Man and niece who share a liver now share their story to tout the benefits of living donor transplants

April 30, 2013 at 2:57 pm Leave a comment

UB&I two weeks post surgery2

Karen MacKay and Bill Counsil, taken two weeks after surgery

Bill Counsil will never forget that moment three years ago in April, sitting around his brother’s kitchen table in Mechanicsburg, talking about the kinds of things families talk about when they get together. Suddenly, during a pause in the conversation, his then 33-year-old niece Karen MacKay of Dillsburg said, “So, Uncle Bill, about this liver thing, when do you want to do it? I’ve been approved.”

In January 2010, doctors at Penn State Hershey had told the then 57-year-old man from Mill Hall, Pa., he would need a liver transplant. A throng of family members had come along to hear the options, his niece Karen among them. With such a large family and strong support, doctors said living donation might be the best option. If someone were willing—and could make it through the rigorous pre-donation testing—he could get a liver without becoming one of the 15,800 people nationwide trying not to get sicker while waiting for a liver from a deceased donor match.

MacKay went home from the meeting and told her husband she wanted to start the evaluation process. She wanted to find out if she could donate half of her liver to her uncle. “I couldn’t just sit around and wait for somebody else to come forward or hope someone else would be a match,” she said. “I had to at least try.”

She wasn’t surprised by her husband’s reaction. They had two young children. Transplant surgery had risks. She let it go. Eventually, he gave her his support to go forward with a process that included everything from lab work and a liver biopsy to a psychological assessment.

“It’s a very stringent process,” says Zakiyah Kadry, M.D., F.A.C.S., chief of the Division of Transplantation at Penn State Hershey. “Only 30 percent of the people who come forward to donate can.”

At the time, Penn State Hershey had only performed three live liver donations: “The decision-making relating to live donation focuses on the safety of the donor,” Kadry says. “So that limits the number of live liver transplants that can be done.”

Counsil, a high-school volleyball coach who hikes, bicycles, hunts, and fishes, never had any health problems except the high cholesterol that runs in his family. So he wasn’t worried when, during a routine physical exam in late 2002, doctors suggested he take a different cholesterol medicine because of elevated liver enzyme levels.

Doctors followed up with blood work every six months for two years. The liver enzymes remained high, so they sent him to a specialist, then a liver clinic. Eventually, in early 2007, doctors at The Johns Hopkins Hospital in Baltimore gave him a diagnosis: primary sclerosing cholangitis, a disease that causes obstruction of the bile ducts in the liver that carry impurities out of the body. They told him he would probably need a transplant within fifteen years.

Counsil decided to cut out occasional weekend beers with the guys while hunting or fishing, take recommended medicines and try different diets to see if things improved. New blood work results led doctors to believe he’d need a transplant within five years.

“I still had no physical symptoms, so that really puzzled me,” Counsil said. “I felt I needed to get a second opinion.” He went to Thomas Jefferson University Hospital in Philadelphia, where doctors confirmed it all. He went through several procedures, including stents to keep the bile ducts from growing shut. It wasn’t until late 2009, during hunting season, that he started to notice symptoms.

“We’d be hiking up over the mountains and I’d be the last guy, whereas typically I was the first or second,” he said. “I had lost fifteen pounds and my energy level wasn’t up.” He also began to experience a terrible itching all over his body—one that came from within and had to be relieved with medication rather than over-the-counter creams.

He knew when the time came for a transplant, the whole family would be there with him. And he didn’t want them to have to drive to a big city to show their support. He contacted Penn State Hershey and a transplant coordinator set up a series of evaluations that culminated in the January 2010 family meeting.

Then came months of not knowing. “I prayed, but I wasn’t going to sit home and feel sorry for myself and worry about who was going to raise their hand,” he said. He planned to go to fishing camp just like he did every spring—even though he had lost forty-five pounds, felt exhausted, and his skin and eyes had taken on a yellowish hue.

Instead of fishing, he decided to join MacKay for a Multiple Sclerosis Walk she participated in each spring. And that’s when he learned she would give him half of her healthy liver.

“I understood everybody was scared,” MacKay said. “People would say, ‘Aren’t you worried about this?’ But I just felt I was supposed to do this—that the doctors wouldn’t put us at risk if they didn’t feel confident it would work.”

She went home a week after the July 6 surgery. Cousil went home a week later, with an arsenal of anti-rejection medicines and instructions to protect his immunosuppressed system from bacteria and germs.

By November 2010, MacKay’s liver had grown back to normal size. Counsil is back to his active lifestyle, hunting and fishing and coaching volleyball. He still has to be careful–letting other guys gut the fish, process the deer, and chop the wood during hunting and fishing trips to avoid unnecessary exposure to bacteria.

But he has become an advocate for living organ donation. “It takes humans to help other humans. We all seem to want to do it financially, but sometimes it has to be physically,” he says. “If you have a relative or close friend and you can do it, we can solve some of these illnesses,”

To learn more living organ donation:

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