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.
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Having cystic fibrosis means that hospitalizations are nothing new to me. But as I get older, I am much more aware of all the events I'm missing out on — birthdays, concerts, and school field trips. So this fall, I decided to take my life back from cystic fibrosis.
Adjusting to life after my newly adopted son’s cystic fibrosis diagnosis has been challenging at times, but I will do all I can to support and advocate for him.
Fitting school, work, and CF treatments into my daily routine is tough, and when I push myself too far, my performance and health suffer. I’m determined, however, to keep going and find a balance that is right for me.
We’re highlighting five creators who are helping raise cystic fibrosis awareness. They’re voicing the many ways that people experience the disease by sharing a part of their life through their works.
Growing up with CF was hard, but my parents helped me learn how to cope by both encouraging me to fight and allowing me space to complain.
From scheduling appointments to dealing with insurance, taking charge of your own care is a part of becoming an adult with cystic fibrosis. However, when the time came for me to take over these responsibilities, I realized more could be done to make the transition smoother.
It took a lot of self-advocacy — and a lot of medical testing — before I received a diagnosis of CFTR-related disorder. Fortunately, my parents supported me as I went from specialist to specialist and finally got my diagnosis.
From a young age, I was determined that cystic fibrosis would never stop me from pursuing my dreams in the medical field. It wasn’t until I hit a road bump in pharmacy school that I realized my CF could actually give me a unique advantage.
I learned that service dogs for diabetics can be trained to detect the scent of high or low blood sugar. Could this type of training be effective for teaching my service dog to detect when I have a bacterial infection?