The other night, I had a beautiful celebration in honor of my donor and his amazing gift to me. Surrounded by friends and family, I laughed harder than I have in a long time as we shared a great meal and toasted each other and "Donor Bob." It was a nearly perfect evening and a nearly perfect way to pay tribute to the lungs that now allow me to walk through a museum, talk with friends, run through the rain, or laugh until I cry. And I hope, also, that it was a nearly perfect way to show Bob (wherever he is now) how much I appreciate everything he has done for me so far, and everything we will do together in the future. I hope that, if his family could have been there that evening, that they would have found it nearly perfect as well. I hope that it would have been enough.
It's hard for me to describe what this past year has been like in terms of my life and my health and my spirit. One thing is certain: it hasn't been boring. I've been in and out of the hospital twice (which, granted, doesn't seem like much, although to be fair both times were super annoying), I've had a lot of bronchs, a lot of clinic visits, a lot of IVs. A lot of stuff that, to be honest, I wasn't really expecting out of life immediately post-transplant. And it's been hard. It was hard to lose a friend while stuck in the hospital and unsure if I would even make it to her services. It was hard to make myself chuckle when my homecare nurse joked that she'd never seen anyone on so many IVs post-transplant. It was hard to deal with not understanding my new transplant body and making what I'm sure were pretty rookie mistakes. It was hard hearing the words "rejection" and it was hard to change my eating habits and hard to have to watch my family scramble to rearrange their schedules at the whims of my doctors so that they could be there for important appointments or procedures. All of that was -- and continues to be -- really, really hard sometimes.
The difference is that now when there's pain, I can breathe through it. When I feel stuck I can take a deep breath to steady myself before moving forward. When things get too frustrating now I can let out a long, dramatic sigh. When I break down and start crying about the IVs or the medicines or the sleepless nights or whatever I decide is my complaint du jour, I have lungs that will sob right along with me without forcing me to break for a coughing fit. And when I finally come around to a place where I can laugh about it all -- or when I realize that despite the madness I'm actually still doing okay, still living, still blessed, still Piper -- well, I have lungs now that will let me laugh for hours if I want to.
So I'm getting my new port placed. And I'm going to have another bronch next week. I'm going to get sinus surgery. I'm probably going to go back on IVs sometime fairly soon after I stop them this Friday, if only as a preventative measure before and after the surgery. I'm going to take every single pill, shot, antibiotic, and sinus rinse they tell me to take. I'm going to keep rearranging my life to fit the needs of my body. I'm probably even going to keep asking for help. I'll be the first to admit that I'm not going to do any of these things happily (I can think of a lot of things I'd rather be doing, starting with swimming with sharks and moving on to making close friends with the rather large cockroach my dog attempted to eat off the street today), but I can promise that I will do them.
And I promise to try and treasure every single sigh of frustration along the way for the nearly perfect gift that it is.
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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