Every time you renew your driver’s license in Massachusetts you have a chance to say whether you’d donate an organ upon your death. Waiting lists for cadaver transplants can be six to eight years, far too long for many gravely ill patients. In the case of kidney disease, an alternative is a transplant from a living donor, but that’s no easy matter either. John Nucci is finding that out.
Thirty million Americans suffer from kidney disease, according to the National Kidney Foundation. (Of those, polycystic kidney disease affects some 600,000 people.) There are close to 100,000 people on waiting lists for a transplant, and the wait time is between five and ten years. John Nucci of Boston, one of the good guys in local government, doesn’t have that long. He doesn’t even have a year.
A former president of the Boston School Committee, Boston City Councilor, a former Suffolk Superior Court Clerk Magistrate, now Senior Vice President for External Affairs at Suffolk University, John started out in the social service sector, including 20 years at ABCD (Action for Boston Community Development), helping some of the city’s most needy. He has always been about community, making government and institutions work for the people they’re designed to serve. What many people, from Little League and basketball teams he coached in his East Boston community, to colleagues in the business and university communities, didn’t know is that he has had kidney disease for decades. He who helped the community in so many ways now needs that community. He needs a kidney transplant.
Nucci’s father died of polycystic kidney disease when John was 32 years old. The disease is hereditary. John has it, and his three sons have tested positive. His father’s outcome now looms large. Much of John’s life, he had no symptoms and got by with just 30%-40% kidney function. But he now has end-stage kidney disease, with an ever-decreasing 15 percent of kidney function. His main symptom is fatigue, but he knows that he will suffer more as the end approaches. This, he says, is now a matter of months. Unless a kidney transplant donor comes forward.
“It’s not easy to be public about this, to go out and tell everyone you’re ill,” said John. It would, he said, be “easy to go to bed, feel bad about it, feel defeated.” But that’s not his way.
For Nucci, at 65 years old, neither cadaver donation nor the national exchange program, which creates indirect donation of organs among strangers, is an option. Nor does he see dialysis as an option because it would reduce the potential success of a transplant if one were to become available later on.
With the clock ticking, the only viable option, and it’s a long shot, is a live donor. John’s son Mike is a Boston cop, and the BPD has put out a call on its blog for potential donors. Others are spreading the word. The Massachusetts General Hospital reports that more than 125 people have come forward to donate. But none is a match. A donor must have type O blood, be in good health and undergo rigorous evaluation.
Does he compare his going public with Magic Johnson’s role in the fight against AIDS? It wasn’t the first time he has heard the question. Going public, he said, does increase the odds of finding a match. But Nucci also has his eye on the future.
“If I’m lucky enough to get through this, believe me, I’m not going away. It will be my cause, and I will get involved in policy aspects,” he said. That’s as it has been his whole life. In the United States, one has to opt in to be an organ donor. The U.K. has introduced an opt-out system. With “presumed consent,” everyone is automatically a donor, unless you decide otherwise, and it’s expected to virtually eliminate waiting lists.
“We need to talk about this,” he said, adding that we also need to talk about research into a cure, which is no more available to John today than it was for his father three decades ago. For now though, the focus is not on public policy. The focus has to be on getting this really good guy a new kidney.