'I don't want to think about not getting it.' Wantagh man, 56, seeks live kidney donor 

Back when he was a long-distance runner, Joe Boyce never dreamed there'd be days like this.

The Levittown native was a cross-country star at Holy Trinity High School and earned a full scholarship to St. John's University, where he'd been competitive in the Big East Conference.

He was 5-foot-9, 128 pounds then, admittedly "fanatical" about getting in his roadwork, staying in shape.

So Boyce, 56, of Wantagh, said he was shocked when he was diagnosed with chronic kidney disease in 2014, and he was later placed on a statewide waitlist for a cadaver-donor kidney transplant.

He was surprised again in March when his kidney function dropped dramatically, from 18% to just 13%, and doctors at North Shore University Hospital-Northwell Health said it was time to start looking for a potential live donor.

He and his wife, Christine, made the decision to tell their children, Sean, 13, and Julianna, 11, as well as Joe's son, Michael, 26, from his first marriage. Then, Boyce said, family and friends set up a webpage — kidney4joe.org — seeking a live donor with help from the National Kidney Donor Organization.

"It was always in the back of my mind this day was coming," said Boyce, who has a Massapequa-based accounting firm. "But once I saw the number hit 13 it shook me."

Boyce said the first week of March was overwhelming.

"Something that was private was now public, since we needed to get out there and ask for help finding a live donor," he said. "Now everyone in the community, everyone at work, everyone in my family knows. But, I've been floored with the response."

The webpage pitch is simple. "Joe Boyce needs a Kidney Donor," the headline says, adding: "I need to have a kidney transplant, very soon. Would you consider sharing my story and help me find a donor?"

The federal Health Resources and Services Administration said that as of March, 106,100 men, women and children were on the national transplant list, seeking a range of organs, tissue and other donations. 

One cadaver donor, the administration said, can save eight lives and help 75 others.

Though 145 million Americans have signed donor cards, just three in 1,000 deaths are such that organs can be harvested for donations. About 20 people die each day waiting for a transplant, the administration said.

The numbers are equally tough in New York, said Dr. Ernesto Pompeo Molmenti, chief of the division of Transplantation of Surgery at Northwell's North Shore University Hospital.

New York has one of the longest wait times in the nation for transplants, sometimes seven years or more.

While those signed up for donor registration in some states is more than 90% and about 60% nationwide, in New York, in some boroughs, it is barely 25-30%, Molmenti said. "It's incredibly low."

The live donor route is different in that donors are asked to come forward and are tested to see if they're compatible. Even if they aren't, they can still be matched in a swap program where an organ might be transplanted into a third party with the original target patient receiving a transplant from a donor they did not even know existed. This also is done through a national database.

The benefits of transplants in general are huge, Molmenti said.

"It improves the survival rate dramatically of the person who gets the transplant [and] … the quality of life," he said.

In the case of kidneys, Molmenti said it means patients can avoid dialysis.

"The success rate, it's outstanding," he added.

Boyce was one of the first on Long Island, one of the earliest nationwide, to receive in-utero Rh-factor transfusions after doctors at Syosset Hospital, where he was born in November 1965, found his blood was Rh-positive while his mother was Rh-negative. His story was chronicled in Redbook.

Boyce said his parents were afraid the Rh issue led to his current kidney problems. "I told my mom, 'No one's ever said that, so put it out of your mind.'"

Boyce thinks the problems started when he stopped running, gained 40 pounds and was diagnosed with high blood pressure in his mid-20s. "My blood pressure was like 180 over 140," he said.

He's been on blood pressure medications ever since.

Molmenti said about 90% of those with chronic kidney problems have high blood pressure, while about 50% are diabetic.

Boyce said when he learned he might need a live donor he approached his brothers and sisters, but all have medical issues that mean they can't donate. His wife, Christine, also is unable to donate.

"He feels so guilty," said Christine Boyce, a teacher at Calhoun High School in Merrick. "He's like, 'How can I ask someone healthy to do this, to give me a kidney? How can I wait for some 21-year-old to get into a motorcycle accident so I can get one?'"

Still, more than a dozen people have come forward to get tested as potential donors.

"There are so many good people out there who want to come forward, who want to donate, and they're really amazing," Joe Boyce said. "It's like I'm dead but I'm not dead. This is what people do when people pass away, how they act, being so wonderful.

"I just hope we find someone to donate," he added. "I don't want to think about not getting it."

By John Valenti

john.valenti@newsday.com

John Valenti, a reporter at Newsday since 1981, has been honored nationally by the Associated Press and Society of the Silurians for investigative, enterprise and breaking news reporting, as well as column writing, and is the author of “Swee'pea,” a book about former New York playground basketball star Lloyd Daniels. Valenti is featured in the Emmy Award-winning ESPN 30-for-30 film “Big Shot.”