Paul Hain’s liver was failing quickly.
He’d been diagnosed with the rare liver disease primary sclerosing cholangitis – better known as Walter Payton’s disease – in 2007.
Doctors put him on a liver transplant list in 2009, but because people with his disease don’t typically have a high MELD score – the rating used to determine how dire a prospective liver transplant’s status is – he wasn’t climbing the list.
About a year ago, it became clear that Hain, 66, of Spring Grove, didn’t have much longer. His family feared he wouldn’t make it to Christmas. He was getting sicker, yet his MELD score was improving.
Hain needed a live donor.
After his daughter turned out to not be a match in the last stages of testing, she put a plea on her Facebook page.
From her home in Wausau, Wis., Kathy Kurtz, an old high school friend of Hain’s daughter, knew what she needed to do.
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About 18 people die every day waiting for organ transplants, according to the U.S. Department of Health and Human Services.
That figure has shot up in the past two decades as the number of people on transplant waiting lists has risen from about 18,000 in 1989 to more than 115,000 this year.
During the same span, the number of organ donors has risen from about 6,000 to a figure that’s floated between 14,000 and 15,000 in each of the past eight years, according to HHS’s Organ Procurement and Transplantation Network.
“The demand for organs is steadily increasing,” said Tony Sullivan, marketing communications coordinator for the Gift of Hope Organ & Tissue Donor Network in Chicago. “The supply of organs can’t keep up with the demand.”
A little more than half of all donations come from deceased donors.
Some, such as Hain, are lucky enough to find a live donor willing to undergo major surgery for their benefit.
Others aren’t so lucky. McHenry resident Don Kinsala’s wife, Barbara, died in 2011 at age 58, after 11 years on a liver transplant list.
Kinsala estimates that Barbara spent a cumulative two years at the hospital in the last five or six years of her life. She suffered greatly, but like Hain, her MELD score never was high enough to get an organ from a deceased donor.
Kinsala and others are frustrated by the system that decides who gets the organs of deceased donors. But more frustrating is a simple fix – getting more people to sign up to donate their organs upon death.
About one-third of the population is registered as organ donors, but Sullivan estimates that about 98 percent of would-be organ donors can’t give away their organs upon death. Some turn up a medical history that makes transplantation unsafe. Others die in a way that doesn’t let doctors preserve the organs.
“If somebody were to die at home of a heart attack, and they’re not found for 24 hours, that person can’t be a donor because those organs would already start to deteriorate,” Sullivan said.
That makes it tough to keep up with the demand for organs. But organizations such as Sullivan’s, as well as Hain, Kinsala and others who’ve been affected by the need for a transplant, continue the push for more people to register as donors.
“She always had a smile. She thought she was going to beat this thing,” Kinsala said of his wife. “I feel that the donor thing is a problem, and I can’t just go running away without doing something.
“Barb could have been a really healthy person.”
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Most people who receive organs see quick, lasting improvement to their health.
In 2009, about three of four kidney, heart or liver recipients still were alive five years after their surgeries, according to HHS.
Recipients of livers often see near-immediate improvement. For Hain, the main side effect after surgery was extreme exhaustion. His body was using nearly all of its energy regenerating into full size the portion of Kurtz’s liver he’d received.
“In June, the fatigue just stopped,” Hain said. “And I’ve felt great ever since.”
For Hain, the toughest part of the transplant was worrying about Kurtz. He was reluctant to accept an organ from a live donor in the first place. When he awoke from surgery, it was Kurtz’s health that was first on his mind.
“Shortly after I was conscious, her husband wheeled her over,” Hain remembered. “She was smiling and she was looking great. She reached out and held my hand. I can’t tell you the relief I had to see her and know that all is well.”