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.
BLOG
After my social media post went viral, I finally found my lung donor's family. The emotional meeting with them brought a confusing mix of happiness, grief, gratitude, and survivor's guilt. I received lungs because my donor was killed in a shooting.
BLOG
After discussing it with my family and giving it a lot of thought, I decided not to pursue a lung transplant.
BLOG
My relationship with the idea of a lung transplant has changed over time. Although I'm approved for transplant now, it is a complicated process with a full range of emotions. Here's what I learned along the way.
BLOG
Deciding to get on the double-lung transplant waiting list was a very difficult decision, emotionally. I was lucky my care team recommended early referral. It gave me the time to process my emotions about transplant and make an educated decision.
BLOG
Infection prevention and control is so important after a lung transplant, but often I am left with more questions than answers about how to protect myself.
BLOG
Shortly after receiving a double-lung transplant, I was fortunate enough to meet my donor's family. It brought us peace, healing, and connection.
