The weight-loss influencer shared an update from her ongoing battle with the rare disease
Lexi Reed is staying positive as she takes another step forward in her battle with Calciphylaxis.
“All smiles but also all nerves as I got my PICC line removed this week!,” the weight-loss influencer captioned an Instagram photo of her bruised arm, the site from where her PICC line was removed.
A PICC line — which stands for a peripherally inserted central catheter — uses a large vein in your arm to reach your chest. Reed had been receiving infusions via the PICC line as part of her battle with Calciphylaxis, a rare disorder where calcium accumulates in the small blood vessels of fat and skin tissues.
According to the Mayo Clinic, the disorder can cause kidney failure, as well as “blood clots, painful skin ulcers and may cause serious infections that can lead to death.”
Reed has said that dialysis — which she underwent after experiencing organ failure — may have caused her to develop the disorder.
“The hard painful knots that I was experiencing turned out to be calcium deposits that turned into open wounds on my body,” Reed shared. “I have multiple wounds that are open on my upper/inner thighs, back, stomach, shoulders, and have already had surgical debridement to get rid of the necrotic dead skin so I could heal faster.”
But now, Reed says she’s healing — and while “I still have multiple open wounds slowly healing that I’m dealing with at wound care…I feel it in my heart that I need to try this next step and keep trusting my gut, even if it scares me.”
Reed, 32, adds that for Calciphylaxis, “infusions are basically the only ‘treatments’ they give but my doctors have also told me they don’t know the side effects long term because they haven’t had patients on the infusions so long.”
In April, Reed shared that the infusions made her nauseous, and due to the disorder, she had to sleep sitting upright in a chair.
Now, she’s ready to take the next step in her healing journey, but admits she agonized over the decision to stop the infusions.
“This was a major decision … that I’ve went back and fourth with, and also shed multiple tears over due to all the unknowns. However, I finally feel like the time is right to stop infusions, and with that being said – this week was my last week.”
Her husband, Danny Reed, shared his support for his wife, commenting, “I know this was a tough decision but I think this will be the best next step. Love you babe always going to be here for you!”
Reed ended her post with gratitude for her supporters, writing, “Thank you all for constantly being here for me throughout this part of my journey and for all of the continued kind words & prayers. 🙏❤️ Time to keep moving forward!”