Friday, August 2, 2013

Starting Over (Yet Again)

Okay guys, so where were we?

I feel like so much has changed in the slightly over a month or so since I last wrote, back when I was still in the hospital for my Campath infusion. For those who need a refresher, Campath is basically an atom bomb in an IV bag (you can read the more complete explanation here) -- it's a one-time infusion that knocks out the vast majority of a recipient's t-cells and thus hopefully stops the process of organ rejection. In my case, it was given after trying a variety of other treatments to slow/stop the progress of chronic lung rejection, which is a fancy way of saying it's a hard-core drug we brought in with the hopes of convincing Donor Bob to stick around for a little while longer. Because, quite frankly, I've gotten pretty attached to these lungs in the past 3 years, and I'm hoping to keep this relationship going for a long time to come.

I received the Campath back in June, and one of the things my doctors told me at that time was that we might have to wait several weeks to see any real results. So I did what any normal, self-respecting gal would do during that waiting period: I packed up and moved across the country.

I mean, come on, doesn't everyone do that?

So now I'm back in Colorado, which is my original home state, close to my family, people who love me, and the mountains I adore. I know I'm super lucky to be able to do this, thanks largely to the fact that my wonderful transplant team is willing to work with an equally amazing CF clinic out here to make sure I continue to get high-quality care for my beautiful lungs, and believe me: I am beyond grateful. Besides the obvious benefit of being out of the City during a time when I have little-to-no immune system to speak of, I'm also closer to my core support system, in a place where outdoor exercise is not only possible but almost mandatory (I'm just waiting for the day when hiking becomes a legal obligation in this state!), and able to test whether a change in venue and air quality might have a beneficial effect on my steadily declining lung function.

Because, sadly, that's where we are right now. And I'd be lying if I said that it wasn't absolutely terrifying.

My PFTs right now are hovering in the mid 30% range, which is not where I need them to be. In fact, to be perfectly honest, my current numbers look an awful lot like they did back when I started this blog in 2008. I'm hopeful that some of my ongoing "medical to-do list" tasks will help bump them up a bit (rehab and reflux and drugs, oh my!), but right now I'd be more than happy just to see the numbers stabilize. And believe me, I'm doing every single thing in my power to make that happen right now, from adding inhalers to pushing myself to stay active to simply believing that this is going to work out. Because it will. Because it has to.

Because I said so.

I'm not ready to throw in the towel on these lungs yet, though I am prepared to face the prospect of re-transplant when and if my wonderful team(s) of doctors decides that it's time. The idea of facing the entire process over again is daunting, sure, but that's a path that I've already decided to follow should the need arise. What I want more than anything right now -- aside from a magically high FEV1 at my next clinic visit -- is to walk down it knowing that I did all I could for these lungs, for Bob, for my family and friends, for Sampson, for my community, for myself. And I invite you to come along on this journey (yet again) because together, beautiful people, we have a way of making even the toughest roads a little less rocky. And because I know from experience that the muddiest crossings can make for the most beautiful miracles, and that, lovely friends, is exactly how I plan to make all this happen.



  1. Piper, you rock and keep me inspired. You're facing some of, I imagine, your worst fears with optimism, dignity, and diligence. Which is exactly what you are supposed to do. :) Much love and prayers for you. <3<3<3

  2. Wow, just speechless after reading this. I went through Chronic Rejection 2 1/2 years ago and survived but I don't think my outlook was ever this positive! Hang in there, it's a tough road but worth it in the end! My second set of lungs is even better than the first! Not a single complication since my transplant. Praying for your daily as I know we all are! Ever since we heard you speak about a year ago my husband and I are addicted to your blog. The world needs more Piper's!!!

  3. keep fighting chica!! i know whatever happens you'll be doing it with your head held high and ready to conquer it. you rock!! :)

  4. Sending good thoughts and prayers. I wish it were easier to come up with the one thing that helps turn around PFTs. Keep on swimming, as Dory says.

  5. Piper. Want so to see you in Colorado. Are you staying at your parents? I am so impressed with your attitude and your writing. Love you so much.

  6. Hey Piper! I also have CF and funny enough also live in CO. I started reading your blog in late June as I was beginning to dig into the world of Lung transplant. It was interesting reading this post because my life too has dramatically changed this summer. I went from never wanting a transplant in June to deciding to get one and, actually, leaving on Tuesday to move to NC to be listed at Duke. Thanks so much for writing this blog! It has been so helpful to read about your experience. I hope everything works out for you! Your fellow Coloradan Cyster!

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