Columns

My sister Mary was just in the hospital for the first time in nine months. Though she was an inpatient over the holidays last winter, as so many cystic fibrosis patients often are, we couldn’t visit her because of the pandemic, which made the experience even more difficult. Nine months…

When the U.S. Food and Drug Administration announced two years ago it had approved Trikafta (elexacaftor/tezacaftor/ivacaftor) for some cystic fibrosis (CF) patients 12 and older, I carried what I considered to be a healthy amount of skepticism about the hype. Articles like this one from The Washington Post…

In honor of the mixed reviews of the screen debut of the Broadway musical “Dear Evan Hansen,” I wanted to write about something every chronically ill teenager has taken part in: disappearing. High school In high school, I was voted most likely to be absent during the senior superlatives.

I canceled another doctor’s appointment. “I cannot get there in time and get back for work,” I said to my partner as I was writing this. “If I get stuck in traffic, or if it runs just a little bit late, I will literally mess up my job.” Someone…

When things fell apart, I screamed at God to glue me back together again. I’d been struck deaf, and putty clogged my lungs — airways literally gurgled when I inhaled. I puked several times daily between the panic attacks that ripped my mind to shreds. My whole body ached…

If I were to describe all of the health conditions I have, I’d need more column space. Each aspect of my health entails a unique story that requires explanation to understand the complexities. It’s challenging to balance all of the coexisting health conditions while maintaining my sanity. At an appointment with the pulmonologist last week,…

Transitioning home from a lengthy hospitalization was always bittersweet. While I longed for the comforts of home, being an inpatient for weeks on end turned into a strange “Beauty and the Beast” situation. I was a volunteer hostage, and I became dependent on my host. Dependence Like a zoo animal…

I want to introduce you to my gastric pacemaker. I’m not sure how many people know about her or what she does, and how she may have saved my life on more than one occasion. She wasn’t a fast fix. The girl is a slow worker. But over time, she’s…

Three days before my first semester away from home, I sat in a sea foam green chair straight out of the 1990s. I was 20, six months shy of graduating to my city’s adult CF clinic from the pediatric one, and sitting across from a doctor who was telling me…

Cystic fibrosis took my sister’s hearing. Well, actually, it was prolonged exposure to Tobi (tobramycin). Tobramycin is a frequently prescribed bactericidal antibiotic, or aminoglycoside, that’s effective in dealing with CF exacerbations. Because it’s so good at beating back pseudomonas, many adult CFers use it frequently and for extended…