More than 100,000 people in the United States are awaiting a kidney transplant, according to the National Kidney Foundation. That’s one real person more than one hundred thousand separate times. John Nucci is one of those people. Nucci, MPA '79, Suffolk’s senior vice president for External Affairs, suffers from polycystic kidney disease. Without getting too graphic, he explains, the disease causes a multitude of cysts to form on the kidneys that eventually choke off kidney functioning.
That’s where Nucci finds himself now. He needs a kidney transplant, and he and his family have gone public with that need and their effort to find a living donor. But in that process, Nucci is also looking to bring more light to a disease that, until recently, he knew very little about, despite having carried it his whole life. March is National Kidney Month, and Nucci recently offered some thoughts on his own condition, his search, and the need for greater awareness of kidney disease and the life-saving gift of organ donation.
Q: How are you feeling?
Nucci: I feel fine. You live your whole life with it, and you don’t feel any effects, until the final stages. But the kidney function numbers are what they are, and they are declining at a fairly rapid pace. There is no way to put a time frame on it, but the nature of the disease is at some point the kidneys will stop functioning, and that’s where we are now.
Q: Over the course of your career, you have been quick to respond to requests for help from others. You also haven’t hesitated to go to the community to ask for things. You’ve asked for votes and campaign contributions throughout your political career. You’ve asked for regulatory approvals and support from neighborhood groups and many other things on behalf of Suffolk. But this one feels a little different. It’s very personal. How does that feel for you?
Nucci: It’s an unusual feeling for me to be asking the community at large for help for me. It’s usually been the case that I’ve been asking people to help other people or trying to do it myself. When you spend your life in public service it’s understood that a big part of your life has been answering requests for help. I’ve done that and have actually felt it to be rewarding.
Now I find myself on the other end of that telephone line. It’s a very difficult thing to ask for a kidney. And quite frankly, I try to avoid doing that directly. What I’d rather do is let people understand not just my situation, but the disease and the dilemma that I and others face, and hope that somebody steps up and volunteers. In many ways this is a campaign. It’s my biggest campaign, and it’s not for public office. It’s to raise awareness of a disease that’s affecting me and many others. Awareness and attention is the key here. Polycystic kidney disease is not a household word, and yet it affects so many hundreds of thousands of people. And most people won’t think about kidney transplants their entire life, but that, too, affects hundreds of thousands of people, so I’m trying to shine some light on a medical issue.
Q: How did this first go public and what has been the response?
Nucci: Fortunately, I have an incredible family. They are the ones who initially went to Facebook and other social media to spread the word, and it exploded from there. People I spoke to initially were family and very close friends. However that didn’t produce a match for me. There’s a high inheritance rate. All three of my children have the gene, and therefore they cannot donate kidneys to me. So my family decided they had no choice but to cast a very wide net. I agreed with that strategy because I saw it as not only being effective but could spread awareness that would help other folks. I’m absolutely humbled by the response I’ve gotten. It comes in different forms. I’ve received hundreds of well wishes and thoughts and prayers from lots of people I haven’t seen in years, some I’ve never met. And then I’ve also received offers to get tested, to fill out the questionnaire and become a kidney donor. That’s a process. It’s not easy or quick to find a match, but it starts the process. So I think we’ve been able to not only spread awareness but also generate the immediate return to get people who want to help in my particularly case.
Q: You are hoping for a kidney from a living donor rather than a deceased donation. Why does that matter in your case?
Nucci: Many people in my position find themselves trying to find a donor before the disease gets any worse and dialysis is required. Receiving a kidney from a living donor is the quickest way to do that. And even that process takes time with all the testing involved. The other methods of obtaining a kidney from a donor through either the swap program (an exchange where a living kidney donor is incompatible with a recipient, and so exchanges kidneys with another donor/recipient pair) or from a deceased individual takes significantly longer. A kidney of a healthy living donor also has the highest chance of success. While dialysis is a life saver, one of the drawbacks is it does affect the probability that a transplant later will be successful.
Q: What blood type are you?
Nucci: I’m type 0, and a type 0 can only accept a kidney from another type 0.
Q: Your story has received a great deal of media coverage, and you have quickly become the face of Polycystic Kidney Disease in the region. Do you find yourself suddenly in the role of spokesman for kidney disease?
Nucci: I’ve been around this city a long time, and a lot of people recognize who I am, so that’s bound to have helped. It’s often the case that someone who’s well known and recognized can work wonders for the treatment and awareness of certain medical conditions. Magic Johnson did that with HIV. You can shine a lot of light on certain conditions that may start to get the attention that will lead to a cure, or at least a better quality of life. I have no problem if I become the face of polycystic kidney disease, if it helps others. But for me to continue to do that, let’s face it, I need a kidney (laughs).
Q: What do you want people to know about the disease?
Nucci: At the end of the day, I hope people understand just how much of an effect it can have if they volunteer to be a kidney donor, not necessarily to me, but to anyone. And that includes pledging to donate one’s organs at the time of death. That can save lives. That can add years to people’s time on earth. It can give sight to someone who is otherwise going blind. I never thought of it. I was never an organ donor, though I will be now.
I hope that people get an understanding of polycystic kidney disease, because it’s a disease with no cure. All the medical world can do is try to manage it for you, but it’s incredible that there’s no cure. It probably needs more resources and research before there will be a cure. It doesn’t kill as many people as heart disease or cancer, but it’s still something that affects tens of thousands of people in this country and millions worldwide.
I also hope that people who find themselves in my situation never, ever give up trying to locate a kidney and find a donor. Do everything you have to do to get that done. Don’t be shy. Ask. Spread the word. Raise awareness. It can not only keep you alive, but others as well.
Q. Powerful advice to never quit. What keeps you going?
Nucci: Believe me, it’s easy to get down, and I’ve had my moments. But it’s the response from people that keeps me and others fighting. I realize I’m not alone in this. I’ve got a great family, good friends that are pushing me and encouraging me to not just back off and let this thing consume me.
Q: How can people help?
Nucci: Those who might consider kidney donation can fill out the Mass. General Hospital organ donor questionnaire at www.MGHlivingdonors.org. (My date of birth required: 5/3/52). For more information on polycystic kidney disease go to www.PKDcure.org. And the National Kidney Foundation provides information on kidney disease and organ donation at www.kidney.org. Also, please visit Facebook pages John Nucci PKD Awareness and Peggy Nucci.