We Go Together: A Post-Transplant Lesson

After two double-lung transplants my lungs don't have CF anymore, but the rest of me still does. In a very real way, CF isn't "behind me" at all. And that's why I continue to fight. 

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Piper-Beatty-Welsh
Piper Beatty Welsh, J.D., M.P.A.
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"Coming together is a beginning; staying together is progress; working together is success." -- Henry Ford

I can still remember the moment when the x-ray technician whistled, a long, clear sound that told me she was clearly impressed with the image on her screen. I was a mere six weeks out from my first double-lung transplant, the grateful recipient of shiny "new-to-me" organs that, with any luck, would allow me to reclaim parts of my life that had previously seemed out of reach due to end-stage cystic fibrosis lung disease. As she handed me a copy of my results -- glossy, picture-perfect proof that my new lungs were settling into their new home -- she offered me a handshake and a quick word of support. "Wow," she said with genuine enthusiasm, "it must be so wonderful knowing that cystic fibrosis is behind you forever."

What a nice thought.

It's been five years since that offhanded remark by a well-meaning technician, and I like to think I've made the most of them. I have, for example, managed to complete my master's degree. I have met and married my best friend and soulmate. I have returned to my gorgeous home state of Colorado after a thirteen year extended hiatus, and I have laughed much, cried some and generally felt blessed beyond measure more times than I can count. Heck, I even managed to squeeze an intense struggle with chronic rejection and a second double-lung transplant in amongst all the excitement -- and on Christmas Day, no less. And given all these adventures, I think it's fair to say that life with new lungs is NOTHING if not full of new experiences.

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But there's one thing that I haven't done, even once, in the time since I first received the Gift of Life more than half a decade ago. I have never, ever lived a single day knowing, as the x-ray tech so poetically put it, "that cystic fibrosis is behind me forever." My lungs don't have CF, true (and they never will again), but the rest of me still does.

In a very real way, CF isn't "behind me"; it's right here in front of my face, and it's just as devious and tricky as ever.

And that, beautiful people, is why I continue to fight cystic fibrosis. Every. Single. Day.

Yes, I still have CF in my body, and yes it still causes me a number of problems -- so much so that I regularly see my CF care center team in addition to my lung transplant team. And yes, I still feel invested in this fight having been a dedicated warrior for a cure ever since my diagnosis at the ripe old age of six weeks. But, you see, to me this mission is about more than that, honestly. So much more.

It's about my friends.

It's about community.

It's about purpose.

It's about finishing what we start, no matter what.

As we enter a world where people with CF are increasingly finding new and exciting ways to beat back this still deadly little monster of a disease (from transplant to new therapies to mutation-specific drugs), it seems easy sometimes to imagine simply leaving CF in the dust of our own paths. To smile and nod at the friendly technician and agree that it IS a relief when the worst seems to finally be behind us, full stop. But for me at least, the BEST part of CF has always been the knowledge that we are in this fight together. And we will stay that way, from beginning to progress to success. Until the day when we can truly leave CF behind ALL of us -- forever.

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Lung Transplantation
Piper-Beatty-Welsh

Piper  was first diagnosed with CF at 6 weeks old in 1981, and has since been the survivor of two double-lung transplants. Piper attended Emory University, received her J.D. from Columbia University Law School and then went on to earn her master's in public administration from New York University's Wagner School of Public Service. She is the owner and author of the popular CF and transplant blog, A Matter of Life and Breath, and lives in Colo. with her husband and puppy.

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