Wednesday, November 25, 2009

And Every Breath We Drew Was Hallelujah

I feel like for the last week or so, ever since getting news that "we're number 1!" (sorry, I just can't resist the urge to make that into a little cheer every time I type it), I've been having these kind of slow-motion moments when I suddenly look around and think "wow, this could be the final time I do ____ with my 'old' CF lungs." I know that sounds kind of weird, but to be totally and completely honest the prospect of removing one of my most vital organs and replacing them with the lungs of another is a pretty weird concept, so bear with me if I get a little sentimental.

Yep, sentimental. Or maybe nostalgic is the word I'm looking for here. Because the thing is, I love my lungs. I don't particularly love the whole CF part, obviously, but I love that these amazing bags of tissue have managed to fight this hard for so long. I love that they're still breathing, still giving me enough rich oxygen to enjoy the holidays and my birthday. And if they need a little help every now and then, well, who can hold that against them really? Because these are the lungs I was born with, the lungs that saw me through so many horse-show summers and ski-weekend winters, the lungs that held their breath in that crucial moment before my first kiss and the lungs that fueled my celebratory cheers when I graduated. These lungs have been my heroes, my sometimes silent companions, and the bane of my existence at various times, but the point is that they're my original lungs, and it's hard for me to fathom sometimes letting them go.

Last night I stopped IVs. I was scheduled to stop this morning, but the peripheral infiltrated and it wasn't worth calling out a homecare nurse and starting another for one dose, so instead I simply called the game and pronounced myself (and my lungs) the winners yet again. A little over three weeks of hardcore antibiotics (our 7th course this year, but who's counting?) and we're back on top of our game -- able to do most resting activities without supplemental O2 and hitting the gym/gyrotonics like nobody's business. So it was time to stop the drugs, and as usual I couldn't have been more thrilled about it all. My mom and I carefully washed our hands with sterile soap, peeled back the tegaderm, and with a quick deep breath, pulled out the peripheral catheter and voila -- my arm was IV free. It's a ritual I've repeated over and over throughout the years, and it never stops feeling pretty darn amazing, as I'm sure you all know.

But as I stared down at my naked wrist, still red and a little raw from the infiltration and the dressing, it suddenly dawned on me that this might very well have been the final "tune-up" for my CF lungs. Kind of a heady realization, when you think about the fact that I've been enduring these pokes and lines and "wow, did I just get hit by a truck?" side effects for no less than 28 years. And yes, of course I realize that I'll be back on IVs off and on after transplant (hopefully more off than on), but the knowledge that these lungs (my lungs) might never again have to endure a course of Merrem or Tobra. Well, it was just kind of a "wow" moment, to put it lightly. Kind of like the other day when I realized after clinic that, unless I come back there earlier than my usual 3-4 weeks or so after IVs, I might also have had my final visit to the CF clinic as I know it. And again, of course I'll be back there occasionally after transplant. I'll still have CF -- I know that -- but my lungs won't have it, my CF doctor will no longer be my primary care pulmonolgist, and therefore it will all be different in some ways, even if parts of it will stay more or less the same.

I guess change always brings with it some sense of loss and nostalgia, even the most positive ones. Graduating law school is a great example -- I was so ready to be out of there, and yet at the same time I couldn't help looking around during those final moments on the Columbia quad and thinking "I may very well never see some of these all-too-familiar faces again." And I realized that, sure, there were parts of law school that I wouldn't miss much at all (Socratic Method, anyone?), but there were also parts that I would be kind of sad to let go. Little things, even, like just the simple routine of having familiar faces in the hallway and knowing how to find my way around the building. All those known, understood, and comfortable daily rituals that, however annoying they seemed at the time, made life just a little more predictable, a little bit safer. And I knew, of course, that I would make new friends and learn my way around new hallways at work. That was never a question, but it was still a change. And it was still a little scary.

I don't preach on this blog because it's not my calling and it's not my style, but I think I've been open enough at this point to say that I do believe in a higher plan. I believe that all of us are made from the same amazing universal light, and guided by a divine hand. Because of this belief, I know that there are perfect lungs out there for me. I feel strongly that they will come at the right time, and that they will be a blessing beyond measure -- a perfect gift from one child of God and the universe to another. But this doesn't mean that I expect my new lungs to replace my current ones. No lungs, no matter how perfect, could ever in my mind replace my CF lungs, because no lungs can go back with me and relive all those wonderful (and maybe even not-so-wonderful) moments of my life thus far. My new lungs and I will have new experiences, no doubt some of them amazing and wonderful and beyond my wildest dreams, but they will be new, framed by a different backdrop, and maybe sometimes slightly confusing. And that's okay, honestly. I've faced change before, and I've come out on the other side stronger and still myself. I fully expect to do it again.

So as I glance once again at my recovering IV site this morning, I'm still awash with feelings of awe and, yes, a little nostalgia for the CF lungs I might soon be giving up. But I also can't silence that other little voice in my head, the one that's been growing stronger and louder lately, and that simply seems to say over and over again: "This is okay. I'm ready. When the time is right, I'll be willing to let go of what's known and embrace the new. I'm ready."

And that is, by far, the biggest change of all.


  1. Keeping my fingers crossed for you that this will have been the last course of IV antibiotics treating your CF lungs!


  2. I can't believe it can be any time... just so crazy to me!

  3. I'm kind of in the mindset that I'm ready to just kick mine out the door! But I'm glad you can see it the way you do. Hoping you get your call!

  4. Man is a great feeling to get those IV's out. Congrats!!!! :)