Little "Miss" Compromise

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

'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

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

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**

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!"

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

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.