Saturday, November 5, 2011

The Puzzle People

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

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

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

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

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

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

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

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

1 comment:

  1. Congratulations Allison! Wishing you a long and healthy road with your new kidney!