doling out way more pain than any young child should ever really have to endure. I get it; I understand that you are part of life and that, like anything, you have your beauty. I see how strong you make people like my friends, who are facing sickness or transplants or second transplants or new additions to their families when they themselves can't breathe. I see the light that you spark in them and it is almost enough to make me think you have something to offer -- but then I remember that each of these people are strong DESPITE you, not because of you. And then I hate you all over again, and I realize that I simply cannot wait until the day when their collective light is allowed to burn even brighter without your darkness. Because let me tell you dude, it is going to be one hell of a sparkle show when that moment finally happens.

Which brings me to my second point, CF:

You don't stand a chance.

Nope, sorry, not kidding. I absolutely mean it. And as proof I've spent the last couple of weekends at events that have raised literally hundreds of thousands of dollars to eradicate your presence. I've stood next to friends and family members who have lost a loved one and who are still so dedicated to kicking your butt. I've watched in awe as one small child took her place in the center of a huge group photograph -- her future as bright as the smiles on her team members' faces. I've had the chance to be personally inspired by Mike Freemantle, who is literally riding his bike across the country to raise money for the Greater NY Chapter of the Cystic Fibrosis Foundation. I've seen people walk in the rain, people walking with strollers, people dressed in costume, and people coming together in mutual love, hope, and celebration.

And all of this, CF, is not because of you at all. It is despite you. It is not because you make us sick, but that we are strong despite your efforts. It is not because you rip apart our community, but the way we rally despite these great losses. It is not because we have no faith, but that we are hopeful despite your nasty tricks. And it is not because you weaken our spirit. It is that we will always be the bigger, faster, and more determined team -- despite it all.

So I don't mean to add to your workload, little monster, but if I were you I would consider taking up running -- and pretty fast too. Because if the heart, soul, and dedication that I've seen these past few weeks alone is any indication, you're in way over your head with this one.

And unlike the rest of us, CF, you are running alone.

Sincerely,
Piper

Our Little Monster

2011-05-17T21:54:00.004-04:00

Got my biopsy results today.

I have what my transplant clinic described as "minor inflammation," which could be caused either by "true" rejection or just kind of brought on by the other part of the news, which is that my goo culture from the other day grew out our old friend pseudomonas. Talk about a party crasher. Anyway, the combined effects of these results is more IVs (polymyxin and aztreonam) for 3 weeks and a 2 week taper of prednisone until I get back to my maintenance dose of 10mg.

Luckily, the pseudo is just hanging out in my airway -- a sign that once again this is all about the sinuses and much less so about the lungs. Unfortunately, the added rejection/inflammation (it's been labeled as A1 rejection) means that I have to postpone my sinus surgery for 4-6 weeks to give my system some time to reset itself and avoid extre infection risk. And I also have to get another bronch in 3 weeks, which obviously isn't the best news in the entire world, though honestly they feel like old hat now. I think a part of me feels weird whenever I'm not on versed after the past year.

My general sense right now is that things, quite honestly, could be worse. Not sure if that's just because I have so many friends who actually are doing worse than I am, or whether it has more to do with the fact that actually facing up to the past year would involve going somewhere I just don't want to go right now. I think it's the former. Weirdly, the one emotion I don't feel right now is fear. I feel anxious to get to the other side of this bridge, impatient, frustrated, hungry (thanks, prednisone!), kinda whiny, and a little overwhelmed. But I don't feel scared. Somehow or another the last couple of years of living in constant infection have coupled with 29 1/2 years of life with cystic fibrosis to make me much more prone to sarcasm and humor in the face of illness than tears or nervous worrying. And I still haven't figured out if this is a good thing (because it keeps me sane and productive) or a bad thing (because it inhibits me from taking things seriously), but I can tell you without question that it is, for better or for worse, a Piper thing. I have the feeling it might be kinda rampant in the CF community in general, to tell you the truth.

At any rate I'm still at home vs. the hospital, I'm still confident that my doctor knows what he's doing, and I'm still at least somewhat on this side of the whole "not crazy" spectrum -- though that last one might well change after a couple days on high dose steroids, believe me. And for all of those things I remain, for now and for always, extremely grateful.

For all those other things, though, I'm not grateful at all, which is why I wrote a simple (and uncharacteristically "R" rated for my normal internet chatter) status update on Facebook this afternoon:

dear CF: fuck off, you little monster. thanks.

That one little sentiment got more "likes" more quickly than anything else I've posted on there. Ever. Which means that to anyone who has ever wanted to scream, cry, kick CF where the sun don't shine, and then run away laughing: don't worry. You have no idea just how not alone in that you are.

Much love and happy hunting to you all, my beautiful fellow monster fighters.

The News

2011-05-15T23:19:00.010-04:00

In case you haven't noticed, there's been a lot going on around here lately. And believe me, it's fine if you really haven't noticed, because I've been a little absent and I realize that my last post was a little, um, cryptic? But the point is that whether it's been obvious on this blog or not, there has been (and continues to be) a heck of lot going on in My So-Called Cystic Life -- some of it good and some of it bad. So I thought I'd take a second to catch my beautiful breathheads up a bit on all the news in my life.

The bad news is that I remain on and off IVs every 2-4 weeks like clockwork, and have since my transplant almost a full year ago (before that I was just "on" though, so maybe this is better?). I'm always a little tormented about what (if anything) to say about that, but the simple fact is that I never promised this blog would be easy. I never promised it would be 100% positive. I never promised it would always be fun. What I did promise, however, is that it would be honest, so I figure I should just bite the bullet and type the truth. For the past few months my docs have been hardcore pushing a new drug cocktail on me, consisting of mostly polymyxin and aztreonam as opposed to my usual aztreonam/merrem/imi/cipro/cayston/levaquin/minocycline/whatever combo. It's been . . . um . . . well, let's just say that it's been interesting (and that it's involved enough walking into stationary objects to make The 3 Stooges extremely proud). It's also involved a couple of rounds of cefapime (neither of which lasted more than a couple of days before the drug was pulled due to allergies) and a whole host of other "fun" excitement from nausea to low WBC counts to weird pigmentation issues. (Seriously, if one more person asks where I got so "tan" they're going to get a squirt of polymyxin in the eye!) So, um, yeah . . . the past few months have been decidedly "not boring" from an infection standpoint -- although one has to wonder when the infection starts to just become "normal" and being healthy actually becomes the "weird and unsettling" part. I'm trying hard not to slip into the mindset, believe me.

The good news is, though, that while all of this has been pretty annoying, I really can say that it's been exactly that: annoying. As in, not life-threatening, not super scary, not mind-blowing, and not "oh my goodness get me out of here because I just don't know if I can take this anymore" style frustrating. Just annoying, plain and simple. My kidneys aren't failing due to the drugs, my lungs seem to be holding up just fine despite the onslaught, and my gut is . . . well, let's just acknowledge that they didn't give me a gut/pancreas transplant and leave it at that. (And to the CFers out there: don't pretend you don't all know exactly what I mean by that, by the way!) From a major transplant complication perspective, in fact, I really don't have much to report on here at all -- and for that I am beyond grateful.

The new news is that I did have a bronch last Friday, and after it was over I did in fact make it over to see my ENT in one of my hospital's outpost buildings way the heck across town. For those of you who may have already had the -- ahem -- pleasure of experiencing a bronch, you'll understand that going anywhere directly afterward defies all normal laws of logic, reason, and fentanyl. Nonetheless I was able to make it, thanks in no small part to my lovely sister, and while there I learned that my sinuses are pretty much completely blocked. As in, there was no black on my CT scan, in any of my sinuses. At all. So we went ahead and scheduled sinus surgery, which I'm really hoping can be done on an outpatient basis, and I think we're all hoping things get better after that.

As for the actual bronch, it was uneventful. Doctor found some slime in my upper airway (thanks again, sinuses!) and we're checking for rejection due to a very small dip in my more recent PFTs. The goo culture and the biopsy results should be in next week, but until then I'm choosing not to worry and to focus on things like CF awareness month and Great Strides instead. Not that I have anything against sinus slime, per se, but, well, it just doesn't make for a very pleasant weekend to dwell on that sort of stuff.

So that's the update -- 100% free from any crazy wordplay or other random piperisms. And I have to say that it really does feel amazing to write it out; to know that I have the sort of friends and community who is ready (and able) to receive this slimy, gooey, messy story of tangled IV tubing and annoying antibiotics and perpetual procedures without judgment and without shock or pity or total confusion; and, if i'm lucky, to maybe even earn the chance to let it go. And this should have been old news to me, I'm sure, because I don't know how many times you guys have taught me this lesson in the past, but old habits die hard and I think I will forever be the girl who would prefer to be cryptic than to be (almost) heartbreakingly honest.

Sorry guys, I had to do it.

So thank you, all of you, for teaching me honesty and for reading -- even when the going gets admittedly tough. I wish I had better words to say it. I wish that I had half the force as all of you together have. I wish that I could be as big of an inspiration for this community as it has been for me. And, above all, I wish you all lots and lots of news now and for a very long time into the future.

And all the friends you need to get you through it.

(Almost)

2011-05-09T23:31:00.008-04:00

Well, here it is, beautiful readers. Spring has finally sprung in all its (almost) warm weather glory, the West Village is full of (almost) graduated seniors who are all-too-ready to revel in the (almost) finished school year, my shorkie is looking (almost) skinny in his new summer haircut, and I've (almost) hit another milestone in this crazy, winding, wonderful and (almost) mind-blowing journey that we call post transplant life. By which I mean, of course, that as of this week I am (almost) at my 11-month transplant anniversary.

And, oh! readers, what a difference an (almost) year makes!

Because (almost) 11 months ago today I was still trying to recover from an (almost) transplant (aka the infamous "bad dry run") and was spending most of my time just struggling to breathe on (almost) destroyed lungs. The remaining hours were a toss up between the sleep that was my (almost) favorite activity during that period of my life, the treatments that took up (almost) 6 hours of every day, and the desperate attempts I made every so often to keep up with something that was (almost) like the life I had known before CF got the best of me. And, when I got really lucky, there were even one or two moments out of every day when I could (almost) forget what was happening to my body, thanks to the amazing community of friends, family, and yes, even doctors who (almost) always knew (almost) just the right things to make me feel (almost) better.

Or, to put it another way, life back then was (almost) all about the uncertain: those all-consuming goals that seem to lie almost within our reach, the destination that is almost around the next bend, and that pesky arch of pure color in the sky that promises a pot of gold if we can make it to that spot just almost right ahead of us. And it was, in a strange sense, an (almost) perfect way to live -- if only for the fact that it forced me to keep my heart in the moment and my eyes on the constant "almost" that was always just a little bit beyond my own horizon

Oh, yeah, and it was also (almost) 11 months ago when I sat down and wrote this:

In all seriousness though, I'm sorry for being such a bad blogger. I never meant to be gone for almost a month. I promise it started off innocently enough and with the best of intentions -- by which I of course mean that I got sick and decided to spare you all the invite to my personal pity party. Not to mention the fact that I also started high-dose prednisone to combat said sickness and, well, let's be honest: blogs written on steroids should probably come with their own special warning label. So instead of going through all that, I decided to take a little break. And gosh did I ever spare you guys a lot. Seriously, you can thank me later. ("It's My Party", posted May 12, 2010)

Wow. I guess sometimes 11 months can make (almost) no difference at all, huh?

Because the truth of the matter (or at least my truth, because that's an important distinction), is that while transplant has been (almost) unbelievable and sometimes feels like (almost) a cure, there are still times when I think that maybe almost just isn't good enough. There are times when I still --- even (almost) a year after receiving my beautiful, gorgeous, miraculous gift of life -- have difficulty writing on this blog. It's as if I'm (almost) afraid to share the fact that I've been back on IV polymyxin for (almost) an additional month now, or to admit that this means I've gone (almost) the entire time since my transplant still soaking up heavy-duty antibiotics like it's my job. And sure, I could mention the fact that my lung function right now is (almost) as good as I've ever seen it or that or that most days I wake up feeling (almost) "normal" (whatever that is, anyway). I could go on and on about how I'm (almost) able to feel like a dependable human being again because my 4ish-hour medical appointments are dwindling in number to an (almost) tolerable level where I (almost) don't leave in a murderous rage and am (almost) able to imagine that I have a life outside being a full-time transplant patient. Or, of course, I could let you in on the flip side of all that, which is that I (almost) always get home from even a few hours out exhausted because of all the side effects that come with my (almost) overflowing medication cabinet.

And believe me guys, I almost sat down to write about that all about once every single day for the past month. Almost.

I think the real truth of the matter is that there are always (almost always?) at least a couple of "almosts" in the mix when you're dealing with chronic illness -- or even with a chronic illness brought out as a sort of Hail Mary pass at a "cure" for the original chronic illness, as I'm now learning. There are always going to be issues -- some that are (almost) ignorable and others that are much more serious -- surrounding my own health and the health of those who share my disease. There are always going to be questions that don't have easy answers, or days when it all seems to come crashing down on top of us, or even those where we seem to come crashing down ourselves. There will be moments when we are overwhelmed by how much things have changed for us, and moments when we are equally as overwhelmed by how much they really haven't. And when it comes to all of that, I can say with absolute certainty that these are universal truths of human experience, every one of them. There's no almost about it.

And so tomorrow I will go to my transplant clinic, where I am (almost) sure that my doctor will stop my IVs and allow me to wait it out until my upcoming appointment for with my ENT -- which, by the way, is actually on the 12th and therefore explains why it would have been (almost) impossible for me to post this on my actual 11-month anniversary with my beloved Donor Bob. I am (almost) positive that the ENT appointment will lead to sinus surgery, itself another fun fact that (almost) everyone living with CF can look forward to at one point or another. And after that, if everything goes smoothly or at least (almost) according to plan, I am looking forward to maybe casting off this (almost) never-ending cycle of IVs and looking ahead to the next phase of this (almost) unbelievable experience of learning to live with (almost) perfect lungs in an (almost) never boring CF-meets-transplant-meets-Piper kind of life.

And I think I'm (almost) ready.

The Little Things

2011-04-16T14:45:00.008-04:00

This is a picture of my thermometer.

I acquired this little yellow doom-stick in a total isolation room on the seventh floor of my hospital. It tried to "stick" it to me (terrible pun totally intended) by registering a fever on the day of my planned discharge and royally freaking out my doctors. After I had weaseled my way out of the situation with the help of my good friend Tylenol and all the argumentative force of a very expensive legal education, I figured the little troublemaker owed me a favor or two, so I pocketed it. (Note to readers: this is 100% legal in the hospital with disposable thermometers -- you've already paid for them anyway.) Unfortunately, in my glee at "free" new medical equipment, I forgot and left my beautiful blanket behind on my hospital bed. Hey, you win some, you lose some, right?

And what I "won" in this case was a judgmental piece of plastic that lately has been spoiling my plans way too often, despite a hefty dose of immuno-suppressants and a polymyxin/aztreonam IV cocktail. To say that me and "Thermy" here are not close friends would be an understatement on par with calling the cast of Bravo's Real Housewives, "just a little bit annoying." Still, most of the time the two of us are able to bury the hatchet and get along for the 10 seconds or so that it takes Mr. Killjoy to do his job and register a fever.

Most of the time, that is, until last Friday.

The events in question started out pretty much like always in that I was super cold and shivering under about 15 blankets when it suddenly dawned on me that maybe I should actually take my temperature rather than blaming the 60 degree weather outside. So I fished the little monster out of my medicine cabinet and popped it in my mouth. As I did so, I also made my patented cross-eyed contortionist face, which allows me to see when the little "F" on the thermometer stops blinking, and then I know the reading is done. It's a fun little party trick, only this time my friend, who was standing about 10 feet away from me, happened to pull a confused face of her own.

"Hey Pipe, why are you still holding that thermometer in your mouth? It's been beeping for a while now."

Um . . . pardon my language here, but shit. Turns out the thermometer that I've had for 4 months -- the one I thought was annoyingly silent -- is, in point of fact, anything but. The darn thing beeps, apparently with some repetition, and it has been making this beep at me every day at least twice a day, week after week, month after month, from a distance of about 6 inches from my ear. And I have never heard it. Not even once.

Okay, so let me just pause for a second here to acknowledge that this is not the end of the world. I have known for over a year now that I have permanent hearing loss at the high frequency level from a lifetime's worth of high-dose tobramycin use. And, weirdly enough, I'm okay with that, especially because my particular case is very mild by hearing loss standards. Even on the day I failed my hearing test I didn't really think much of it. I was, more than anything, disappointed by the loss of yet another helpful drug to the side-effect gods and my life more or less continued on as normal -- I just sort of accepted that I wouldn't be able to understand people very well if there was a lot of background noise and then I moved on. There wasn't anything I could do about it, anyway.

On the other hand, though, the incident this past week really threw me for a bit of a loop, and I have to admit that I'm still a little confused as to why. I mean, not to sound dramatic or anything, but I wake up every morning and pop a handful of pills designed to make my body as vulnerable as possible to any and all infectious agents, with the hope that such vulnerability will also help protect the foreign organs that currently reside in my chest. I follow this up with shots to ensure my blood doesn't clot and (more often than not for the past few years) several hours spent plugged into high-dose antibiotics that make me walk like a drunken sailor and lose much of the sensation in my face and hands. I'm completely used to checking my blood sugar and giving myself insulin shots at the dinner table by now, and I'm surprisingly cavalier about waltzing around New York City with a needle sticking visibly out of my chest. And given all of this (not to mention the slew of other stuff people with chronic illness face on a daily basis), you'd really think it should take more than a silly beeping thermometer to ruin my day. Right?

Wrong.

That insignificant piece of plastic and its inaudible beep really, really, really pisses me off.

People like to tell us that we should focus on the beautiful little things in life, and also that we shouldn't sweat the small stuff. But I'm the first to admit that, more often than not, I seem to get it the other way around. Lung failure and subsequent open-chest surgery, constant IVs, and a medication schedule that would confuse most pharmacists seems, well, kind of run-of-the-mill to me now. Not to sound blase or anything, but I've been through it, I've seen friends go through it, and I've even learned to laugh at some of the morbid stuff. I had to. But yet I still get angry and defensive when my family (lovingly) teases me about my less-than-perfect performance as a patient in the ICU. I still get mad when my housekeeper rearranges my medicine cabinet (do.not.touch.the.drugs.), and I'm kind of ashamed to even admit how pissed off I get when I can't find a cab in the rain. And yes, even I am aware that the last one on that list is possibly the single whiniest complaint ever. I'm still 100% guilty as charged.

So, yes, it's true that I can ignore a rainbow or a kind smile from a stranger, and still get my day "ruined" by something that I know is, in the grander scheme of things, probably not even that big of a deal. And for the record I'm not saying that hearing loss of any kind at 29 is acceptable, but I am admitting that I'm not quite sure why I choose to focus so much energy on that, rather than on the multitude of other things that are going right (or wrong) at any given moment in my life. I'm not sure why I can handle talking about an infection that nearly killed me, but not about the ICU that saved my life. And I'm not sure why some things seem so much more intense in the moment than they do, say, a couple days down the road -- or even to the person standing 2 feet to the right -- while other things can seem like no big deal at the time, until I work myself into an angry frenzy two days later. I think that for me personally it all comes down to the way I see myself (whether that be as someone who can laugh at a little thermometer or as the world's best ICU patient), but it could just as easily be about trying to put forward an image of the person I wish I could be.

I do know for certain that it's not for me to judge what's big or small in another person's life, especially when I can't even get it completely sorted out in my own. I've also accepted the simple fact that it isn't up to me, at least on the very gut level, what sort of things will leave me chuckling at my own ridiculousness and what will make me cringe every time I hear the story. What is up to me, however, is the way I choose to react to something once it's already happened: how and when I choose to let out my frustration, the conversations I might need to have to solve the problem, and what I might do to minimize my discomfort in the future. I can't necessarily promise that I'll never be caught sweating out the small(er) stuff, but I can choose to ask the question of why something is really bothering me and what the best way is to deal with the problem. And if I'm really strong I might even choose to listen to the answer.

Provided, of course, that I can even hear it.

