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.
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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.
Our community's shared journey makes us unique and unites us in the hardest of times for some and the most hopeful for others.
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.
Life isn't always full of happy moments. Some are heartbreaking and some are crushing. But through it all, the life Kari and I shared together were the happiest moments of my life. I wouldn't trade them for anything. They were worth every second.
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.
Having spent her career working for a cure for cystic fibrosis, Patty Burks is still not content. She wants to remember her son in a way that makes a difference for others. That's why she has made the CF Foundation a beneficiary of her life insurance policy. This gift to the Foundation meets a need in her heart.
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.