Learning to Embrace My Poor Unfortunate Holes
It’s a motto that I live by, as well as the opening number of my original musical comedy about a girl with cystic fibrosis, “Fall Risk.” Cystic fibrosis (CF) patients have an unfortunate amount of mucus that overwhelms our entire bodies. This leads to excessive sweating, stinky breath, a contagious-sounding cough, the occasional need for surgical implants like feeding tubes — you know, everything a teenager desires.
I’m grateful to announce that I have 10 scars from different lifesaving operations … but I didn’t always feel grateful.
Hole 1
In 2009 10th-grade me had excessive levels of energy, enough to fool all of my friends and colleagues into believing that I was healthy. Secretly, though, I’d make frequent trips to private bathroom stalls to change out of my sweaty shirt and tend to the portable IV antibiotic conveniently hidden in my bra. Then, I’d hack up a lung in a private stall. I even kept a spare pair of shoes in my backpack so that no one could identify me by my footwear. Needless to say, CF embarrassed me.
The weeks between “tune-ups,” two-week hospital stays that run the course of antibiotics, grew shorter. My veins had been used and abused since I was diagnosed with CF at 5, so even a basic IV access wouldn’t work for more than an hour. At one point, nurses resorted to 100 blood sugar sticks just to get a blood panel. My doctors told me that I needed a port, a semi-permanent medical device that’s placed near a major vein for long-term IV use.
Tears flowed from my eyes as I looked back at my mother upon receiving the news. In my day, a port placement meant that you were out of options, that your veins got so shot that it’s hard to administer IV antibiotics. But I’d soon learn the port was the beginning of many new options. It was the best medical device I’ve ever had, yet all that teenage me saw was a huge device protruding from her chest with a needle sticking out of it. Talk about “hot girl summer.” That’s not the part of my chest that wanted attention.
Hole 2
In 2016 doctors diagnosed me with gastroparesis, a condition that affects the motility of your digestive tract. No matter what I ate, I couldn’t surpass my 82-pound weight. My doctors told me that I needed a feeding tube. Once again, I disappointed myself.
“Why couldn’t you just eat more? Now you have another device that you have to hide.”
I had been dating my college boyfriend for three years. (Now he’s my husband.) He was gentlemanly and supportive of the situation, but I felt gross. My self-esteem was fragile. A large faucet-like tube protruding from my stomach didn’t help the situation. Luckily, I was able to change it to a less-visible “button” tube later on. Still, it was not ideal for bikini season.
Holes 3 through 10
A lot happened during my double-lung transplant in June 2019. I had three chest drains on my left side and three on my right side, which helps unwanted fluid and air escape. I had an incision in my groin from the ECMO machine, a bypass device used to pump and oxygenate blood. I also had a central venous catheter placed in my neck for additional IV infusion. These were the least “unfortunate” holes. These holes saved my life. These holes left massive scars that make me smile every morning when I get dressed.
I’m grateful to announce that I have 10 scars from different lifesaving operations. I have a scar from my port that enabled me to receive antibiotics for 11 years. I have a scar from my feeding tube that helped me maintain a steady amount of weight during my 20s. I have scars from my transplant, which helped me live long enough to write this column. It has taken me 28 years to appreciate my scars.
Ursula from Disney’s “The Little Mermaid” encouraged Ariel to use body language and embrace the “Poor Unfortunate Souls.” I say embrace your body and all of its scars, reader. Not every hole is unfortunate.
Nicole with her central venous catheter in 2019. (Photo by Nicole Kohr)
Check back weekly on Thursdays to read more about my story.
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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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