Interview With Nicole Kohr, Author and CF Advocate
Nicole Kohr is so many things; she is a daughter, an author, a comedian, a partner, a dog parent, a patient representative, and more. Oh, and she has cystic fibrosis.
Born with 2 nonsense mutations, Nicole was diagnosed with CF at age 5. Growing up, her story may sound familiar to others with CF: doctor's visits, home IV's, getting a port, practicing infection prevention measures, and eventually getting a double-lung transplant. However, Nicole has channeled her experiences with CF into her work as the writer and executive producer of Fall Risk, a musical comedy about cystic fibrosis. She has also authored a children's book called Two Cents and participated in many different CF advocacy efforts.
We asked Nicole about her journey, her inspirations, and how her life has changed post-transplant. Read on to see what she shared with us.
Our interview with Nicole Kohr
What motivated you to want to document your journey living with cystic fibrosis?
Nicole Kohr: At first, nothing! Other than being very on top of my medication, I wanted nothing to do with cystic fibrosis. I didn’t like how people treated me when they learned that I had cystic fibrosis. I was no longer a girl with a dream of pursuing theater arts; I was an inspiration/patient. It’s like people forgot I had the same thoughts and feelings of a person my own age.
At age 5, I told my mom that I wanted to keep my CF a secret. Other than school teachers and the occasional friend, I did not publicize my CF until the day of my double lung transplant - June 14, 2019! At that point, keeping my CF secret was doing more harm than good. Putting on a normal face had been draining all of my energy for years. Coming up with excuses for why I was coughing or absent was exhausting. Trying to keep up with healthy girls my age while I was secretly coughing blood in the bathroom was exhausting.
Overall, I wanted people to listen, to finally understand what my family and I were going through, and most importantly, to have the support that we desperately needed. Also, I knew many CF patients on social media at that point, all of whom were looking for a transplant documentary. I told my mom to show them everything - good, bad, or indifferent - leading to a new journey of transparency!
How has your life changed since receiving a double lung transplant?
Nicole Kohr: LOL. What hasn’t changed?! I can maintain a weight of more than 100 pounds. The most I weighed before the transplant was 79 pounds. I can BREATHE. I couldn’t immediately post-transplant, which was terrifying and disheartening, but it just too time. An FEV1 of 135% is way better than 11%.
I can walk. I couldn’t even make it from the bed to the commode the few days before the transplant. I can be independent. I don’t feel like a hindrance to my family. My whole treatment plan is just pills. My entire life was renewed. Before the transplant, it was just like a countdown until I passed, which I never really accepted by the way. Now, there are risks, but the sky is the limit.
Tell us about the musical comedy, Fall Risk: The Musical. How did you come up with this idea and what has it been like working with other people with CF?
Nicole Kohr: I had been writing since I was a little kid. I wrote all of the school plays. I published books through those little “write your own story” kits for children. I always had a notebook on hand.
I started writing Fall Risk when I was 16. It started off as a coping mechanism, a way to distract myself in the hospital and write down what I was feeling. Every tune-up, I wrote lyrics for a show called “breathe” - a show that only kind of included my CF. As I gained life experience, I kept changing out lyrics, changing the plot entirely over time, and the title! I had been trying to get people to read the show since I was 16, but no one would. In their defense, no one knew that I had cystic fibrosis, nor did they view me as a writer. Why would they?
So, in 2015, I tackled my first mission. Remind people I’m a writer. I published my first children’s book Two Cents. This put me on the map. Telling people I had CF put me on the map again. I had emailed the CF Foundation just before transplant and told them that I wanted to publish Fall Risk, a script that was gathering dust on my computer. They encouraged me to fill out an impact grant. One of my best friends and producers, Nicole Dvorin, and I did just that! From my hospital bed! We were awarded the grant on the day of my wedding.
Fall Risk is somewhat autobiographical. It follows the journey of Gabriella Michaels, a cystic fibrosis patient who wants to be an actress. The timeline follows her through her lung transplant evaluation. There were two things that were very important to me. One, it had to be a comedy. I couldn’t watch another sad disease story. Two, it couldn’t be something that only CF patients relate to... I wanted the audience to leave the theater relating to someone in the show.
If there's one thing you want people to know about your fight with CF, what would it be?
Nicole Kohr: Trust yourself. Everyone will make you doubt yourself at some point. Don’t. Be proud of your decisions. You either made an educated guess based on the information you had, you pushed forward with little to no support, or you followed your heart. All three are valid reasons. Be proud and journey on! You will always know your body best.
What's something most people don't know about you?
Nicole Kohr: I’m obsessed with weird things - cows, McDonald's, noodles. I also did a special guest appearance on Spongebob Squarepants when I was little! That’s a silly fun fact that I always forget!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?