Just Do It: Cure Edition

So I'm always going on and on around here about my awesome family, and sometimes I wonder if you all get sick of it. I mean, be honest, here. Are you tired of coming onto my blog all geared up to here (yet another) story about the life and times of a slightly crazy transplant patient and her very high-strung puppy, only to find yourself somewhat disappointed by the fact that all I ever seem to talk about anymore is my fabulously helpful mother, my fun-loving father, or my pretty much ridiculously talented sister? Yeah, I kind of figured as much. But fear not, lovely people, because I 100% promise to you all that this particular post that you are about to read will not be in any way shape or form about my fabulous family. No, really, I mean it this time.

It's gonna be about my equally fabulous friends.

Shocker. Bet y'all didn't see that one coming from a mile away, did you?

But, although I'm not kidding when I say that all of my friends definitely deserve to have a blog dedicated to their wonderfulness, this post is about one friend in particular. Remember this guy?

(Psst...he's the one on the right.)

Yep, that's Ben, who at around this time last year ran the 2009 NYC Marathon, and in the process raised about $4,000 for Team Boomer and the fight to cure cystic fibrosis. Um, yeah, did I mention that I have pretty fabulous friends? I wasn't kidding...

So this year, of course, Ben is at it again. Believe me, beautiful readers, I have tried (and tried, and tried, and tried again) to get this guy to slow down and stand still more often. And frankly, it just flat-out doesn't work. He pretty much makes me look lazy (actually, he would probably make the Tazmanian Devil look like a couch potato if the two ever went up head-to-head, though it's possible that our own "super fibros" Ronnie and/or Jerry Cahill could outrun him, not to mention Rock CF's incredible Emily. Just sayin', Ben.) Given that simple fact, though, I've decided instead to focus my energy on something a lot more doable than forcing Ben to stop moving. Something relatively easy like, say, finding a cure and saving the lives of over 70,000 children and adults around the world. Right. Because we all know that together we can totally do that.

Which is why, on 10/10/10, Ben is going to be running the Chicago Marathon in support of the Cystic Fibrosis Foundation. And, as we all know, the CFF is an amazing charity, with over 90 cents of every single dollar raised going directly towards life-saving research and drug development. In the immortal words of Dr. Bob Beall: money equals research and research equals science and science equals LIFE.

But, of course, none of you need me to tell you that, right?

PLEASE show your support for this amazing guy and this amazing cause. There are so many ways to do it, and they're all super easy.

1) Obviously, this is a fundraiser, the primary goal of which is to, well, raise funds. If you feel like helping out Ben's marathon awesomeness, please do so here.

2) If you live near the Chicago area, please go out and support Ben and all the runners on Sunday, October 10th. I'm not allowed to travel for a while post-tx, or I would totally be there. And, of course, cheer especially loud for all the wonderful people running for the CFF.

3) Feel free to leave Ben a message in the comments of this blog to let him know who he's fighting for and how much we all appreciate it. Believe me, this sort of encouragement will probably come in handy around mile 25 or so!

Honestly, I know I joke around quite a bit on the blog, but on a serious note: I'm so beyond proud and grateful to have amazing people in my life. And to everyone who continues to -- or has in the past, or ever will in the future -- put so much time, effort, and energy into the race to cure this crazy disease, please know that all the blogs in the world could never even begin to touch on how awesome you are. To you it might mean 26 miles (and 385 yards) of sweat and effort, but to 70,000 people around the world, it means everything.

New Lung Resolutions: Post-Transplant Edition

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Riddle Me This

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

Give up?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

On Mistakes and Magic Markers

When I was very young -- like, say, four or five years old -- my mother decided to have a very special chair reupholstered and placed in my bedroom. The reason this chair was special is that it had been my mother's childhood chair -- a beautiful mini-armchair that my mother chose to cover in bright pastel stripes appropriate for her little girl. I still remember the chair pretty vividly even now, which is a testament to how much I liked that single piece of furniture since the rest of my bedroom has grown a bit hazy over time.

On the day the newly covered chair was delivered to our house, my parents hosted a small dinner party. At some point during the evening I was alone in my room, either because I had been told to play quietly or possibly because I was supposed to be sleeping. Either way, I was alone. With the chair. And apparently also with a contraband black permanent marker, most likely filched from the kitchen counter with a stealth that would have made a professional burglar jealous. Cue the scary music because I think we all know what happened next.

My father eventually came to check on his sleeping angel, as parents tend to do. And when he found me I was apparently in the throes of artistic inspiration -- gleefully covering my new chair with dark blots in random patterns a la some deranged Jackson Pollack, or perhaps a paint-by-numbers gone horribly, horribly wrong. In either case, my mother was summoned to the room to inspect my masterpiece, whereupon she immediately burst into tears that, surprisingly enough, did not appear to be tears of joy at my brilliance. And I believe that was when my father turned to me, a stern look on his face, and asked me a version of the same question that parents have been asking their kids ever since Adam and Eve looked around and saw that the garden was a complete pigsty:

"Why, Piper? Why would you color all over your mother's chair with black marker?"

And tiny me, without hesitation, answered simply:

"Because I prefer darker colors."

I've been told this story about a million times. According to my mother, this was the point at which my father burst out laughing and I managed to get off with virtually no punishment, despite the fact that the chair had to be sent back to the shop for another reupholstering. In my dad's version, this was the moment at which he knew I would one day go to law school. My sister uses this story to prove that her childhood antics (which once included signing her name in paint all over the house and trying to blame the sleeping infant me for the damage) were nothing compared to mine. And my godmother likes to tell the story just because it makes her smile to think of my sister and me at that age. But whatever the motive, it's definitely become part of the Beatty family folklore.

