Little "Miss" Compromise

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Man of Mystery

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

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

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

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

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

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

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

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

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

I hope for a lot of things.

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

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

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

This Post Brought to You by The Letter D

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

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

Okay, enough of that.

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

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

Doctors

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

Vitamin D

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

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

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

Demonstrations

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

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

Donors

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

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

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.

How Does Your Garden Grow

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

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

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

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

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

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

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

And how to blossom with the sunshine.

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.

Our First Dance

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

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

My cousin got married last Saturday.

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

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

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

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

And then I danced.

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

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

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

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

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

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

One Year Later...

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

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

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

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

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

Imagine Me and You

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

(Almost)

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

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

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

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

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


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

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

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

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

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

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

And I think I'm (almost) ready.

Balance It Out

Well, hello there, beautiful breathheads:

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


Amazing, right?

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



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

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

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

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

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

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

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

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

Well, aside from the food, of course.

xoxo,
Piper

Seven Months Down and Oh, What a Ride

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

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

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

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

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

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

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

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

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

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

Or maybe just in a breath.

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

A Tale of Two Years (and Four Lungs)

Dear 2011,

Well, hello there.

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

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

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

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

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

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

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

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

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

xoxo beautiful people,
Piper

A Christmas (Party) Story, And Then Some

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

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

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

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

Transplant, IVs, and Life.

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

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

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

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

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

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

And I couldn't have said it better myself.

****

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

Enjoy the season, beautiful people.

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

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

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

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

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

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

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

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

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

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

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

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

Happy shopping!

A Prayer in Celebration of Time

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.