‘Me Ol’ Shampoo’: How My Health Has Affected My Hair

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by Nicole Kohr |

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Hair has always been a huge part of my identity. Sometimes, it was my way of communicating. Other times, it revealed my declining health. Despite the risks of it being cut too short or dyed the wrong color, my biggest fear was always losing my hair.  

Growing up

I’m multiracial, so I was born with curly locks. My mother had the same hair. She knew how to care for it. As I aged, aesthetics fell to the bottom of my to-do list. My lungs and stomach took priority, so sporting a rat’s nest on my head was a common occurrence. 

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My mom encouraged me to have fun with my hair. Most of my medications depleted my hair growth. As a result, I would avoid haircuts like the plague. I let it grow long like Moana until I was 12. My cousin’s friend, now a famous hairstylist, would straighten it during lengthy hospital stays. Mom and I even dabbled in chemical treatments — whatever made me feel like a normal teenage girl. 

Hair and CF / Cystic Fibrosis News Today / Scrapbook pages featuring photos of Nicole in the hospital with her hair done

Nicole during a “tuneup” at Robert Wood Johnson University Hospital in 2003. (Photo by Nicole Kohr)

Hair color

I didn’t have the energy to socialize, so in college I let my colorful hair do the talking. I dabbled in pink, blue, and green streaks. Just enough to show the world that I was quirky and fun without having to attend parties. My husband tells me my hair caught his attention. He liked the bubbly, blue-haired girl next door.

A lot of damage accrued from bleaching and dyeing my hair different colors for four years, but I tried to enjoy the experience without clinging to the possible consequences. 

Gastroparesis

In 2017, I worked up the courage to go to Supercuts. I felt ill, but I didn’t have the energy to care for myself. Mom encouraged me to get my hair done. I was worried one good comb through would leave me bald, but she painted a picture of a leisurely activity that won me over. 

My hairstylist took one look at my hair and said, “Girl, if you don’t take care of this, it’s going to fall out,” as if my hair straightening were solely to blame. Friends, family, and health professionals made similar comments. I don’t believe they meant any harm, but hair can be a delicate subject for chronically ill patients. It certainly took me out a few times. 

Hair and CF / Cystic Fibrosis News Today / Nicole with shorter hair

Nicole with shorter hair in 2017. (Courtesy of Nicole Kohr)

I was finally diagnosed with gastroparesis around Christmas that same year. My body wasn’t absorbing enough nutrients, explaining the unhealthy amount of hair left on my pillow each morning. My hair slowly grew back over the next few years, especially after my feeding tube was placed. It’s funny how emotional one becomes upon seeing their incoming baby hair. I never took it for granted again.

Transplant

I received a double-lung transplant in June 2019. One of my anti-rejection medications, tacrolimus, caused my hair to thin and fall out. I was less upset about the hair loss. At least my lungs worked! I documented my hair loss journey on my Instagram story. It was the shortest my hair has ever been, but what are a few bald spots between friends? 

To this day, I ask myself: To curl, or not to curl? To dye, or not to dye? Which shampoo is better for immune-suppressed hair? I’d be rich if I had a penny for every time a beauty guru gave me hair care advice. I’m just happy I’ve got hair on my head, and none in my bed.  

In the 1968 musical film “Chitty Chitty Bang Bang,” Dick Van Dyke sang “Me Ol’ Bamboo.” The phrase always stuck with me. I sing a version of it in the shower every morning, subconsciously praying my hair doesn’t fall out in the process.

“Me ol’ shampoo. Me ol’ shampoo. You’d better never bother with me ol’ shampoo!” 

Hair and CF / Cystic Fibrosis News Today / Nicole sits on a hospital bed. Her hair is straight and down her back

Nicole with longer hair in 2019. (Courtesy of Nicole Kohr)

Check back every Thursday to read more of 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

JOSE avatar

JOSE

Hello, I have been in hair care business for 15 years and I have studied about hair enough. My son has CF. I hope I can give you a good advice.
Two points, 1 is the good look-feel happy and 2 is the healthy hair

At this point I think you have to focus first in the second point, bleach process is so damage for your hair, dye color with out bleach is better option. However at this point your hair needs you, if you can, leave it natural for some time until your health is better. Your problem is not on your hair, it is on the scalp where the hair is made (inside follicle), it is normal for the medicine. First get hair vitamins in amazon, second get a professional shampoo to help your hair to get thicker you can mix this shampoo with a professional shampoo as hydration treatment (first the thicker 3 min and later the hydration shampoo-treatment) Try to leave it natural, after get better do professional hair color (natural colors better), try to avoid bleach.

About the 1 point of good looking try to find new looks that no need bleach or very damage color process

My best wishes to you if you have more questions, please let me know

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