Michele Jansen’s voice is her instrument.
For decades, the Minneapolis resident has used her well-modulated and expressive voice to support herself and her family.
As general manager at Minneapolis jazz and traffic radio station KBEM (88.5 FM), Jansen, 59, regularly hosts on-air shifts. She’s also been a freelance audio artist, voicing commercials and narrating scores of projects, from technical reports for 3M to the audio tour at the American Swedish Institute in Minneapolis.
Now she’s raising her voice in an effort to save her life and help others like her.
“I have the most common life-threatening genetic disease that no one knows about,” she said.
Jansen lives with polycystic kidney disease (PKD), which causes cysts to grow in the kidneys and leads to kidney failure. For the past three years, she has been on dialysis and is at the top of the list for a kidney transplant.
“A kidney should be the size of a fist,” she said. “Mine are like footballs.”
On Sept. 16, Jansen will host the Twin Cities Walk for PKD at the Normandale Bandshell in Bloomington. The annual event raises funds for research and advocacy for those with the disease.
“The first year I attended the walk, I was feeling fine and, honestly, I didn’t want to be around other people with this chronic illness who are at a more advanced stage,” she said. “You see your future and it isn’t pretty.”
Since then, she has volunteered to organize the event and be its voice. “We need research to find more ways to treat PKD or find a cure,” she said.
Being part of the walk has been helpful for Jansen, who said she “called in a few favors” for this year’s event. “It’s a fun day, and we can promise some fantastic live jazz from local musicians.”
Even before Jansen was diagnosed with PKD at age 24, the disease had shaped her. Her mother died of complications of PKD when she was 46 and Jansen was just 6.
“In one of the few pictures I have of us together, we’re both sleeping. My memories of my mother are fuzzy, but I remember her always being tired,” Jansen recalled.
Parents with PKD have a 50 percent chance of passing on the disease. One of Jansen’s four siblings also has it; her middle brother had a kidney transplant, and both of his children have PKD.
“We say we lost the lottery,” she said. “It’s a weird disease with a range of symptoms and prognoses. My brother’s kidneys stopped functioning in his mid-40s; mine were OK until my mid-50s.”
While Jansen’s two adult children have not been diagnosed with PKD, her disease has progressed and is taking a greater toll.
“I have more bad days now, when I have to push myself,” she said.
Last year, she got the call she’d long awaited — she’d been matched for a donor kidney. She was at the hospital, prepped for surgery, when her doctors crushed her with the news that the kidney was not medically sound enough to transplant.
Since then, she has set up a blog in hopes of locating a living donor.
“In order to survive, someone has to die or give up an organ, something I could never repay,” she said. “It’s the ultimate gift.
“I can never be worthy of a gift like that, but I can work hard to be healthy and try to live a good life.”
Kevyn Burger is a Minneapolis-based freelance broadcaster and writer.