Throughout his political career, whether it was running for Boston School Committee, City Council or Suffolk County clerk magistrate, John Nucci has relied on the help of others to help him win.
Now, Nucci needs the help of others more than ever to help him win the biggest battle of his life.
In his 30s, after the passing of his father following complications of Polycystic Kidney Disease, Nucci found out that he had inherited the same genetic disorder where the renal tubules become structurally abnormal, resulting in the development and growth of multiple cysts within the kidney.
The diagnosis was grim and for the last three decades Nucci lived knowing that some day his kidneys would begin shutting down.
“I was tested in my 30s to find out if I had inherited the disease and I was told then that I did in fact have cysts on my kidneys,” said Nucci. “As these cysts form over the years your kidney function gets lower and lower. My doctors at MassGeneral have been watching it every year since I was in my 30s and in the past year my levels have been dropping fast. That’s the nature of this disease. Once you’re diagnosed you’re never at full kidney function but you can live at 30 percent kidney function for years. Once it drops down to about 15 percent is when they say ‘it’s time.'”
For Nucci ‘it’s time’ meant starting the process of finding a living kidney donor in order to potentially avoid dialysis treatments and the further deterioration of his failing kidneys.
“I’m months away from dialysis,” said Nucci. “It’s inevitable, it’s going to come. But while dialysis is a life saver it’s not a good quality of life. The other problem is that if I have to go that route the longer I’m on dialysis waiting for a donor the less likely a kidney transplant will work or last.”
No stranger to rallying the troops in Eastie and citywide, Nucci, his wife, Peggy, and their three sons, John, Michael and Danny have launched a campaign in local Boston newspapers, on social media and through the relationships Nucci has cultivated over the years to find a living donor match.
Nucci’s wife and his boys have been quarterbacking the campaign to find a living donor as soon as possible. His three boys all tested positive for Polycystic Kidney Disease and were automatically eliminated as donors so they switched gears and began reaching out to other friends and family to find a match.
“I’m not social media savvy so my wife and the boys have been doing a tremendous job getting the word out on Facebook, making phone calls and reaching out to anyone and everyone,” said Nucci. “Finding a living donor is not the hard part and I have had dozens of people step up and get tested and for that I’m beyond grateful. A lot of people have already gone through the process of extensive testing at MassGeneral but for one reason or another they were eliminated. The problem isn’t so much finding someone who wants to donate it is finding a match. A direct donor has to be a direct blood type (Nucci is Type O) and MassGeneral is very diligent making sure that the donor is healthy and their kidneys are healthy.”
Nucci said waiting for a deceased donor could take seven to nine years, and at his age, the direct donor is really the only viable option.
“It’s a race against time,” he said. “I’m ready in terms of my own health. I am a healthy candidate for the transplant. It’s just finding the match.”
In the meantime, his son, John, is running the Hyannis Sprint Triathlon to raise money and awareness for Polycystic Kidney Disease.
“In addition to raising money for this great cause, I’m also hoping to get the word out to as many potential donors as possible,” said John. “I know that it’s a huge ask, and it’s not something I would put out there if it wasn’t absolutely necessary, but we’re hoping that someone out there is willing and able to help him. I didn’t even know what a reasonable amount to target would be, and I’m honestly overwhelmed by the support. We’re raising money and getting the word out to so many more people and potential donors than my family and I possibly could’ve on our own, and it seriously means the world to all of us.”
Nucci’s wife Peggy has also been overwhelmed by the amount of support so far.
“I really want everyone to know how much we appreciate everyone’s willingness to help out with our efforts to find the matching kidney donor which John truly needs right now,” said Peggy.
For now, Nucci is trying not to think to much of what lies ahead and focus solely on coming out of this battle victorious, like he did so many times in his political career.
“I’m convinced I’m going to beat this,” said Nucci. “I have never won anything in my life without the help of my friends. My entire political life was spent relying on friends and supporters to win, and this is no different. In many ways it’s like another campaign and I’m going to need that support to win.”
If you or anyone you know is interested in becoming a donor, there is a quick and confidential online screening form that can be found at www.mghlivingdonors.org.