Michele Wilson relies on a vast stock of medical items to be able to self-administer 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 his kidneys and one in his eyes. The disease causes cysts to develop on a person’s kidneys, which limits their ability to remove toxins from their body.
On a good day, the condition can leave Wilson feeling bad. In the long term, this will lead to kidney failure. A kidney transplant could allow him to resume a normal life 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 his four children – have offered to donate a kidney to him.
“For one reason or another, not all of them were able to give. It’s very disheartening,” Wilson said. “In February we had a possible donor, but I tested positive for COVID and we couldn’t get him.”
While waiting for a donor, Wilson undergoes night dialysis treatment. While she sleeps, a machine in the corner of her room, connected to an orifice in her stomach, extracts blood from 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 spill on the tubes. Most of the time I can sleep, but sometimes I feel like your insides are being sucked out,” Wilson said.
” She is hard. I had to replace both of my knees. It was an operation, and it was done and I thought it was awful. She does this every night,” said Rick Wilson, Michele’s husband.
Doing his dialysis treatments at home allows Wilson to continue working. His employer allows him to work remotely, but this has some disadvantages.
The amount of equipment required to treat his condition is considerable. His home office also serves as a storage place for all his medical equipment.
“There are 37 boxes of solution, three boxes of tapes, 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. That’s a lot,” Wilson said. “We need to keep at least a month’s worth of supplies here, plus an extra week just in case.”
There is also no small risk associated with home dialysis. Wilson said she had to be careful to keep everything sterile to avoid infection.
The pins used to connect the machine to her body are particularly susceptible to bacteria and cause infections, she said. Even a single infection would force him to stop treating himself at home and start going to clinics for treatment.
The Wilsons remain hopeful of one day finding someone who can donate a kidney. In the meantime, they are encouraging people to consider testing to see if they are eligible to donate.
Most healthy adults can live with just one kidney without long-term side effects. Wilson said her insurance is able to pay potential donors to get tested for compatibility, and there are grants available to fund a person’s time away from work if they donate.
Even though people don’t want to donate while they’re alive, Wilson also encouraged people to become donors after they’re dead.
“A lot of people, as a rule, when they go to get a driver’s license, they don’t really think about being an organ donor. They’re not educated enough to know what that entails,” Wilson said. “Just by clicking, they could potentially help 10 or 15 people, as opposed to those organs that aren’t being used at all.”