Monday, September 20, 2010

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."


  1. Loving the list!!!!!

    Funny the things that are on people's "after transplant list". And the similarities that are almost always there. I think some form of running/dancing seems to be on everyone's haha! And of course there are a few on there that we can't post on the internet ;)

    BTW I'm curious to see how my laugh changes after transplant. I guess it would need to. I mean, now, if I have a controllable laugh, I control it. The uncontrollable ones, well I can't duh. I imagine those would be similar. But the controlled ones I can definitely see as changing since right now they are basically a modified "laugh" designed to allow some fun through and not completely keel over from coughing afterwards :)

  2. Thanks for sharing your updated list Piper! I have enjoyed reading it. I agree with Amy that there are probably a lot of similarities among our lists. I posted mine on my blog.

    And Amy, I had to laugh at your mentioning the unmentionable stuff. I had a dear friend Craig who spoke of all the things he would do after his transplant and most of them were unmentionable. He did not make it to transplant so I feel I must honor his memory by making sure to do what he would have, lol! My husband is excited about that part. :-)

    Thank you both for continuing to share your stories, they mean so much to me, as well as many others.

    Here's to all of us checking off our lists and making new ones!

  3. Incredible post! Such encouragement for others. So happy for you. It is touching how you are able to articulate your appreciation for the blessings in your life. I am so glad I found your blog. It gives me hope. Hope that this will one day happen for my son and he will be able to do and feel all the things on his heart. Thanks for sharing your journey. Blessings to you.