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My brother received a liver transplant the day before his 15th birthday but soon needed another.

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.

My path to a total colectomy was long and challenging. Now I want to share what I learned about self-advocating for necessary medical care and coping with a surgically created opening on my abdomen called a stoma.

I have faced numerous health challenges in my life, including a recent diagnosis of osteopenia. Despite this, I am resilient, grateful, and determined to take care of myself while finding strength in the cystic fibrosis community.

Advances in cystic fibrosis care have been life-changing for me, and I’m grateful to breathe easier with a CFTR modulator. However, I began to experience new issues in the past few years, and I am left wondering if it’s a side effect of the CFTR modulator or something else.

It took a lot of self-advocacy — and a lot of medical testing — before I received a diagnosis of cystic fibrosis-related metabolic syndrome. Fortunately, my parents supported me as I went from specialist to specialist and finally got my diagnosis.

The antibiotics used to treat nontuberculous mycobacteria made me choose between the risk of hearing loss versus the reward of better lung health.

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.

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. 

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.