Pushing the River

2011-04-12T19:46:00.007-04:00

Personal Journal Entry: April, 2010

Well, it's a new journal and I'm still here waiting for new lungs -- it's going on 8 months now, I guess. I just realized today that it was actually April of 2009 (one year ago) that [my CF doctor] told me I needed to go active on the lung transplant list. I remember how stunned and scared and shocked I was that I might actually be "ready." I remember thinking I wanted more time, or that she was crazy and jumping the gun, or that surely I would wake up in the morning and all of this would be a bad dream. And now, one year (and 8 months on the list) later, I feel equally stunned and scared and shocked -- only this time because I suddenly realize that I probably don't have that much more time and "my miracle" still seems a long way off. It seems to me a bit of a lesson in contradictions: on the one hand I always wanted to fight with my old lungs for as long as possible, and on the other I am now admittedly beyond frustrated with the waiting. But I guess more than anything this has taught me that you simply can't fool the Universe -- clearly I could survive this long with my old CF lungs, so maybe it's right that I still have them?

I keep going on and on about trusting my doctors and myself, etc, but I think the real truth here is that I need to just learn how to trust in God and in whatever force it is that we call the higher order/plan. If I've learned nothing else in these months of waiting, it's that I can't force my will on this process (my friend Carolyn would say "you can't force the river", though Lord knows most of us will never stop trying). The fact of the matter is that my lungs will come when the time is absolutely right -- my donor's life will stop at exactly the right moment and the stars will align in exactly the right way -- whether I like it or not. And when I think about it that way -- when I really consider that maybe my role in this Universal drama is just to do all I can to be ready for the moment when all the ingredients that are beyond my control come together -- well, somehow that makes everything seem just a little more manageable. Because short of going out and mowing someone else down with my car (which would probably get me removed from the list, among other more serious consequences), or somehow contriving to get myself on a vent (which just sounds unpleasant), there's not a whole lot I can do to ensure that I get lungs tomorrow, or the day after that, or the day after that, or for that matter ever at all. I can keep myself healthy and I can keep on choosing to trust. Everything else, much as I hate to admit it, is just beyond my control on this one.

Just as I couldn't delay CF's attacks on my current lungs just by being too stubborn to go on the transplant list, so I can't will lungs into existence simply by being ready. The best I can do is evaluate my current situation and choose to see it as a part of something that matters: as a lesson to be learned, as a poem to be cherished for its simple beauty and longing refrain, or simply as a river to be crossed on my way to something beautiful.

[. . .]

Because, after all, you can't push the river.

4/12/2011

Dear donor Bob:

Thank you for blessing me with so many new rivers to cross, and for being such a huge part of all that is beautiful. Most of all, thank you for coming at exactly the right moment, just as you promised you would. It was crazy and it was chaotic and it was beyond scary. But you, my friend, were totally worth the wait.

Happy 10 months to us.

xoxo,
Piper

Say When

2011-04-08T15:06:00.000-04:00

One of the things that I, and most people with chronic illness, struggle with is the question of "when to say when?" Oh, wait, scratch that. I guess I should have said that one of the problems that pretty much every.single.person. in the world struggles with is "when to say when?" Seriously, let's just call a spade a spade and admit that this one's a universal brain teaser: all of us wonder how much is too much, and when enough is enough. And if we're really lucky, a few of us might actually come up with the "right" answer (or, you know, right for us, anyway) every so often. It's a little process that my friend Charlie and I like to call "whenning!"

Sorry.

Lately I've felt all sorts of pressure in this area, not gonna lie. It's something I've learned to live with, of course, but that doesn't necessarily make me an expert. When I was a child, for example, I was told not to horseback ride (I ended up competing internationally in showjumping), I was told to slow down and take college in several years (did it in 4 with multiple majors), and I was told there were a lot of really good places for me to live -- just so long as it wasn't a stuffy apartment in a gigantic city. Awesome.

I don't say any of the above to brag, by the way. If anything, looking at that list (and noting the countless examples I could have used as well), I'm a little embarrassed by my own stubbornness. And yes, before anyone keels over from the sheer obviousness of that statement, let me be the first to admit that I, Piper, am sometimes just a tiny bit on the stubborn side. Only rarely though, because the rest of the time I'm just flat out super stubborn. Let's just say it's part of my charm.

The thing is, I've recently had the privilege of talking with a lot of CFers and CF parents through this blog and other mediums, and the most common questions I get (besides the "what would you do differently if you could do it all again?" zinger, which is a whole 'nother blog to say the least) all have to do with the "when/when" question.

If my CF child seems a little lethargic but not overtly sick, when do I push him to get up and be active and when is it okay for him to stay home from school and rest a little longer?

If my kid needs to gain weight, when do I push him to eat and when is it okay for him to just tell me he's full and leave the table?

If I have some sort of really important or exciting event coming up, but I know it might run me down and make me more likely to get sick, when is it okay to choose "life" over CF for a day or two and when is that just asking for trouble? And how do I do that maybe just a little bit without being totally reckless about it?

If my heart is truly telling me to do something that I know my doctors won't approve of, but which for one reason or another means the world to me, when do I stand up and assert myself as a person, and when do I need to just bow my head and listen as a patient?

When do I know it's time to bite the bullet and go see that transplant team my CF doctor's been blabbering on about at clinic, and when is it okay (even beneficial) to believe that my lungs are magical and this scarring is totally gonna clear up tomorrow if I just push a little harder?

And, of course, my personal favorite,

If I really truly super duper honestly and cross my heart adore my job and can't imagine doing anything except what I'm doing and worked really really really hard to get here but know that it's really taking a toll on my lungs and body, when do I know the time has come to choose my physical health over my mental health? And once I DO make that extremely tough decision, when do I know if it might be safe to start crawling my way back or trying out something new, even if I just got put BACK on IVs for the 8 billionth time in the last 3 years and am now facing 2 weeks of polymyxin with a side order of sinus surgery?!?!

You know, not that I have a personal connection to any of these questions or anything. I just really enjoy detailed hypotheticals, is all.

Unfortunately, most of the time I don't have any answers, which just leaves me standing before an expectant parent (or staring blankly at a wordless reply email) and wondering whether I could casually pull the fire alarm as a way to change the subject -- though something tells me that wouldn't work too well in an electronic communication. Because, the thing is, I don't actually know what your (or your child's) limits are. I don't. I have no idea whether you're making the "right" decision by keeping him home from his best friend's birthday because that kid down the street has the sniffles, or if adding that biology course is a "good idea" or just an unnecessary risk for an English major. I can't tell you whether to get a dog because some people are allergic and some dogs bite, or whether to live in a big city because some places in the city are decidedly dirty but on the other hand you'll probably have access to great health care. What I can do, though, is be open about MY experiences, and admit that I've done both those things, risky or not, and I'm still breathing.

Since the transplant, my personal questions have changed a little bit, but they're still very much a part of my life. As an immunocompromised person, I risk infection every time I step out the door, but for the most part I still keep stepping. On the other hand, I now find myself "saying when" sometimes when before, with my CF lungs, I probably wouldn't have batted an eyelash (yes, NYC subway system, I'm looking at you on this one). Also -- and I'll admit that this one's a kicker for me -- I don't understand nearly as much about life with CF after transplantation as I did about life with CF before transplantation. I don't know when I can insist that the random pseudo they found in my bronch probably isn't a big deal and anyway I've got big plans for the night, doc, and when I should just suck it up, smile as graciously as possible, and check myself into that darn hospital I love so much. I don't yet know how big the risks are and (far more importantly), I don't yet really know my "new" body and how it will react to all this stuff I put it through. And, yes, for those of you keeping track, that's multiple times in the very same post that I have admitted that I just don't know. I'll just hang out here while you all go alert the media.

I guess the point I'm trying to make is that I'm not sure there is a "right" answer in some of the more complicated "when/when" situations. Sometimes there's a right choice in the moment (the choice, for example, to grab life by the horns and go for it) that might not in fact be the right choice in the long run. Or there's a choice that might be right for your health, but not so much right for your sense of yourself as a person, and your personal life goals. And sometimes the "wrong" choice (to put yourself through rigorous schooling for a stressful job) turns out to be right when you end up with killer insurance and awesome sick leave or disability policies.

Most of the time with these types of decisions you're not going to please everyone involved, but you are going to have to live (and hopefully make your peace with) the results. Which is why when people ask me that other question -- the "what would you do differently?" monster -- my usual answer is that I would probably do it all a lot differently, if I knew then what I know now.

And then I just thank God that I didn't.

Writer's Block, and Other Blessings

2011-04-01T01:23:00.000-04:00

So if you come to this page with any sort of regularity (or even if you just stop by every once in a while to check in on Sampson), you may have noticed that there has been a distinct lack of blogging going on around here lately. And this alone wouldn't really concern me if it weren't for the simple fact that, well, it's a BLOG after all, so the act of actually BLOGGING is more or less central to the whole idea. Which of course leads to what will from now on be known as "BadBlogger Syndrome" (or BS, for short): a crippling condition that makes one increasingly unable to form a coherent written sentence.

Or, to put it another way, I've had a SERIOUS case of writer's block. Hey, just one more illness for my collection, right? Add it to the list, boys.

Being a good patient, of course, I've worked diligently over the past few weeks to come up with a cause and a treatment for this new illness of mine, and unfortunately nothing seems to work. I do know that my writer's block most definitely was not caused by a lack of Cf/transplant/medical stuff going on in my life -- actually, quite the opposite. In the past month or so since I stopped updating regularly, I've been on IVs, been taken off of IVs due to side effects, seen my doctor several times, had the wonderful opportunity to be present at some very inspiring and impressive events within the CF community, and dealt with many of the "little perks" that seem to go hand-in-hand with a lifetime of chronic illness and immuno-suppression (neupogen shots, anyone?). In short, it's been as wild and as thrilling a ride as ever, but for some reason or another very little of it has ended up here. Not even that time I caught my overweight puppy happily gnawing on what I thought at the time was a red plastic chew toy but later turned out to be a Boost Plus bottle that was (when I left it) half full on my kitchen table. Score one for the Sam-Man on that caper, for sure.

You see, it's not that my life lately has been CF or transplant free (because hey, let's face it, when is this life ever free from the demons that haunt us the most -- whatever those might be for each of us?), but rather it's just that I haven't really been able to bring myself to sit down and WRITE about that stuff lately. And I'm realizing now that maybe those sorts of breaks are not only okay, but even necessary. Maybe sometimes it's important to take a step back from some of the things that do affect our everyday lives, that make us different and special and crazy, that teach us lessons and bring us pain, that make us hope and wish and believe and cry and start all over again the next day, and that do -- no matter how much we hate to admit it sometimes -- define a piece of each and every one of us, whether that means submission or rebellion or anything in between. Because like it or not, I AM CF -- it's just that I happen to be a whole lot of other things along the way, and sometimes those other things take precedence.

So I guess when it comes right down to it, I might be suffering less from BadBlogger Syndrome or writer's block (or whatever you want to call it) than I am from just your average, run-of-the-mill identity crisis. After all, as Walt Whitman so famously wrote, "I am large, I contain multitudes." And it would seem that at least one of my multitudes sometimes requires some distance from the part of itself that carries this disease so openly and willingly. Which is why I think that, for me personally, there will always be a value in the spaces that come between the sentences on any page, the lines on any poem, or, yes, even the posts on any blog. Because ultimately I know that, when the space is over, I will always find my way back to the words that keep me going and the lungs that keep me alive.

And back, of course, to the community of individual multitudes who make it all worthwhile.

Journeywork

2011-03-18T04:44:00.001-04:00

As most of you familiar with this blog probably already know, I am not a poet.

I am, at various times and places, a student, a server, and a storyteller. I am a somewhat rebellious patient and a somewhat competent doctor at the same time. I am tall and I laugh a lot. I am often very loud and outgoing, aside from the times when I am extremely quiet and observant of others. I recently had a doctor actually ask me if I was flipping him off in his own office (I wasn't) -- and I'm pretty sure he was only half kidding. I am giving, crazy, driven, successful, frustrating, somewhat pretentious, spoiled, intelligent, and prone to calling people out for their interesting quirks and/or contradictions. I am equally prone to being called out. I love things that are simple, I crave intensity, and one super bright color or perfect expression will stop me dead in my tracks. I, my friends, am all these things, but still I am no poet.

And every time I forget this precious nugget of self-awareness I end up with something like this:

Roses are red
But my lips are all blue
How 'bout some lungs, God?
I think I'll take two.

(I store my Pulitizer in the kitchen, by the way. I just don't like to brag.)

And yet, despite my inability to actually WRITE a coherent verse, I also have to admit that I am a HUGE fan of the stuff. From my girlhood crushes on Keats and Eliot to the many obsessions that have come along the way, I just can't shake the fact that sometimes these abstract figures with their untouchable magic typewriters, these wizards or words and viceroys of verse, these (ugh) POETS with their faded type and clusters of glued-on glitter are, in all fairness, really, really smart people. Like, for example, when one of them manages to find these words within her pen:

One day you finally knew
What you had to do, and began (Mary Oliver)

When I started the process of living my life independently with CF, I was terrified. As I took on more and more responsibility for my disease, my potential for error increased, and so did my fear. There were mistakes, there were triumphs, and there were moments of such intense emotion that I actually made the girl in the dorm room down the hall (that one who cried for two days when she got a B instead of an A on some silly calculus exam?) look normal. In short, I was a child (or at least an adolescent, which is probably even more terrifying) and, although I was willing to help myself, I'm the first to admit that I wasn't always great at figuring out how to do so.

And when, in January of 2008, my beloved CF doctor sat me down per usual on a rubbery exam table mattress and, instead of asking to feel my belly and listen to my cough, she instead looked me straight in the eye and referred me for transplant evaluation later that year, I shook her hand, walked calmly out of the office, and promptly lost all composure next to a street vendor on 168th street. To say that I was frightened would be and understatement, as would the words "confused" and surprised. I didn't know heads or tails about this new situation, and so I wandered forward, brimming with questions and desperate for any sort of foothold.

But it wasn't until I got my double lung transplant in 2010 that I ran smack up against a wall that was, for me personally, one of the most difficult challenges yet: living life as a transplant patient in a way that still allows me to live life as, well, Piper -- the not-so-poetic but otherwise somewhat interesting woman and blogwriter you've all come to know and tolerate. And, since I was pretty sure living like me included living MY LIFE (as in setting the ultimate goal of return to work, travel, and some form of "normalcy" whenever it's actually feasible), I have to admit that I was, at least initially, a little thrown by the many restrictions brought on by immuno-suppression, the obstacles to full recovery, and the continued close follow-up by my dedicated care team. I can't be sure of what I was really expecting, but I think it mint have been something like "here's your new lungs, now have fun in Paris!" truth be told, my story's been a little more "here's your new lungs, see you back here in a week." It's not anyone's fault or anyone's error, but it is a situation where, once again, I find myself up against something in the health world that is harder than I expected.

The truth is, though, that there is never just "one day", as Ms. Oliver's words might have us believe, when we know exactly how to begin forever. There are, instead, many small beginnings along the way, each of which brings us closer to our goals, and carries us further from the fear and confusion in which we began.

When I was young, I realized I didn't have to ignore CF or become CF, but that I could just be me, with CF and a whole lot of other stuff, and be okay. I can't even tell you how badly I needed the wake up call, but I began the process. Throug that, I learned that I have intrinsic value and deserve recognition for a lot more than being a patient, and that some recognition for being a member of the CF community was okay too,

In my mid-20s, I realized I needed an outlet to deal with this whole transplant process and I created this blog. I needed to do it, so I began, at which point I learned that I can write, that sometimes I can even write well, and that I'm so far from special I can barely stand it. People get double-lug transplants all the time, and I plan to be around to see that success rate skyrocket.

And now, facing 30 with CF and the lungs of a beautiful stranger, I've come to learn that there is once again life beyond the medical. I've come to accept my fears (past and present) as valid. I've come to appreciate that simply having a transplant does not make me stronger, wiser, or kinder than any other human being. I've come to the amused conclusion that I know more about life wi chronic illness than my wonderful doctor. I've also learned that I often don't know as much as I like to think I do, in medicine or pretty much anything else. I'm in the process of learning that's okay. I need it -- oh God, do I need it -- and if nothing else, I have begun.

I am, I hope, far from finished in my beginnings.

There's a lovely part of her poem where Oliver, herself, begins her mastery. Having given us the encouragement to leap, she continues with an almost irresistible promise:

But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do --
determined to save
the only life you could save.
(The Journey)

Safe journeys, every one of us.

Inquiring Minds

2011-02-07T15:30:00.000-05:00

Hello, beautiful blog readers.

I'm sorry I haven't written in a while. After I get out of the hospital there's always a sort of "regrouping" that occurs -- time when I just kind of struggle to get back into the swing of normal (ahem, well, normal for me anyway) life and all that entails. I'm sure many of you out there know the drill as well as I do: there are new med schedules to synch up with whatever routine you already had, new prescriptions to fill and doctors to visit, new additions to your day like extra blood draws or physical therapy, weight to gain (yay for no more hospital food!), friends to call, emails from frantic relatives/coworkers/teachers/friends/friends-of-friends/cousins-of-friends/mailmen/etc to answer, and relationships to be renewed after your short "mini-vacation." Honestly, I sometimes think the time directly post-hospital is more difficult for me mentally (and sometimes physically) than the time spent actually IN the joint. Granted this is probably because I tend to be pretty harsh on myself and focus on whatever I'm NOT accomplishing rather than the things I AM, but still. The fact remains that life post-lockup is sometimes, shall we say, somewhat less than relaxing.

All of which is just to explain why I haven't managed yet to sit down and write a real, honest to goodness blog post in the past week or so. And, quite frankly, why I'm still not quite able to do that today. Yep, sorry guys. I don't have any health updates (see my doctor again tmw, actually) or news to share right now, so I decided to take the cheater's way out and do something I should have done a long time ago.

Answer your questions.

See, if you glance over to your left, you'll see a contact info section on the sidebar of this blog. A surprising number of you have not only found that little hidden treasure, but also used it, for which I am both grateful and (gotta be honest here) totally shocked. The number of you who want to talk to me about everything from your wonderful lives to, well, your breath (or lack thereof) is both humbling and really exciting, because I get to see for the first time the depth and diversity out there within our little CF community. So cool. Anyway, more to the point, many of you also include in your emails questions about me, my life, my health, and my "everything in between." I try my best to respond to everyone personally, but I also get a lot of repeat questions and some that are just too unique and creative not to share with the whole. So, without further ado, I bring you the first ever edition of Everything You Ever Wanted to Know About Me (And Weren't Afraid to Ask!). Enjoy!

Q: Alright poser, you talk a lot about being "from Colorado," but I've also heard you mention a whole bunch of other places that you also say you've lived. Where were you born, anyway? And did your moves have anything to do with your CF?
A: The simple answer is that I was born in Colorado Springs, CO (a city renowned for its beautiful views, Olympic Training Center, and a whole lot of military bases). My parents both have roots in TX and OK, though, so when I was young we did move to Houston for a short time, then moved back almost immediately. The return to CO was, so far as I know, the only move that was primarily driven by my health needs. Beyond that I have lived in Boston, Denver, Atlanta, and New York City. Through it all I was blessed to have great care primarily out of Children's Hospital of Denver.

Q: Your dog is super cute. What the heck is a "shorkie" anyway?
A: Shorkie is a fancy name for "mutt" in that it denotes a shih-tzu (sh) and yorkie (orki) mixed breed. Sampson was sold to me (yes, I admit that I bought my dog. I am not, it turns out, the most socially responsible person on the planet) as a shorkie. In retrospect, I think this is untrue. He looks waaaaay too much like a Lhasa Apso for me to be satisfied with the "shorkie" designation.

Q: If you had your whole transplant journey to do over, is there one thing you would change?
A: Wowza. Um, yeah. I mean, I think so. It's actually hard to say, because the result was so amazing and I'm one of those people who truly believes that events flow out of each other, so I'm not sure I would "change" anything for fear of disrupting the final outcome, if that makes any sense.

I will say this: my family had a very dark time right before my actual call for transplant. There's a blog post about it somewhere (look around June 9th or 10th in the archive), but basically we were confused and thought that we had actually been knocked down on the list. We went out to dinner and had this tearful convo where everyone kind of let loose, and it suddenly became very clear that we were all really struggling to hold it together. I wish, in retrospect, that we could have been more honest about all that before the night in question. I wish we hadn't lost the faith, even for those few hours. Because getting the call from that dinner table was hard, and I was beyond shaken up by it all. I really wanted to be more peaceful as I was wheeled into surgery -- as it was the whole experience (from the fight at dinner to the disorganized chaos at the hospital upon arrival) was rattling. Not so fun, and I wish my last memories of my old lungs were a little sweeter.

