Today marks 3 years from the day my beloved Donor Bob gave me the gift of life in the form of his precious lungs. It marks 3 years of all sorts of wonderful, from turning 30 to watching my sister come into her own as a fabulous designer; from meeting the children of some of my best friends to meeting someone absolutely amazing in every way. It marks 3 years of breathing, celebrating, and LIVING (with all the awesome ups and downs that word entails) and it marks 3 years of continued involvement in the quest to find a CURE for this little monster -- for all of us. The past 3 years have been hectic, amazing, scary, irresistible, indescribable, and -- above all -- beautiful. Every breath is a reminder of the gift I've been given, of the power we all have as humans to make a positive difference, and of the fact that too many out there still struggle for air. It is a lesson I learn and relearn daily, all because of an unknown stranger who had the grace to teach it me as his last act on earth.
And I am grateful.
Today also marks about 6 months since my PFTs began declining. So far, despite multiple treatments, IVs, bronchs, CT scans, and other fun procedures, we have yet to stabilize the numbers to my doctor's liking. So today now marks 2 days since I met with the doctors at a different, affiliated hospital to (re)start photopheresis, a blood treatment that may help stabilize my numbers by confusing the heck out of my immune system, for lack of a better description. (For those of you who like details, check out this post on the ins and outs of photo -- with pictures! -- for more information.) In addition, we're going to add a fourth immunsuppressant drug to my daily routine (this in addition to the prograf, cellcept, and prednisone I'm currently taking), and run some additional tests for other causes of lung damage such as reflux. Pending results on those treatment options, we'll make some tough decisions, but the end goal is get Donor Bob to stick around for as long as possible. What can I say but that after 3 years, I've become pretty attached to him.
And still I am grateful.
I'm grateful because today I got to take a jog/walk down to my old apartment, the one I lived in right after I left the Upper West Side. This was the apartment I lived in when I was lawyer, when I was first told I needed a transplant, when I got evaluated, when I started this blog, and when I first met Mr. Sampson Bear. It was also an apartment I lived in when I was sick. Like really sick. I stood out front of it today, in my running clothes, and I breathed. I breathed because I still have breath to do it. I breathed because Donor Bob, however down, is not yet out. I breathed because together we are still standing, we are still moving forward. And I breathed because it never hurts to take a moment to look back on where you came from -- even when you're not sure where you're going.
And then I turned around and went home. Round trip, it was exactly 3 miles.
- 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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