I made it onto the transplant list after first being rejected. After 18 months of waiting, I got the call that my new lungs were waiting for me.
I did the research. I asked the questions. I thought I knew what to expect when I had a double-lung transplant. I was surprised by what I learned.
You may be waiting for a transplant for a long time. While you're waiting, there are some things you will have to do in addition to your normal routine, to ensure you remain healthy and eligible for transplant.
There are many things that you can do while waiting for donor lungs to become available. Preparing for a lung transplant includes maintaining your health, performing your routine cystic fibrosis care, and being ready to respond when donor lungs are available.
Halloween, April Fools' Day, and Mother's Day may be average American holidays for most, but for me, they mark three important days in my long, emotional journey toward a new pair of lungs.
After my transplant team said I was too sick to undergo a double-lung transplant, I was determined to get well enough so that I could.
After two double-lung transplants my lungs don't have CF anymore, but the rest of me still does. In a very real way, CF isn't "behind me" at all. And that's why I continue to fight.
I recently attended the Cystic Fibrosis Foundation Lung Transplantation Summit. Many of the areas for improvement cited by the experts matched what I have seen as the mother of a two-time double-lung transplant recipient.
When my mom used to ask me what I wanted to be when I grew up, I told her that I wanted to be a dad. The journey to fatherhood with cystic fibrosis is full of obstacles, but I would give anything to pass on the traits I've gained from living with this disease to a child of my own.