Q: What are your top three things to have in the hospital?
A: Easy: 1) my own pillow/blanket, 2) something that connects to the outside world (preferably computer, but phone works), and 3) my own snacks. Obviously this assumes you would bring your own comfy clothes as well, but if not sub out #1 for clothes. I hate sleeping on hospital bedding, but I'd rather do that than wear a gown all the time!

Q: What are you finding to be the hardest thing about post-tx life?
A: Right after surgery EVERYTHING was hard. When I first came home I couldn't walk much, couldn't focus attention on anything, and couldn't really muster up much enthusiasm even for things I really wanted to do. I hurt and was tired, and I cried A LOT (weird for me, for sure). I actually wondered if I had made such an awesome choice. All that changed about 4-5 weeks post-surgery, and then I felt great. Seriously, it was a total "welcome to the world" moment...I just woke up one morning ready to kick some proverbial butt. And yes, granted, it was more of a transition than that in real life (little accomplishments every day added up), but it really felt kind of like flicking a switch when I finally crossed that line. Now I feel very much like me, only better!

Q: OMG, Piper, I've been reading your blog and I can't make sense of any of this. You got a transplant! You should be healthy! Why were you in the hospital? Are you going to get out soon? Come one, be honest. I can handle the hard truth. I just need to know one thing: ARE YOU OKAY?!
A: Yikes. Okay, first, take a second and just breathe. The last thing I need is any of my wonderful breathheads passing out from worry over ME (especially since I know we all have so much of our own stuff to deal with). So just relax, and then trust me when I say the following message, which I mean with all my heart and which is 100% the truth as I know it.

I. Am. Perfectly. Fine.

Yes, I have infections and yes, I had to go to the hospital. The thing is, though, I felt fine going in, and now that the drugs are done I feel fine again. I need to get my sinuses checked out because they may be dripping into my lungs. I need to get my weight up a bit. I need to increase my WBC count and I need to STAY HEALTHY. Other than that, though, I'm golden. The hospital stay mostly consisted of meds; meds that they don't like to do at home because of their side effects and/or special administration requirements. But for all intents and purposes I checked into the hospital to: 1) start polymyxin, 2) desensitize my body to cephalosporins, and 3) complete an in-hospital treatment for a virus. Easy peasy, right?

Q: What made you start blogging?
A: Basically I wanted a place to tell people (mostly CF friends who don't live in NYC) about my transplant eval experience. I realized pretty quickly that I didn't have time to fill everyone in on everything individually, and I started the blog to kind of post updates and thoughts that were too long or silly to repeat over and over in 50 separate emails. This blog is basically my response to the mass email, because I hate those.

As it grew, I expanded the blog a bit to include more day-to-day CF/tx stuff. My original thought was that this would be a chronicle of working life with with CF -- particularly in a fast-paced professional atmosphere. I soon realized that 1) while I was working I had very little time for blogging anyway, and 2) I was getting sick so much by the time I started this blog that my posts were less about balance and more about how to find a lifeline when you're drowning. I left work in April, 2009 -- about 9 months after starting this blog. I still believe that it is 100% possible to find a good, fulfilling, healthy balance between work and CF. I think I did balance work and CF effectively (not, however, perfectly) for several years. By the time I started this blog, however, it was clear that I needed to start scaling back and focusing on transplant. I did work full-time until about one year before my transplant, however, and I'm proud of that.

Q: How many nicknames does your dog have anyway?
A: A LOT. The most common names used on this blog are Sampson, Sam, Sammy, Sam-man (also written The Sam-man), Sammybear, Puppybear, Bear (also written The Bear), and Bearcub. Other people in my household call him Sammy-lito and Bearser, while my friend Julia calls him "The Muff" (short for muffin, maybe?). My sister, I should note, calls Sammy "Samuel P. Samuelson" (the "P" apparently is for "puppy"). This is decidedly NOT Sam's name, and I tell her that frequently.

Interestingly, none of these reflect the actual name on his papers which is, I kid you not, SAMPHSON. Yeah, I was horrified too.

Q: Who is this sister we keep hearing about? Is she older than you, or younger?
A: Erin Beatty is a wonderful woman best known for her grace and talent in performing 2 different (but equally thrilling) jobs: 1) Designer for SUNO clothing line, and 2) Sister to Piper Beatty, blog goddess extraordinaire. More to the point, Erin is kind, lovely, fun, smart, and incredibly poised under pressure. She has more than once kept my entire family sane and she has great fashion sense. She also once thought the Dire Straits were singing "Money for nothing and your checks for free," which I believe shows her many hidden talents as a lyricist and/or advertising jingle writer. She is slightly less than 3 years older than I am, and is the world's best sister. I am definitely the president of her (very large) fan club.

Oh, yeah, and it's also her birthday today. Happy birthday, Erin!!

And there you have it: more about me, my dog, and my family than you could ever want, need, or even imagine. On the other hand, if any of you DO still have questions (about anything), please feel free to send them over to the blog email (matteroflifeandbreath@gmail.com -- note that there is NO "a"). I don't promise to have all the answers, but I promise to give you my version of them, and that's the best I (or maybe any of us) can do.

Much love, beautiful people.

Liftoff

2011-01-26T12:36:00.000-05:00

When I was about 12 my mother, who at the time was the dean of a graduate school in Colorado, had a faculty member who also happened to be an astronaut in his spare time. (I guess you could call it moonlighting....ba, dum, bah!) Anyway, bad puns aside, I thought this was pretty cool because 1) I had never met an actual astronaut before and was forever intrigued by the idea of freeze-dried ice cream, and 2) her association with this particular astronaut meant that my family was invited down to Florida to watch the shuttle launch when he was sent up to the International Space Station. A trip to Florida to watch the shuttle launch, by the way, gets you waaaay more street cred in elementary school than your run-of-the-mill visit to Mickey. This was the big time, and in my head it was going to be replete with visits to the "cockpit" (do shuttles have cockpits?) and time spent in one of those zero gravity spinning things you used to see on ads for Space Camp. I was, to put it mildly, super stoked at the prospect.

The launch was a night launch, which is both rare and spectacularly beautiful. We huddled on bleachers in the middle of some very uninhabited strip of land/dust, with the lights of the launching station spotlighting the shuttle in the distance. We weren't close by any stretch -- at least a mile away, I would guess, if not more -- and we had to get there early, so for the first hour or so all I really remember was a sense of being uncomfortable and bored. I was excited, sure, but I was also a pre-teen sitting with my parents in the Florida wilderness before the age of texting and cell phones and with nary a spinning zero-gravity ride in sight. I was, truth be told, kind of over it.

Over it, that is, until the countdown clock hit about 5 minutes to liftoff. At that point I swear I felt a tingle go through my entire body. I sat up straighter, I looked off into the distance at the lights surrounding the shuttle. I imagined the astronauts -- a crew of 5, including two women I had seen the day before at a panel -- strapping themselves into their chairs and straining their eyes for a last look at the family and loved ones seated with us in the distance. I even considered the name of the shuttle, The Atlantis, and its implications of worlds lost and the constant quest for hidden treasures. I stayed lost in these thoughts for about 4 minutes and 30 seconds, and then I joined the crowd in counting down toward the release of that vessel into the universe, full of the hope, joy, fear, light, and sheer anticipation of our collective human desire to live and to learn and to discover new wonders.

It is now T minus 11 hours before I, having finally finished my last round of inhaled and oral treatment for RSV, will be released back into my own little bustling universe of New York City. And though I can't claim a goal quite as lofty as those of the astronauts I watched so long ago, I have to admit that my skin is once again tingling with anticipation at the simple thought of making my way through the night and the snow that falls like so many stars to my family, my friends, my puppy, and my life.

I am so beyond grateful.

The nurses, staff, and doctors here are too amazing for words. I felt so cared for and looked after, which (while I may occasionally complain about all the interruptions) is something I am unbelievably thankful for. The care I get at my hospital is aggressive, compassionate, and even occasionally mixed in with a healthy dose of good fun and humor. I truly hope never to take that for granted.

That said, I am ready for liftoff. The past 8 days in here have felt somewhat dreamlike both in their intensity and in their timeless, floaty quality. The drugs they've had me on in here mess with my senses, to the extent that I can't even really feel my own body (case in point: this morning I bit my tongue due to numbness, and it's hard to type because my fingers can't feel the keys). For the past 5 days I've also been behind double doors, removed from the normal sounds off the hospital and unable to see my visitors, who must enter my room looking frankly ridiculous in paper gowns, orange masks (sometimes with plastic eye visors on them), and latex gloves. When I checked in here I was texting back and forth with a friend who I will never text with again, and that is the most unreal part of all. But somehow or another, like floating through space, time still managed to pass, and now I'm just a short while away from my own night launch. And happy as I am that I have such a wonderful hospital and dedicated team, that moment honestly can't come soon enough. Once again I am over the boring part and ready to skip ahead to the action, please.

So I'm officially commencing the countdown -- and I hope to see you all out there among the stars.

Writ On Water

2011-01-23T18:34:00.000-05:00

I was 19 years old and a sophomore in college when I first "discovered" poetry. I had, of course, read poems before -- I even had a few go-to verses and a budding obsession with TS Eliot that had taken root the first time my dad handed me a copy of "The Book of Practical Cats" -- but I was still, as a general rule, not someone you might expect to find sitting under a tree with a volume of Shelley or draped over some basement couch with the beat poets. I preferred stories, like with plots and characters and all that silly stuff, and I was loath to tackle any poem longer than two or three stanzas as a general rule. Poetry was, to put it mildly, my road less traveled.

Dramatic as it sounds, all that changed instantly the moment I walked through the door of my Romantic Poetry Seminar and cracked open that first page of John Keats. Two lines into A Song of Opposites I went from a skeptical student to a dedicated disciple. Shelley, Byron, Wordsworth, Coleridge, Blake: I loved all of them wildly, but my heart still belonged to that young English poet who so famously penned the words "Beauty is truth, truth beauty -- that is all/ Ye know on earth, and all ye need to know." (Ode on a Grecian Urn)

A few years later, when I visited Rome, I made a point of stopping by Keats' apartment, which he shared with the Shelleys (Mary and Percy, both of course famous in their own rights). This is also the place where Keats ultimately died -- after his entire family died of TB and he himself also caught it, he came to Italy for the air, which was thought to be better than the cold, wet British climate. Keats passed away at age 26 after a far-too-short career and a far-too-long battle with chronic respiratory illness, from which he knew he would eventually die. I consider this to be a great loss, not only for the genius of his art, but for the fact that he was both brave enough to keep writing in the face of his own pain and even death, and scared enough to let that shine through in his poems. He was honest and playful, and he created beauty out of an extremely painful truth, all of which led me to leave his apartment and make a special pilgrimage to his gravesite in the Protestant Cemetery not far away. And it was there that I first read these words:

Here Lies One Whose Name Was Writ On Water.

Keats wrote this himself, and asked for it to be placed on his gravestone. I won't get into the interpretations of this by historians or literature scholars (which are varied), nor the additional words added by Keats' friends after his death. What I will say is that these words struck me extremely hard as a person, as a poet (or, at the very least, a poetry reader), and as a patient. To think that this young man, so careful and talented with words, chose to leave on his grave a personal message of impermanence, of the fleeting nature of life and the return to the same glossy surface when we're done, is almost unbearably sad. To think that he found such a gorgeous image to express his heartache and that he made not only his art, but also his life and even his gravestone a poem is beyond inspiring. Even tragedy has its sparkle.

Alas, I am not John Keats, and I can find no such lyrics for my own sense of loss this weekend. Two gorgeous souls, one of whom I was honored and blessed to call a very close personal friend and both of whom were a huge part of my life here in NY and at my transplant center, have moved on from this life into whatever comes next. They were also close friends, and I truly hope that they are together now laughing and taking silly pictures. Tina and Tom, you were and are two of the most beautiful souls I have ever had the privilege of knowing. I will miss your wit, your love, your sarcasm, your funny faces, and your insights. Thank you for the cupcakes, and the laughter, and really amazing conversations. I love you always.

And as I look out now over the lights reflected in the Hudson River, I know that we may all very well be simply "writ on water," but that doesn't make us shine any less brightly.

Really Silly Verses

2011-01-22T21:15:00.000-05:00

There once was a room by the highway
With views of the New Jersey skyway.
It came with double doors
And was up seven floors
In a bustling hospital hallway.

And those two doors were there for a reason
Having to do with the season.
'Cause in winter, you see
One might catch RSV
And end up with coughing and wheezin'.

Which fact is the point of this story
Without getting overly gory,
There are bugs in my nose
But that's just how life goes,
And I don't want my breathheads to worry.

I'm not happy, it goes without saying,
About how these cards have been laying.
I try to understand
This is part of the plan
Of this wonderful game we're all playing.

There are drugs, there are fears, there are times when
It feels like you simply cannot win.
But for now there are lights
From New York City nights
And tomorrow we're blessed to try again.

Balance It Out

2011-01-20T14:48:00.001-05:00

Well, hello there, beautiful breathheads:

I'm writing this afternoon from my room on the 7th floor transplant ward of my hospital. My view is pretty darn cool, if I do say so myself, as my window looks right out over the Hudson River, The Empire State Building, and all those beautiful lights that make New York City's skyline so breathtaking. Oh wait, I'm sorry, where are my manners? Would you like to see it, too?

Amazing, right?

Unfortunately, though, my other view is slightly less...appetizing? I can, for example, see my body, which is currently sporting not one, not two, but...wait for it...three separate site for IV access: two peripherals and my port. I can also see the number of IV bags hanging from my pole, and I can honestly say that never have I seen so many in one place feeding into my body at the same time other than my time in the ICU immediately post-transplant. I can see the many doctors who keep walking through my door, and I can see the clock on my wall counting down the minutes until my next dose of cephapine, to which I am allergic. Oh, yeah, and I can see this:

I don't care what anyone says, peas and carrots are not supposed to be neon.

Aside from the food and the lock-up situation, though, things are going pretty smoothly over here. I was admitted directly from my bronch this past Tuesday after my doctor found continued secretions in my gorgeous new lungs. He's the "better safe than sorry" type (good find in a doctor, by the way), so he decided to pull me in here for a good old-fashioned dose of in-house medicine. This was actually tossed around as an option last week and I had time to prepare. I'm not pleased about it, to say the least, but I am accepting of it, which is a big first step. And after all, I want to do right by these beautiful breathers -- they (and I) deserve nothing less. The plan right now is to do a course of one very strong IV antibiotic called polymyxin B; do a normal course of IV levaquin, mycofungin, and oral minocycline; desensitize me to another option for use now and in the future as needed (heeeello cephalosporins! Oh, how I missed you and your thrilling scent of cat pee!); and check out if there's any rejection since I've had a couple of episodes since my surgery. Oh, and we're gonna throw in some sinus exams/consults and vascular treatment, just for laughs. We're funny like that, I guess.

So I'm in here, and I'm looking out at my twinkling city and I am, of course, super bored because that's how things roll at the hospital, and I find myself sort of leaning into the view -- as if my body just wants to leap out the window and fly down through that mass of steel and water and sky and humanity. Because it does. I suddenly realize that I am aching to get out of here. I am literally tingling with the thought of being allowed something as simple as the chance to walk down my silly little street in the West Village again. I am, in a word, desperate. It's not an uncommon feeling for me because I absolutely hate being "sick" and will do anything to avoid places that make me feel that way, but in this case I'm on a drug that they just won't let me start at home. I feel fine, all things considered, but I'm not allowed to leave.

Polymyxin as a drug is well-known for its evil side effect profile, one of the big ones being that it is nuero-toxic. Patients can experience this effect in different and diverse ways, but for me it's always been a tingly, numb-like feeling in my face and hands and a more or less destroyed sense of balance. And as those who know or have ever met me in person can attest, I am not particularly graceful to begin with, so any loss in this department is a huge step down in my ability to perform such complicated feats as walking or, well, writing this blog. And right now, that stuff is hard. It's really, really hard, as a matter of fact.

When I lose my sense of balance, I feel unsteady, awkward, and unproductive. I feel confined right now, quite literally insofar as I am in a specific ward on a specific floor of a specific hospital and can't leave -- I can't even take a long walk for fear of falling into some poor kidney recipient or whatnot. I can't shake these infections either, even post-transplant, and that makes me feel even more off-kilter. And so I find myself here, leaning into my window, staring out at the city and the life I adore from behind the glass of the life that keeps me going, but threatens to drive me crazy in the process. It's a familiar sensation to me, as I remember doing the exact same thing from Denver Children's Hospital when I was 15. I can't seem to check into this place, either mentally or physically, without feeling a sense of loss and desire. I just want to be done with this part of the production and on to whatever comes next.

But I can't be totally free, obviously, and I can't wish away CF or transplant or any of their nasty little siblings. I can't change what's already happened and I can't (or rather, I don't want to) sit around and worry and squander the moments when I could be out showing these lungs a good time. I can't bear the thought of cheating myself out of any more time. Period.

And so I have to choose balance, by necessity. For me it means knowing when to push my doctors for more in the life/freedom department and when to back off and trust their judgment in the health/lung part of the deal. Truth be told, I want both a long and a happy life, and I'm not willing to compromise much on either. So I have to learn how to walk this tightrope, even if it does sometimes land me with my nose against a frosty windowsill. The alternative on either side to me would mean giving in to my disease: either by being stubborn and allowing it to take my health and good judgment from me or by being too scared and allowing it to take my spirit. I can't (and I won't) let either of those things happen if I have any say about it.

I haven't yet found the perfect combination, and I seriously doubt I ever will get it exactly right. After all, I am alive, and that makes me prone to mistakes. But tonight, in my cozy, lonely, familiar hospital room looking out over my huge, crowded, exciting city I know that I am the consummate balancing act between these two worlds. And it doesn't feel bad at all.

Well, aside from the food, of course.

xoxo,
Piper

Seven Months Down and Oh, What a Ride

2011-01-17T02:06:00.000-05:00

When I was a little kid I had two rides that I really, really, REALLY loved. The first was The Pirates of the Caribbean at Disney World, which was popular with my family as it was the only ride that both my sister and I enjoyed. The second ride, on the other hand, was slightly less involved and didn't require a trip to Florida: namely, the tilt-a-whirl at a local Colorado amusement park.

And wow, did I ever LOVE that tilt-a-whirl. Honestly, I was such a fan that I would literally beg for days to visit the park, and I once jumped out of a moving vehicle in an attempt to get on the ride five minutes faster. Yes, it was stupid and dangerous, but it was also an act of pure, unadulterated love. I mean, this ride and I were like a match made in intentionally induced nausea heaven -- how could my parents expect me to wait until the car was safely in a designated parking space for that kind of fast-paced, dizzy, scream-your-guts-out (and I mean that all too often in the literal sense) joy?! Clearly, they could not.

Fast forward about 20 years to the present. There aren't a lot of tilt-a-whirls in New York City (Coney Island excepted), and if there are you probably aren't going to find them in the West Village. Good coffee and amazing shopping? Check. Old school amusement parks? Not so much. It's a bit of a bummer, but then I remember that I don't actually NEED to pay $5 and step right up to get that kind of excitement anymore. Why, you ask? Because I've had a double-lung transplant. I get it all for free.

(*Dear readers: obviously, transplants are not free. They are not even close to free, as a matter of fact. I'm quite certain that this transplant is the single most expensive thing I have ever "purchased" in my life, in more ways than one. Just ask anyone in Arizona. But for the purposes of this post, I mean "free" as in I don't pay any extra for the excitement part. That's just like the added gift with purchase -- much like the grey crewneck that apparently comes with every purchase of "Pajama Jeans." Seriously, look it up.)

I have to admit that I personally feel my life has gotten less dramatic in the 7 months I've been living with these lungs. At the very least I feel more stable -- mostly because I don't spend all my time worrying about when or if the other shoe is going to drop. I'm pretty secure right now in the thought that I am alive, and to the extent that I might not be alive in a few years or even months, well, I guess that's true for everyone, everywhere. I just don't have the energy left to worry about it all the time after having done it for so many years already.

