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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Although they have been full of physical and emotional challenges, as well as life interruptions, multiple transplants have helped me become the person I am.
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I spent 2020 in COVID-19 quarantine and in the hospital separated from my family while waiting for transplant. I'm very grateful that the call came and I have new lungs -- and a new life.
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When I met my husband, who has cystic fibrosis, he was listed for a double-lung transplant. I thought I was prepared for that. I wasn't.
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Getting a double-lung transplant has been a life-changing journey. Along the way, I've had to deal with changes in my mental health and the struggle to keep my survivor guilt in check.
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Although I went through a lung transplant evaluation, I decided not to be listed.
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I didn't know until date four that my future wife had cystic fibrosis and was a lung transplant recipient. She was too wonderful for me to care.