My Mane Event

By Sasha Couch

June 12, 2020

Women have standards of beauty thrust upon us from the time we leave the womb. As we get older, they form the foundation of what we’re proud or embarrassed to show the world—even if we know it’s poppycock. For women living with chronic kidney disease (CKD), feminine confidence can be a formidable foe. But I’m here to tell my fellow CKD sisters that we’re strong warriors, and despite all the pesky physical changes and challenges we go through that are beyond our control, we can “look good and feel good” too.

No two females living with CKD experience the same things or experience them identically. Physical changes vary: discolored skin, weight gain or loss, thinning skin, and my personal favorite, hair loss, are just a few. I’ve experienced many of the aforementioned side effects
(I have more than my share of scars and stretchy pants!) but if a luxurious mane of hair gives us confidence to roar, for many of my dialysis and post-transplant years, I was quietly meowing in my “hairy” situation.

When I started dialysis at age 40, I had a head full of thick, long hair. Though a tomboy, I certainly noticed when it started to fall out less than a year later. Just a few strands in the shower initially, before long it was falling out in clumps. I tried everything suggested to me: vitamins/supplements, specific foods, different shampoos—but “renal life” is a delicate balance of lifestyle, foods, and medications. Iron, zinc, and protein may be low because of a deficiency or because they must be kept low. In turn, our bodies become a canvas for CKD, the unpredictable painter.

You’ll be singing, “I Feel Pretty” in no time.

But instead of sulking, I vowed to improve the situation. So, I chopped it all off and went short and sassy, albeit awkward. No more long showers laboring with deep conditioners or post-shower styling, just wash and go, easy-peasy. A successful temporary fix until the awkward “growing back” phase, which lasted more than a year.
And though I powered through to a cute bob, hair loss wasn’t finished with me.

Then came transplant time! With this gift came a new “renal life.” Life on dialysis was traded for a permanent life on immunosuppressant drugs. The first few months were spent adjusting, but within three months I noticed something familiar—hair falling out in clumps. I could’ve donated a wig to Locks of Love with the copious amount lost. The joy of my new organs (oh, I got a twofer, a kidney and a pancreas) overshadowed any other concerns, so I assumed it would level out once I was accustomed to my new regimen. But as the months passed, clumps of hair falling out progressed to noticeable empty patches, which taught me how to play creative games like “hide the bald spots!”

For months I was healing swimmingly without any issues. But the toppling tresses remained. Do I start wearing a wig? Could be fun. Make hats my new fashion statement? I own a ton of baseball caps and beanies. But they were just band-aids.

So, I did my research and talked to my doctor about one medication we could safely switch to fix my “dirty little secret.” He was fine making changes that would likely stop my hair from falling out but warned it might make hair appear where I didn’t want it. Women of a certain age know that a wayward hair popping up in a random spot can be a harrowing reality. But I said, “Let’s do it!” And promptly bought a good pair of tweezers.

Gradually, less hair fell out. My labs remained stellar and no other changes occurred. A few random hairs sprouted up where they weren’t wanted, but I was armed and ready. And while my hair doesn’t define my confidence and it’s not as plentiful as it once was, I’m happy to still have my locks while I still naturally should. As a successful partnership with my new organs blossomed, a renewed productive relationship with my hair follicles did too. I like my current “do” and only use headwear to represent my teams and complement cute outfits.

Kidney disease impacts you physically, but also emotionally, psychologically and mentally. And while men deal with all the issues women do, including feeling blue about changes in their appearance, let’s face it, women’s appearances are a different animal.

It’s easy to think you’ll never look good again or feel comfortable in your own skin. But you must approach unexpected physical setbacks like we true renal warriors approach this life-threatening illness every day. Find your inner strength and remember these unexpected trials are just that, setbacks. Trust this confident, hirsute warrior when I say you’ll be singing, “I Feel Pretty” in no time.

Sasha Couch is an East Coast native living in Los Angeles for over 20 years. She has a BA in International Relations from The University of Pennsylvania and works as a technical writer. Sasha received a kidney and pancreas transplant in 2017. She delights most in her volunteer endeavors, notably working with organizations helping the homeless like the Culver-Palms Burrito Project.