Lexi Reed is down 100 pounds and celebrating her continued remission from calciphylaxis.
The fitness influencer, who’d lost more than 300 pounds eight years ago, gained about 90 pounds since last year after being diagnosed with calciphylaxis. The rare disease, she wrote in a post on Mar. 6, 2024, “completely turned my life upside down & made me question how strong that I truly was.”
The illness made Reed feel the way she did before beginning her weight loss journey. “Basically, all of the things I wasn’t able to do because of my weight before, now I wasn’t able to do because I was sick,” Reed tells TODAY.com.
Calciphylaxis is a rare disease that causes calcium deposits to build up in the blood vessels of fat and tissue, according to the Mayo Clinic.
But now, Reed is celebrating more than weight loss following months of immobility and pain. Her newest post is about “taking back the fight to live, healing & refusing to take life for granted,” she wrote.
Reed, 33, has previously opened up about her journey with the condition, which she said left her with more than 30 open wounds and in severe pain. She developed it as a complication from dialysis treatment, which followed an unknown illness that caused her organs to fail, including her kidneys.
“(It’s) a disease so rare the doctors had to look it up before they could try to treat me,” Reed wrote in another post. “(It’s) a disease that caused me to have dead necrotic skin that formed excruciating wounds from my thighs to my shoulders & left behind hard calcium deposits that could reopen in the future….”
After rounds of IV treatments, surgical debridement, infusion, transfusions, hair loss and weight gain, Reed celebrated her remission in March 2023. By then, all of her wounds had closed.
“I remember last year when I was unable to walk, wondering if I’d ever be able to walk into the gym on my own again,” Reed posted. “I remember wishing i was able to move my body & just trying to survive the pain. So much has changed but I never gave up on trying to get back to working on my health despite life happening.”
These days, Reed is regularly hitting the gym again. She eased her way in and focused mostly on cardio, “but that doesn’t mean I forgot completely about weights or how much stronger that I’ve gotten,” she wrote in one caption.
In most of her posts since remission, Reed mentions using the rowing machine, walking on the treadmill and using the stair climber. She also documented the difficulty she faced doing moves including leg raises on the captain’s chair, but she kept at it and eventually mastered it again a few months later.
Her time away from her regular routine has left her muscles weaker than they were before, particularly in one of her legs. It resulted in balance issues that led to nine falls in the past year. But after dedicating time to rebuilding its strength Reed can balance on it without it giving out. “It finally got stronger. I felt like it was more capable,” Reed tells TODAY.com.
Reed’s not quite back to where she was before her diagnosis, but she’s optimistic. “We all start somewhere & just because we face obstacles and don’t succeed the first time, it doesn’t mean that we failed unless we never try again,” Reed wrote. She’s working up to lifting weights again and hopes to be able to hike with her husband soon, she says.
Reed also credits her nutrition for her recent weight loss. While she was hospitalized, she had trouble keeping food down. “I wasn’t focused on what I was eating,” Reed tells TODAY.com. “I was just trying to make myself eat because I was in so much pain. I literally didn’t want to move.”
Healthy eating, she admits, was less of a priority. But now Reed is able to stand long enough to prepare meals for herself and she’s back to high-protein meals that include salmon, turkey burgers, asparagus, broccoli and cottage cheese.
Reed began posting about her weight loss journey alongside her husband, Danny, in 2016 as part of a New Year’s resolution, TODAY.com previously reported. Reed went from 485 pounds to 173 pounds in almost two years.
Since, her account has amassed more than 1 million followers and she’s continued to share her weight loss journey online which includes her gym routine and her meals.
These updates also included details about her 90-pound regain following her diagnosis and the mental fortitude it took to lose the weight. “This is a reminder that no matter the setbacks you face in life, it’s never too late to start over & keep going,” she wrote in a caption.
In another post, she celebrated being able to walk along the trail near the home she shares with her husband, something she couldn’t do a year ago due to the pain she was in.
Reed acknowledges that she's worried she'll become ill again because she still has a number of calcium deposits in her body, but she and her doctors are monitoring her calcium levels. "You know I've seen where people who have the same condition have had it come back," says Reed, "which is scary." But she insists that her fears won't keep her from living her life.
Reed says she’s lucky to have survived. Complications associated with calciphylaxis include pain, non-healing wounds, infection and death due to organ failure and infection, per the Mayo Clinic.
“(It’s) 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,” Reed wrote in one post. “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. ❤️"