First in a two-part series. Turns out a spoonful of sugar did not help the medicine go down. Instead, it aggravated my steroid-induced diabetes. Allow me to provide a little background. Based on issues I had throughout childhood, such as food sensitivities and digestive issues, my pediatric team suspected…
Lung, Scrappy, and Hungry — Nicole Kohr

Nicole graduated summa cum laude from Kean University’s School of Communication, Media and Journalism; she became certified in the theory and practice of child life the same year. Nicole is a satirical writer in the cystic fibrosis community. Diagnosed with CF at age 5, Nicole spent most of her life hiding her disease. When she got a double-lung transplant in June 2019, she embarked on a journey of transparency, and now hopes her column, “Lung, Scrappy, and Hungry,” will inspire others to be transparent.
“One Last Time” from the musical “Hamilton” is sung by the actor who portrays George Washington and sets Washington’s farewell address to music. It’s the perfect song for this breaking news: This is my final column. With that said, I can’t think of a stronger way to depart…

At the start of each new year, I try not to have regrets from the previous year, especially as related to my cystic fibrosis. “Forget about that handful of medication you missed,” I’ll tell myself. Or, “So what if you didn’t stick to your diet!” Then, I’ll watch an old…
In a previous column, I explained that I was diagnosed with mycobacterium abscessus — one of the deadliest infections for cystic fibrosis (CF) patients — in my junior year of college, and how that was one of the many times that my chronic illness affected my education. I was…
Get-togethers are relaxing, supposedly. I do not feel this way, and I blame this on my cystic fibrosis (CF) and the extent to which my mother and I had to prepare for social events when I was growing up. There are three reasons why…
I didn’t tell my boyfriend — now husband — that I had cystic fibrosis when we started dating. We were in college, and I wanted to be known as the girlfriend with blue hair, not the girlfriend who frequently uses nebulizers. On top of that, I didn’t want to burden…
Have you ever heard the phrase “I can’t slow down or I’ll stop?” I’ve always operated that way. I’ve always been accustomed to pushing myself and “sticking it to the man.” This gave me energy. More importantly, I was afraid that if I slowed down and accepted my situation —…
In honor of the release of “Tick, Tick… Boom!” I wanted to mention one of my favorite composers, Jonathan Larson, and one of my favorite Broadway shows, “Rent,” which he wrote when he was a young, struggling artist and chronic illness patient. The story, which follows a…
“Are you ready for your pulmonary function test, Nicole?” the respiratory therapist (RT) would ask. My answer was always no, I was never ready for the test. In fact, I’d panic over it for at least a week, clinging to the possibility that my lung function somehow had…
In the sequel of the Harry Potter spoof musical “A Very Potter Musical,” which is appropriately titled “A Very Potter Sequel,” we follow characters we’ve come to know and love as they go back in time. I was always attracted to the opening number, “It’s Not Over Yet,” because…
‘Satisfied’ (With My Care)
If you’ve ever been hospitalized, you likely received a survey upon discharge that asked, “Were you satisfied with your care?” Patient satisfaction is important because it helps hospital staff produce patient data, create new initiatives, and enhance transparency. I’ve been to many hospitals over the course of my career…
I have always loved Halloween, but celebrating it with a chronic illness like cystic fibrosis has always meant having to be creative. Being chronically ill meant having to spend a few Halloweens in the hospital or at home, but my mom always made the most of it so that I’d…
This week’s thoughts are inspired by one of my childhood best friends. She lived down the street from me for most of my life. We’d drive to school together. We’d have lunch together. She’d visit me at the hospital and we’d talk about boys. Now, she’s a…
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