Wednesday, June 15, 2011

The Kindness of Strangers

I write a lot on here about organ donation.

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

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

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

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

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

Much love, beautiful people.

One Year Later...

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.

Sunday, June 12, 2011

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,

Wednesday, June 8, 2011

The Conscious Patient Guide to The ICU

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

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

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

1) There's no harm in asking.

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

2) Get creative.

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

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

3) Stay active.

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

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

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

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

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

And last but not least:

5) Keep your eyes on the prize.

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


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Monday, June 6, 2011

6 Stages of (Hospital) Grief

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

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

This is when I get sad.

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

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

And then we come to stage 4. The Wall.

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

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

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

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

Stay well, beautiful people.

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