Lexi Reed Calciphylaxis Diagnosis

Regardless of how drawn-out and excruciating her recovery continues to be, Lexi Reed says she won’t give up on her health.

She was hospitalized last year after being given the rare diagnosis of calciphylaxis, which rendered her unable to move or stand by herself for months.

The weight loss influencer revealed on Monday how terrified she felt after learning she had calciphylaxis in the agonizing days following renal failure. The 31-year-old outlined the reality of her uncommon condition by posting a picture on Instagram that showed the scars on her stomach from her healed wounds.

“Calciphylaxis is a rare disease that I had never even heard of before it completely rocked my universe.

Reed captioned the picture, “A disease so uncommon the doctors had to look it up before they tried to cure me. “A illness that left me with dead, necrotic skin on my thighs and shoulders, creating painful wounds.”

She continued, “A disease that left me in tears every day and wondering how strong I really was to keep going.” When the infection rate was so high and the mortality rate for the disease was so high (45-80%), I was told that I would be lucky to survive for six to twelve months.

A disease that terrified me to my core every single day that I may not wake up, or see my husband, or loved ones, and that every moment could be my last.”

Following a month-long hospitalization during which she was on a ventilator and in a medically-induced coma as her organs began to fail, Reed first disclosed that she was unable to move or stand on her own in February 2022.

She disclosed that she had been given a calciphylaxis diagnosis a few months later.

According to Cleveland Clinic, calciphylaxis is a disease where calcium deposits in blood vessels obstruct blood flow to the skin. Open wounds and possibly fatal infections can result from it.

In order to allow her wounds to recover, Reed has since undergone a number of debridement surgeries to remove damaged tissue.

“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 revealed on her Instagram Story that she has been working with various wound care experts to heal for the past year.

“My doctor initially thought the painful bumps I had on my stomach were just a knot, but they continued spreading and also expanded to my legs,” Reed said. “I continued going to the doctor crying in pain and receiving nothing but advise to take Tylenol, until I was hospitalized after seeing another MD who said the bumps weren’t normal.”

Reed claimed that while she was in the hospital, physicians argued over how to diagnose her as the bumps began to turn black.

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.

Back in September, Reed celebrated a huge milestone in her recovery, revealing on Instagram that she was finally able to walk again after spending the majority of the year facing mobility problems.

Her post included a clip of her slowly walking up and down the sidewalk by herself, admitting that 2022 was “the hardest year of my life.”

“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.”

She continued, “The past nine months have been unknown while I’ve needed a wheelchair and assistance with all of my everyday activities. “After finally making it to the stage where I felt like I was living rather than just surviving, I had to watch from the sidelines of my own life.

I experienced the same sense of helplessness as when I weighed 485 pounds, but I didn’t give up on myself.”

Reed concluded, “Fall down seven times and stand up eight. My posture isn’t perfect, I’ve fallen numerous times, can’t walk miles as I used to, and I might not be as strong as I used to be.

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Calciphylaxis is a serious, uncommon disease in which calcium accumulates in small blood vessels of the fat and skin tissues.

Calciphylaxis causes blood clots, and painful skin ulcers and may cause serious infections that can lead to death. People who have calciphylaxis usually have kidney failure and are on dialysis or have had a kidney transplant. The condition can also occur in people without kidney disease.

Symptoms

Signs and symptoms of calciphylaxis include:

• Large purple net-like patterns on the skin
• Deep, very painful lumps that ulcerate creating open sores with a black-brown crust that fails to heal — typically in skin areas with high-fat content, such as the stomach and thigh, although they can occur anywhere
• Infections from injuries that don’t heal

Causes Of Calciphylaxis

Although the precise cause of calciphylaxis is unknown, recent research has shown that the majority of those who suffer from the condition have abnormal blood-clotting factors. Your blood contains substances called blood-clotting factors that work to halt bleeding. Small blood clots may develop more frequently than usual as a result of these anomalies.

Additionally, those who suffer from calciphylaxis have an imbalanced calcium metabolism. This results in calcium being deposited in the arteries’ smallest sections (arterioles), where it ultimately causes blood clots to form. Blood clots may deny skin and fat cells oxygen and nutrition.