I was diagnosed with cystic fibrosis when I was 3 years old. I lived with the disease every day until I was 34 and my lungs were cut out of my body and replaced with a donor set in a bilateral lung transplant at Stanford Hospital. Technically I still have CF, but the big news nowadays is the post-transplant immunosuppression, chronic rejection and scarring, and, of course, all the resultant mental health issues.
I’ll spare you the details on the metric assload of medications I take daily and the sob story of how an errant sneeze could end me. You can get plenty of official information on that from the Cystic Fibrosis Foundation, or, if you’d prefer my personalized, profanity-riddled ramblings about what I’ve been through, check out previous posts right here on this blog.
If you’re in a similar boat and would like to talk, feel free to email me. Or, if you’d like something a little more on the up-and-up, you can check out the Cystic Fibrosis Foundation’s Peer Connect mentoring program. Feel free to contact them if you’re a patient or a caregiver with questions, or if you’d just like to chat with someone who’s caught up in this very specific rodeo of ours, too.
Links:
NY Times essay on transplant and marriage
Cracked.com article on transplant
Blog posts on cystic fibrosis and post-transplant life
Fundraising website
Cystic Fibrosis Foundation Peer Connect mentoring program