How My Priorities Change When My Lungs Hold Me Hostage

Like Bonnie and Clyde, columnist Nicole Kohr and her lungs have a complicated relationship

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by Nicole Kohr |

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The musical “Bonnie & Clyde” follows the infamous early 20th century crime duo through a series of murders and robberies, beginning with an innocent dream on Bonnie’s part. The two embarked on a romantic road trip that pitted them against society and those they loved. Clyde’s murder spree was triggered by abuse and his desire to live a financially secure life. Bonnie, a wannabe singer, was simply along for the ride, but was held hostage by her love for Clyde.

As a cystic fibrosis (CF) patient with dreams of fame and fortune, I felt drawn to this story. What happens when you’re tempted by fantasy but held captive by something out of your control? In my case, it feels like my lungs are holding me hostage.

For a time, I refused to be a hostage. I was given an expiration date at age 5 — that I would die by age 10 due to declining lung function — so I chose to live unlike a patient and against most medical advice. I avoided isolation by taking part in many community theater productions and performing arts classes. I went through periods of missed medications — not on purpose, but due to an intense rehearsal schedule. Overall, CF was not my priority.

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Unfortunately, like Bonnie and Clyde, passionately living life to the fullest pulled me closer to death. My lung function began to decline, and my lungs became hard to ignore. I experienced worsening and back-to-back respiratory infections, and my time between hospital stays grew shorter. Tuneups — two-week hospital stays meant for IV antibiotics — were no longer a quick and useful tool that allowed me to carry on in a spontaneous manner. They were a consequence, during which my expiration date became more of a reality. In short, I made my (hospital) bed. I had to lie in it.

As I aged, my scarred lungs demanded compliance and caution. Despite my continuous desire to throw caution to the wind, I dropped out of the theater arts world, a lifestyle that begged for endurance and healthy lungs. I declined invitations to social outings, mostly due to a lack of energy. I became obsessed with bloodwork results, portal messages, and cystic fibrosis-related research. Lastly, my needs swung from “you only live once” to oxygen dependency.

When I approached end-stage CF in 2019 and was being evaluated for my bilateral lung transplant, my stick-it-to-the-man mindset was gone. I officially became a hostage to my broken and weakening lungs. I was running on fumes to cater to their every need, and so was my family.

My lungs needed more antibiotics, stronger ones. They needed water, well over a gallon a day, and fresh air, even though it bred infections like Pseudomonas. I barely had enough energy and time to target the physical needs of my lungs, let alone my mental health, and my feelings weren’t the only thing that took a back seat.

Many parts of my body became neglected. My curly hair was always thrown up into a tangled bird’s nest because showers were exhausting. I strictly ate fast food and soda and deprived my skin, bones, and joints of quality nutrients. My feet were callused, and my dehydrated heart beat rapidly. The slew of stronger medications left my kidneys, liver, and pancreas begging for backup. My sinuses were packed with infection. I was also losing my hearing, but who cares if I’m deaf if I can’t breathe?

Friends would check in with trending videos about skin care, asking if I partook. I’d laugh into a weep, forgetting that people my age would care for things other than hemoptysis (coughing up blood) and carbon dioxide issues.

Now that I’m post-transplant, my priorities are different. Mental health and self-care are at the top of the list to ensure my endurance and tolerance. Nutrition related to my gastroparesis and diabetes is a battle I face all day. I prioritize hydration and exercise, two things that seemed impossible as a pre-transplant patient. Most notably, I found my way back to theater, this time as a writer.

Bonnie and Clyde fell victim to their situation, a rotating door of consequences that grew out of their control. Although my lungs had to take priority at one point, I’m thankful I had the opportunity and support to avoid an unfortunate fate. I still occasionally fall hostage to my lungs’ demands. Perhaps I should split the difference and allow my priorities to cater to both. Do you think my husband will agree to a long, romantic road trip?

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.


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