The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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My experience with complications after lung transplantation led me to join a group that is trying to make it better.
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Join us on May 21 at CF MiniCon: Transplant, a virtual event that will focus on transplants for adults with cystic fibrosis.
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Not having a roadmap for life wasn't a problem when I thought I wouldn't be around long enough to take the trip. A double lung-transplant has me rethinking this belief.
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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.
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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.
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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.
