Making Friends With Latex Predators

Nicole Kohr avatar

by Nicole Kohr |

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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. C diagnosed me with cystic fibrosis (CF). The next day, her diagnosis was confirmed by a sweat test, which measures the amount of chloride in sweat. All I remember are the many ER visits that followed, for which Dr. C was on call.

“Long time no see, girly!” she’d yell to me from across the ER as nurses wheeled me into my isolation room.

I was hospitalized immediately after my diagnosis. I had never been in the hospital for more than a few hours, so I was terrified. My mom always did an excellent job distracting me, delaying the anxiety monster that would inevitably consume my body. The only visual cues 5-year-old me required to have a mental breakdown were a white coat and latex gloves. A latex predator if you will. Luckily, my pediatric pulmonologist from ages 5 to 9, a different Dr. C, was the kindest women ever!

Pulmozyme and prayer,” she’d whisper as she held my IV-accessed hand.

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Clinical Anxiety of an Unexpected Type

She retired and my care was transferred to Dr. S, my pediatric pulmonologist from ages 9 through 22. We have an amazing relationship, but the stress of my declining health atop the pressure to enjoy my childhood led to a lot of disagreements back then. Everyone would poke fun at Dr. S, assuming he valued treatment plans over personal lives. The truth is he was and is a brilliant diagnostician. His strict, ground-breaking regimens such as unique IV antibiotic combinations were a huge part of why my original lungs lasted as long as they did. Not to mention, he was one of the only doctors who gave “day passes” to hospital-bound CF patients.

“Keep shining that thousand-watt smile … or else!” he’d proclaim with a fist bump.

At age 22, I transferred to the adult cystic fibrosis team. Dr. S introduced me to the two-woman team who would head up my care through age 28, Dr. H and Dr. J. Please imagine Wonder Woman and Superwoman attending medical school and then pairing up to fight crime. That’s them, a force to be reckoned with, with equal amounts of chaos in the background … mostly because they head up the ICU. I can say with complete confidence that I wouldn’t have made it to my wedding or my transplant without their continuous advocacy and intervention. Everything that they did was above and beyond, and they were always a text message away.

A video appointment between Nicole and Dr. D. His foot is in the frame, showing off his cool flower socks.

Dr. D showing off his socks in a virtual clinic with Nicole in April 2021. (Photo by Nicole Kohr)

In 2019, age 26, doctors evaluated me for transplant and introduced me to my first transplant pulmonologist, Dr. D. He was tall, funny, and had cool socks. I did not, however, enjoy one of our first conversations. He said his piece, reminding me that my need for a bilateral lung transplant was urgent and that my wedding, scheduled for one month later, was not ideal. He presented me with a very difficult decision to make. However, Dr. D, Dr. H, and Dr. J coordinated and made it so that I was wedding and transplant ready. I still make Dr. D show me his socks of the day.

My mother, husband, and I moved from New Jersey to North Carolina in January 2021. The intention was never to leave Dr. D, Dr. H, and Dr. J, but a 16-hour round trip for 45-minute clinic appointments didn’t sound ideal. My care teams connected me with the Duke Health team. Dr. M is my pulmonologist for transplant and cystic fibrosis. He’s a sharp dresser, very knowledgeable, and he laughs at almost everything I say. We’ve already hosted an online event together for the Cystic Fibrosis Foundation, so I’d argue we’re best friends.

I was lucky enough to have amazing doctors throughout my life. Some focus on your treatment plan, others aim to balance physical and mental health. Regardless, you know your body better than anyone else. Find someone who advocates for all parts of you, not just the organ(s) in need of service. These kinds of doctors exist. (Minus one resident who told me I should stop taking my medication and thrive solely on orange juice, but we don’t talk about that.)

In “Mean Girls the Musical,” they define the “Apex Predator” as the food chain alpha. I feared doctors when I was little, but sometimes they sneak you a snack from the cafeteria, making it all worth it … right? With that said, I urge you to make room at your table for the latex predator. You never know when they might sneak into your heart …

… during surgery. Bad joke.

Check back on Thursdays to read more about my story.

***

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Comments

Gisele F Lapointe avatar

Gisele F Lapointe

I'am happy for any and all CF patients who have the chance to find the perfect team.
I lost my daughter to CF after a lobe transplant at age 43. She was the product of two mutations. No doubt she would be alive today if she had had the chance of having a full lung transplant. Alas, it was not meant to be. Stay safe everyone!

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