Sunday, November 1, 2009

Saved by the Blog: One Woman’s Journey with Lung Transplant, Listing, and Life.

Guest Post by Piper Beatty

As a tried and true cystic, I sometimes like to pretend that I’m prepared for anything on the health front. 30 minutes of hardcore shaking while inhaling what essentially boils down to ocean water? No problem. Hospital stays complete with those middle-of-the-night blood draws that always seem to get ordered no matter how much I protest? Bring it on. CT scan with contrast and a little barium thrown in for good measure? Seriously, can’t you do any better than that?

Nope, there’s no denying that we CFers are a tough breed, ready to face just about any obstacle with generally good humor and the knowledge that we’re doing all we can to improve our health today and in the future. And besides, we’re experts at this whole “medical thing,” right?


So you can probably guess that it came as a bit of surprise to find myself standing in my doctor’s office fighting back tears and wondering when I was going to wake up from what had to be a bad, surreal dream. “Transplant?” I thought wildly, “no way! That’s for other people, or at the very least for the very distant future! There is NO. POSSIBLE. WAY. that what she’s saying right now about transplant referrals and evaluations has anything to do with me.” I honestly think that in that moment I had a pretty good idea of what runs through a deer’s mind when it sees those headlights approaching at 60 MPH. And I’m pretty sure that’s when instinct kicked in and took over.

My first instinct was to run, as fast as I could – literally. We all know that exercise is a HUGELY important part of CF care, and you don’t have to look any further than our beloved RSR blog to see how much of an affect running (and walking, swimming, lifting, bike riding . . . do I need to keep going here?) can have on your life and your lung function. So immediately after hearing the news, I took off running my own “miracle mile.” Using O2 as needed, and monitoring my HR, I started exercising more intensely and more aggressively than I ever had before. I was fixated, and it paid off as I started to grow stronger and developed more endurance. In fact, by the time I had my official transplant evaluation later that same year, I not only blew everyone away during my cardio exercise stress test, but I also walked 2200 feet in 6 minutes without oxygen, putting me firmly in second place for my center’s all-time record. Um, yeah, I was proud.

Despite all the benefits of exercise, however, I continued to get sick often and my PFTs remained relatively low. Then, after a couple of repeated back-to-back infections that resulted in lowering O2 sats despite my best efforts and that of my awesome healthcare team, instinct #2 kicked in: stand still, open eyes wide, and watch the headlights approach with statue-like serenity. This is the period I refer to as my “sick phase,” because it is honestly the first time in my 27 (nearly 28!) years of living with this disease that I felt genuinely “sick” in the truest sense of the word. My lungs were failing, I reasoned, and I needed a transplant, so why was I working so hard to keep the lungs I have now “healthy,” especially when the results seemed so mediocre?

And here’s where all of you come in, because it was largely the online CF community that helped snap me out of the dreaded “sick phase.” I don’t know if you all have ever sat down and read through some of the blogs on here, but we’ve got some amazing “cysters” and “fibros” out there sharing their stories. CFers who ran half-marathons months before their transplants, who have climbed mountains with their new lungs, who are starting families, living miracles, and surviving into their 40s, 50s, and beyond both with and without transplants. To my inner deer in the headlights, these messages were like a gentle nudge (okay, sometimes more like a forceful shove) off the highway. I realized that having CF is all about being as strong as you can possibly be and enjoying life to the fullest, two lessons I thought I’d learned as a fun-loving, active, and relatively stubborn CF child – but I guess we all need a reminder now and then.

In the past few weeks/months, I’ve decided to live by the motto of “proactive waiting.” For me this means making myself as strong as possible, both mentally and physically. I’ve read up on transplant to help prepare myself and make sure my expectations line up with the reality of what is, to put it mildly, a major surgical procedure. I’ve also read as many success stories as I can, and talked to many CFers who are living their dreams with their new lungs, because I know that positivity and believing in the best possible outcome is part of a full recovery. A great transplant role model of mine told me that “if you walk into a transplant, you’ll walk out of it,” and I’ve been trying to live that way each day: walking and strength training to keep my body healthy, meditating to relieve stress, and finding ways to stay productive, happy, and social even if I just plain don’t feel well that day (my puppy, family, and my friends help a lot on that front!).

Most of all I hope I’ve learned to trust, both in myself and in the greater plan. I trust that lungs will come at the right time, and I trust myself to be ready to receive them as the true gift of life that they are. So that when that call comes, I can walk into it with what I consider to be true “CF style”: a strong body, a positive mind, and a life well lived – with a wide-open future.

And no oncoming headlights.

Bio: My name is Piper, and I'm a 27-year-old CFer who lives and plays in New York City with my adorable puppy. I was diagnosed at 6 weeks old and started representing the CFF at fundraising events just a few years after that, so I've always believed in the power of spreading CF awareness and the importance of fighting for a cure. With the help of encouraging parents, I went to college and then on to grad school, after which I practiced as a lawyer on Wall St. for two years before taking a break to concentrate on my health. A year ago I started preparing for a double-lung transplant, an ongoing process throughout which I have been blessed with incredible support from my amazing family, wonderful friends, and the phenomenal doctors at New York Presbyterian Hospital. I consider this phase of my life a great exercise in patience, trust, and learning to enjoy life no matter what it throws at you, and I'm also looking forward to the future with amazing new lungs!

Note from Ronnie: I just wanted to give a big thank you to Piper for writing an outstanding guest post for RSR. Her blog ( one of the first that I followed near the beginning of the year and remains one of my favorites. I love the pro-active attitude she has had and continues to maintain even through this transplant process. I encourage you to leave Piper your encouraging comments as well as any questions you may have!

If you are interested in writing a guest post for RSR simply send me an email with a little bit about yourself and what you'd like to write about.