But I will also acknowledge that, for me at least, the drama seems just a bit more disheartening right now than it did back then, because before at least I could explain it. I could say with certainty that I was sick because I had mucus clogging up my lungs, and said mucus was infected with several strains of nasty bacteria that were slowly wreaking their havoc. I could feel the symptoms of every new infection as they came on and I could make fairly educated choices after considering both my mental and physical needs. In other words, I knew what was happening and I understood why, so even though I was scared I was also, in some ways, empowered. I felt 100% confident asking my doctor about a new treatment option or asking if I could attempt an alternative to one of her suggestions, because I knew what the risks and benefits were to each approach.

The thing about these past 7 months is, I no longer truly understand my body. This is, of course, not entirely true because I still know how to recognize things like a cough or a virus or whatever else. But on another level, I feel pretty clueless. I rarely cough enough to feel concerned because, quite frankly, 7 months ago even my best day sounded like a trip to your local TB ward. Now my worst day involves a few minor coughing jags set in between other "normal" activities, and it just doesn't feel like that big of a deal. On the other hand, I'm becoming more and more aware that most of my friends post-transplant don't spend their first 7 months constantly on IVs. I'm starting to get a few curious souls asking why I seem to require such aggressive treatment, and my honest to goodness answer is: I don't know.

What I do know is pretty straightforward, though. I know I have some leftover CF pathogens (namely pseudo and some recurring fungus) in my sinuses and trachea and that these sometimes drip down into my lungs. I know I've cultured some new bugs since my transplant, most likely due to my weakened immune system. I know that at least a couple of these bugs are fairly resistant and that I have some additional issues with antibiotics (such as hearing loss from Tobra and just plain old allergies) that make selecting an effective combination difficult. I know that I am blessed beyond measure by a very proactive transplant center and a doctor who favors an aggressive approach to treatment, especially right after transplant. I know that 7 months later I FEEL fantastic -- I can exercise and play with my puppy and have fun with my friends and go to the gym and do (almost) everything I've wanted to do for so long -- but that apparently my clinical results are still finding the right balance. I know that I am still absolutely as stubborn and impatient as that hard-headed little girl who took a flying leap out of her parents' Jeep Cherokee and ended up sitting by herself on the pavement -- a little scraped up but ultimately no worse for the wear.

I know that this is not going to be what the rest of my life is like post-transplant. I know that.

So yes, I am 7 months and a couple of days out of transplant. Yes, I am still constantly on IVs and I still have my port-a-cath in my chest. Yes, I really do feel as good as I claim to pretty much every single day -- I wouldn't BS to you guys about that, I promise. Yes, I get frustrated but yes, I still really respect my docs and am grateful to be where I am in terms of long-term follow-up care. And yes, I would do it all over again in an instant, in the blink of an eyelash, in a heartbeat.

Or maybe just in a breath.

With love, light and seriously immeasurable gratitude,
The Girl Who Cannot Wait

Take Your Time

2011-01-07T08:07:00.001-05:00

Don't you just love those moments/minutes/hours/days when you know you have something you want (or need) to say, but you have no idea how to actually express it? I'm sure you all know what I mean; it's that desperate feeling of being without the right words (or actions, or images, or whatever floats your individual boat) to get across the emotion you want to convey. It's a sense of being unable to communicate with those around you and therefore setting yourself up for misunderstanding or isolation. In short, it's what I imagine drowning must feel like -- or pretty darn close anyway.

Lucky for me, I don't find myself rendered speechless very often. This in and of itself is probably both a blessing and a curse (depending on who you ask), but it at the very least saves me the discomfort that goes along with unexpressed emotion. And in a world as intense as that of chronic illness, hospitals, and shortened life expectancies, being able to lay it all out there even if it seems melodramatic or overly intense is, quite frankly, not the worst flaw I could have inherited. (And yes, Daddy, I'm looking at you.)

But, like all rules, there are exceptions. I am, for example, not good at any conversation I perceive as overly needy. I'm not great at letting people know when they're frustrating me BEFORE the proverbial shit hits the fan. And I'm not a huge fan of dealing with things that I find super scary or truly, deeply uncomfortable. In those situations, I tend to turn either to humor or to simple avoidance. It's easier for me to do a very brief or generalized acknowledgment of something harsh than for me to really go the distance and express how bad or overwhelming the situation really is. And, this, unfortunately, is NOT the best trait to have inherited in terms of illness and life. In fact, it's something I really need to work on, and I plan to give it a solid effort in the year to come.

So here goes nothing, right? Or rather, here goes everything...

According to the banner at the top of this blog, I write about "Life, Lung Transplant, and Cystic Fibrosis...and Everything In Between." Quite honestly, though, I consider this blog about Life, more than anything -- it's just that "My Life" in particular, happens to involve a whole lot of CF with a hefty dose of transplant thrown in for good measure. Or at least that's the situation right now, and that was the impetus for starting this blog in the first place.

But the simple fact is that any blog about CF and lung transplant (and indeed about life, for that matter) also needs to include something that's not quite as fun as miraculous near-misses, great doctors, an abundance of expensive drugs that I feel privileged to use despite their side effects, and stories about lives reclaimed. And I honestly feel strongly that I would be remiss to head into 2011 without acknowledging that, and without sending out -- if only from a distance -- my support to the many members of our community who are facing the harsh reality of CF that, sadly, brings to a close all those other crazy beautiful miracles.

This all came to a head a few days ago, as I struggled valiantly with my move (read: fell into an infection-induced stupor on the floor of my new room while my mom sorted boxes and furniture). As part of the joys of moving, I was somewhat distracted and less involved in any and all things CF-related for a few days, something I generally consider good for my sanity anyway. Unfortunately, I was also less likely to email people within the community who wrote me through FaceBook or the blog. And I know that sort of thing happens, but it's not my favorite thing to have happen -- especially when someone emails me about her fears with getting listed for transplant and I know that I have to leave it for a few days. That just kind of sucks, even if it is inevitable from time to time.

What sucks more, though, is that when such a thing happens in the CF community, the person isn't always around when you finally get your act together. And the truly heartbreaking reality is that you might find yourself remembering a young woman who was amazingly brave in the face of failing health and other challenges, who looked incredibly cute in the pictures she took to document her fight (all wearing the lung shirt that you and your sister designed), and who had always been nothing short of an inspiration in her several previous emails to you. You might just find yourself sitting baffled at the computer, wondering how just a few days could make such a huge difference -- and knowing that there but for the grace of God go all of us when it comes to this deadly disease.

So please excuse that this post isn't a particularly happy one. Those moments still exist in this world, and I think it's super important to share them. Actually, truth be told, I think CFers are pretty remarkable in our collective determination to look on the bright side. And Summer, you were a perfect example of that. But as a self-proclaimed hippie and a woman of faith, I know you'd also agree that there is, no doubt, "a time to dance, a time to mourn...and a time to every purpose under Heaven."

And beyond it, as well.

A Tale of Two Years (and Four Lungs)

2011-01-01T03:27:00.000-05:00

Dear 2011,

Well, hello there.

Okay, so I have to be honest: I am SUPER excited to "meet" you. Seriously. I think I can honestly say that I have never been more thrilled to ring in a new year -- even 2000, which was, of course, thrilling in actual celebration and important for me personally in that it was the year I graduated high school and spread my wings, so to speak. And please, don't get me wrong. I've had some fantastic years in my life -- many of which I look back on now with total awe that I could ever deserve to be so blessed or so lucky -- but 2011, I'm 100% sincere when I say that you have all the potential in the world to take home the big prize. You are, to put it mildly, potential personified. And for that reason alone, darling new year, I am extremely thrilled to welcome you into my life.

Of course, your predecessor was pretty darn impressive in its own right, obviously. I mean, how many years come complete with a brand new set of organs? (Important sidenote: please don't take that statement as a challenge, future years. I really think I'll hang onto what I've got for now if it's all the same to you.) It's undeniable that 2010 was about as "landmark" as they come, and that it was filled with joy, sorrow, hope, fear, laughter, tears, and miracles beyond my wildest dreams. For that, at least, I hope 2010 knows that I am forever and truly grateful.

In some ways, of course, it's always hard to separate the worst moments in your life from the best. By which I mean that true joy often stems from hard lessons, or from overcoming tragic circumstances -- at least that's quite often been my experience. And by that measurement, no doubt, 2010 was pretty much as awesome as they come, itself a fact made clear for me when I spend time rereading parts of this blog, or just revisiting memories. I laugh out loud pretty much every time I read those awesome comments you left me during my stay in the ICU, for example, and I smile to know that people from all across the country and even the world were lifting up their hearts in prayer, love, and celebration right along with my family. Wowza. No, seriously. Wowza, in every sense of the (very made-up) word.

Charles Dickens started out one of his most famous novels with the words now dreaded by high school English students the country over: "It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all going direct the other way . . ."

I'm pretty sure Dickens might have been waiting for transplant when he wrote that passage.

Okay, fine, so maybe not. But the point still stands that difficult moments in life have a strange habit of bringing people together, showing us what's important, and teaching us lessons that might scare us in the moment, but at the very least have the potential for some pretty interesting stories (or blog posts) down the road.

Although I have to say that if 2010 was both the best of times and the worst of the times, then I think I'll settle for 2011 just being pretty darn good in its own right. I'll gladly accept a few less life-changing lessons and brilliant surges of pure delight if I can also, in turn, cut down on the sleepless night full of worry and the scared looks I saw on way too many faces in 2010. I know I have a lot more to learn, and I promise I'm excited to get there, but for right now I think I'd be okay making those discoveries under just slightly less difficult circumstances, 2011 -- that is, if that's okay with you, of course.

Of course, my New Year's wish for all my beautiful friends out there is similar, though not, it goes without saying, exactly the same. I wish the best of times (always), I wish you harder times (when necessary), and above all I wish you excitement, joy, wonder, and discovery through each and every second of this magical experience that we call life. And when it all seems just a tad bit overwhelming, then I wish you, as Dickens might say, a true "spring of hope." And maybe, if we all get really lucky, a few more seasons as well.

With love, gratitude, and some serious excitement for the year to come,

xoxo beautiful people,
Piper

40 years

2010-12-26T20:56:00.000-05:00

On December 26, 1970, my parents, Kathleen Murphy and Michael L. Beatty, walked down the aisle to take their place at the altar and say their vows. It was the day after Christmas, they were in Abilene, Texas (where my mother had lived all her life and my father's family had lived intermittently throughout the years), and the day was so busy that neither one of them managed to eat anything at the reception. Fortunately for them, a thoughtful caterer had the foresight to pack them a double-portion boxed lunch of fried chicken to eat on the way to their honeymoon in San Antonio. Unfortunately for my dad, however, my mother ate the entire thing -- double portion and all -- while he drove.

And that little story, y'all, is what we down in Texas like to call "foreshadowing." The lesson being, of course, that while marriage might be a pretty fun road, at the end of the day there's always gonna have to be a few compromises if you want to survive the drive.

And survive they have, despite what some might call a pretty bumpy road. After 2 years of marriage my mom moved to Texas to accommodate his work, which was followed 2 years later by his moving to Idaho to accommodate her PhD. At 9 years of marriage, while they were temporarily working in different universities in separate states, my mother gave birth to their first child (and my older sister) and my dad's epic journey to try and make it from Wyoming in time for the birth has become the stuff of family legend. At 11 years of marriage they gave birth to their second child (yours truly, of course) and were told to "just take her home and love her as long as they had her" due to a fatal disease called cystic fibrosis.

At about 15 years of marriage they moved again, this time back to Houston for my dad's job, and 6 months later my mom moved back with just the two kids in an effort to stabilize my health. Thus began somewhere close to 9 years of commuting -- sometimes between CO and TX, sometimes further (like to MA while my mom received her third advanced degree) -- for my father, who nonetheless managed to be present for nearly every soccer game, horse show, or badly costumed school play. (Major kudos to BOTH of them for pulling that one off, by the way.) The separation ended at about 23 years, when my dad finally returned full-time to Colorado. Shortly thereafter, both my parents moved their jobs (but not their family) to a larger city in Colorado. Around 27 years they sent their oldest daughter off to college, and my dad began a family tradition by driving her cross-country himself, with pit stops at the Grand Canyon and Vegas on their way to Los Angeles. My own trip, 3 years later, would include stops all along the Deep South, including Abilene (the origin of this story), Shreveport, Jackson, and Birmingham en route to Atlanta. My mother flew out to meet the weary travelers at our final destination and help move into college, and both times my dad snapped a picture of the departing daughter walking away from the rental car on her way into the dorm solo, turning back for one last wave and a smile before beginning college.

If parting is sweet sorrow, then my parents have certainly worn that emotion into the ground. At 38 1/2 years my mom left again -- this time to stay in New York with me while I awaited lung transplant. At 39 1/2 years, my parents received the gift of knowing that the dire predictions of my original doctor were wrong, and this gift came in the form of the ultimate gift from some other family -- another set of parents, another spouse of another loved one. And at 39 3/4 years, my mother returned back to CO to complete that cycle -- though it was and is hardly the completion of their collective journey.

And now, at 40 years, they have been Texans, Idahoans, Wyomingites, Coloradans, Massachusonians, and New Yorkers; between them they have no less than 4 post-graduate degrees and have been lawyers, small business owners, researchers, politicians, professors, authors, deans, and honorary nurses; they have traveled to 6 continents and spent at least some time in pretty much any place you can think of; they have friends all over the world; they are loved and admired by many (myself included); they are two of the smartest and kindest people I know, by far; and they are still the parents of two living children and two very sweet dogs (and the "grandparents" to one pretty roly-poly shorkie).

Congratulations, Mom and Dad. Erin and I love you and can't wait for the four of us to celebrate 50 years together.

Christmas v. The Beatty Family: A Case of Sleds, "Star Search", and Serious Overcrowding

2010-12-25T01:41:00.001-05:00

Opening Statement

Good morning, everyone. So glad you could make it out on this chilly December 25th, 2010.

Christmas is that magical time of year when anything and everything seems possible. Everywhere you look people are talking about compassion, love, and spreading what they call "The Christmas Spirit" (which is, I have learned through the years, really just code for "The Way We Should Live Every Single Day of Our Lives", but I digress). Anyway, people are smiling, hot cocoa and candy are available in abundance, and for once in their lives even NYers seem to feel that it's alright to wear a monochromatic suit and a red stocking cap with a little pom-pom stuck on top. Meanwhile I saw not a single PETA volunteer on the street in protest of the obvious cruelty inherent in forcing artic deer to pull a fat guy in a flying sleigh into some seriously tropical climates. And that, ladies and gentlemen, is truly a Christmas miracle.

But even with all that aside, there's another reason why I really do adore this particular holiday. That reason, of course, is simple. Because for an inventive little kid with an overactive imagination and a knack for making up stories (even if said stories never make it beyond her own head, as is often the case), Christmas is, to put it mildly, A.Gold.Mine. No joke.

Or maybe it's just in MY family that Christmas is not only the most wonderful, but also the most comical, time of the year. Seriously, if something weird is going to happen (and trust me on this one, with my family something weird IS ALWAYS going to happen) there's at least a 75% chance that it will happen on or around Christmas Day. Coincidence? Maybe. Bad luck? Nope, I don't think so. Personally, I'm going to go with the theory that God finds us amusing, and therefore we're just a really great birthday present for his Son. You know, just a thought.

Anyway, I can tell you're not fully convinced, which means that I'm going to have to give you hard evidence to make my case. So sit back and enjoy, ladies and gentlemen of the Christmas jury, and please remember that the eggnog in the jury room is most likely spiked due to counsel's slightly wicked sense of humor. Enjoy.

Exhibit A -- The Runaway Sled:

One of the first Christmases I remember fully was in Colorado. At the time, we were what you might call "between houses" (we had just moved back to the state from TX) and I was probably about 4 or 5. Which, of course, made my sister slightly older -- she was somewhere either 6 about to turn 7, or 7, about to turn 8. But age aside, Christmas that year was AWESOME! Santa brought us both matching red sleds (a big deal in snowy Colorado) and we were super excited to try them out. Unfortunately, there were no hills in the vicinity, but no matter -- we lived on a mountain! And our driveway sloped straight down at basically a 90 degree angle! What luck! No need to ask permission, right? Mom and dad won't mind!

What follows is a pretty predictable story: girl meets sled, sled meets driveway, driveway meets truck. Ow. Note that my older sister was NOT on the sled at the critical moment for reasons that remain a point of contention (I think she sent me down as a guinea pig, she thinks I insisted on going first -- both are equally possible). Needless to say my mother wasn't too worried about the blame-game when a man approached her front door with me sobbing in his arms and uttered the phrase "I didn't mean to run over your daughter." Cue the ER, which I promptly decided was a great place to stop crying, stand up, and practice my "jazzercize" moves. Mom claims this was embarrassing. I think the only embarrassing part of the story is that any of us were into "Jazzercize." Ever. Hello, 1980s!

Exhibit B -- The Clumsy Reindeer:

And if, after that harrowing tale of driveways and jazz hands, you still require further evidence, please direct your attention to our next true story of Christmas Past. This one comes slightly later in the chronology, my guess is that I was around 7-8 at the time and my sister closer to 9-10. But even if I don't remember the exact year, I DO remember quite vividly the gift that my sister wanted.

See, my fashion-designer-in-the-making sister didn't want a sewing machine or a box of colored pencils. Nope, she wanted an official "Star Search" karaoke microphone with real voice enhancement and colored lights. Shrinking violet, she is not. Not to mention that this was the late 80s/early 90s, when everyone even semi-cool was perming their hair and lip syncing along with Milli-Vanilli. So of course, Santa wanted her to get this coveted mic (lucky us, right?) and he tried valiantly to deliver it on Christmas morning.

Okay, big guy. Let's just say that you get an "A" for effort on that one and pretty much a D- on actual performance -- though that last grade might be a little generous.

Santa did in fact deliver the gift. But he also tried to set it up, in which process the gift was ruined to the point where it no longer worked. It was, quite literally, a microphone with no microphoning capabilities. And I know, I know, it's not the gift but the thought that counts, but try telling that to a 9 year-old whose toy doesn't work. So Santa did what any reasonable fat guy with a liability problem would do in a bind:

He blamed it on Rudolph.

Turns out that clumsy reindeer had STEPPED ON my sister's gift. Never mind that it was delivered to an apartment with no chimney. Never mind that there was no snow in Houston and no good reason for a reindeer to slip. And really never mind that Santa should have left some time in his schedule to make a quick pitstop at K-Mart just in case. Nope, the reindeer did it, plain and simple. I know because I read it in the note Santa left by the eaten cookies. "Sorry about the Star Search Toy - Rudolph stepped on it. But I will tell your Daddy to buy you a new one. Merry Christmas." Um, thanks, Santa. Hey, at least you won't have to pay the elves any overtime for this one, right?

Exhibit C -- An American Christmas in Paris:

And finally, esteemed jurors, I could hardly allow you to make your decision without hearing the story of the famous Christmas in Paris, which sounds sweet and romantic (and was indeed a lot of fun), but might also top the charts for craziest Christmas ever.

The scene: Paris, an apartment on the Champs Elysee, temporary home to my parents, my grandmother, myself and a friend from Colorado, my sister, and about 35 of my sister's friends from both the US and her study abroad program in Spain. At one point I was more or less sure that I was actually living in a youth hostel done up to LOOK like a single-family apartment. But no worries, my friend and I went on the Paris Metro to purchase a small tree. It was "decorated" with whatever was handy and topped with a cheesy (um, make that CLASSY) souvineer tour eiffel. Fantastique.

Meanwhile, my dad became obsessed both with seeing every sight in Paris at the cost of our collective sanity (Note to self: do NOT allow dad to purchase "best of Paris" ever again, or similar book for another country. Ever.) and the idea of a traditional bouche de noel (literally Christmas Log, or Yulelog - a rounded, log-like cake with filling). Forget that most people under 30 in the house spent a significant amount of time in the pizzeria down the street and that we were all of legal drinking age in Europe, which made things...interesting. The Champs Elysee, meanwhile, had turned into a full-on carnival for the millenium celebration (my sister believed the Eiffel Tower would "lay an egg" at midnight. Seriously. She thought that.) and it was pretty much impossible to do a headcount at night without instituting strict roll call a la Little Orphan Annie or a military academy.

Luckily, Christmas proceeded (and most of the houseguests actually left right around Christmas Day, I believe), but the day after (also known as my parents' anniversary) brought a massive windstorm that uprooted trees, closed the Metro, and did serious damage to several French landmarks - including the windows of the Sainte-Chapelle. Major bummer. Our vacation is literally still a topic of conversation for many Parisians, although I'm pretty sure they're not referring to the damage we personally caused. Or at least, I hope not.

