Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
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When I ran into a particularly difficult situation with my last job, the “d” word entered my lexicon for the first time: disability. While my life doesn't look like I thought it would, I have come to accept where I am and gained a new perspective on work and life.
My brother received a liver transplant the day before his 15th birthday but soon needed another.
Going back to work was hard. So. Very. Hard. But with the mounting costs of cystic fibrosis, I didn't have a choice. The decision had been made for me.
Like many of my millennial compatriots, I was booted from my parents' health plan when I turned 26. While my friends were shrugging health insurance off as just another growing pain of their 20s, I was panicking.
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.
The antibiotics used to treat nontuberculous mycobacteria made me choose between the risk of hearing loss versus the reward of better lung health.