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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A life with cystic fibrosis taught me how to be sick. After a lung transplant, I had to learn how to be well.
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In my experience, the best way to support a loved one with cystic fibrosis is to listen closely and remember the details of his or her most common treatments and complaints.
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My brother, Josh, who has cystic fibrosis has been through more struggles than anyone I know, but he has always kept a positive attitude -- even while awaiting a lung transplant. This outlook on life inspires me and helps me see the best case in any outcome.
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A sudden health setback turned my eventual lung transplant into an immediate one. Although the transplant didn’t go exactly to plan, my preparation helped the process go more smoothly.
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My wife and I opted for a surrogate to carry our child following her double-lung transplant. After five years of struggling with a bad surrogacy agency, we finally switched providers and found a surrogate who is now carrying our child.
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While waiting for another lung transplant, I learned that time is a wicked concept: there is so much of it, but never enough.