If so, I am TOTALLY blaming Rudolph.

Closing Argument

There is more evidence, of course, like the time the dog (the family dog - not Sampson) got a raincoat and hat for his "present" and caused the cat to freak out, the "Christmas bush" we once used to celebrate in San Francisco, and the fact that I for years insisted that a very tacky multicolored foil pine cone with fake snow be placed in a prominent position on our otherwise pretty tree. (Of course, now I'm old enough I have my own tree, and the lights are indeed multicolored. So there.) Most families I know watch "A Christmas Story" so that they can laugh at the ridiculous antics of Ralphie and his family. Not my family though -- we watch it because we relate. Quite honestly, it wouldn't surprise me one bit if I end up with a pink bunny suit one of these years. I have some very crafty aunts, after all.

And so, ladies and gentlemen of the jury, I rest my case. I know that if you consider all the evidence before you, you too will arrive at one simple, indisputable fact: Christmas with my family is, without question, a ridiculous, crazy, silly, wonderful, miraculous, beautiful day.

In short, we are guilty as charged. And I wouldn't have it any other way.

****

Merry Christmas, Happy Winter, and a Peaceful New Year to all our beautiful readers.

Love,
Piper and Sampson Bear Beatty

Merry Christmas to All

2010-12-24T17:56:00.000-05:00

'Twas the night before Christmas, when all through the flat
Not a creature was stirring, not cockroach nor rat.
The stockings were hung on the windows, all there
For all of the family and dear Sammybear.

The streets were still busy, the stores all aglow
And in NYC there was still not much snow.
But better than snowflakes and better than cheer
Was the one special gift we were given this year.

'Cause when it turns midnight there will be no clatter
Of treatments and neb cups and all of that matter.
And those pills that I take are a small price to pay
For the knowledge that I will wake up Christmas day.

I'll spring from my bed with the greatest of ease,
I'll take a deep breath with no crackle or wheeze.
Then I'll run to my kitchen to grab some hot "joe"
And have one perfect Christmas, regardless of snow.

And E in her fashion and Sam with his toy
Will all settle in for some true Christmas joy.
While Mom and Dad truly deserve three big cheers
'Cause on Sunday morn they'll be hitched 40 years!

The lights will be lit and we'll say a quick prayer
In remembrance of loved ones, both passed on and here.
For those who are hurting, for those who are missed
And for all of us living, so joyful and blessed.

And we'll each give a moment to offer a smile
To the heroes out there who went the extra mile.
To those who save lives and to all who help fight:
Merry Christmas to you, and to all a good-night!

A Christmas (Party) Story, And Then Some

2010-12-15T00:05:00.000-05:00

Okay, so picture the scene: A beautiful, charming, stylish, and incredibly witty young woman enters a Christmas party. Let's just say (purely for the sake of argument, of course) that she is pretty much exactly 6 months out of a double-lung transplant for cystic fibrosis. She is also, it goes without saying, very humble and modest. Obviously.

At some point during this little get together, an old friend approaches. He smiles at our heroine and strikes up conversation. And then, having gone through a few basic courtesies, he launches right into the million-dollar question. "So," he says, eyes twinkling, "what have you been up to for the past couple of years?"

Wow. Are you sure won't settle for a detailed explanation of the laws of physics? Because I'm guessing that would be simpler, and take less time.

Okay, fine. I guess the simple answer to that question is right there on the left sidebar of this blog. After all, this is where I've been chronically my journey for the past 2 years, so what better place to look for a neat and tidy little explanation of the transplant experience? And right about halfway down is the handy little "blog label cloud", which proves that the 3 biggest topics discussed here have been the following:

Transplant, IVs, and Life.

Yep, I think that about sums it up. Thanks, label cloud!

The last year and a half of my life -- starting in about May or June 2009 and continuing right up to the present -- have pretty much been dominated by the idea of transplant, and for good reason. Actually, if you want to get technical about it, transplant started taking over way back in January 2008, which is when I first started the referral process for my evaluation. Because I gotta be honest here: once someone suggests that you might be better off ripping out one (or two) of your organs and replacing them with parts taken from a dead guy, well, let's just say it gives you something to think about, to say the least. I think, though, that for me in particular the idea of transplant really became kind of front and center in mid 2009, if only because that's when I officially left my job, asked my mom to move into my apartment, and got officially listed for new lungs. In other words, that was the time when transplant moved from an abstract concept that hovered generally in my future to a more concrete medical step necessary to save my life from end-stage cystic fibrosis. Wow, what a ride.

And, coincidentally enough, June 2009 is also the time when the topic of IVs hit center stage for me. Don't get me wrong here -- I was on IVs more often than not throughout most of 2008 and definitely the first half of 2009 (not to mention at least once or twice a year, every year, starting at about 16 years old), so they were already a well-established part of my life before that pivotal month. But it was in June of 2009 that I began, while on a boat trip off the Turkish coast of all places, to experience the fevers and other symptoms that heralded the impending demise of my first implanted port-a-cath after 9 years in my upper left arm. And it was, in turn, the death of this first port (and the systemic infection that accompanied it) that marked the official start of over 1 year of continuous IV antibiotic use. Oh, sure, I've had two or three short breaks -- with a definite emphasis on the "short," since none so far have lasted more than a week or two, tops -- but the fact remains that they have been few and far between, to say the least. In fact, this morning my transplant doctor examined my port and commented that it was a bit red. My response? "Give the poor thing a break." It's been working non-stop for a year (which is when I got port #2 placed, by the way). It is very, very irritated, and you know what? I don't really blame it.

Of course it goes without saying that I am grateful. I am grateful for the advancements made in transplant and the donor who offered his organs to save my life. I am grateful for the option to have a double-lung transplant, as I know it is a privilege that some never get to experience. I am grateful for there are IV drugs that still work and for the new, infection-free port that feeds them to me.. I am grateful for the doctors, family, and friends who have seen me through all of this. All of which is NOT at all to say that I'm not a little irritated with the whole process at this point. Because, just for the record, I totally am.

On the other hand, every minor (or even major) irritation along the way seems to come with a payoff now, and I guess that's where the whole "Life" thing comes into play. Because the last year and half -- and in particular the last 6 months -- have been, in many ways, more filled with life than I ever dreamed possible. I have been absolutely elated at new possibilities and tragically sad as I mourned the loss of my old lungs. I have been terrified of death and exhilarated by the hope and faith that everything would turn out as it should. I have triumphed and I have failed. And, more than anything, I have loved and been loved a million times over. Which is, in my mind, kind of what makes life worth it anyway -- and it definitely reinforces the idea that "Life" has made a up a very pivotal part of my journey. I hope that continues to be the case far, far into the future.

All of which the young woman briefly considered explaining to her friend before finally giving a huge smile and opting for the far more succinct: "well, it's been one hell of a crazy miracle, but I'm extremely grateful to have been given the chance to come along for the ride."

And I couldn't have said it better myself.

****

Speaking of Transplant, IVs, and Life, I had my 6-month check up today at my transplant clinic. Overall, things are still going great with these beautiful new lungs. My FEV1 continues to hover at about the 78-80% range for FEV1, which is pretty darn impressive when you consider where I was just a few short months ago. I am having some very minor symptoms, which led to a nasal swab to check for viruses and a bronch -- likely scheduled for later this week. I'm at peace with the plan, in part because I still feel pretty fantastic and in part because i still really trust my doctor and care team. As tough as transplant can be sometimes, they seem wise, compassionate, and capable in their approach to dealing with any issues that arise. And as much as I hope that the bronch doesn't lead to more IVs (because come on, let's face it -- I.DESERVE.A.BREAK.ALREADY!), if that does, in fact happen, I know that I'll deal with it and move on. Because IVs, while admittedly super annoying, are really just another part of Transplant when you get right down to it. And that, my friends, is just a fact of Life.

Enjoy the season, beautiful people.

All I Want for Christmas (Is My Two New Lungs)

2010-12-14T01:38:00.000-05:00

Every year the holidays roll around and hundreds of CF/post-transplant spouses and significant others are left struggling with what gift to buy their sensual, scarred sweetie. Tragically, many of these clueless Cassanovas will miss the mark entirely, presenting their beloved with a gift basket of grapefruit or a membership to the Raw Meat of the Month Club. But don't be one of them! Let us help you stuff her stocking and trim her tree with helpful and exciting drugs from all walks of post-transplant life. Trust us, she (and her lungs) will thank you.

Prograf: Sure, it's predictable, but the classics never go out of style. This pill is as important as the little black dress for the transplant patient who truly wants to strut that new organ in style. It also comes in a wide assortment of dosages (each with its own color!) for your convenience. Try .5 mgs if you're shy, or hit the ground running with the 5 mg stunner and show her how much you really care. Bonus features of this gift include frequent blood draws, a sexy tremor no one can resist, possible long-term neurological issues, and some sleepless nights thrown in for good measure. We bet you'll know how to fill the extra hours...be creative.

Cellcept: Kinda like prograf, but bigger and harder to swallow! This (not so) little pill is perfect for the transplant patient who enjoys trying out new viruses and crazy bacteria that remain relatively unknown to the general population. Thought the Bubonic Plague was extinct? We bet Cellcept can prove you wrong! Use of this drug practically ensures that you'll have at least a few days a year of quality bonding time in your local doctor's office and/or hospital. Also perfect for anyone who enjoys that special thrill of seeing their partner in a germ mask. Sexy.

Prednisone: Do you know someone who might truly enjoy injecting with insulin, eating two entire pizzas washed down with pickle-topped ice cream sundaes and three family-size bags of potato chips, then burning off the calories with a round of insomnia-fueled mania -- all while crying hysterically over that rerun of Saved By The Bell where Jessie got addicted to caffeine pills and was "so excited, so excited, so...scared"? Does that special patient in your life ever stand in front of the mirror dreaming of a rounder face and possibly some gorgeous facial hair to complete that "sexy cavewoman" look we all crave? Have a friend or family member who's recently been complaining that her mood is too darn stable and her weight too effing predictable? If you answered yes to any of these commonly asked questions, then you definitely need some prednisone for her stocking. Just make sure you hide your serving of the holiday dinner somewhere safe (and preferably padlocked) before she opens her gift.

Valcyte: If you crave side effects but immuno-suppressants just aren't your style, let our personal pharmacy shoppers hook you up with some fabulous Valcyte. CMV ain't got nothing on this little pink pill, we promise. And if you really want to show her you care, why not consider upgrading to the IV Ganciclovir version? We guarantee this little gift will have her Craving More Valcyte before the year is over!

Antibiotics/Antivirals/Antifungals: And just in case your special someone isn't a CMV mismatch, never fear: we've still got you covered! These drugs can treat everything from paraflu to pseudomonas to all the stomach problems that come as a direct result from treating paraflu and pseudomonas*! Still not sure this is the gift for you? Let us put your mind at ease: if your beloved is ever planning on going out in public again -- ever -- she needs these drugs. She probably needs them just to sit in the same room with you if YOU ever go out in public again, and she definitely needs them if she ever plans to eat anything. Seriously. Buy them. Now.

*Note: the author of this statement makes no representations as to the actual effectiveness of such treatment at actually easing the nausea, digestive issues, and other stomach problems that might arise from antibiotic use. She just knows from experience that too many antibiotics leads to stomach problems that lead to more antibiotics. Why this works (in theory, at least) is completely beyond her understanding of the human body. As an aside, she also admits that she did NOT do well in high school biology, which probably explains a lot.

Beta-Blockers: Need a gift for the transplant patient who has everything? Do you want to make sure your token of love goes straight to her heart -- literally? Then let us suggest beta-blockers. These drugs are 100% guaranteed to slow the heart and lower the blood pressure, likely while lulling your beloved into a nice, drowsy state that may or may not cancel out the insomnia and/or mania induced by other drugs on this list. And while a slow heart rate and lower blood pressure might not be exactly the response you're looking for in the heat of the moment, let us assure you that they are better than the alternative in this case.

All The Old CF Staples (Or Many of Them, Anyway): Hey, let's face it: sometimes it's just hard to let go. For the nostalgic among us, why not try a gift of some of your old favorites? Pancreatic enzymes? Yes, please! ADEKs/Source CF vitamins? Sign us up! Hey, even the occasional round of TOBI, Colistin, or Cayston can make an excellent stocking stuffer. Remember: we all like to be surprised once and a while, but some drugs are simply not going anywhere -- just like her CF pancreas!

Of course, if none of these suggestions tickle your fancy, be sure to check out our "Save on Healthcare Insurance Today" (SHIT) gift card program for .2% discounts off your loved one's next insurance premium, doctor's visit, or drug copay*. Sure, it ain't much, but with the current healthcare system, you should be glad we're offering anything at all. Gift certificates run $1,000,000 each and carry a maximum value of $5. Trust us, it makes sense.

*Discounts cannot be used to purchase any drug commonly taken by humans or to visit any licensed medical professional other than those who possess x-ray vision and are able to leap tall buildings in a single bound (some exclusions may apply within this category). Certificates are void on weekends, holidays, and any day ending in "Y". Gift cards purchased through the SHIT program are non-refundable and may result in higher payments in the long run. We apologize for any inconvenience these restrictions might cause and assure you that our staff is working on a timely and effective solution. In the meantime, if you have a problem with any of the above, please keep quiet and do nothing -- as anything else could seriously dampen our holiday spirit and bottom line. Thanks in advance from the Scrooge Healthcare System!

Happy shopping!

A Prayer in Celebration of Time

2010-12-12T21:36:00.000-05:00

And time yet for a hundred indecisions,
And for a hundred visions and revisions,
Before the taking of a toast and tea.
--T.S. Eliot (The Love Song of J. Alfred. Prufrock)

Time is kind of a funny thing, when you think about it.

5 months and 29 days ago I couldn't breathe. I could barely put one foot in front of the other without feeling as though the world was falling out from under me. I woke at night coughing, gasping -- startled out of slumber from dreams where I was drowning in a swirling ocean and unable to break the surface. I preferred to sleep on my couch over my bed, not so much because of physical comfort (there was, in my mind, no such thing as real physical comfort anyway), but because somehow I had the sense that in the living room it would be harder for me to slip away entirely. Proximity to people -- to anyone, really -- became my lifeline. Literally.

5 months and 29 days ago, by the way, my dog preferred to sleep elsewhere as well, mostly with my mom. My continuous coughing and weird gasping left him visibly uncomfortable, and his puppy brain compelled him to offer me gifts of his favorite squeaky toys or bones and then retreat, if possible.

5 months and 29 days ago, throwing up was an almost daily occurrence -- not that it ever got any less disgusting, mind you -- and eating was a serious chore on par with other nearly insurmountable tasks, such as climbing a short flight of stairs or walking to the end of the block.

But 6 months ago today, all of that changed.

Today marked exactly 6 months from the day I was wheeled into surgery around 1 in the morning with mucus-filled CF lungs and wheeled out about 5 hours later with wonderful, brand new (to me, at least), healthy lungs. It is 6 months to the day from the moment I awoke in the Cardio-Thoracic ICU, unable to speak because of a ventilator tube and unable to think straight because of a ridiculous amount of drugs, but desperate to communicate about everything from my thoughts regarding visiting hours to my desire to know my O2 saturation and heartrate. 6 months since I sat in my bed taking stock of each individual digit (my memory is of slowly moving one finger, then thinking to myself "okay, that's alive" and moving on to the next small appendage, which is somewhat of a testimony to one's emotional state right after such a major, life-transforming surgery). And it's been 6 months, to the day, since my support team near and far read this untitled post by my beautiful sister, and left the comments that would make me laugh, smile, and use 10 minutes worth of strength and concentration to try and formulate some form of reply to in the days to come.

It was 6 months ago that nearly a year of waiting on the transplant list and 28 1/2 years of treatments, airway clearance, and lung infections were brought to an end. (Well, that's almost true -- I remain susceptible to lung infections, though the scale is different, and I was sent home from the hospital on airway clearance, nebu lizers, and IVs. I have since dropped the airway clearance entirely, and hope the other two will follow suit in due time.) I have spent 6 months learning the names, dosages, timing, and side effects of my new rainbow regimen of anti-rejection, anti-infective, and other drugs. 6 months since my medical vocabularly expanded to include things like CMV-mismatch and bronchiolitis obliterans syndrome (BOS). And it's been 6 months since I began the lifelong learning process of how to deal with life when the lungs that keep you breathing are no longer the lungs that were made for your body.

How weird to think about on an intellectual level.
How crazy to even imagine.
How beautiful to experience.

And now, 6 months from that day, that hour, that instant when the whole world turned upside down and inside out and backward: I. Feel. Amazing.

I have walked miles along the beautiful streets of Manhattan.

I have visited friends and spent nights unencumbered by treatments or O2 concentrators.

I have celebrated 29 incredible years on this Earth.

I have purchased a new apartment and had dreams about a new life and all that comes with it.

I have attended my sister's fashion show.

I have had people tell me to slow down while walking because they can't keep up.

I have annoyed my dog by refusing to stop our walks when he wants to linger.

I have lifted my glass in toast to my godmother on her 60th birthday.

I have laughed and not coughed . . . honestly.

I have been blessed with a community of CF/transplant friends who share my doctors and with whom I can speak openly about any issues that arise.

I have chased and played fetch with my puppy, who is no longer afraid of my breathing

I have, and will continue to, give thanks for every moment -- even the not-so-wonderful ones.

I have also visited my doctor more times than I can count, had well over 10 bronchoscopies, been treated twice for mild rejection (once with oral steroids, once with IVs), endured several rounds of IV antibiotics, cultured a couple of new bugs along with some of the old critters, watched friends suffer from chronic rejection, given myself shots for blood clots and low WBC counts, received weekly blood draws to test the drug levels in my system, and suffered shakiness, migraines, high heartrate, insomnia, changes in my appearance, and nausea -- to name just a couple of the many, many side effects. None of which change the fact that, for really the first time in my entire life, I can take a deep breath and actually feel it reach down into my lungs.

I haven't made much of a to-do about this half-year anniversary, to be honest. I'm not sure if many of my friends or even my family members realize that today marked 6 months on this unbelievable roller coaster ride. And that's fine with me, because as far as I'm concerned I don't need to be anything except Piper in their eyes. I don't need to be someone 6 months out of a miracle when I could instead be someone 29 years into being a friend, a daughter, a sister, a lover, a cousin, a coworker, and, quite frankly, a force to be reckoned with (for better or for worse). And honestly I feel that perhaps the greatest gift that my beloved Donor Bob gave me with these lungs was the freedom to move through existence not just as a patient 29 years into CF or 6 months into transplant, but as a woman with part of her life behind her -- and a whole lot of living yet to come.

So thanks, Bob, for the breathing and the beauty. For the miracles and the mistakes. For the smiles and the sighs. For everything that you've helped make possible in these last 6 amazing, indescribable months. And for all the wonder we have yet to experience together. Because, God willing, there will be plenty of time.

For everything.

Amen.

An Open Letter to Everyone I Love

2010-12-03T02:38:00.000-05:00

Dear Beautiful People:

Hi again, everyone. This is Piper -- your friend, family member, (ex-)girlfriend, acquaintance, classmate, peer, colleague, student, teacher, or enemy -- writing just to check in and send a little message via this vast cyberspace universe we call the internet. The thing is, I really want to reach out to all of you. I guess because I am, in some ways, someone you might not have met before. And I want you all to know who I am and where I am now...even as I'm still discovering it myself.

First of all, I have to lead with what is quickly becoming my standard catch-phrase: thank you. Thank you for all the times you slowed down to walk with me or drove your cars right up to the doorways of restaurants so I wouldn't have to cross the parking lot. Thank you for pausing the conversation while I coughed, and thank you equally as much for resuming it quickly without any awkward silence when I was finally finished. Thanks for putting up with the treatment machines that took up too much space in our dorm room. Thanks for being in videos for the CFF and for pledging donations to my Great Strides walks. Thank you to everyone who came with me to the doctor just to keep me company, ever. I know that wasn't fun for you, no matter what you said at the time. Thank you for offering me a shoulder to cry on and for not always expecting me to cry. Thank you a million and one times over for never saying "are you sure you can do THAT?" unless it was really, really, really necessary. Thanks for listening. Thank you for telling me I was pretty when I looked way too thin, and thanks for understanding that sometimes eating that extra helping is not so much a privilege: it's just one more chore out of way too many. Thank you for being with me and teaching me so so much more than I could ever repeat here -- from basics like how to ride a bike to more advanced stuff like all the words to "Gangsta's Paradise" by Coolio. Thanks for not teasing me that I once listened to Coolio. Thanks for dragging me to all those concerts I didn't want to go to and for making me see that electronica just might be a valid form of music...maybe. Thank you for all the lessons you have yet to bestow, of which I am quite positive there are many.

