Lung, Scrappy, and Hungry – a Column by Nicole Kohr

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.

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…

If you plan on dressing like a doctor or a nurse this Halloween, you already know what to wear: a long white coat, scrubs, or an old-school nurse cap. Costuming a patient for a television show is easy, too. Simply put them in a hospital gown and have them…

I assume the bathroom is a sterile, uncomfortable place for most people. It’s a room where you touch up your makeup, relieve yourself, or take a shower at the end of a long day. But for me, a chronically ill person, the bathroom is so much more than that. A…

“Fall Risk” is a new musical comedy about cystic fibrosis (CF) and transplant written by yours truly. CF education and awareness are very important to me. One of my favorite takeaways from the show has been how educational the rehearsals have been. Last year, during dry runs for…

Clinic anxiety is real, especially if you’re frequented by bad news. When I was little, I never wanted to go to the doctor. “Clinic” meant hearing speeches that felt disciplinary in nature, adding medications to my regimen, or being threatened with a lengthy hospital stay. Needless to say, I…

Hair has always been a huge part of my identity. Sometimes, it was my way of communicating. Other times, it revealed my declining health. Despite the risks of it being cut too short or dyed the wrong color, my biggest fear was always losing my hair.  …

If I were a superhero, my Achilles’ heel would be water. Before I illustrate, I must explain how anti-rejection medications work. A healthy immune system is trained to attack foreign bodies such as viruses because they’re often harmful. When I received my double-lung transplant in June 2019 due…

Most cystic fibrosis (CF) patients are admitted to the hospital for “tuneups,” which are hospital stays meant for IV antibiotics and additional treatments. CF patients are known for having frequent respiratory infections, and tuneups are done either proactively or reactively, based on a patient’s needs. Some patients have more…

A funny female pediatrician named Dr. C diagnosed me at age 5. After years of Mom begging doctors to pay closer attention to my symptoms, she stumbled upon Dr. C’s existence when my regular pediatrician wasn’t available. After listening to my mother for a mere 20 minutes, Dr.