A race against time: North Bellmore man who has battled kidney issues now needs a liver

Tim McCabe has overcome grave illnesses and defied the odds since he was diagnosed with an autoimmune disease as a teen.

Since then, the 51-year-old North Bellmore man has received two kidney transplants, survived a near-death bout with an unusual blood disorder, and overcome congestive heart failure.

This latest challenge may be the most daunting for the father of two. McCabe needs a liver transplant to stave off another rare condition: primary sclerosing cholangitis, a disease of the bile ducts. He is on a transplant list for a deceased donor, but his family and medical team are hoping to find a living donor who can give him part of their liver.

"His condition is sort of like a race against time," said Dr. Sonja Olsen, assistant professor of medicine at NYU Langone Health and McCabe’s hepatologist. "We need for him to get transplanted before he develops a resistant infection or his bile ducts just become so diseased that he’s chronically infected and living in the hospital."

Primary sclerosing cholangitis is an autoimmune disease that causes the bile ducts to scar and narrow, causing bile duct obstruction and chronic infections in the bile duct, Olsen said. And there is no treatment like dialysis, which can help people with failing kidneys stay alive while waiting for a kidney transplant, she said.

"This is his fourth autoimmune disease," said McCabe’s wife, Christina. "This is now life and death."

Nationally in 2021, there have been 17,272 transplants through deceased donors and 3,131 through living donors, according to the U.S. Department of Health & Human Services Organ Procurement and Transplantation Network. The most recent data shows more than 107,000 people in the United States waiting for transplants, including more than 11,000 for liver transplants.

Complicating McCabe’s situation is the fact the severity of his illness is not reflected in the metrics that determine his place on the transplant waiting list, according to the Organ Procurement and Transplantation Network.

"The way that livers are allocated is by severity of disease," Olsen said. "And that’s captured by something called the MELD score [Model for End Stage Liver Disease] — a number that is a composite of several lab tests."

Olsen said McCabe’s condition is different because it impacts the bile ducts in the liver. "His MELD score doesn’t really reflect how sick he is," she said.

Olsen said the transplant system allows extra points for people with primary sclerosing cholangitis.

"They get some bump in their MELD score, but it’s usually just not enough because there are so many people waiting for transplants," she said.

The primary concern for McCabe is infections in the bile duct, she said. He is on immunosuppression drugs to keep him from rejecting his transplanted kidney, making him more susceptible to infections.

"We are walking a very fine line between lowering his immunosuppression in order to reduce his risk of getting another bile duct infection, but then we are also potentially risking rejection of the kidney," Olsen said.

Struggles began as a teen

McCabe found out at age 16 that he had ulcerative colitis, which causes inflammation in the large intestine. In 1996, he had major surgery to remove a large part of his intestine.

"Everything was great," said McCabe, who went on to work at the New York City Department of Transportation. He and his wife welcomed their first son, Tim, in 2000.

The following years brought new challenges. Doctors discovered McCabe had thrombotic thrombocytopenic purpura, a rare blood disorder that causes clots in small blood vessels that left him in a medically induced coma for more than two weeks.

Next came the diagnosis of Goodpasture syndrome, found when he was brought to the hospital with congestive heart failure because his kidneys were failing. The autoimmune disease affects kidneys and lungs, according to Johns Hopkins Medicine. In Tim's case it focused on his kidneys, requiring a transplant.

In 2004, he received his first donated kidney, provided by Christine. Eventually, he needed a second transplant, which he received in 2016 after waiting for several years on the list. His conditions made it impossible to work, forcing him to reluctantly retire on disability.

McCabe was diagnosed with primary sclerosing cholangitis in March 2020, after experiencing extreme stomach pain and vomiting. The regular blood tests he received to check organ function, including the liver, had not showed any cause for concern.

"My numbers were always stable, but this was probably brewing," he said.

The search for a liver

Primary sclerosing cholangitis, which can lead to cirrhosis and liver failure, is estimated to be found in about six to 16 people out of 100,000, according to the National Institutes of Health. Symptoms include stomach pain, vomiting and fatigue.

When doctors said his latest condition would require a liver transplant, Christina said she was ready to step up again, without hesitation.

"I was so confident," she recalled. "I thought, ‘It’s simple, I donated a kidney, I am going to donate a liver.’ "

But Christina was heartbroken to find out she was not a match.

"It’s really hard to get cleared for anybody to be a donor, but even harder for liver," said Patricia Tabamo, living donor coordinator at NYU Langone Health. "I could bring five people in for an evaluation and maybe one of them gets cleared all the way."

Different factors can rule people out, such as age, weight and health issues. In some cases, the donor’s liver cannot be safely divided. People who donate livers undergo major surgery, but their liver will regenerate after a short period of time, medical experts said.

"By the end of it, both donor and recipient have a full functioning liver, which is a great outcome," Tabamo said.

McCabe said he hopes speaking about his struggles will inspire more people to consider organ donation. Meanwhile, the family is researching options inside and outside New York for a liver.

He credited Christina and sons Tim, 20, and Ryan, 12, with giving him the strength to keep going.

"I don’t think I would be alive today if it wasn’t for her," he said of Christina. "She doesn’t let me give up."

By Lisa L. Colangelo

lisa.colangelo@newsday.com@lisalcolangelo

Lisa joined Newsday as a staff writer in 2019. She previously worked at amNewYork, the New York Daily News and the Asbury Park Press covering politics, government and general assignment.