In other words, just thanks to everyone. You have enriched my life beyond measure.

To those I have ever fought with, I also want you to know that I'm sorry. It's taken me 29 years (and counting) to realize that only really simple questions have easy answers. "Where's the milk?" comes to mind, or maybe "what's the approximate distance in light years from here to the sun?" -- boring stuff like that. Most things worth asking ("what's the best approach to balancing the budget" or "how the heck does my dog continue to gain weight when he's been on a diet for like a year and he's supposed to be a shih-tzu/yorkie mix, for crying out loud?!") are a little more complicated. So I am sorry -- not for voicing my opinion but for any time when I might have made it seem like yours wasn't worth hearing as well. That's not a fun way to have a conversation, and it's something I'm trying to work on, I promise.

Okay, so that's out of the way. Now on to the more exciting stuff.

This past year has sucked. I can freely acknowledge that fact now, much as it pains me to admit that an entire year of my life was, generally speaking, not a whole lot of fun. And that is painful. I feel a little bit cheated, honestly. I liked where I was and where I was going before this whole house of cards collapsed on top of me, and sometimes it's tough to look around at the rubble and say "huh, well at least it wasn't made of heavy rocks." Don't get me wrong, I do try to be positive, but I'm also willing to be realistic from time to time. And I would say that having one single solitary month with zero IV antibiotics in the past two years is a little sucky. It just wasn't very enjoyable, despite individual moments that were, of course, major exceptions (and most of those were due to you guys anyway, so you already know about them).

Right now, though, as I sit pounding these keys way too late at night despite the fact that I need to get up pretty early tomorrow, life decidedly does not suck. Not even close. In fact, I would venture to say that life right now is the opposite of sucky (which, fyi, is totally not to say that it blows). I just finished another round of IV antibiotics tonight and, yes, I do admit that there are still a lot of health-related issues going on in my life. I dare say there might always be a lot of health-related issues going on in my life, though, so honestly I'm not too torn up about the drama right now. But the thing I want to stress is that I feel so profoundly and totally different than I did last December 3rd. I feel, well, I guess one word for it might be "changed." Another might be "really f-ing lucky." You know, whichever one works for you.

There are, of course, the obvious differences. I can breathe -- that's a pretty big one. I do not, for the most part, do "treatments" anymore, aside from IVs and some nebs, neither of which are permanent fixtures in my routine by any means. I don't remember the last time I coughed so hard I threw up, but I know it was at least 6 months ago. I look somewhat different, too, as I have more color and am at least creeping my way toward a healthier weight. Oh, and I sound like an entirely new person. My "cough" now actually makes me laugh, that's how pathetic it sounds to me after that CF monster cough. So there are some very noticeable changes, and I like that -- it shows people how incredible transplant really is, and the importance of oxygen for everything from HR to hair growth.

There are also other, more subtle changes. People don't stare at me in public anymore, which you might not have noticed anyway but believe me -- I did! My dog really likes to cuddle up really close to me, whereas my breathing used to actually make him nervous, which kind of shows how amazing animals are when you think about it. I can stay up this late typing and know that I'll be okay tomorrow, even if I am a bit tired. That one is huge. Oh, and then there's the fact that I feel like I'm a little bit stronger.

Yeah, I said it. Sorry.

Let me be clear: I do not in any way, shape, or form believe that one has to have a lung transplant to be a strong person. Nor do I believe that everyone who has had a lung transplant is somehow miraculously stronger than those who have never had to have a transplant, or had any health problems at all. Frankly, I've always joked that what doesn't kill you, um, doesn't kill you. Anything else is just a bonus. From my experience, people generally rise to the occasion because they have to, not because they're just that amazing. And I, for sure, am a perfect example of this general rule. Which is why I'm so excited about this change and why I feel the need to tell you about it here.

In case you were wondering, here's what I mean by stronger:

-I care a lot more about people other than myself, and I work harder to put myself in their shoes. People have shown me so much love, light, and strength this past year (and before) that if I really stopped to tally the score I'd probably have a nervous breakdown. So I don't do that, but I do try as hard as I can to remember that a little kindness goes a long, long way. I've seen what positivity can do in this world, and I'd rather be a part of that than working against it. I want to be someone people want to be around, and I definitely want to enjoy being around myself. It's an ongoing process, to be sure, but I think I'm making progress.

-I'm happier with who I am, period. No, not because I'm healthier (I am, but I'm still sorting through a lot of issues, so it's not quite like I'm "healthy" all the time). Not because I'm doing more productive things with my time (I am decidedly NOT doing more productive things with my time, much as I enjoy the things I am doing). I think it's because I just figure I fought hard enough to save myself, and others fought right there along with me, so I must be worth saving. I must be worth loving, because people do love me. Okay, that's fine. It doesn't make me amazing, it just makes me human, and that makes me good enough. I'll keep working on my flaws and I'll just try to laugh at it all as I go.

-I know what I can survive, and it's a lot. Frankly, I am one tough chick, no joke. And this is, to be honest, a little surprising to me. I always knew I was assertive to a point, but I rarely considered myself actually all that strong. Strong beliefs, strong opinions, strong body, strong intellect...okay, maybe at various points in my life. But strong as a person? Eh, I had my doubts sometimes. The difference is that now I know, with total certainty, that it is going to take a monsoon of epic (you hear me, Tom? EPIC) proportions to knock my boat out of the water. I'm sure things will still hurt me (and, quite frankly, I think that's good, as I would never want to get so hard that I couldn't get my feelings hurt), but I have all the faith in the world that I will keep sailing. And that, eventually, the seas will calm and I will be happy and whole again -- and maybe even stronger, to boot.

I owe some of these changes to God. I owe some to circumstances, however you believe those come about in our lives. I owe some of them to myself and to the resilient spirit that I now know I posses. And I owe a ton of these -- most, I would say -- to you guys. To the people who have influenced my life and guided my rudder every bit of the way, even if the lessons you taught weren't always what I wanted to learn.

All of which is just to say this: the me that I was, the me that I am now, and the me that I will always be adores you. All of you -- past, present, and future. And some things, at least, will never change.

With love, light, and endless gratitude,
Piper

What I've Learned (So Far)

2010-11-10T19:43:00.000-05:00

Alright, so when we last left off I believe I was on IVs for pseduo and aspergillus, and they had recently discovered mycobacteria in my lungs as well. Of course, a lot has happened in the weeks since then, most of which is far too boring to repeat here -- a fact for which I am eternally grateful. So I'll just stick to the highlights (and lowlights, as the case may be):

-The mycobacteria was identified. I had a CT scan which did, in fact, show a few nodules in my lungs. However, nothing too concerning, so we decided that at this point, it's probably better not to treat the pesky stuff. We're hoping the nodules will disappear on their own (I know many people who have had this happen, so I'm pretty optimistic). My theory is that I will walk through fire, if need be, to keep these lungs healthy, but I also trust my doctors and know that sometimes a nodule is just...well, a nodule. And it's gonna take more than a nodule to bring me down, I promise you all that.

- Unfortunately, the very clinic visit that brought news of the apparently benign nodules, also brought a nasal swab due to a cough/runny nose combo. The nasal swab itself was comical, mostly because my poor doctor clearly doesn't enjoy inflicting discomfort, whereas I have CF and kind of just wanted to take him by the hand and explain that I've had about 600,000 of these things in my nearly 29 years on this earth and really just don't care. Luckily we got through it together (classic doctor/patient teamwork on that one), but unluckily the result showed parainfluenza -- a pretty common virus that tends to cause the common cold, but in transplant patients can be far more complicated. So I got to add an oral antiviral to my 3 oral antibiotics, 1 oral antifungal, 2 nebulized antibiotic/antifungal meds, and three IVs.

-On the plus side, even that didn't stop me from sharing a fantastic weekend with my beautiful cousin Gloria, who came to visit and enjoy everything from Dylan's Candy Bar here in NYC t0 a Broadway show. Really, is there anything better than family? On top of that, Gloria and her husband and 4 beautiful kids have participated in TONS of CF fundraising and activities this year. They have been an incredible support for me and the members of my immediate family (as have all my extended family members) and they deserve special recognition for the kindness and love they spread like wildfire everywhere they go. I am blessed beyond measure by my family, and I can't say it enough.

-I eventually came off theses drugs, and one-by-one they started dropping like flies. Seriously, is there any better feeling than tossing that empty prescription bottle? Or pulling that IV needle out of your port and jumping in a hot shower? Answer: yes. The better feeling is getting your energy back, feeling on top of the world again, and being able to eat everything in sight. That, my friends, is pretty indescribable.

-But sometimes even hard-won victories are short-lived. Which is why, today, I had a repeat bronch to make sure all the bacteria were gone. And unfortunately, they are not. There is a LOT less of them, which is awesome, but in the world of pseudomonas and new lungs, better is rarely good enough. All of which means that I will be restarting IVs this week, though hopefully on a much smaller scale. I'm just waiting to hear from the doctor about what drugs we're going to use and for how long. The silver lining is that we're on the right track, and the nodules (while still there) have yet to cause any issues.

My doctor did say that this sort of infection cycle is not uncommon in CFers immediately post-transplant. He isn't concerned, which gives me a lot of confidence, and he thinks that we just have to get over these humps to get to the other side. I may have mentioned before that I think I have a fantastic transplant team, and I trust them wholeheartedly to wipe out whatever is growing in there. Plus I'm pretty sure this psuedo wasn't counting on my total determination to kick its butt when it decided to attack my lungs. Bad move, bacteria. Better luck next time.

But the most important event of these past few weeks can't really be captured in a bullet point. Basically, this whole roller coaster of up and down and infection and meds and viruses and life and everything in between forced me to somehow reexamine what I thought transplant would be like. I know it sounds weird that I'm almost 5 months post-transplant and talking about my expectations for life after surgery (guess I'm a bit of a slow learner!), but the truth is I think it's taken me this long to even wrap my head around what has happened to my body. Around all that I've won and all that I've lost. Around all the blessings and all the challenges. Around the partnership between me and the wonderful Donor Bob. Around...life?

The fact of the matter is that transplant isn't perfect. There, I said it. And I mean it. More and more I'm learning that transplant is a mixed bag -- a lot of very wonderful things and a lot of annoying, sad, or downright scary things. Which is okay, really, because what thing in life doesn't come with a few kinks in the line? What experience worth having has ever been super easy? So while sometimes (like now, when I've been fighting pseudo for over a month), I still feel more or less like I did when I had CF lungs, there are other days when I feel like I could literally climb Everest if I had a warm enough jacket. And somehow that works for me. That balance, imperfect as it might be, is really all I need. I'm pretty sure perfection wouldn't suit me very well anyway. That said, I'm willing to try it if I get the chance (hint, hint, right God?).

The thing about where my life is now, in my opinion, is that it's really...well...normal. It's pretty run of the mill in a lot of ways. True, most people aren't immuno-suppressed. They can order raw fish in restaurants and they can go to crowded concerts without a thought. They also probably didn't have a bronch today, just as they probably won't have one ever, and they aren't breathing with someone else's lungs. They might have never been on IV antibiotics and they don't spend much time in hospitals if they're lucky. So when I say my life is "normal", rest assured that I don't mean that my life is the same as your typical 28-year-old's. It's not.

But it is similar to other people's lives in the sense that everyone faces this kind of thing, albeit on varying scales. Everyone goes through highs and lows, and everyone has disappointments and struggles. The more I live with these new lungs, the more blessed I feel to know that my story, in many ways, is pretty much what we call life. It's comforting to know that although our stories are uniquely ours, they are also, in many ways, one and the same. I'm not going to claim that I'm perfect at remembering that all the time, but I am getting better, and that's one lesson I'm insanely grateful to have had these extra 5 months to learn.

None of which is to say it's not frustrating to have to restart IVs, or go to a last-minute bronch, or deal with scheduling snafus or waiting rooms or whatever other challenges life decides to throw at you. These things are annoying, and frankly I think it's okay to react to them -- up to a point. But in the end I might venture to say that maybe these challenges help keep life interesting, and even more importantly: maybe they're not any better or any worse than what anyone else is going through. Maybe we can learn how to feel our own pain and summit our own mountains without comparing them to the hurt or the obstacles faced by others, and while still supporting others in their climbs. And maybe the best thing we can all do to honor our collective struggle is to trust that together, we'll probably make it through. Or at the very least, have a whole lot of fun trying.

And at the end of the day, there is in fact an "I" in "community", but it's only one letter out of many.

With love and light.

Miracle Marathoners and Radical Runners

2010-11-08T22:19:00.000-05:00

Okay first of all, I think it's time for me to swallow my pride and offer you guys a serious and very heartfelt apology. I know I probably qualify for worst blogger of the year award at this point, a title that I'm 100% ready to accept for myself given the complete lack of updates for the past month. What I am not willing to accept is the fact that I apparently worried some of you with my unannounced hiatus taken right after the announcement of some minor medical issues. And for that, I am truly sorry. Please rest assured that I am fine, have finally come off of the IVs and many of the oral antibiotics, antivirals, and antifungals I was using to combat these infections, and have simply been taking some time to 1) live my life, and 2) reassess the direction in which this blog is going to go from here on out. But I'm back, I promise, and I'm going to be around a whole lot more starting right about now (cue the scary music, right?). So please stay tuned for some pretty cool new stuff that is in the works.

Anyway, I just couldn't let this weekend pass without mentioning a few absolutely awesome people and flat-out fantastic accomplishments. These four individuals inspire me to no end pretty much every single time I get the pleasure of seeing or talking to any of them, and I thought it important to share their incredible feats with the rest of the CF community.

1) Remember Ben? Well, on October 10, 2010 (10/10/10, for those who like that sort of thing), Ben ran in the Chicago Marathon to benefit the Cystic Fibrosis Foundation. Despite ridiculously hot temperatures that left him dodging fellow runners who lost their gatorade in the middle of the run (um, ewww), Ben not only finished but also beat his 2009 time for the NYC marathon and raised several thousand dollars toward a cure for CF. As an aside, tomorrow is also Ben's birthday (and that of his twin brother, Nate). Congratulations to both of them, and a HUGE thank you to everyone who donated, to Dianna and George (Ben's amazing parents, who were also a big support throughout my transplant), and all the runners on the CFF team. Well done, guys.

2) Many of you have probably heard of Emily Schaller over at Rock CF and Mandy Sharpe at Run Sickboy Run and CysticLife -- both incredible women doing awesome things for the CF community and beyond. Well, they've done it again. These two are collaborating to bring you the Outrun CF Virtual Run event.

-What: A fantastic event where CFers and their loved ones/supporters from all over lace up their shoes and hit the tarmac/trail/track to show their commitment to fighting CF and staying healthy. Held on March 20, 2011 (the same day as the Rock CF Half Marathon), this event will allow you to participate without the pesky trip to Michigan (although people in the area should totally head out to the real deal!).

-How: Easy. Just register, track your training using all the helpful tools provided, and then on the big day head out to run as much or as little as you can to show CF who's boss.

-Where: Your town, your street. No travel required.

-Who: You, of course. And all your friends and family. Naturally. Because I happen to know all my readers are some seriously cool people, and you must have some seriously fun people in your life willing to take this challenge for themselves and for YOU.

I'll be running, and so will Donor Bob (or his lungs, anyway). Hope we'll "see" you all there!

3) Okay, this one blows.my.mind. No joke. Nearly a year ago I was blessed to make the acquaintance of a very special man with CF who was also awaiting transplant at my center. He had a tough wait and many dry runs (though I would ultimately beat him on that score, ha), but his commitment to exercise and his never-say-die attitude convinced me beyond a shadow of a doubt that he would get his lungs...and he did. Several months before me, in Nov. 2009, my friend received his perfect match -- and then blew us all away by being out of the hospital in a mere 6 days! And now, less than a year later...well, I can't even describe the awesomeness of what he's doing. Just go HERE and see for yourself. Trust me, you don't want to miss this.

Congratulations, Tim! We are all so proud of you!

(His wife, Beth, also runs a CF charity that deserves a shout out as well. Check out Breathe for a Cause.)

As an aside, Tim and I were lucky enough to share a surgeon to whom we will both be forever grateful, as we are to the entire team at our center.

Love and light, beautiful people.

Of Bugs and Blessings

2010-10-13T13:26:00.000-04:00

Okay, seriously, I think something out there is mocking me for complaining about not really having much to write about on the CF/transplant front lately. And when I say "mocking," what I really mean is "trying to drive me insane." Because there has been A LOT going on here in the past couple of days. And while it's mostly not what I would call particularly good news, it has served as a much-needed reminder of all I have to be grateful for, and everything I've gained since June. Which is, you know, never such a bad thing to be reminded of when you get right down to it. On the other hand, I think I've learned my lesson now.

Can we go back to boring, please? I promise I'll be good and not complain. Honest.

The first thing that happened, as you may or may not know from the blog, is that I had a bronch and got a little sick. That, in and of itself, is neither uncommon nor a particularly bad sign. Most likely it was more a reaction to the sedation anyway, and not any sort of indicator of overall health. Because the fact of the matter is I feel more or less fine, and I certainly felt great going into the bronch. If anything I've been living life a little too much lately (wait, is that even possible? But I know you guys understand what I mean). It just feels beyond amazing to be able to breathe, to have the freedom and the energy and the time to go where I want and do what I want and come home and not be run ragged. I can't even explain it. And that is definitely blessing number 1, since we're counting and all.

But anyway, I got a little sick (okay, fine, it was a lot sick - only it was for like 2 days instead of weeks, which is the big difference between now and before if you ask me), and then I got better. And then we found out that I had pseudo and aspergillus growing in my lungs - most likely stowaways from my CF lungs that had been hanging out in my sinuses and main airway, both of which still have CF of course - and we started treating those with IVs and nebs and orals, just to be safe. Which, of course, was all well and good especially for those of us in the "better safe than sorry because I no longer have an immune system to speak of because I (heart) my lungs and want to keep them" camp. Basically I was grateful to have treatment options, grateful to be able to do things from home instead of in the hospital, and grateful to have had 3 weeks off of IVs from Sept until October. All was right with the world.

A couple of days ago, my doctor called to tell me I had a new pathogen in my lungs - one not there (to any of our knowledge) before my surgery. This new bug is called Steno Malt, and interestingly enough another of my CF friends had recently cultured it as well. (Interjection: not only is this bug not passed person-to-person, but this friend lives out of state and I haven't seen her since my transplant, nor have we exchanged anything by mail. So unless the bug jumped out at me through her FB page, I'm guessing this isn't a cross-contamination issue. If bugs are spread via FB, on the other hand, the CF community is, in a word, screwed. Talk about giving new meaning to the term computer "virus.") Okay so fine, I have Steno Malt. The good news is that with my new lungs not having CF nothing is likely to colonize in there. So we discussed treatment plans, added some antibiotics, and I went on my way. No used crying over, um...spilled (Steno) Malt?

Fast forward to today, when I got yet another call from my doctor. Yeah, that's right, here we go again. Only this time it was a little weirder and little more creepy, to be honest. Apparently I have a mycobacterium in my lungs. No word yet as to which - only that it is NOT tuberculosis and NOT mycobacterium avium complex (MAC). I guess that means it may be abcesses, but again - we're just not sure. I am going to take the cautious route and have a CT to check for any possible nodules, which can be a byproduct of these bacterium and can, so I understand, cause all sorts of problems. Depending on the results of that, and the culture when it finally grows out, we'll devise a treatment plan (if any). In the meantime, I figure I can only make the situation worse by freaking out. Many of these myco strains aren't even really issues, and again, it's unlikely to colonize at this point from my understanding. Also, I can't stress enough that I don't appear to have an active infection right now. I'm feeling pretty good (tired from the drugs, but good), and my PFTs are totally stable. I'm so so grateful for that - and for the fact that my new lungs are still holding up beautifully despite this onslaught. Sorry, CF, you're gonna have to take your reign of terror elsewhere, because I'm not buying it. Welcome to blessing number 2.