My interpretation of this story is a little different. I see in it two things: 1) the fact that I tend to think things through before I do them (because I doubt my young self would have been able to come up with such a logical excuse on the fly had it not been my true motivation), and 2) just because something makes sense in my head, that doesn't always make it the right thing to do.

It's just too bad I haven't always been able to channel this lesson in my own life, right?

I've noticed lately that post-transplant living is nothing so much as one great big balancing act. The wire is wobbly and the stakes are high -- a single misstep, however good the intentions behind the act, could spell disaster. At the same time, perfection is pretty much impossible. The job itself is complicated. Mistakes will be made. And while standing straight and still in the middle of the wire might be the safest approach in terms of not falling, it will also mean that you never perform the trick you set out to master. That ultimate trick of living your life with grace, gratitude, and maybe even a little bit of style if you're lucky.

There are a few events that sparked this realization, but honestly I don't want to get into them here. Because the events themselves, although they seemed like huge deals to me at the time, were really just a drop in the bucket. The bigger issue, for me at least, is the reality that I have to find a way to live with these things -- with immuno-suppression and side effects and awkward conversations and, yes, mistakes. Like it or not, these are all part of my life now. They're here, and they're not going anywhere anytime soon, if ever. And it's 100% up to me to learn how to identify risks, how to be wary of the danger without standing still altogether, and how to both accept the mistakes I do make and correct them in the future. I have to be both my harshest critic and able to forgive myself in order to move on. And that, my friends, isn't always easy.

So I guess I find myself back in front of the chair, and once again holding that proverbial marker in my hand. Only this time, instead of just asking what I want, I have to ask what is best for all involved: who will I hurt, what will this cost me and my family, is there perhaps someone more knowledgeable on the subject of furniture upholstery that I should consult before making this decision, will I be sad if things don't turn out the way that I expect, can the damage be undone? These are just a few of the questions I want to ask my tiny childhood self. And at the same time, I hope I can maintain the courage to still nourish that inner artist (however misguided she might have been -- I mean, seriously, a black sharpie??) and give her space to continue living and expressing and creating and thinking and playing. Just, you know, preferably on a more appropriate canvas.

So thanks to God, my doctors, and my donor for the chance to make even more mistakes in my life. And a long-overdue thanks to my amazing mom for the beautiful chair.

To My Donor

Dear Donor Bob:

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

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

My God, thank you. Just thank you.

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

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

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

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

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

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

With Every Breath,
Piper

Learning to Breathe

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

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

A lifetime.

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

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

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

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

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

This is, well...this is life.

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

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

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

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

I (Heart) My Heart

Seriously.

Just in case I ever doubted that I was willing to go the extra mile for my vital organs, this past month or so has completely erased any question in my mind. I am officially an organ junkie, and I guess that's a good thing.

The newest addition to my organ-related paraphernalia collection is a beautiful new heart monitor. Yeah, you read that right, and I guess that maybe it deserves a little background. Long story (very) short, I have had, for the past several years, somewhat of an issue with SVT -- a tachycardia that we believe is caused by an extra electrical pathway in my heart. When that pathway is "triggered" in some way, my heart starts beating super fast (we're talking like 200-250 BPM here) and it stays that fast until it is somehow triggered to jump the track and get back on its typical sinus-rhythm pathway. Most of the time I can trigger this return to normal on my own, although more recently that has proven a bit difficult (due to transplant? trauma? my brush with end-stage lung disease? we really have no idea) and the attacks have been more frequent. So I tacked on a visit with a wonderful cardiologist during transplant clinic a couple of weeks ago, and here I am: typing this message with three lovely electrodes stuck to my chest and connected to a device that can only really be described by reference to Zach Morris' cell phone in the much-missed TV classic, "Saved by the Bell." (If you never watched the show, 1) I'm sorry to hear about your deprived childhood, and 2) google it. Seriously.)

The monitor clips onto a belt/pants, which is a relief as I was worried I might have to wear it around my neck a la the shirtless older man in the "CardioNet" pictorial brochure. Don't get me wrong, I enjoy funky jewelry as much as anyone, but I was a little confused as to how I would rock the "oversized electronics couture" look. Needless to say I was pleased to discover that I could upgrade to "outdated electronics nerd." Clearly a step up the social ladder.

But to be honest, all fashion-based concerns aside, I'm not too worried about this new little development. My heart, while never the most cooperative organ on the proverbial block, is really more of along the lines of a rowdy teenager than a dangerous sociopath. It likes to act up now and then, remind me of its presence with a couple of randomly fast beats, and it occasionally demands more than its fair share of attention. But, to be fair, it has been working awful hard lately trying to make up for its lazy neighbors -- the lungs. Maybe my heart will settle down now that they've been evicted and replaced with a new couple willing to do their share of the work. Or here's hoping, anyway.

(Disclaimer: I just want to take a second here to say that my particular brand of SVT is fairly non-threatening and benign, albeit still scary in the moment. This post is in NO way meant to imply that other, more serious cases of SVT are funny or should be dismissed. Some people, including a close family member of mine, have much more serious complications to deal with than I do.)

In the meantime, I have to say that it'll be interesting to see what this cardiac monitor finds, if anything. I've had at least one EKG while in an attack of SVT, but it was done at a downtown ER not affiliated with my actual hospital, so somehow the results didn't get transferred. At any rate, there's no guarantee that this two weeks will pan out anything -- and to be honest I'd just as soon they didn't. If at the end of this all everything looks perfect and they tell me it was all just a fluke and probably won't happen again (much) then believe me, I'll be one very happy CF/transplant/diabetes/cardiac patient. Bring. It. On.

In the meantime, though, I guess I'll have to settle for being hippest, most stylish organ junkie in all of lower Manhattan. And I wouldn't have it any other way.