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

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…

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…

Are you living or surviving? Most cystic fibrosis patients have dabbled with this question. To what extent does your health guide your life, rather than love or ambition? I knew the answer back in 2018, but after my bilateral lung transplant in June 2019, things grew complicated. Letting go…

I was evaluated for my bilateral lung transplant in March 2019. I was transplanted on June 14, 2019, and graduated from physical therapy two months after that. Although transplant facts are more accessible today than in the past, many patients remain in the dark, so I’ll tell you about…