Sharing your CF story is one of the most powerful things you can do, but that can be hard for some of us. If you want to use your voice but struggle with how to get started, here are three things that helped me.
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I have learned a lot about myself in the three years since I started Trikafta®. Even though I am healthier, I feel less connected to the cystic fibrosis community and my care team.
In the 26 years since my double-lung transplant, I’ve lived through cancers and other post-transplant complications. It’s been difficult at times to remain positive, but I won’t give up. I’m a fighter.
I had double-lung and liver transplants 16 years ago. Although nothing is guaranteed after transplant, here’s what I’ve learned maintaining my health after transplant.
My parents made sure that I enjoyed my childhood despite my health struggles with cystic fibrosis. They focused on making sacrifices and hard decisions, such as relocating to be near my clinic, and never letting me brood over my prognosis.
The road to recovery after a lung transplant can be long and arduous. It took me awhile to appreciate all the benefits, but I am blessed with the ability to breathe and a new-found confidence that has emboldened me to try new things.
Having cystic fibrosis has been a double-edged sword. CF has caused suffering, but it also has given me the perspective to embrace my life.
Since my kids were born, I’ve had two lung transplants and spent months in the hospital at a time for cystic fibrosis complications. It’s just as hard for my kids to go through as it is for me, so we make sure we talk about my CF openly as a family.
My transition from pediatric to adult care filled me with anxiety and proved to be much more difficult than how the experience was described to me. But, when care centers work together with their patients and listen to their concerns, we can improve cystic fibrosis care and address concerns much sooner.
All my life, I thought I was clumsy. It turns out that I had a neurological condition, bilateral vestibular loss, that was in all likelihood caused by antibiotic use.