By Heather Abrey
Kitchener Post staff
Despite spending more than 10 hours a week hooked up to a dialysis machine, Lori Kraemer likes to look on the bright side of life.
“The staff here, the nurses, are just fantastic. I actually think of them kind of like a second family,” she said as a dialysis machine at Grand River Hospital’s Freeport campus cleaned toxins from her blood, something her diseased kidneys have been unable to do for the last two years.
Every Tuesday, Thursday and Saturday, Kraemer is hooked up to a machine for three and a half hours — an exhausting process that often leaves her needing a nap.
Kraemer has polycystic kidney disease, which causes multiple cysts to grow on the kidneys and can lead to eventual renal failure.
For her, the only solution is an organ transplant.
Kidneys and livers can be transplanted from live donors, and when Kraemer and her husband Don discovered they have the same blood type, they were hopeful. But there’s more to a successful transplant than just blood type, and the couple is not a suitable match.
Since she was adopted, Kraemer has no biological family to test for compatibility.
However, with Don medically approved to donate, the two signed up for the living donor paired exchange program. Through the program, the pair would be part of a chain of donors — Don would give his kidney to a stranger, and in exchange Kraemer would also receive one from a stranger.
“They told me four to five years if I’m waiting on the list for my blood type, but with the paired exchange program it should be quicker,” she said.
The program will conduct another chain of transplants in October, and Kraemer is waiting to hear whether she will be among the recipients.
There are approximately 1,500 people in Ontario waiting for organs, many of which cannot come from live donors. Kitchener has a donor registration rate of 28 per cent — higher than the provincial average of 22 per cent, but well below many other cities, ranking 70th out of 179.
One donor can save up to eight lives and can improve quality of life for many others. It takes mere minutes to register at beadonor.ca and residents can also register through Service Ontario. Carrying an old donor card is not enough to ensure a person’s desire to be a donor is honoured.
“I think the most important thing is to let your family know your wishes,” said Kraemer. “I think there’s probably a higher donation rate when the family knows your wishes.”
Now 40 years old, Kraemer was first diagnosed with polycystic kidney disease when she was 19.
“I think I was pretty naïve when I was 19 and I was diagnosed. You think you’re invincible,” she said. “I think I had the misconception that if and when someday I did have kidney failure, I would get a kidney just like that. That there would be one just kind of floating around out there for me.”
After her diagnosis, Kraemer lived much of her life without symptoms. Polycystic kidney disease progresses slowly, with about half of patients eventually requiring a transplant.
It wasn’t until two years ago that Kraemer went to the hospital with serious flu-like symptoms, only to find out that her kidneys were failing.
“I was pretty close to dying,” she said. “My kids inspired me to pull through. I actually ended up in the [intensive care] unit, which is where my father died back in 1986, and I thought, ‘I’m not going to die in the same place he died.’”
Emergency dialysis improved her condition, and the thrice-weekly ritual means she feels fairly well, if sometimes lethargic.
“I tire quickly — easily. There are some things I’d like to do that I can’t right now. I’d like to do gardening, I’d like to run, but when I try to do those activities I get jabs of pain in my back,” said Kraemer.
“It’s kind of frustrating, but I keep a very positive attitude. I try to think of the things I can do, rather than the things that I can’t.”
To help deal with some of that frustration, Kraemer started a Facebook group called Life on the List — a support group for those waiting to receive organs. She also volunteers with the Life Donation Awareness Association of Mid-west Ontario, which aims to educate people on the importance of registering as a donor.
Even among those that are registered, being a suitable donor is rare. In order to harvest organs, a person must die in hospital while on life support. These rare circumstances make it even more important to have as many people as possible registered to donate.
Kraemer’s disease is genetic, and one of her 13-year-old twin daughters is showing early signs of kidney disease. While Kraemer plans to monitor her daughter’s condition closely, she may also require a kidney one day.
For more information on organ donation or to become a registered donor visit beadonor.ca. For more on the living paired donor exchange registry, visit organsandtissue.ca and click on ‘living donation.’