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.
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.
We asked -- and hundreds of you answered -- how you pass the time during long treatments. Check out what the CF community told us when we asked what makes you #morethanCF.
In our first 2016 “Living Today” video, Wes Parsel, 27, talks about almost everyone's New Year resolution: exercise. The big difference is that he's been doing this his whole life, in addition to his daily treatment routine.
For those of us without a medication that targets our cystic fibrosis mutation, it's important to remember that our life with CF is a marathon.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.
In 1986, I decided to walk across America to raise awareness of CF. Positivity, my martial arts training and the people I met kept me going.
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.