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.
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.
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.
Taking care of your new lungs is a big responsibility. Your transplant team will help you learn how to reduce the risk of infection and
Transplant and recovery is physically and emotionally stressful. But, there are things you can do to help you cope with the stress and the changes in your life that a transplant can bring.
Life after transplant includes taking care of your new lungs -- and your cystic fibrosis.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.
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.