Influencer Lexi Reed Dealing with 'Open Wounds and Severe Constant Pain' from 'Rare Condition'

The weight loss influencer says she was newly diagnosed with a rare and incurable kidney condition called calciphylaxis

Lexi Reed
Lexi Reed. Photo: Lexi Reed/Instagram

Lexi Reed is again back in the hospital as she continues to deal with the painful aftermath of her kidney failure.

The weight loss influencer, 31, shared on Instagram Monday night that she had to go back to the emergency room after issues with her blood levels.

"Been back here since Saturday when my labs said my blood count was 4.4 and to go to the ER," Reed said on her Instagram Story from her hospital bed. "They got it normal today but staying again tonight for a procedure in the morning before I can go home."

Doctors had to give her four blood transfusions to regulate her levels, Reed said, bringing her up to seven blood transfusions over the course of the year. "This is also my 3rd time being in the hospital this year," she added.

Reed said that in the now five months since her January kidney failure, her condition has only continued to decline.

"Sorry fam I've been meaning to post about what's going on but I've been getting worse not better unfortunately," she said.

Reed has been in and out of doctor's offices over the last few months to try and figure out why she has been unable to walk on her own and the cause of her ongoing stomach and leg pain. Doctors most recently thought she had calcinosis, a rare condition where "calcium buildups" form in and around joints like the elbows and knees, often after kidney failure.

RELATED VIDEO: Weight Loss Influencer Lexi Reed Hospitalized After Her 'Organs Started Failing'

But the treatments for calcinosis were unsuccessful, and Reed said Monday that two specialists have now diagnosed her with calciphylaxis, a very rare and serious 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 said that she has those "open wounds and severe constant pain all over my body."

Because calciphylaxis is so rare, Cleveland Clinic says, there is limited research on how best to treat it and the disease isn't considered "curable." But there are ways to manage it, with wound care, pain management with opioids, dialysis and treatments to regulate mineral levels in the body.

"It's a rare condition and I'm in for the long haul but ready to keep fighting," she said. "Thanks for all the love and prayers."

Related Articles