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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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.
Learning that my son, Rowland, has two rare cystic fibrosis variants and is currently unable to access highly effective modulator therapies was emotionally challenging and isolating for me. Then, I was introduced to another mom who could truly understand and relate to our experience. I am so grateful for not only the support we can provide to each other, but also for the friendship that grew from our connection.
Preparing for the school year with cystic fibrosis involves careful planning and advocacy. Since my daughter, Desi, started school, I’ve learned about how to best prepare Desi, her teachers, and school administration to help ensure her education and health thrive.