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 and perpetual pulmonary rehabilitation.
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. What I will do is mention that it’s expensive and never-ending. Six check-ups per year at two different clinics, tests and more tests, specialty drugs, insurance companies, their respective contempt for mankind … You know the drill.
If you’re the kind of person that likes to help, then perhaps you’d be interested in doing that: Helping. Office buildings being the dens of bacteria that they are, I’m stuck freelancing my ass off until I can find a health-compatible job opportunity. And my wife, as wonderful as she is, is not a millionaire. We are making significantly less money than we used to, while the cost of simply existing has skyrocketed. You can see the issue here.
On the other hand, 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, I’ve recently begun mentoring for the Lung Transplant Foundation. Feel free to contact them if you are a patient or a caregiver staring down the business end of a lung transplant.
NY Times essay on transplant and marriage
Cracked.com article on transplant
Blog posts on cystic fibrosis and post-transplant life
Lung Transplant Foundation Mentorship Program