SHELBY — Michele Wilson relies on an extensive stock of medical items so she can give herself dialysis treatments each night.
For three years, Michele Wilson has been looking for a new kidney.
Wilson, 49, lives with Senior-Løken Syndrome, a rare combination of two specific conditions, one in her kidneys and one in her eyes. The condition causes cysts to develop on a person’s kidneys, limiting their ability to remove toxins from their body.
On a good day, the condition can leave Wilson feeling unwell. Long term, it will lead to kidney failure. A kidney transplant could allow her to resume living her life as normal for a decade or more.
Since being told she needed a new kidney, the Shelby woman has been added to three registries for people seeking organ donors. So far 10 people — family members, friends and each of her four children — have offered to donate a kidney to her.
“For one reason or another, they were all not able to donate. It is very discouraging,” Wilson said. “In February we had a possible donor, but I tested positive for COVID and we were not able to get it.”
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While she waits for a donor, Wilson undergoes a nightly dialysis treatment. As she sleeps, a machine in the corner of her bedroom, connected to a port in her stomach, pulls blood out of her body, cleans it and pumps it back into her body.
“We have a lot of alarms in the night. If there are any malfunctions or if you roll over on the tubes. Most of the time I can sleep through it, but sometimes it feels like your insides are being sucked out,” said Wilson.
“She’s tough. I had to have both of my knees replaced. That was a surgery, and it was done and I thought it was awful. She does this every night, ” said Rick Wilson, Michele’s husband.
Doing her dialysis treatments at home allows Wilson to continue working. Her employer lets her to work remotely, but it does come with some drawbacks.
The amount of equipment required to treat her condition is extensive. Her home office doubles as a storage facility for all of her medical equipment.
“There’s 37 boxes of solution, three boxes of cassettes, two boxes of drain lines. I have to wear a mask while I do it, and I have to wear gloves. There are bottles of disinfectant solution. It is a lot,” said Wilson. “We have to keep at least a month of supplies here, plus an additional week’s worth just in case.”
There’s also no small amount of risk attached to home dialysis. Wilson said she has to be careful to keep everything sterile to avoid infection.
The prongs used to connect the machine to her body are especially susceptible to bacteria and causing infections, she said. Even a single infection would require her to stop treating herself at home and start going to clinics to get care.
The Wilsons remain hopeful they will one day find someone able to donate a kidney. In the meantime, they are encouraging people to consider testing to see if they qualify to donate.
Most healthy adults can live with only one kidney with no long-term side effects. Wilson said her insurance is able to pay for potential donors to get tested for compatibility, and there are grants available to fund a person’s time away from work should they donate.
Even if people don’t want to donate while they are alive, Wilson has also taken to encouraging people to become donors after they die.
“A lot of people, as a general rule, when they go to get a driver’s license, they don’t really think about being an organ donor. They are not educated enough to know what that entails,” said Wilson. “Just by clicking that they could possibly help 10 or 15 people, as opposed to those organs not being used at all.”
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