Eight years ago today I received from my donor and donor family the gift of life, my double lung transplant. I have had eight great years of feeling almost like a normal person. Even now, with 15% lung capacity, I feel better in many ways than I did with Cystic Fibrosis. Back in 1998, my medical team cautioned me that I was trading one disease (CF) for another (immunosuppression). But my transplant sure felt like a cure. I still have CF, of course, and it affects several parts of the body. But the most life-threatening and irritating part of CF is what it does to the lungs.
Physically and mentally, CF is like Chinese water torture. At its best, CF is like having a bad cold every day of your life. I had a bad cold for 29 years. The mental challenge is even more severe. As I outlined in this post, I spent most of my life chasing a slowly rising life expectancy. Between 1980 and 1990, when I was 12-22 years old, the median survival age for people with CF went from 18 to 29 years.
Growing up, I never believed I would live long enough to get married, have kids, have an exciting career in the real world, or do any of the things most kids take for granted. As I got older, it became more and more clear to me what I was missing out on and what I was going to miss out on because of CF and the pressure of that loss wore on me. That was the mental water torture.
There’s no question that having CF has made me a stronger person. And I won’t claim it’s the worst ailment/plague/curse the world has ever seen. But I think it deserves to be in contention for that dishonor, if only because of its water torture diabolicity. (Not a word, but it ought to be.)
Can’t say I miss you, CF, ya farkin bastard.