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.
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The antibiotics used to treat nontuberculous mycobacteria made me choose between the risk of hearing loss versus the reward of better lung health.
I went from knowing nothing about cystic fibrosis to having the three most important people in my life diagnosed with the disease. I was shocked to learn that not only did my two children have CF, but also my husband had it.
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.
Having a baby spend a long time in the NICU is difficult. Here are some things I learned about how to deal with it.
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 felt like I was living with a secret disease because I could never find answers to what was causing the lump of mucus in my throat or the frequent cough that would often embarrass me at school or with friends. Then, finally, I uncovered the secret when I was diagnosed with cystic fibrosis at age 20.
Although she has two CF mutations, my daughter does not have cystic fibrosis. She has CFTR-related metabolic syndrome. She’s healthy now, but what about the future?
Despite my knowledge of cystic fibrosis, I was scared when my son was diagnosed with the disease. I already had a toddler and worried how I would balance her needs with his medical care. Now that he is a year old, I realize my fears were worse than reality.