Sunday, August 22, 2010

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'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,

Wednesday, August 11, 2010

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.

Thursday, August 5, 2010

I (Heart) My Heart


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.

Tuesday, August 3, 2010

Nothing to Say (Except Everything)

There isn't much to write about today.

I spent the day up at the hospital, where I had appointments with both the diabetes educator and the transplant team. Included in the madness was the normal litany of tests: blood work, chest x-ray, and PFTs. In other words, we were there from 10 am until 4:30, but wow, was it ever worth a little exhaustion. I got great advice from the very nice and very helpful diabetes educator, who had no qualms at all telling me that I need to be eating carbs and treating myself, well, like a CFer when it comes to planning my meals. She adjusted my insulin, gave me some great aides to help me get started on carb counting, and was generally very encouraging. She said an A1C of 5.1 (my number) was excellent and she explained how the prednisone can cause my sugars to peak in the early afternoon. She is going to review my log for the next few weeks and keep adjusting my scale until we find something that works to allow me to eat exactly what I need to eat to feel healthy and gain weight. Most of all, she was friendly and seemed intent on reassuring me that this whole diabetes thing is not going to be a huge obstacle to life after transplant. I knew that, of course, but it was great to hear it from a knowledgeable source.

There isn't much more to report -- other than it was exactly what it should have been.

I went from there on to the pulmonary part of the program. I got all the requisite testing done and then headed in to see one of the wonderful doctors on my team. She looked at my x-ray and declared it completely clear, listened to my chest and exclaimed over how good it sounded, pointed out the log that shows a steady improvement in my PFTs each week despite the rejection, and went over all my cultures and bronchs with me. She asked me if I was having any symptoms and I answered no to all of them, at which point she laughed and declared that "we can't argue with that." Long story short, she seemed thrilled with my exercise routine, happy with my lung progress, and optimistic about my continued success post-transplant. It seems like my lungs are doing exactly what they should do in their new home.

And she's right -- we can't argue with that.

On the way home I dropped my mom off in the West Village and decided to walk home to lower Manhattan/TriBeCa. It was hot enough that I had some serious salt on my skin by the time I reached my apartment, but the day was beautiful and the people watching in NYC is always worth a little extra time outside. So I wandered along for a couple of miles and ended up back with my Sammybear in our cozy little apartment, where I finished my book and promptly started a new one before settling into a nice nap and then joining my mom and sister for an amazing dinner. It was low-key and relaxing and I used my new carb counting scale to ensure that I could even have dessert.

Just a nice walk, some downtime, and dinner out to finish the day -- nothing more.

In other words, I really wasn't kidding when I said that I have very little to write about today. My health and my lungs are so "normal" and run of the mill that they hardly seem worthy of their own blog. My life, and my breath, are blissfully devoid of dramatic swings or crazy events that simply beg for public retelling. The scariest thing to happen to me today involved a cab driver and New York traffic. The most annoying healthcare-related issue I'm facing right now is a crowded waiting room or the fact that long days at the hospital make me cranky. And the only reason I'm not taking my dog on more walks is that his short little legs mean he can't keep up with my pace. Seriously.

There's nothing to say -- and that makes it quite possibly the best blog post I've ever written.