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.
If your cystic fibrosis care team refers you to a lung transplant center, you and your transplant team will have the opportunity to get to know each other.
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.
Because transplant is such a complex process, most transplant centers require that candidates gather the necessary social support to help navigate the transplant process.
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.