Being diagnosed with cystic fibrosis-related diabetes shortly after a lung transplant was difficult. But, working with my doctor helped me create a strategy to make it easier.
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I recently was diagnosed with a type of attention deficit hyperactivity disorder, which helps explain why I sometimes didn’t keep up with daily care. By taking ADHD into account, I’m managing my cystic fibrosis better.
The antibiotics used to treat nontuberculous mycobacteria made me choose between the risk of hearing loss versus the reward of better lung health.
Being in and out of the hospital and unable to recognize my own body was taking a toll on my mental health. But after my liver transplant, my family stuck by my side and helped renew my positive outlook on life.
My brother received a liver transplant the day before his 15th birthday but soon needed another.
I underwent liver and kidney transplants in 2021 after a successful lung transplant in 2012. For a number of reasons, the recovery from second transplant was much more difficult.
After two kidney transplants and one double-lung transplant, I am currently doing dialysis treatments as I wait for my third kidney transplant. Keeping a positive attitude and having friends and colleagues who support me have helped me adjust to life on dialysis.
Cystic fibrosis is unpredictable and I've found that some of the complications aren't as progressive as the disease.
I didn't know whether to cry on my surgeon's shoulder or punch him. In the end, I did neither. I looked back at him, dug deep, and said over and over again, “No. I won't sign.”
It can be a lot to manage two children with cystic fibrosis who have other health issues. I made it work by making my children responsible for their own treatments and not sweating the small stuff when we can't be perfect.