Monday, December 10, 2012

Catching Up

Oh, hello again, beautiful people.

First of all, I want to thank everyone for the super sweet messages asking where I've been since my last post. I also want to apologize to anyone who might have been worried. When I started this blog, way back in 2008, I decided I wanted to write about "Life, Lung Transplant, and Cystic Fibrosis. And Everything In Between." At the time I was 26, working as an indentured servant -- um, I mean as an "associate" -- in a New York City law firm, and had just been evaluated for a double-lung transplant, for which I was at that point inactively listed. I was on a never-ending cycle of IVs, was using O2 to get around most of the time, and was pretty constantly in and out of the hospital. What I didn't realize at the time was that my life back then WAS more or less about lung transplant and cystic fibrosis. What was in between was a whole lot of work -- working to keep myself "healthy" enough to stay out of the hospital and inactive on the list, working to stay ahead of the curve at a job I loved even though I was barely able to keep myself breathing, working to fit in all my treatments and exercise and appointments and IVs and whatever else I had going on at the time. Working, more or less, to keep my head above water. You know, where the real air is.

In the past two and a half years, I've had what some people would consider a pretty wild ride post-transplant. There have been some bumps in the road. I spent most of the first year after my surgery STILL on IVs, for example, and I've been in and out of the hospital a few times even just in the last couple of months. I've had port infections and cath infections and lung infections and "normal people" infections and even some just really strange infections, although I'm told that nothing is really all that strange in the twilight zone that is lung transplant living. But the simple fact is that even with all this stuff, I have still experienced way more of LIFE in the past 2.5 years than I had for a long time prior to receiving my new lungs. And sure, Donor Bob and I have now been through a couple of ports and a couple of rough patches and a couple of rounds of photopheresis (with more to come on that score, lucky us!), but we've also been through a couple of birthdays I wouldn't otherwise have seen, had a couple of trips back to my gorgeous home state of Colorado (which I couldn't even visit anymore with my CF lungs), and shared more than a couple truly wonderful experiences and opportunities that I could never have imagined without the gift he gave me. And better than just having all those things together, we've LIVED them. Which is to say that I've been able to live again because of his gift, and I hope a little piece of his spirit lives on through me somehow. I know I carry his memory with me always, as well as his lungs.

So here's my latest update, lovely friends, which is that Donor Bob and I have been busy catching up since our last post.

We've been catching up with lung transplant with our continued determination against this silly rejection and the placement of our brand new Vortex port for photopheresis (scheduled for hopefully next week -- yay!).

We've been catching up with cystic fibrosis through the incredible opportunity to participate on a new project with the fabulous folks at the Cystic Fibrosis Foundation and through more and more chances to meet and be inspired by so many of you all -- our indomitable "cystic underground", for which we are forever grateful.

Best of all, though, we've been catching up on life by turning 31 together. Take that, CF! And, of course, through a thousand little miracles each and every day and the countless breaths that allow us to share in them together.

But don't worry, beautiful breathheads, we'll still be here to catch up with you all via this blog as often as we can. In the meantime though, we wish you all a very beautiful holiday season, the happiest of Hanukkahs, the merriest of Christmases, and the most joyous of new years full of hope, health, and as much of this wonderful life as y'all can possibly handle.

And Everything In Between. 

Piper, Donor Bob, and Sampson


  1. Piper you have a way with words. I will continue to be in awe of your LIFE with Cystic Fibrosis and lung transplant for a long time to come. Thank you for inspiring so many including this CF momma. Have a great holiday! ---Debbie