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Transplant Support Group of Northern Illinois provides resource for recipients, caregivers

Published: Monday, March 24, 2014 11:42 p.m. CDT • Updated: Monday, March 24, 2014 11:45 p.m. CDT
(Kyle Grillot – kgrillot@shawmedia.com)
Don Kinsala (above) of McHenry lost his wife in 2011, while she was waiting for a liver transplant. Kinsala asks questions March 15 during the Transplant Support Group of McHenry County's 10-year anniversary meeting March 15. "After Barbara died, I was about six months in the funk, and I came down and got with these people," said Kinsala. "The camaraderie kind of snapped me out of it a little bit. I felt that I could keep Barbara's legacy going by contributing to others."
(Kyle Grillot – kgrillot@shawmedia.com)
Alexis Provenzano (right) of Wonder Lake looks to her mother, Kathy, while talking about the different aspects of care taking and waiting for a transplant during the Transplant Support Group of McHenry County ten year anniversary meeting March 15.

For about six months after his wife, Barbara, passed away, Donald Kinsala lived life in a fog while he nursed a broken heart.

His bride was only 56 years old when she died in 2011. Barbara Kinsala was one of 18 people who die each day waiting on a life-saving organ, according to the U.S. Department of Health and Human Services.

Sick with hepatitis C from a blood transfusion she received when she was 19 years old, Barbara’s disease didn’t present itself until 10 years before she died.

Barbara needed a liver.

After she died, Donald blamed the doctors. He blamed the medicine. He blamed the process that determines how organs are distributed. He blamed the blood tests that, despite how sick Barbara was, never hit that magic number to move her up the waiting list. He blamed every person who never signed up to be an organ donor.

He blamed himself.

“We went from praying her to get better, to praying for a transplant, to praying that she would die quickly because there was just no hope, there was none,” he said.

After Barbara died, a friend from church told him about a support group for transplant survivors.

Why not give it a chance, he thought?

At his first meeting of the Transplant Support Group of Northern Illinois, he met people such as Rich Barclay and Alice Quille. People with one thing in common: Someone else’s organ saved their life.

According to United Network for Organ Sharing, or UNOS, there are 121,755 people waiting on an organ in the U.S. Of those, kidneys are the most needed, followed by livers.

Though Donald Kinsala’s story was different – his loved one didn’t survive – he was warmly welcomed by the group and soon learned he had a unique perspective to offer the now 10-year-old group. Quille, of McHenry, received a liver transplant in 2003, and formed the support group a year later. There are about 30 members.

“I realized there were a lot of others going through the same thing,” Kinsala said. “It was the first time I was able to open up.”

The group meets on the third Saturday of each month at Centegra Hospital – McHenry and often has a guest speaker. It’s open to caregivers and transplant recipients. They discuss medications, doctors and surgical war stories.

Barclay, of Mundelein, is president of the Transplant Support Group. He had the same rare liver disease that afflicted former Bears running back Walter Payton. Now, he has 62 percent of his daughter’s liver.

Now that Barclay has lived three years past his surgery, his life’s mission is to educate others about organ donation.

“It’s not the killer that cancer is, but this can be fixed,” Barclay said. “If people would just sign their driver’s license to be an organ donor then this would go away.”

To sign up, visit www.ilsos.gov/organdonorregister.

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