E-mail pageCouple Share a Liver and a Vein
Theresa and Ron GonsiorowskiFor 10 years, Theresa Gonsiorowski lived in denial. She had given birth to her youngest son, Eric, and then went to see her local physician because she "wasn't feeling quite right."
Theresa thought the problem was in her sinuses, but a battery of tests showed the cause was elevated liver enzymes. She drove across the state line from her home in Schererville, Ind., to see a specialist at the University of Chicago Medical Center.
Physicians here discovered she had a liver disease that eventually would cause her liver to harden and stop functioning. Theresa told the doctors that she didn't want to know her prognosis. And for weeks afterward, Theresa did her best to deny what doctors felt she absolutely needed to know about her disease, primary sclerosing cholangitis, also known as PSC.
Many years later, Theresa was at a bookstore with her two sons when she found herself scanning shelves for anything she could find on her disease. The mortality rates hit her the hardest. The median life expectancy of PSC at diagnosis is between 9 and 12 years. When she read that, Theresa broke down. "It was a very stupid thing to do," she said, her voice shaking at the memory. Her boys had no idea their mom was sick at all.
The only people who knew were Theresa's husband, Ron, and her close friend, Michele. Theresa battled constant itching, feeling as if there were ants crawling over her entire body, and overwhelming fatigue. "From when I woke up in the morning, I counted down the hours until I could come home and lie down," she said.
It was 10 years after she was diagnosed that Theresa went on the national liver transplant list. Theresa didn't necessarily have to wait for a deceased donor. Since livers regenerate, a living donor could provide a portion of his or her liver. That donor, though, would have to pass three stages of tests-including blood type and liver scans and a check for fatty deposits.
Adult-to-adult liver transplants from living donors have only been in practice for little more than a decade. The first living-donor transplant in the United States--from a mother to her infant daughter-was conducted by Christoph Broelsch, MD, at the University of Chicago Medical Center in 1989.
In the 1990s, surgeons at the University of Colorado-Denver conducted the surgery for the first time from an adult donor to an adult recipient. The transplants grew in number then until a donor died after an operation in New York in 2002. Today, only a few medical centers in the United States conduct living donor transplants; but elsewhere in the world, especially Asia, they are "the No. 1 way," said Giuliano Testa, MD, liver transplant director at the Medical Center.
"Dr. Testa encouraged it," Ron said, "and we're so glad he did, especially after we did our homework and found out that he was the best of the best." Living liver transplants account for 30 percent of liver transplant volume at the Medical Center.
As they left the Medical Center, Ron told his wife, "I'm going to be your donor." But Theresa wasn't so sure. There were dangers involved. Aside from the typical risks associated with general surgery, which include infection, allergic reactions to medications and anesthesia, there was the risk that if the surgical team miscalculated and took too much of the liver, the donor's recovery would be compromised. Theresa worried about the risk of their sons losing both parents. But as a firefighter, Ron's decision to donate wasn't difficult at all.
"Theresa was suffering, and he wanted to do it," Testa said. "He wanted to help his wife. They're a very good couple. They really truly love each other."
Once home, Ron and Theresa broke the news to their sons. "That was probably the hardest thing we've ever had to do, explaining (everything) to them," Theresa said.
Ron underwent testing over the next few months. When they found out that he and Theresa had the same blood type, Theresa told herself not to get her hopes up. After Ron passed the second round of tests, Theresa took the boys to tour the hospital and Intensive Care Unit with a social worker.
The third stage of testing involved a biopsy to check Ron's liver for fat. He kept in good physical shape; the Gonsiorowski house even included a workout room. But Ron enjoyed his fair share of chocolate. "As fate and God would have it, his liver had no fat in it," Theresa said.
Ten days later, the couple was in surgery. Ron went in first, about two hours before Theresa. Testa first checked to make sure the ratio of Ron's body weight to his liver size was accurate. Based on his size, Testa planned to take 65 percent of Ron's liver. He worked slowly and deliberately to ensure Ron's safety-a process that typically lasts five to six hours.
Suddenly, what seemed like a standard transplant surgery took an unexpected turn. Ron's portal vein, which circulates blood through the liver and drains it from the digestive tract and spleen, was severed. Testa and his team struggled to control the bleeding, and knew they had to act quickly before Ron lost a dangerous amount of blood. With Theresa already anesthetized in the next room, they decided to take a section of her portal vein and use it to seal Ron's vein. "It was the most challenging case I've done in 10 years of doing these things," Testa said.
Throughout the ups and downs, the Gonsiorowskis' oldest son, Thomas, then 15 years old, made phone calls every hour to update family and friends and to reassure his brother, then 10 years old. "My boys held it together," Ron said. "They acted the way my wife and I raised them to act, but this could be devastating to children--the fear of both parents going under the knife. We taught them to have faith. They're not boys anymore."
Ron and Theresa know they had a close call. "We had an awesome, awesome transplant team. We wouldn't be here today without them," Theresa said.
People ask Ron regularly if giving up part of his liver was a difficult choice. "I actually have people tell me that they can't believe I did something like that." Some people, he said, tell him that they would never be able to donate to their own wives, which infuriates Ron. "I risk my life every time I go into a burning house. People and cockroaches are running out, and I'm running in. I'd do it all over again even if it meant the worst would happen to me. Marriage is forever, and life is important."
Within a month of the surgery, Ron's liver-reduced to 35 percent its normal size-was fully regenerated. Within three months, the regenerated liver was fully functioning.
"We had a guy who donated in February and in July was running a marathon. Another lady donated, and five months later became pregnant," Testa said. "We've had donors who smoked and drank, stop smoking and drinking. There is a poetic way of looking at this."
For the Gonsiorowskis, there's a funny way of looking at the situation, too. Humor has helped the family through everything. "We had a fight the other day," Theresa said a year and a half after the surgery. "We were arguing for our parts back. He wanted his liver, and I wanted my vein."