I kind of feel peaceful about the whole thing, or as peaceful as it's possible to feel while still being (admittedly) a little freaked out. I have an entire team of great doctors who seem to be all over this - I even ran into my CF doctor yesterday and she's being consulted as well. Nothing makes me feel more secure than knowing that they have a plan (even if that plan is to do some tests and see...or even just wait) and that they're communicating that plan to me. The fact of the matter is that I trust them. A lot. And I feel very well taken care of, much as I may joke about them being hyper-vigilant. So right there: blessing number 3.

And finally, I realized at about 12:30 am this morning that yesterday, October 12th, was my 4 month transplant anniversary. Has it really been that long? And at the same time, has it really ONLY been 4 months? Wow. At first I felt a little sad that I had let the day pass without a celebration, to be honest. I mean, not that I need a reason to put on a fun dress and indulge in some really yummy food, but it's always exciting to have a special occasion, right? And then I realized that I hadn't noticed because I was too, well...busy? Happy? Not sitting around thinking about being "sick," even in the midst of all this madness? And that, friends, gave me more cause fr celebration than anything. I actually laughed out loud. To actually have a transplant anniversary is an amazing gift. To have a life so fun that you can actually forget about that amazing gift, if only for a short while, is, in a word: indescribable. Not that I would ever want to stop acknowledging and being grateful, but to have the chance to live so hard that I don't even think about my lungs? I honestly never thought I would type those words. Blessing number 4, and 5, and infinity. That one counts for everything.

Oh, and thank you, donor Bob. We make an exceptional team. (PS: Sorry about the pseudo, and the steno, and the myco. Wish I could make these silly bugs leave OUR lungs alone!)

So yes, I've learned my lesson. I'm back to counting my blessings out loud, which always seems to help when I feel a little overwhelmed, and to be honest I keep coming out ahead in my tally. I know how lucky I am to be able to look at this as a "rough patch" rather than the rest of my life. I know how precious and fragile this gift is - how much it is meant to be loved and enjoyed and cherished for exactly what it is...not a cure or a rebirth so much as a beautiful awakening. I know that God has given me this peace for a reason and that I should trust. Mostly I just know that I'm happy and busy right now, and so far it doesn't seem like the pseudo or the myco or anything else has been able to take that away from me.

I also know that CF sucks. You know, just sayin'.

Hopefully I'm well on my way to getting back to boring. In the meantime, I'll just try and enjoy the ride as much as possible. And hopefully I'll keep on forgetting what day it is, even as I try to always remember to be grateful for each and every one.

**PS: Please take a second if you haven't already to check out the links on CF/transplant over on my sidebar. I recently added two amazing blogs (A Breath of Fresh Air and Seven Stars) by two wonderful women with CF who also happen to be personal friends and role models of mine. Everyone else on there is great too, and please send me an email if you'd like your blog on the list. I'd love to check it out.**

Perfect (Kind Of)

2010-10-06T22:54:00.000-04:00

Wow. Okay, so where to begin? For lack of a better intro, I'm just going to start with the important stuff:

I've been really, really sick.

Seriously, when I say "sick" this time, I really mean sick. As in, unbelievable-grossness-meets-super-sedated type sick. Or like...well, like CF sick, really, so I'm sure a lot of you out there know what I'm talking about. The high fevers, vomiting, lack of appetite, high heartrate, low O2, would-get-scared-but-any-emotion-just-serves-to-make-my-headache-worse kind of sick that no one ever really wants to go through. And I have to be honest, it wasn't particularly pretty. And of course it was compounded by the ever-amusing (except when they're not, in which case they are really, really NOT -- trust me on this one) effects of sedation. Wow. Good times to say the least. I think the only thing more fun than being hunched over the toilet while running a fever is being in that position and then looking around and not knowing exactly where you are or how you got there. Yeah, it was just that amazing.

That said, I survived. Thanks to the help of some very wonderful friends willing to put up with my randomly spouting nonsense due to the drugs and, of course, the passing of our good friend time, I was pretty much back to "normal" within 24-48 hours. Of course, the definition of "normal" right now for me includes both an aspergillus (fungal) infection and a pseudomonas (bacterial) infection. So no change to the plan, as I'm still doing the IVs, but now I get three drugs instead of one. Oh well. I'm kinda of the mindset that once you're on it really doesn't much matter -- might as well load the suckers up and wipe out everything at once, right? And the best news I got today (which is also, come to think of it, pretty much the best news possible...ever) is that the results from my biopsy are back and there is NO rejection. Question: is it weird that I feel an odd sense of victory over my own immune system? Not sure if that makes me the winner or the loser, honestly, but it means I get to keep breathing, so I'll take it.

As we used to say in college: major score, baby. (Which statement, by the way, has the unfortunate side effect of making my college friends and I look bad. We weren't normally this uncool. I promise. Kind of.)

Okay, so all that aside: the fact remains that for the past two nights there has been a sick presence in my apartment. On Monday night, without question, I took the grand prize. On Tuesday night, however, things got a little murkier.

The short story is that Sampson got the hiccups. I'm not entirely sure how it happened, though I think it was brought on by literally inhaling two organic mini milk bones. I'm pretty sure those things are just expensive crack for dogs, because Sam goes at them like a deprived junkie every time I head toward the treat closet. Which, to be fair to me, is less a "treat closet" than a "treat shelf" -- my dog is not spoiled enough to have his own closet, though I readily admit that the distinction is a fine one.

The larger point here is that, having acquired the hiccups, Sampson went what could maybe be politely termed "crazy." There are less polite terms, but I'm not going to mention them here, because they'll make my dog look like some sort of Dr. Jekyll and Mr. (Raw)Hyde. Suffice it to say that this was not good. In his panic, Sampson began by jerking around in a pretty solid imitation of a seizure, or an electroshock therapy patient -- by which I mean all-out, on-the-floor style convulsions. And, to be perfectly honest, he does this sometimes. (Yes, I'm aware that I am indicting myself for possible puppy neglect here, but it has, as a matter of fact happened before. My mom has even seen it. In my defense, the vet has declared him seizure free.) So I sort of wait the convulsions out, at which point he starts tearing around the apartment like a madman. And that's impressive, since the entire apartment is only three rooms and has hardwood floors. I swear that dog hit so many walls that if he wasn't prone to seizures before, he may be now. After which mad dash he ended up in the bathroom, he grabbed his bone for some hardcore gnawing, then ended up in my bathroom "digging" his way through the bathmat, and generally acting distressed. His grand finale included throwing himself on my bed and whining while trying to snuggle closer and closer to my body, and that continued until the hiccups subsided -- about 20 minutes later.

My emotions during this display ran the gamut from amusement, to concern, to near-panic, to cornering the dog and determining that yes, he did in fact have the hiccups and probably wasn't dying, to second-guessing that, to annoyance, and back to amusement mixed with a lot of relief when it finally did turn out to be nothing.

Okay so sick shorkie + recovering Piper = kind of funny, kind of crazy blog post. Case closed, right?

Well, maybe. And then again, not so much. Because the interesting thing about watching this whole performance was the realization that when faced with the hiccups, Sampson turned into, um...well...kinda...me?

Yeah, you read that right. What I mean to say here is that apparently, when sick, there is something deeper and gutteral that tends to take over, especially when we don't understand what's going on with our bodies. (Try as I might, I was unable to fully explain to Sam the nature of hiccups. I actually had him drink some water and "promised" him that it would make him feel better. It didn't. Then I remembered how much I hate it when people make promises about my health that don't pan out. Shame on me.) At any rate, the reaction Sammy had, though probably more physical and overt than what I would have done in a similar situation, was something I could definitely relate to on some level. I've FELT that need to run around and try to escape whatever is chasing me -- I've actually acted on it, though with lung disease that one is hard. I've FELT that need to grab on to something -- anything -- familiar and distracting. To retreat somewhere dark and lonely where I can go crazy in peace. And finally, of course, to whine and seek comfort. That one in particular made perfect sense to me. Right, mom?

Granted, Sam was suffering from a case of the doggy hiccups. I'm not going to sugarcoat things here: transplant is not mild indigestion. Far from it. But having so recently experienced my own first "real" illness post-transplant, and acknowledging that I really do have no clue how to manage this "new" body of mine, I couldn't help but empathize with my scared little puppy. Not that I'm claiming this is some sort of mind-boggling revelation or anything, but I really do find some comfort in knowing that maybe I'm not alone in my reactions to feeling out of control sometimes. Maybe we all need a little retreat into the bathroom to try and dig our way to freedom from the tiles. And once we're done with that, it's nice to have someone to curl up with -- preferably someone willing to listen to you whine.

The moral of this story (if there is one, I guess), is that I've now had my first bout of random sickness post-transplant, and Sampson has suffered the effects of his own gluttony, and believe it or not we've both survived. Not that it was easy, or fun for that matter. It wasn't. We both had our moments of being scared, of not understanding, and of flat-out wishing we could run away. (If it hadn't been for my migraine, believe me, I might well have tried to dig my way out of the bathroom.) As it was, we were both about as lucky and as blessed as anyone can be in this crazy life. We got better. Which fact leaves us with the chance to start it all (again) tomorrow.

Perfect. Kind of. Maybe? For now.

Winding Road

2010-10-05T23:23:00.000-04:00

I had a conversation with a friend the other day that went more or less like this:

Friend: So do you still run your blog now that you've had your transplant?
Piper: Yeah, but I'm starting to feel like a bit of a sham, you know, because I just don't feel like I have a lot to write about these days on the health front. Not that I'm complaining, but I'm a health blogger who is, well . . . healthy (relatively speaking, of course). Where's the fun in that?
**Cue loud barking by Sammy apropos of absolutely nothing**
Friend: Well, your dog's pretty crazy. Maybe you could blog about him if you run out of health stuff?

Just a warning, by the way: This blog is NOT going to be about my dog.

I had a bronchoscopy yesterday as part of my 3 1/2 month post-transplant work up. For those of you who might not understand what this means, the short description is that they sedate you heavily with fentynal and versed and then stick a probe down your mouth or nose into your lungs. Once down there they do fun things like check out your lungs with a camera, remove bacteria for cultures, and (if you're really, really lucky) pull off pieces of your lung to send for biopsy. Good times, right? Although to be fair, it's not that unpleasant of a procedure overall. I had one of these things pre-transplant to re-inflate a collapsed lung and have had several post (for over 2 months I was having them weekly), and frankly the biggest problem I've had so far is that I apparently don't do sedation -- at all. By which I mean they have to give me roughly the amount of sedatives they would normally give a 300lbs man, and even then I stay awake through the whole thing. But even that doesn't really bother me much. I guess I just really trust my doctor.

So anyway, yesterday's bronch really wasn't that big of a deal, in theory. (Other than the fact that my port is no longer accessed, that is, which meant that I had to get a peripheral IV. To the nurse's credit, it only took her a few tries.) I checked in, did the normal workup, and headed back to get my drug on, so to speak. The plan was a quick nap, wake up in recovery, then go home and get some well-deserved lunch.

Ever notice how things rarely go according to plan?

Here's what I know:

1) Despite the fact that I'm still on vfend and abelcet since my transplant, I now have additional aspergillus growth. In other words: more IVs. I get 4 weeks of mycofungin starting as soon as they come to access my port. The good news is I got a full 3 weeks off. Just off the top of my head I can't honestly remember when the last time I had such a long break was. How's that for a bright side?

2) Something happened during or after the bonch that made me, well . . . the nice way to put it would be "sick." The not-so-nice way to put it would be "what the hell?!" Seriously, the combo of fevers/vomiting/chills/etc and bronch sedation is not, shall we say, a particularly fun one. Let me put it this way: I'm used to being able to kind of "take charge" when I'm sick, particularly if someone like my mom isn't around. I can be wracked with fevers and having a near-death experience, and most likely I'm still going to be calling the shots and ordering people around. Unfortunately, post-bronch I can't really do any of that. Normally I go home and sleep for about 6-8 hours after those suckers, so clearly I wasn't in much of a state to make coherent decisions. On top of that, there was absolutely nothing anyone could do to "cure" the problem. I did have the presence of mind to contact my doctor, who had me keep an eye on things and was able to check back in on me today, but beyond that it was either go to the ER and wait it out there or just suffer at home. And of course I think almost any sane person would choose home over ER. And so I waited, and in the meantime kept drifting in and out of consciousness because of the sedation, which of course made the fever seem even scarier for those on the outside. Did I mention that this is not such a good combo? Every time I tried to rally long enough to explain what was happening I got blank stares, probably because for all I know I wasn't even forming a coherent sentence. All of which, I maintain, was not my fault.

Ending hatred, securing world peace, and curing all diseases known to man? Sure, why not -- anything's possible.

Functioning like a normal human being after essentially having been given elephant tranquilizers for breakfast? Not gonna happen. Period.

3) I'm still waiting for the rest of my results from the bronch and for whatever comes next. That's about it from the health front, so please just send some good thoughts/prayers/positivity up into the universe for me, and for all of us, whenever you get the chance.

4) Despite the fact that I promised this blog would not be about Sampson, I did notice yesterday during my random return to the land of the sick that his mood is 100% different when I'm under the weather. Among several weird behaviors, he began pulling all his toys 1 by 1 out of his toy box, a habit I remember from my pre-tx days but which I had more or less forgotten. He does this for comfort, I think, or to let out aggression, or perhaps even for attention. Maybe all of the above. But he does do it, and he also gets incredibly nervous as soon as I start acting "sick" again. Poor puppy. He's a good little guy, for all his crazy nonsense.

I guess in the grand scheme of things my life is still pretty "boring." I'm learning French, speaking to groups of med students, playing with my puppy, going to the New Yorker Festival (among other amazing things, I saw one of my favorite authors, Mary Karr, speak on Friday night), meeting new friends, and doing gyrotonics. And I guess above all I'm grateful that last night was such a big deal, because the fact of the matter is that I still remember a time when it wouldn't have been a big deal at all. And considering that such a time was really only 3 months ago, I have to say that I think I've come a long way, baby. I've just got a long way left to go, I guess.

But I'll get there.

Of Fun and Fire Alarms

2010-10-01T06:34:00.000-04:00

Note: I originally wrote the following as an email sent to one of my friends, but then decided to share it here since it involves ridiculousness and Sampson -- two things that I happen to know you guys just can't get enough of. Just a warning, the language isn't really kid appropriate and some people may find it offensive. And this post has nothing to do with CF. Or transplant. Or breath in general. This one is all about life, baby. Well, life and a malfunctioning fire alarm, but that's just not as catchy. Enjoy.

it's 5:46. am. and i'm awake. writing you emails. and, considering that i have no job and thus rarely get up before about 9 am, i feel like this probably requires an explanation. luckily, i have one. and it's good.

the reason that i am awake and writing you emails has nothing to do with my inability to sleep. nor does it have anything to do with you. or with sampson. or, quite frankly, with any of the 9,876,542 legitimate reasons one might have for being awake and writing emails at a godforsaken time in the pre-dawn hours. i am not, for example, rushing to catch a 6 am plane. nor am i sick and on my way to the hospital via ambulance and/or helicopter. it has nothing to do with a natural disaster or the apocalypse.

nope, it has nothing to do with any of these reasons. what it does have to do with is a motherfucking battery.

i think.

roughly speaking, the story goes like this: at about 4:30 this morning, i was awakened by a very loud, very high-pitched, and very repetitive noise echoing throughout my not-so-very-large apartment. this was problem #1, and (given the fact that even very sleepy pipers have the logical reasoning capacity to realize that alarm = bad, although i freely admit that tends to be the extent of my skills at that hour) this problem provoked an immediate response in the form of movement from the bed into the kitchen/living room, aka the source of the noise and the location of BOTH of the two alarms in my apartment. um, yeah. we'll discuss the logic of placing two smoke/carbon monoxide alarms in a 3+ room apartment and concentrating both in the same room later. brilliant.

so anyway, i go into my living room. and i go in there alone -- meaning without my dog, who chooses instead to remain behind in my bed with his head (no joke) somewhat buried under my comforter. in other words, any delusions i might have had about guard dog grandeur go straight out my 18th story window. sigh. but i digress...

back to the point. okay, so i'm in the living room. and the first thing i notice is that there is 1) no fire, 2) no clear signs of a fire in another location, such as smoke, heat, or large men in red raincoats. this is a good thing, in theory, except that it leaves me with no explanation for the still-wailing alarm aside from either malfunction or carbon monoxide, neither of which sound like entirely pleasant options. i open the door to my hallway and discover that no alarms appear to be going off in any of the other apartments, which means it's just me disturbing the peace. lovely. i contemplate leaving the door to my apartment open on the theory that if i can't sleep, no one else should either (and by "no one else" i may or may not mean the devil child down the hall in particular), but neighborly goodness wins out in the end and i retreat back into the apartment and close the door. i deserve a medal for being nice. even worse, the noise appears to have gotten louder during my brief stint in the hallway. maybe it's relative. i think it's more likely a conspiracy of badness against me. yeah, that's right: a conspiracy of badness. you read it here first.

to add to the fun, sampson has heard the door opening and closing during my departure from the apartment. and apparently his fear of being left alone is greater than his fear of loud noises, because my big brave boy has now come into the hallway and is looking frantically at the door. when i return, he bolts into the hallway. okay, fine, except that i clearly have to close to the door to keep up the general misconception on my floor that i am, in fact, a nice person rather than a raging bitch who enjoys torturing her neighbors with loud noise at 4 am. which leaves me with two options: either close the door and leave the dog in the hallway, or call the dog back into the apartment and close him in with me. normally, of course, this is a no-brainer, but as i may have mentioned, my apartment at this point in time is really fucking loud. and my dog has just proven himself terrified of the loudness, so it seems kind of cruel to make him come back inside. in the end, i opt to allow him to stay outside the door while i go back in to deal with the noise. exeunt the shorkie, stage left.

the next step is obvious: call the building doormen and whine. so i do. and proceed to have the following conversation with my doorman:

doorman: huh, i can hear the alarm going off [by which he means he can hear it over the intercom because, as i have already pointed out, my apartment is REALLY fucking loud].
piper: yeah. i don't really know how to fix it, or even what the problem is.
doorman: is there a fire?
piper: um...no? i mean there's no smoke, there's no smell, and i don't see any fire. it's not a very big apartment.
doorman: is there any carbon monoxide?
piper: i don't know.
doorman: well can you smell it?
piper: carbon monoxide doesn't smell. that's why you need an alarm.
doorman: oh. well, i can hear it...

and so on.

it finally gets resolved that the doorman will send up a maintenance man, which would be great except he prefaces this declaration with the warning "but i doubt he'll be able to do much and i can't get anyone else here until morning. can you maybe just go to sleep?" mind you, this is after he has repeatedly mentioned that he can hear the alarm loud and clear even through the intercom. i kindly inform him that ignoring the disturbance until morning isn't really an option. then i hang up and begin considering dog-friendly alternate housing arrangements. at which point i become vaguely aware that there is yet another noise now competing with the alarm. similar in tone, annoyance, and general volume, this second noise is somewhat lower in pitch and appears to be coming from the hallway. so i walk in its general direction, and finally open the apartment door, which swings smack into a loudly HOWLING sampson.

so much for my neighbor of the year award. are. you. kidding. me?

the shorkie comes back in with me, then proceeds to jump up on his purple chair and commence shaking and crying. meanwhile the maintenance man arrives [his first words are "holy cow, it's loud in here!"] and requests a ladder. i give him a folding chair. after about 5 minutes of staring at the machine and occasionally poking it with his index finger, he returns to the floor and announces that he doesn't understand the problem, but will return shortly with a battery. he asks whether the alarm was going off when i went to bed. to ask this he literally has to shout at me, and i'm standing less than 2 feet away. why does the entire apartment staff seem to think that i'm capable of sleeping through this alarm? again, i say a polite no and resist the urge to point out that 1) it's really, REALLY fucking loud, and 2) it clearly WOKE ME UP, which means it probably wasn't going off before i woke up. the guy leaves in search of a battery. sampson continues to cry. i suddenly feel much more charitable toward people who use the expression "fuck my life."

fast forward about 10 minutes. the man has returned with a battery and is once again on a chair in my hallway. the shorkie has escaped out the door again and is sitting outside by the elevator bank. in an attempt to strike a balance between playing hostess to the maintenance man and being a responsible dog owner, i am also sitting in the hallway in my pajamas and occasionally pulling open my apartment door to stare at the guy on the chair and listen to him shout at me that he doesn't know how to turn off the alarm. which, you know, i could probably have guessed by myself, considering that the alarm is still going off. he also wonders how the alarm is able to continue terrorizing the entire apartment even without batteries. this is, in fact, one of the great mysteries of life, and i agree with him that it's stupid. if i want to remove my alarm's batteries and risk dying a fiery death, shouldn't it be my right to do so in relative peace and silence? also, given the fact that the alarm has now been blaring for well over 20 minutes and not a single person has emerged from another apartment, i'd say the argument that my alarm going off somehow protects other people in the building is more or less bullshit. clearly my so-called "neighbors" care nothing for me or for their own safety. next time i'm leaving the door open for sure.

five minutes later the maintenance man stops complaining about the noise long enough to replace the battery and the alarm stops. kind of. maybe? well, slows down anyway. basically the alarm goes from a constant blaring noise that is really, really, REALLY fucking loud to a more dignified single beep that is only kind of fucking loud every 2 minutes or so. which improvement is clearly good enough for the maintenance man, as he immediately jumps off the ladder and heads for the hills. as he reaches the elevator i venture to ask whether the building will send up someone more familiar with the alarm system in the morning. (or someone with a sledge hammer. i'm really not picky at this point.) he seems surprised and asks why i would need such a thing. the alarm beeps, triggering loud barking from sampson, who has decided that this more manageable noise is not as scary and therefore constitutes a chance to show off his manly courage in the face of any and all intruders. i am less than impressed. the maintenance man nods knowingly and promises to send someone up, but warns me it might be noon or later before they can get there. he advises me to go back to sleep. sampson growls warningly at the impudent alarm, and i wonder which of them is the inherently dumber creation before sampson begins licking my feet protectively. oh well, at least he's cute.

so now i'm in my apartment with a sort-of-tolerable alarm which may or may not have a problem other than the battery and a sort-of-lovable puppy who may or may not be the least brave animal on the planet, contemplating whether is hould attempt to go back to bed or just give up and make a shitload of coffee instead. all of which goes toward explaining why i'm sending this email at 6:06 am. and why i'm really, really excited to move.

goodnight.

