The State of Our Union

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Just Imagine

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

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

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

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

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

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

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

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

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

Dear friends, family, and loved ones:

Happy holidays!

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

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

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

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

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

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

Imagine they were heroes too.

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

And imagine we could do better.

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

Imagine that.

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

xoxo,
Piper

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

On the eve of my thirtieth birthday . . .

To My Family:

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

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

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

I admire you.
I love you.

I breathe you.

To My Friends:

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

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

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

To My Doctors, Past and Present:

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

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

Thank you, in short, for everything.

To The CFF:

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

And last but not least . . .

To My Beloved Donor Bob:

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

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

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

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

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

xoxo,
Piper

The Puzzle People

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

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

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

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

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

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

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

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

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.

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.

Imagine Me and You

Dear Donor Bob:

Happy anniversary!

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

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

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

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

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

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

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

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

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

With Deepest Love and Gratitude,
Piper

Say When

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

Sorry.

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

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

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

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

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

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

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

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

And, of course, my personal favorite,

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

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

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

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

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

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

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

Writer's Block, and Other Blessings

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

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

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

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

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

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

Merry Christmas to All

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

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

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

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

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

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

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

A Prayer in Celebration of Time

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

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

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

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

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

But 6 months ago today, all of that changed.

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

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

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

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

• I have walked miles along the beautiful streets of Manhattan.

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

• I have celebrated 29 incredible years on this Earth.

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

• I have attended my sister's fashion show.

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

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

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

• I have laughed and not coughed . . . honestly.

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

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

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

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

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

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

For everything.

Amen.

An Open Letter to Everyone I Love

Dear Beautiful People:

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

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

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

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

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

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

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

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

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

Yeah, I said it. Sorry.

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

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

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

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

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

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

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

With love, light, and endless gratitude,
Piper

New Lung Resolutions: Post-Transplant Edition

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Riddle Me This

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

Give up?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To My Donor

Dear Donor Bob:

Okay, first of all, I know "Bob" probably isn't and wasn't your name. Please forgive me for taking the liberty of renaming you, in a sense. The frank truth of the matter is that I was having difficulty connecting with you in the hospital right after your amazing gift. I found myself lying there in that plastic bed, breathing deeply and desperately wanted to express my gratitude, but unable to figure out how to do so. I mean, how does one reach out to someone they never met -- a total stranger who nonetheless chose to save their life, to become a part of them, to offer a chance at a future full of promise and hope? It wasn't finding the words that was difficult (I'm rarely speechless, so that was the easy part), but as I lay awake night after night I suddenly realized that despite the fact that we have shared a vital organ, I don't actually know anything about you aside from your approx. age and your sex. So I decided to start at the beginning and to give you a name so that we could at least have a proper introduction. Or maybe I should say that it's less of a name than it is an inside joke -- a nickname between friends. Because I would really like it if we could be friends, Donor Bob, and preferably for a very long time.

Anyway, now that that's out of the way, I guess I should just get down to the important stuff. Thank you. Thank you, thank you, thank you, thank you. Thank you for the many walks I have taken with my puppy and my family and my friends in the past two months. Thank you for the effortless way that air flows into my body now, as though I'm not even trying. Thank you for the other night, when I looked up and saw the moon shining between those truly amazing NY skyscrapers and couldn't even move, it was so beautiful. Thank you for that day in Brooklyn with my aunt. Thank you for today, when Ben and I got caught in the rain and had to run to the Starbucks and I was actually fast enough to make it inside without having to just get soaked and pretend that was okay, that I didn't mind, that there are worse things than slowing down the whole group and being embarrassed and cold and wet, because what the hell...it's just CF, right? Thank you for the fact that my family seems less worried. For yesterday on Long Island. For the fact that I am now looking forward to my cousin's wedding next summer, and I'm not questioning whether I'll be here to see it. For the fact that I actually believe I might be able to throw a 30th birthday party. For tonight. For tomorrow. For everything.

My God, thank you. Just thank you.

Now that I think about it, though, I guess I was lying when I said that I didn't know much about you aside from your general age and sex. That's not exactly true, right? Because I know you were selfless enough to think about others. I know you came from a family willing to put aside their own grief at an extremely difficult moment and make the choice to help me and (most likely) several other people. I know at least that much, and I think that's pretty important.

I have to be honest here: I really hope that you can use that kindness and that empathy for others when you look down on me. Because I know so well that I'm not perfect. I'm reminded of that every single day in one way or another. And as much as I strive to be grateful and happy and excited about this precious gift of life, as much as I promise to try and live each day to the fullest, I know there will be mistakes along the way. I know there will be days when I'm unhappy about things, whether they be inconsequential annoyances or bigger problems. I know that sometimes I will look up and see the moon and not be overwhelmed by a sense of beauty -- it will just be the moon and nothing more. I know that I will get tired, and angry, and frustrated, and overwhelmed. I will sigh unnecessarily loud. I will complain to people around me. I will judge others. I will roll my eyes. I will squeeze out dramatic tears and expect sympathy. I will shoot someone an undeserved look of annoyance. And I will rant. If you don't believe me, just ask the readers of this blog -- they've seen it before, I promise.

I do promise to try to make sure the good days outnumber the bad. I promise to try and correct my mistakes when I make them. But I know that I will make them, and I hope you can understand that. After all, you were human too, right?

