I resisted being listed for a lung transplant; but now, almost six years later I’m thankful — especially to my donor — for my new life.
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There are many ways you can support a family with a child or children with cystic fibrosis. Educating yourself about the disease and its treatments and offering to help without being asked are some of the best ways you can show you care.
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.
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.
A life with cystic fibrosis taught me how to be sick. After a lung transplant, I had to learn how to be well.
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.
My son’s CF diagnosis created an unexpected challenge while breastfeeding him. But through practice, help from our care team, and support from the CF community, we found the perfect balance to meet his nutritional needs.
I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
My mom was always my biggest advocate and most selfless caretaker, but she went above and beyond when she also took my friend under her wing.
When my wife and I learned that our son, Benny, has cystic fibrosis, we were concerned about how we would fit his treatments and care into our daily lives. We are grateful to have not needed to make many major changes like we anticipated, thanks to having a village around us and finding ways to make treatment time more fun.