Lexi Reed shows off the scars on her stomach from her healed calciphylaxis wounds.Photo: Lexi Reed/Instagram
Lexi Reedsays she’s not giving up on her health no matter how long and painful her recovery continues to be.
On Monday, the weight loss influencer opened up about how scared she was after being diagnosed with calciphylaxis in thepainful aftermath of her kidney failure. The 31-year-old posted a photo onInstagramshowing the scars on her stomach from her healed wounds, detailing the reality of her rare condition.
“Calciphylaxis — a rare disease I’d never heard of until it completely turned my world upside down. A disease so rare the doctors had to look it up before they could try to treat me,” Reed captioned the photo. “A disease that caused me to have dead necrotic skin that formed excruciating wounds from my thighs to my shoulders.”
“A disease that left me in tears daily and questioning how strong that I actually was to keep going,” she continued. “A disease that I was told had a high mortality rate of 45-80% + I’d be lucky if I lived 6 months to a year when the infection rate was so high — that most didn’t. A disease that terrified me to my core every single day that I may not wake up, or see my husband, loved ones, and that every moment could be my last.”
In February 2022, Reed first announced that she was unable to walk or stand on her own following a month-long hospital stay where she wason a ventilator in a medically-induced coma after her organs started to fail.
PHOTO: Lexi Reed/InstagramPHOTO: Lexi Reed/InstagramPHOTO: Lexi Reed/Instagram
Months later she revealed that she was diagnosed with calciphylaxis, a condition where calcium builds up in blood vessels and blocks blood flow to the skin,according to Cleveland Clinic. It can lead to open wounds and potentially deadly infections. Reed has since had a number of debridement surgeries to remove damaged tissue so her wounds can heal.
“Every scar is proof that I’ve been fighting for my life and against all odds - but this is healing & I’m not giving up no matter what calciphylaxis throws at me.❤️” Reed ended her post.
The influencer said on her Instagram Story that over the past year she’s been working with several wound care specialists in order to heal.
“I noticed painful bumps on my stomach at first and my MD said it was probably just a knot but they kept spreading and also spread to my legs,” Reed explained. “I kept going to the doctor crying in pain and getting told nothing and to take tylenol — until I was hospitalized after seeing another MD who said the bumps weren’t normal.”
Reed said the bumps started to turn black and while she was in the hospital, doctors went back and forth trying to figure out how to diagnose her. It wasn’t until a nephrologist — a doctor specializing in kidney problems — stepped in that she was told it was early stages of calciphylaxis.
“I’m just so grateful they did finally diagnose me correctly or things could have been totally different,” she wrote.
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“After spending three weeks in the hospital at the beginning of this year I wasn’t able to walk when I was released and felt defeated/devastated,” Reed wrote at the time. “The doctors weren’t sure why but I could no longer lift my right leg or walk on my own despite tests and with my other health problems my mobility wasn’t the highest priority at the moment.”
“The past 9 months have been unknown while I’ve had to use a wheelchair and have assistance with all my daily activities,” she continued. “I’ve had to sit on the sidelines of my own life after I had finally made it to the center stage where I felt like I was living not just existing. Once again I felt trapped like I had been at 485lbs and refused to give up on myself.”
“My posture isn’t perfect, I’ve fallen multiple times, can’t walk miles like I used too & I may not be as strong as I used to - but fall down seven times and stand up eight,” Reed ended.
source: people.com
