Surgery and recovery involves more than replacing your lungs. The process also includes making the physical and emotional adjustment to life with your new lungs.
It is important to discuss a possible lung transplant long before you need to be listed. This will give you time to prepare for transplant as a future option and work with your cystic fibrosis care team to understand the implications and to create a plan.
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.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.
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.
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.
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.