Lexi Reed Celebrates One Year Since Last Infusion for Calciphylaxis: 'So Much Pain'

The fitness influencer hit a milestone in her recovery from the rare disease

• Lexi Reed — aka, @fatgirlfedup on Instagram — shared a major milestone in her recovery from the rare disease calciphylaxis

• She said it’s been a year since her last infusion for the disease, part of a recovery process that lasted for longer than a year

• “I wish i could go back and hug myself,” she says, reflecting on her life a year ago

Fitness influencer Lexi Reed celebrated a major milestone in her recovery from calciphylaxis, sharing that it had been one year since she’d had her last infusion for the disease.

“ONE YEAR TODAY SINCE MY LAST INFUSION 🎉💪,” she began the caption on her Instagram post, where she showed off the spot on her arm where she would have infusions to treat her disease.

Calciphylaxis is a rare and serious condition where calcium builds up in blood vessels and blocks blood flow to the skin, according to Cleveland Clinic. It can cause potentially deadly infections — and is “very painful.”

Reed, 33, was diagnosed with the condition after suffering from severe kidney failure, which landed her in a medically induced coma. After being diagnosed with calciphylaxis, she underwent 59 weeks of treatment for the rare disorder.

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And as the Mayo Clinic points out, “Typically, the outlook for people with calciphylaxis isn't hopeful” and the infusion treatment includes “a medication called sodium thiosulfate [that] can decrease calcium buildup in the arterioles. It's given intravenously three times a week.”

But as Reed pointed out in her caption, “Honestly, so much has changed in a year & the decision to personally stop infusions was one of the hardest, most terrifying decisions I've ever had to make in my life. At the time, I still had wounds left, but since my Calciphylaxis is so rare, the doctors couldn't advise me on the right time to stop infusions, so they left it up to me.”

Last year, she shared that apart from three small wounds, she was declared by doctors to be in remission — and rang the bell in the hospital to celebrate the end of her treatment.

As for why she chose to stop getting infusions, Reed said,  "Every time i went, i was getting sick & what had started as a few weeks of infusions had had turned into over a year. I felt like my body needed a break, so I trusted myself & a leap of faith.”

Related: Lexi Reed Celebrates Non-Scale Victory, Says Her Hair Is 'Coming Back' After Loss from Calciphylaxis

She thanked her husband Danny for being “there by my side every step of the way” — but admitted that “after going through so much pain/healing & unknowns - we faced our biggest decision yet while fearing if we chose wrong the wounds would come back.”

Instead, her wounds healed, and she was able to return the gym to restart her fitness journey, which had been derailed by calciphylaxis.

“Im so thankful my last infusion was a year ago & that life has gotten so much better!” said Reed, who originally started her weight loss journey at 485 lbs. before calciphylaxis. She first dropped to under 200 lbs. on Christmas Day of 2023. Then, in February, she announced she had hit a goal weight of 185 lbs. after regaining 90 lbs. following her Calciphylaxis diagnosis.

Related: Lexi Reed Wears a Pink Shirt to the Gym for the First Time: 'At 485 Lbs. All I Wanted to Do Was Wear Black' 

“I’m trying not to just get on here and, like, scream and shout because I’m just so excited,” she said in a post on her Feb. 26 Instagram Stories. “It’s just crazy because at 485 lbs., I would have been happy being 299 lbs.”

But now, as she says in her latest post, “I wish i could go back and hug myself to let her know it gets better. Can't wait to celebrate a year of remission in August & thank you all for the constant prayers, love & support .”❤️”

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