I truly hope that you feel as strongly as I do that we make an awesome team. I know we've only recently met, but I feel as though we were meant to be together all along. You are a seamless part of me now, which is not to say that I've forgotten you or your gift. On the contrary, I think of you often, but I also accept that you made the choice to allow me to live my life. You entrusted these lungs to me in the hopes that I would use them to fully realize myself. And so I admit that regardless of my overwhelming sense of gratitude, I'm not actually living for you, although I do feel your presence. I don't consider the start of our time together to be my (re-)birthday, for example, although some people seem to encourage this approach. I feel strongly that you would understand that I lived 28 years without you, and that my life had meaning then too and I don't want to negate that. Just as your life had and continues to have meaning well beyond your gift to me. So we'll just consider June 12 to be our special private anniversary, okay? The day we, as two separate individuals, got the chance together to do something pretty darn miraculous.

I continue to pray every day for you and your family. Your "name" is still written on my transplant bear, as a constant reminder that I didn't come this far alone. And for what it's worth I think Sampson also likes you quite a bit, as he seems to really enjoy snuggling up on the couch and listening to my breathing these days.

Most of all I just want you to know that you're constantly remembered by someone who was never lucky enough to know you in real life, but who will think of you whenever she gets caught in the rain.

With Every Breath,
Piper

Learning to Breathe

I used to lie awake at night sometimes just staring out the windows in my bedroom at the streetlights twinkling down on Greenwich St. and the steady stream of cars flowing up the West Side Highway. Minutes would tick by slowly as I waited for my mind to come down off its prednisone mania, or for the cough syrup I had taken (once again) in desperation to finally kick in enough for me to close my eyes. I would lie as still as I could, careful not to move lest I awake the monster in my chest, and pray for the lullaby of my oxygen concentrator to finally work its magic on my exhausted body. And then I would add an extra postscript, asking God to make sure that I would awake again in the morning. It was an afterthought that seemed to grow increasingly urgent with every passing night. Just please God, I begged, please let me rest -- and then let me try again tomorrow.

It seems like a lifetime ago that I lay awake attempting to bargain with my life. A lifetime since I stacked my pillows into a carefully crafted tower designed to allow me some degree of comfort while still keeping me more or less completely upright. (It never really worked, by the way -- I would awake more often than not curled over myself and sitting up cross-legged in an attempt to keep from gagging on the thick sludge blocking my air.) A lifetime since I grudgingly pried myself off the mattress and retrieved yet another paper cup from the kitchen as I powered up my Vest or the Frequencer, knowing that without yet another treatment there was no way I would get any rest at all. And a lifetime since I gasped oxygen in short breaths in between long coughing fits (I referred to it as "spasmatic" coughing -- it seemed the only term able capture the intensity and uncontrollable nature of those moments).

A lifetime.

Or, you know, two months. Which is more or less the same thing when you're just trying to survive.

In these past two months my life has completely changed . . . sort of. And I guess it's a little hard to explain what I even mean by that, so I'm afraid you'll have to forgive me if this seems a little strange. One thing is for certain though: it's been a very strange journey. So at least this post is honest, if nothing else.

In some ways I feel like a totally new person. Or rather, I guess, I feel like I suddenly have the freedom to be(come) the person I was always meant to be in the first place. I have energy that isn't used up by inhaling, exhaling, and coughing. I have time that isn't devoted to treatments. Mental space that is no longer filled up with concern over when the other shoe will drop. There are about 500,000 little changes in my life that add up to a huge difference. Yesterday, when my wonderful transplant doctor looked at me seriously and asked whether I was handling the time consuming new drug routine okay, my honest reaction was to think he was joking.

Because this isn't time consuming; time consuming is 4-6 hours a day plus whatever exercise and eating you can cram into the remainder plus that nap you have to take plus the IVs and the sterilizing and the pills and the emails with your doctor and whatever other issues you have going on that particular day.

And this isn't frustrating because this is healing; frustrating is doing everything right every single day without a single break and still watching your numbers slide downward in a slow race to the bottom while you desperately try and avoid the next infection and constantly beat yourself up for not doing more, not being healthier, not staying above water. That, beautiful friends, is frustrating.

This is, well...this is life.

But at the same time, he had a point, and he wasn't joking, obviously. There are things about this transition that are hard. There are new drugs to learn and new side effects to manage. There are changes to my body both inside and out that can be waaay more difficult to wrap my head around than I thought some of them would be. There is a new identity of sorts to be reconciled -- am I a sick person with healthy lungs, or a healthy person with some sinus/digestive/immune system issues, or both, or neither, or does it even really matter in the long run what we label ourselves? Why did I get this transplant anyway? What are my goals and how willing am I to compromise them if it means a few more years in this amazing life with these incredible people? How much do I owe the many, many indescribable souls who helped me along this journey? How much do I owe myself?

I don't have any answers, but I sure have a lot of really mind-blowing questions. And who knows, maybe some of the answers will come with time, or experience, or just by the grace of God.

In the meantime, though, I'm (re-)learning to breathe. By which I mean I'm re-learning to be patient (rather than simply be a patient, which is a very different thing), to trust, to be grateful, to be scared without being paralyzed, and to re-build the sometimes tenuous connection between myself and this crazy beautiful thing called living. And with every breath in -- with every deep inhalation that now floods my body -- I am reminded that my quest to discover this semi-new self that I have become and always was will never really be over.

So please, God, let me rest tonight -- and let me try again tomorrow.