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.