Thursday, December 22, 2011

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.


Saturday, December 17, 2011

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.

Tuesday, December 13, 2011

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:


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.


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.


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.

Friday, December 2, 2011

**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, 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.**

Saturday, November 26, 2011

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.


Saturday, November 5, 2011

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.

Thursday, October 20, 2011

What Are You Reading?

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.

Saturday, October 8, 2011

Ask Not What a Cure Can Do For You

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.

Sunday, October 2, 2011

Chaos Theory

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.

Monday, September 19, 2011

How Does Your Garden Grow

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.

Thursday, September 15, 2011

You Probably Think This Blog is About You

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,


Tuesday, August 30, 2011

Back to School

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
  • 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.

Monday, August 22, 2011

A Brief Letter to a Wonderful Soul

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,

Friday, August 19, 2011

Be Unbroken

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.

Friday, July 29, 2011

Top (CF) Chef

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 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 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!

Thursday, July 28, 2011

**Blogger Challenge: Personal Disease Perspectives**

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?"


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.