Life after transplant includes taking care of your new lungs — and your cystic fibrosis.
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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.
At this age, your child with cystic fibrosis is ready to transition from breast milk or formula to whole milk or a high-calorie supplement. Encourage independent eating. Create a consistent schedule and mealtime expectations.
You may be waiting for a transplant for a long time. While you're waiting, there are some things you will have to do in addition to your normal routine, to ensure you remain healthy and eligible for transplant.
Taking care of your new lungs is a big responsibility. Your transplant team will help you learn how to reduce the risk of infection and rejection and keep your lungs healthy.
As cystic fibrosis damaged my lungs, I did all I could to make it to my university graduation before I underwent lung transplant.
With help and support from my parents, I felt empowered to make my first big decision with my cystic fibrosis care: When to remove my G-tube.
When I lived with advanced lung disease, I never expected to feel good again. But after receiving a double-lung transplant, my whole world changed.