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One day…at a time
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Nikki Fraschieri launches campaign to locate kidney donor
By Carol McIntire
Nikki Fraschieri of Minerva lives life one day a time.
The 29-year-old says that’s the only option she has as she awaits a kidney transplant to replace one of the two failing kidneys in her body.
“It’s that simple,” she said during a phone interview, which replaced an in-person visit due to the COVID-19 pandemic. “I’ve been active on the kidney transplant list since April 4, 2019, but because of my blood type, I’m told the average wait is five-to-seven years,” she said.
The former Nikki Cvengross from Carrollton has Type O blood, which means she can only accept a kidney from a person with Type O negative blood.
“That makes it more difficult than for people with Type A or B blood,” she noted.
Her story began after she graduated from Carrollton High School in 2009 and attended Buckeye Career Center where she completed the medical assisting program.
She enrolled at the Kent State University campus at East Liverpool in the occupational therapy assistant program.
“As part of the program at Kent, we were always taking each other’s blood pressure,” she explained. “Mine was elevated, but I’d never had any issues before, so I thought it was just because of school and boards (state testing) that were coming up.”
Following graduation in 2016, she made an appointment with family physician Dr. Matthew Inman at Mercy Health Center of Carrollton.
“He did blood work and sent it away. That’s when I found out my kidneys were only functioning at 30 percent,” Nikki stated.
Early in 2017, following a biopsy, she was diagnosed with ANCA vasculitis, an autoimmune disease affecting small blood vessels in the body. It is caused by autoantibodies called ANCAs, or Anti-Neutrophilic Cytoplasmic Autoantibodies. ANCAs target and attack a certain kind of white blood cells called neutrophils. According to the ANCA vasculitis website, the disease affects about 1 in 50,000 people and is more prevalent in middle-age Caucasian men and women.
In Nikki’s case, the autoantibodies attacked the capillaries in the glomeruli, which are the filtering units in the kidneys, causing them to swell, impeding kidney function and causing kidney failure.
At that point, and even when she married James Fraschieri in 2018, no one was talking about a kidney transplant.
“I was told most people go their entire life without having to have a transplant,” she acknowledged.
Two months after her wedding, in July 2018, she was hospitalized for a week with high potassium levels. In October of that year, her kidney function had diminished to five percent and she began kidney dialysis.
“The disease progressed very quickly in me,” she explained. “At first, I traveled three days a week to a clinic in Canton for dialysis.”
Now she does dialysis five nights a week at home, which is no easy task. Nikki considers herself “one of the lucky ones” because it takes seven and one-half hours to do the dialysis.
“For some people, it takes 12-to-14-hours to do dialysis at home,” she noted. “I can’t sleep while a machine is pulling stuff out of a tube in my stomach and putting in back in me so my sleep patterns are all mixed up.”Despite all this, Nikki continues to work as an occupational therapist assistant (PRN) in area nursing homes and part-time of Jimmy’s Backyard BBQ in Carrollton.
“People tell me I’m a tough cookie,” she said. “I tell them they’ve never seen me crumble.”
She is quick to express appreciation to all her employers for their understanding of the situation.
“I am thankful they have all been so understanding. I can’t say enough nice things about all of them. There are a lot of doctor’s appointments and, in the early stages, there were many days I just couldn’t go to work.”
With the quick progression of the disease, Nikki knew she couldn’t just sit around for five-to-seven years to find a donor. She began a campaign to find a donor on her own. She’s made t-shirts, hoodies, bracelets and even decals for family vehicles advertising her need for a kidney. A poker-run and car show fundraiser were held and signs printed and erected in the yards of family members, most noticeably, her mom’s yard on SR 43 between Carrollton and Malvern.
“I’ve done everything I can think of to try to find a donor,” Nikki acknowledged, the frustration evident in her voice. “I’m at my wits end.”
She refuses to allow the situation to pull her down, so she continues to believe that one day, things will get better.
“I just want to live my life unhooked from a machine,” she stated. “I’m a very active person. I love to camp, hike, fish, go swimming and kayaking. With dialysis, there’s a high risk of infection, so I can’t do many of the things I love. I live for the day when I can do them once again.”
Nikki continues to be active and focus on locating a donor, while juggling home life, work and dialysis. She participated in a photo shoot in March for Kidney Disease Awareness Month and has a Facebook page, A Kidney for Nikki Fraschieri, and an account is set up at Consumers National Bank.
Anyone with Type O+ or O- blood who would like to be tested to become a donor can email Nikki at AKidneyforNikki@gmail.com.zzz
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