Debbie Koerber hopes her friends might be willing to help her out. The McHenry woman is soon going to need a new kidney.
Koerber, 59, has known for 25 years that her kidneys don’t work right. A routine physical and blood test in 1999 indicated high creatinine levels – a sign her kidneys were not working properly. In the years since, she has continued to return for checkups with her doctors, all telling her that eventually, she’d need a kidney transplant.
That eventuality is getting closer. Her doctors at Minnesota’s Mayo Clinic put Koerber’s kidney disease at Stage IV out of five. Although she’s not gotten to the point of needing dialysis, and she’s not yet on the transplant list, it’s almost certain she will be need a new kidney one day.
“Mayo has pushed my hand to be more organized and prepared” for that next step, Koerber said. Knowing that she’d see many family, friends and neighbors at a funeral this spring, Koerber had a brainstorm. She asked a friend at work to make fliers and postcards she could pass out or hang around McHenry.
Those cards ask the recipient to consider being a living donor. They include a QR code that navigates to the Mayo Clinic’s transplant information page, telling potential donors what to expect from tests, the procedure, risks and financial information.
Dr. Carrie Schinstock, the kidney transplantation medical director at Mayo Clinic, confirmed that Koerber is nearing Stage V kidney disease. In that stage “you need some kind of replacement, or dialysis,” said Schinstock, who is not on Koerber’s care team.
Dialysis is lifesaving for people with advanced kidney disease, “but it really impacts their quality of life,” Schinstock said. Patients either need to go to a dialysis center three days a week or in some cases can do it at home. But it isn’t easy either way.
“They feel poorly on dialysis. It gives you just enough replacement to be able to function. Then there are dietary restrictions and restrictions on the ability to travel,” Schinstock said.
Transplants – particularly live donor transplants – are associated “with living longer and a much better quality of life. They have medications to prevent rejection, but they don’t have the dietary restrictions. They are able to travel and to work,” Schinstock said.
How long a patient remains on the transplant list, waiting for a donor, differs from region to region. But donors who find a live, direct-donation kidney do not have to wait.
“With a living donor you can skip the line. You can get it at any point,” Schinstock said.
There is a lot of misinformation about what it takes to be a live donor, the doctor said. Donors do not have to be in perfect health, and there is no upper age limit. The surgery itself is minimally invasive, laparoscopic surgery. It’s suggested that donors take off work for six weeks “but within a couple of weeks they are back to their usual activities” and can work from home or any job without weight or manual labor restrictions.
More employers also “have benefits for living donors, and some states have benefits for living donors. There are also programs to help living donors with lost wages,” Schinstock said.
Koerber began seeing Mayo doctors after she was diagnosed with Type II diabetes in April 2021 and wanted more answers. She was accepted for evaluation there in December 2021. It was at Mayo that, for the first time, she learned she was born with abnormally shaped kidneys. Surgeons there also removed 2½ of her parathyroid glands, to treat the high calcium in Koerber’s blood.
In April, her care team said her eGFR (estimated glomerular filtration rate) level was at 22. If it drops below 20, she will then be placed on the “active” transplant list, Koerber said. If she ends up needing to do dialysis, she will, Koerber said.
“If it came to that point, I would probably take a leave of absence from work,” she said.
But once she gets on the transplant list and if a deceased donor match is found, she will have limited time to get up to Rochester, Minnesota, with a caregiver in tow to stay with her after surgery.
That is part of the reason she hopes to connect to a living donor.
“If I can find someone willing to donate a kidney, I know when it will be done” and everyone can schedule for it, she said.
One friend and her daughter, both Type O+ universal blood donors, are getting tested to see if they can donate. But neither are a sure deal.
Koerber grew up in McHenry and now lives in the house that was her grandparent’s Fox River summer home. She works part-time now at an Apple store, and spends much of the summer on a personal watercraft, enjoying the river with friends and family. Those are some of the people she hopes will see her fliers and look at being a donor.