Just Do It: Cure Edition

2010-09-24T01:34:00.001-04:00

So I'm always going on and on around here about my awesome family, and sometimes I wonder if you all get sick of it. I mean, be honest, here. Are you tired of coming onto my blog all geared up to here (yet another) story about the life and times of a slightly crazy transplant patient and her very high-strung puppy, only to find yourself somewhat disappointed by the fact that all I ever seem to talk about anymore is my fabulously helpful mother, my fun-loving father, or my pretty much ridiculously talented sister? Yeah, I kind of figured as much. But fear not, lovely people, because I 100% promise to you all that this particular post that you are about to read will not be in any way shape or form about my fabulous family. No, really, I mean it this time.

It's gonna be about my equally fabulous friends.

Shocker. Bet y'all didn't see that one coming from a mile away, did you?

But, although I'm not kidding when I say that all of my friends definitely deserve to have a blog dedicated to their wonderfulness, this post is about one friend in particular. Remember this guy?

(Psst...he's the one on the right.)

Yep, that's Ben, who at around this time last year ran the 2009 NYC Marathon, and in the process raised about $4,000 for Team Boomer and the fight to cure cystic fibrosis. Um, yeah, did I mention that I have pretty fabulous friends? I wasn't kidding...

So this year, of course, Ben is at it again. Believe me, beautiful readers, I have tried (and tried, and tried, and tried again) to get this guy to slow down and stand still more often. And frankly, it just flat-out doesn't work. He pretty much makes me look lazy (actually, he would probably make the Tazmanian Devil look like a couch potato if the two ever went up head-to-head, though it's possible that our own "super fibros" Ronnie and/or Jerry Cahill could outrun him, not to mention Rock CF's incredible Emily. Just sayin', Ben.) Given that simple fact, though, I've decided instead to focus my energy on something a lot more doable than forcing Ben to stop moving. Something relatively easy like, say, finding a cure and saving the lives of over 70,000 children and adults around the world. Right. Because we all know that together we can totally do that.

Which is why, on 10/10/10, Ben is going to be running the Chicago Marathon in support of the Cystic Fibrosis Foundation. And, as we all know, the CFF is an amazing charity, with over 90 cents of every single dollar raised going directly towards life-saving research and drug development. In the immortal words of Dr. Bob Beall: money equals research and research equals science and science equals LIFE.

But, of course, none of you need me to tell you that, right?

PLEASE show your support for this amazing guy and this amazing cause. There are so many ways to do it, and they're all super easy.

1) Obviously, this is a fundraiser, the primary goal of which is to, well, raise funds. If you feel like helping out Ben's marathon awesomeness, please do so here.

2) If you live near the Chicago area, please go out and support Ben and all the runners on Sunday, October 10th. I'm not allowed to travel for a while post-tx, or I would totally be there. And, of course, cheer especially loud for all the wonderful people running for the CFF.

3) Feel free to leave Ben a message in the comments of this blog to let him know who he's fighting for and how much we all appreciate it. Believe me, this sort of encouragement will probably come in handy around mile 25 or so!

Honestly, I know I joke around quite a bit on the blog, but on a serious note: I'm so beyond proud and grateful to have amazing people in my life. And to everyone who continues to -- or has in the past, or ever will in the future -- put so much time, effort, and energy into the race to cure this crazy disease, please know that all the blogs in the world could never even begin to touch on how awesome you are. To you it might mean 26 miles (and 385 yards) of sweat and effort, but to 70,000 people around the world, it means everything.

New Lung Resolutions: Post-Transplant Edition

2010-09-20T22:11:00.001-04:00

My CF and blogger friend Amy recently posted her own blog in response to one of my blogs, in which she aks pre-transplant CFers to consider what they would do with new lungs. Awesome idea, and I totally encourage you all to go over there, check it out, and get in on the conversation. You can either leave it there in her comments section or just leave a link to your blog in there and then write your own, larger piece on the subject.

The fact of the matter is that lungs are a precious gift. You know that, I know that, the donor families know that (which is what allows them to make such a selfless decision during a difficult time), the doctors know that...heck, we all know it. But the reason that lungs are so precious is that they allow you to LIVE. They allow you to be you -- and maybe even a new version of yourself, with sides you never even knew you had, because of all the energy that is no longer devoted just to the simple act of breathing. There's a reason that the button on the sidebar of my blog says Donate LIFE. And LIFE, as we all know, is subjective. It means different things to different people.

So as a response to Amy's post in response to my post (whew! Did you follow that?) I decided to dig through some of my old posts to see what I envisioned for life with new lungs back before I had them. And I found this list (entire post can be found here):

Go running in Central Park: Not yet. Actually, I haven't done much running at all, unless you count short jogs down the street. This is a little frustrating to me, as I think I believed that new lungs = breathing = running. Unfortunately I forgot the other side of this equation, which is that new lungs = surgery = scars = pain = not-so-much running. Whoops. Still, I have WALKED in several parks, and loved it -- and I hope that soon my scars will heal enough for some longer running spurts. Probably just in time for winter, no doubt.

Buy a beautiful dress, go dancing, and stay out on the floor as long as I want: Hmm...this is an interesting one. Don't remember why I thought this was important, but I have, in fact, bought a beautiful dress since transplant. Even better, I bought a beautiful dress from the fashion line designed by my sister (SUNO). Love it. And while I have yet to go dancing in a club (germ control in full effect still), I have danced around my apartment -- a lot -- without getting out of breath. It is every bit as wonderful as I thought it would be.

Spend a day volunteering for a cause that is not at all CF-related: Okay, this one I like, if for no other reason than it makes me seem less materialistic than the dress one (oh yeah, I'm definitely that vain, believe me). Volunteering used to be a huge part of my life in college, and though I haven't done it yet with new lungs, I'm super excited about the prospect. Considering the generosity of my donor and his family, I have no doubt that volunteering will come naturally to my lovely new lungs.

Play with my puppy more (I mean really, really play): Check, check, and more check. My puppy is actually passed out on the floor as we speak after a rousing game of fetch with his favorite squeaky tennis ball. I'm not sure Sampson can handle me with new lungs, but he's having fun trying so far.

Go to a museum: I visited an exhibit with my mom and a friend not all that long after my surgery. I was still tired and a little sore at that point, but I do remember enjoying the sensation of walking around, not having to find a bench every few steps, and still having the energy left over to walk to lunch afterward. Museums are definitely a whole new world post-transplant. Did you know there's actually ART in those things? Wow.

Continue to journal/write/paint/express myself: The interesting thing is I think I've gotten WORSE at these things in the past 3 months, as is probably reflected in this blog. For starters, writing and being creative takes time, and recently I've had so much going on that it's honestly difficult to sit down and put in the hours necessary to do a good job. Beyond that, this sort of expression also requires concentration, something that seems all too rare these days thanks to the one-two punch of prograf and prednisone. The first of these reasons is a good thing; the second, not so much. But I'm also happy to report that the "prograf brain" and "pred mania" both seem to be waning. Fingers crossed anyway.

Take a tai chi class: Since transplant I have taken a writing class (online), several gyrotonic classes, and am signed up to start a French class soon. Granted, none of these is tai chi. So sue me.

Continue to meditate: Um, did I mention my good friends prograf and prednisone? Yeah, they're not so hot on meditation, apparently. Unfortunately for them, I just this week got back into the swing of things and am even planning to do a two-day meditation workshop in November. Take that, stupid annoying drug side effects.

Dance in the rain -- literally: Well, I got caught in the rain while taking a nice, long, post-transplant walk. Does that count? It was a lot of rain, I promise.

Watch a sunset and a sunrise (need not be the same day): I've watched several sunsets and one set of fireworks on the Hudson River, so I'm gonna call this one good for now. I still plan to watch more, obviously.

Find a way to do something to say thank you to my family for everything they've done for me this year: Any ideas? Anyone?? Please?

Be grateful. Be patient. Be humble.: Grateful...check. Patient...Um, working on it. Humble...Well, I think I do a really good job on this one, if I do say so myself. Obviously.

Practice compassion for myself and others at every chance possible: Clearly this is an ongoing thing.

There are also lots of more immediate, everyday activities that are basically a whole new experience with my new lungs. Birthday parties for friends, dinners out, exploring the city, walking, riding my bike, shopping, breathing, laughing, and even just sitting watching TV while not doing treatments. Not to mention the fact that I'm honestly never really tired -- or at least not like before, anyway. I go to bed at night and wake up in the morning feeling rested. I feel energetic. I even feel hungry right when I wake up -- no waking up coughing, doing the VEST, and then waiting 30 mins to an hour for my stomach to settle enough to eat. I just eat. You know, like a so-called "normal" person. Weird.

The funny thing about all of this, of course, is that I'm still not really "normal" by most people's standards. I spend a whole lot of time up at the hospital or getting blood labs or counting out pills or having bronchs or refilling prescriptions or taking my vital signs. I still have limited lung function (although it is climbing!). I'm still underweight and I take enzymes whenever I eat like many other CFers. I'm immuno-suppressed and vulnerable to infection. I've dealt with rejection and IV steroids. I have recently acquired CFRD and continue to struggle with insulin. And at the end of the day, I'm still just 3 months out of a double-lung transplant. But all these things, which seemed so daunting with my CF lungs or even during the period directly after transplant, somehow just don't seem all that huge anymore. They're still there, and I'm not going to ignore or gloss over them, but I find myself spending less and less time actually focusing on my health -- and more and more time focusing on other things, whether that means all the activities I dreamed of pre-transplant, or just the simple stuff I'm lucky enough to enjoy every single day.

So that, beautiful people, is my updated version of my "new lung resolutions" -- written 9 months (and seemingly a lifetime) after the original post. It may not be perfect (I'm only human, after all), but it's definitely close enough for me. And it fits my definition of LIFE to a "T."

Riddle Me This

2010-09-16T21:42:00.000-04:00

Okay, beautiful people, here's a riddle for your Thursday night pleasure. What has two hands for typing, two lungs for breathing, approximately two thousand doctors to visit on a monthly basis (warning: the preceding figure is just an estimate -- actual number of doctors visited may vary), give or take two more months until her 29th birthday, and two bedrooms in her current apartment -- one of which is now distinctly empty?

Give up?

Yes, you read that last part right. As of right now there is only one person (and one super fat shorkie) living in my 18th story abode. And yesterday, after 15 months of urban not-so-zen, my mother/nurse/roommate/appointment scheduler/pill manager/dog walker/friend packed up her (many) suitcases and made her way out of New York City...and back to Colorado.

Back to her husband (aka, my father), her job, her dogs, her house, her garden, her friends, her favorite coffee shops and restaurants, and, well, her life.

And I, of course, already miss her like crazy. Sampson spent a good part of yesterday evening sitting by the door in anticipation of his "grandma's" return. When being patient didn't work, he resorted to some very un-dignified barking. When that also failed, he heaved a huge sigh and flopped down despondently on the couch. My thoughts exactly, Sammybear.

On Tuesday my mom came with me to a routine transplant clinic appt just to see my doctor for the final time before her big move. Honestly, we couldn't have asked for a better visit overall. Things are going great with my new lungs. My numbers are great and, far more importantly, I feel as though I could take on the world. My friends are sick of me already because I guess they didn't realize that new lungs mean bigger lung capacity (i.e., the ability to talk for hours) and more energy to run around like a madwoman. My dog pretty much refuses to walk with me anymore since I rarely have the patience to stop as often as he would like. Everyone complains that I'm too fast for them to keep up with on the street -- and I revel in every second of it.

There is so much to do in the future. So much hope and promise, and so many exciting options. Without sounding too pollyanna about it all, I'm really looking forward to trying out some new things and flexing my wings a little. The other day it dawned on me that people all too rarely get the sudden chance to reinvent themselves. Life is pretty fast paced most of the time, and there's always a good reason to stick with the status quo. Which, of course, makes a lot of sense from a practical standpoint, but how lucky am I to have a natural break to take stock of myself right now?

Yeah, I said it: I'm lucky. I went there.

Honestly, I'm a big fan of keeping things in perspective. (Um, okay, fine: most of the time. I'm sure I have family members out there who just fell off their chairs in shock reading that sentence.) I'm not about to claim that being born with cystic fibrosis is lucky. Needing a lung transplant in your 20s is decidedly unlucky, in fact. As is being "disabled" or having to swallow ridiculous amounts of drugs to kill your immune system everyday. These things kind of suck, no doubt about it. End of story.

Except that it's not really the end. Because as cynical as I am some of the time, I would be really hard-pressed to try and claim that I'm not lucky -- or at least it would be hard to do that while keeping a straight face. As a law school graduate, I just can't ignore the hardcore evidence.

I was born with an unlucky disease, but I have been lucky enough to meet some awesome people as a result.

I might have been unlucky to need new lungs, but I was lucky enough to get them. So, so lucky.

I am unlucky in the sense that I'm a hardcore veteran of the medical system, and lucky enough to have had some of the best doctors I could ever imagine.

I am currently in the unlucky position of trying to recover from a super intense surgery in which they swapped out some of my most vital organs for those of a stranger (um, wow, right?), but that very fact also means that I find myself with a lot of time for reflection, planning, personal growth, and education. That, my friends, is pretty darn lucky, even if I do say so myself.

And I mean, sure, these are only silver linings in what some would consider a very cloudy sky, but that doesn't make them any less precious or their shine any less brilliant. Which means that even as I was (and will be for a long time) very sad in one sense to see my mom get in that cab to the airport, I was also unbelievably grateful. Not just for everything she gave me when she was here, but also for her grace and wisdom in knowing how to wave goodbye and get on that plane. It was a lesson by example that I hope I can carry with me forever -- how to care for someone with great compassion and love, and then to step back to allow that person to care for herself.

So what has two hands for typing, two lungs for breathing, approximately two thousand doctors to visit on a monthly basis, give or take two more months until her 29th birthday, two bedrooms in her current apartment -- one of which is now distinctly empty -- and is quite simply one of the luckiest girls in the entire world?

Well, I think we all know the answer to that one. I love you, mom.

On Mistakes and Magic Markers

2010-09-04T01:19:00.001-04:00

When I was very young -- like, say, four or five years old -- my mother decided to have a very special chair reupholstered and placed in my bedroom. The reason this chair was special is that it had been my mother's childhood chair -- a beautiful mini-armchair that my mother chose to cover in bright pastel stripes appropriate for her little girl. I still remember the chair pretty vividly even now, which is a testament to how much I liked that single piece of furniture since the rest of my bedroom has grown a bit hazy over time.

On the day the newly covered chair was delivered to our house, my parents hosted a small dinner party. At some point during the evening I was alone in my room, either because I had been told to play quietly or possibly because I was supposed to be sleeping. Either way, I was alone. With the chair. And apparently also with a contraband black permanent marker, most likely filched from the kitchen counter with a stealth that would have made a professional burglar jealous. Cue the scary music because I think we all know what happened next.

My father eventually came to check on his sleeping angel, as parents tend to do. And when he found me I was apparently in the throes of artistic inspiration -- gleefully covering my new chair with dark blots in random patterns a la some deranged Jackson Pollack, or perhaps a paint-by-numbers gone horribly, horribly wrong. In either case, my mother was summoned to the room to inspect my masterpiece, whereupon she immediately burst into tears that, surprisingly enough, did not appear to be tears of joy at my brilliance. And I believe that was when my father turned to me, a stern look on his face, and asked me a version of the same question that parents have been asking their kids ever since Adam and Eve looked around and saw that the garden was a complete pigsty:

"Why, Piper? Why would you color all over your mother's chair with black marker?"

And tiny me, without hesitation, answered simply:

"Because I prefer darker colors."

I've been told this story about a million times. According to my mother, this was the point at which my father burst out laughing and I managed to get off with virtually no punishment, despite the fact that the chair had to be sent back to the shop for another reupholstering. In my dad's version, this was the moment at which he knew I would one day go to law school. My sister uses this story to prove that her childhood antics (which once included signing her name in paint all over the house and trying to blame the sleeping infant me for the damage) were nothing compared to mine. And my godmother likes to tell the story just because it makes her smile to think of my sister and me at that age. But whatever the motive, it's definitely become part of the Beatty family folklore.

My interpretation of this story is a little different. I see in it two things: 1) the fact that I tend to think things through before I do them (because I doubt my young self would have been able to come up with such a logical excuse on the fly had it not been my true motivation), and 2) just because something makes sense in my head, that doesn't always make it the right thing to do.

It's just too bad I haven't always been able to channel this lesson in my own life, right?

I've noticed lately that post-transplant living is nothing so much as one great big balancing act. The wire is wobbly and the stakes are high -- a single misstep, however good the intentions behind the act, could spell disaster. At the same time, perfection is pretty much impossible. The job itself is complicated. Mistakes will be made. And while standing straight and still in the middle of the wire might be the safest approach in terms of not falling, it will also mean that you never perform the trick you set out to master. That ultimate trick of living your life with grace, gratitude, and maybe even a little bit of style if you're lucky.

There are a few events that sparked this realization, but honestly I don't want to get into them here. Because the events themselves, although they seemed like huge deals to me at the time, were really just a drop in the bucket. The bigger issue, for me at least, is the reality that I have to find a way to live with these things -- with immuno-suppression and side effects and awkward conversations and, yes, mistakes. Like it or not, these are all part of my life now. They're here, and they're not going anywhere anytime soon, if ever. And it's 100% up to me to learn how to identify risks, how to be wary of the danger without standing still altogether, and how to both accept the mistakes I do make and correct them in the future. I have to be both my harshest critic and able to forgive myself in order to move on. And that, my friends, isn't always easy.

So I guess I find myself back in front of the chair, and once again holding that proverbial marker in my hand. Only this time, instead of just asking what I want, I have to ask what is best for all involved: who will I hurt, what will this cost me and my family, is there perhaps someone more knowledgeable on the subject of furniture upholstery that I should consult before making this decision, will I be sad if things don't turn out the way that I expect, can the damage be undone? These are just a few of the questions I want to ask my tiny childhood self. And at the same time, I hope I can maintain the courage to still nourish that inner artist (however misguided she might have been -- I mean, seriously, a black sharpie??) and give her space to continue living and expressing and creating and thinking and playing. Just, you know, preferably on a more appropriate canvas.

So thanks to God, my doctors, and my donor for the chance to make even more mistakes in my life. And a long-overdue thanks to my amazing mom for the beautiful chair.