Liver donor drops out

November 21, 2017 GMT

St. Cloud State University assistant professor Bel Kambach felt a kick to the stomach 11 days before a life-saving liver transplant.

She learned that her donor had pulled out.

Kambach’s sister Joan Taveras gave her the news on Thursday. Taveras got word a week earlier but withheld the news while Kambach was in Germany for a medical treatment.

“She didn’t want me to hear it in a hospital room all alone,” Kambach said in her St. Cloud home. “It’s as devastating as it can be.”

Kambach teaches travel and tourism at St. Cloud State. She has primary biliary cholangitis, or PBC. It’s an autoimmune disease like lupus; the immune system attacks healthy parts of the body. PBC causes scarring, or cirrhosis, of the liver, which leads to other complications. Kambach has lost weight and struggles to eat and sleep. She has suffered extreme itching and pain.

The wait list is long for a liver from a deceased donor. So Kambach and her family have sought a live donor for years. Livers regenerate, so a donated piece can regrow in the recipient and the donor’s liver can recover.

‘Overwhelmed with fear’

Abraham Rivera, a 27-year-old from Puerto Rico, found Kambach when he was looking for someone with whom to share his liver. He’d lost a good friend to liver disease and wanted to help someone else.

Rivera and Kambach shared the same blood type — O-positive — and he liked that she was Latin like him. Kambach comes from the Dominican Republic.

But Rivera began to feel fearful about the transplant and was having sleepless nights, Taveras said.

“He said: ‘Tell her I was overwhelmed with fear,’ ” Taveras said. She shared the news with her family before telling Kambach.

“We were in shock. Everybody was devastated. Everybody was crying. My mother was inconsolable,” Taveras said. “You have to be understanding at the same time, as to his reasoning, which was fear.”

Live liver donors face a 1/300 risk of death, said Dr. Charles Rosen, transplant surgeon and director of the Mayo Clinic Transplant Center. The risk of death for live kidney donors is one in 2,000 or 3,000, for comparison.

“It’s truly the most generous act of human kindness I could imagine, to put your own life at risk,” Rosen said of live liver donors.

He prefers to transplant donations from deceased donors, but there aren’t enough of those livers to meet the demand. Mayo Clinic has transplanted nearly 250 livers from live donors since 2000, Rosen said.

A rigorous process

People who volunteer to donate part of their liver go through a rigorous process to make sure they’re a good fit for the recipient and to make sure they understand the risks and can handle the recovery.

“If anyone is uneasy about going ahead, we don’t go ahead,” Rosen said of the team of specialists and the donor himself.

Thursday was a day for crying over the setback, Taveras said. And now they renew the search for a liver donor.

Kambach had two more potential donors in the pipeline when Rivera agreed to the transplant. So those two, her cousin and a St. Cloud State professor, can continue through the process.

It’s a multi-step process involving blood draws, interviews, scans and meetings with a psychiatrist and liver expert. More than 10 people who volunteered to donate to Kambach were turned away.

Kambach took to Facebook to share her bad news and her fears.

“It takes sooooooooo long to get tested and approved that, I’m not sure anymore if I’ll make it,” Kambach wrote. “I just needed all of you to know, these will be hard times for me and my little family.”

Kambach is a single mother of a teenager.

‘A vibrant woman’

Seven years into her diagnosis, Kambach wants more than a liver to prolong her life. She wants people to learn about her illness, to understand the sweeping need for organ donors and the possibility of live donations.

Kambach wants U.S. laws to require everyone be registered for organ donation unless they opt out.

She wants liver dialysis to become an affordable treatment for other PBC patients. That dialysis is not covered by Kambach’s insurance, she said. She travels to Germany for it.

Kambach also wants people to know that they can make some life-saving donations while they’re alive. Humans can donate one of their kidneys and live a normal life. People can donate bone marrow and parts of their liver to help save others.

Time’s not up for Kambach, but she is in the end stage of her illness -- stage four. She weighs under 100 pounds. Her PBC symptoms have greatly diminished Kambach’s quality of life.

She prays everyday, she said, and she’s grateful that she can still get up. But some days she has to stay in bed.

“My sister can tell you I was a vibrant woman,” Kambach said as tears pooled in her eyes. “It’s like a 20-year-old trapped in a 92-year-old body. And I can’t get out.”