South Milwaukee mom on a race to find kidney donor after diagnosed with rare and deadly condition

SOUTH MILWAUKEE, Wis. (CBS 58) - A South Milwaukee mother is on a mission to find a kidney donor and a hospital willing to help her after being diagnosed with a rare and deadly condition. Nicole Webster is a mom, wife,  and dog lover, and though doctors have estimated she’s got a year left to live, it hasn’t broken her spirit.

“I want to have friends, I just want to enjoy and be happy and do fun things,” said Webster.

The 39-year-old has been on dialysis for the last five years. Her kidneys were removed after being diagnosed with Polycystic Kidney Disease. Shortly after, she was also diagnosed with a rare condition called Calciphylaxis, which is essentially a buildup of calcium in the veins.

“It’s a 60-80% mortality rate and a two-year life expectancy, and I was diagnosed a year ago,” added Webster.

Webster needs a live kidney donor and a hospital willing to move forward with the surgery so she can continue being there for her family, especially her two kids who also have PKD. Every attempt she’s made so far has returned with a denial letter, because she’s too high-risk.

“It makes me feel like it’s just a death sentence,” says Webster. “I feel like I’m closer to death every single time I get denied.”

“It does affect me in ways, I feel depressed, because I can’t really do anything,” said Webster’s husband, John Bloom.

With the pandemic, Bloom says getting to the right doctor hasn’t been easy either.

“Getting a doctor’s appointment for her has been hard to get in to even see if she can get a transplant,” he added.

It’s now a race against time. The Calciphylaxis mass in Webster’s body is growing and causing her pain. Webster says a kidney transplant would stop the Calciphylaxis, but not necessarily reverse it.

“They just can’t cut it out because there’s a very high risk of sepsis and people usually die of sepsis with my particular condition,"  Webster says.

Webster says she doesn’t take being able to live each day lightly, and regardless of her situation, she’s always thankful.

“I’ve written a few letters that need to be written and you know I’m making sure that everybody knows that I love them. I’m making sure that people know that they’re appreciated, and there’s never a phone call that doesn’t end with ‘I love you,’” she added.

Webster will visit a Minnesota hospital in August for another transplant center consultation. While she doesn't know the turnout, she feels hopeful. To help support Webster’s journey in finding a kidney donor click here.