Not having a roadmap for life wasn't a problem when I thought I wouldn't be around long enough to take the trip. A double lung-transplant has me rethinking this belief.
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The Cystic Fibrosis Foundation has been carefully following the story of a 10-year-old girl with cystic fibrosis who has severe lung disease and has been on a pediatric lung transplant list for 18 months. Her family has organized an online petition and filed a lawsuit to help her receive an adult donor lung.
After my lung transplant, I discovered I couldn't keep eating the typical high-calorie CF diet. By learning to practice mindful eating, I have found a new way to enjoy my food.
As the parent of children with cystic fibrosis, it can be challenging to know where to turn when they experience unfamiliar health issues. Here are six things I've learned from working with our CF care team and our pediatrician to keep my kids healthy.
The video of the second plenary at this year's North American Cystic Fibrosis Conference was focused on lung transplantation and is now available to watch online. Having had a lung transplant and as one of the people with CF featured in the video, this particular session had a personal meaning for me.
I had a lung transplant earlier this year and, although I'm able to do more physically than I could before my transplant, I still have cystic fibrosis. I still need support -- support from the CF community, from the CF Foundation, and from you.
Growing up with cystic fibrosis, my parents always encouraged me to take responsibility and be open and honest about my disease. That's why my number one piece of advice for parents of kids with CF is to entrust your child with small bits of responsibility at an early age so that they can take care of themselves down the road.
My experience with complications after lung transplantation led me to join a group that is trying to make it better.
Join us on May 21 at CF MiniCon: Transplant, a virtual event that will focus on transplants for adults with cystic fibrosis.
To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.