LI Newsman Shares His Story In Hopes Of Finding Live Kidney Donor

EAST END, NY — A beloved journalist on the East End, who has spent years telling the stories of fellow community members facing some of their darkest hours, is now confronting his own serious health challenge — and needs help.

Bill Sutton, 56, the managing editor for The Express News Group, which includes the Southampton Press and the East Hampton Press, first turned to social media in October to share his own story — he desperately needs a new kidney and, as the clock ticks, he's reaching out with the fervent hope of finding a live donor.

"There are over 90,000 patients waiting for a kidney transplant in the United States," Sutton said. "Unfortunately, I’m one of them. I have kidney disease and will need a transplant. I’m on a list. But, unfortunately, the average wait time for kidneys from deceased donors is 3 to 7 years. Living kidney donation can help significantly reduce the wait time, and a living kidney donation can significantly increase the chances of a successful transplant."

It wasn't easy for Sutton to open his heart in such a public forum.

"This is a difficult post to write," he said. "If you know me, you know I can be a pretty private person, especially when it comes to my health. And a public post asking for a kidney donation is incredibly awkward. But here we are."

During recent conversations with friends and family — as well as with the transplant team at Stony Brook Hospital — Sutton said he was encouraged "to at least share where I’m at with this, in case there is someone who isn’t aware, but would consider a donation."

And, with his trademark concern for others, Sutton hopes by sharing his own journey, he can educate and, in the process, save lives.

"At the very least, I would hope that this puts a face on the need to sign those organ donation cards on your drivers' licenses. There’s a lot of people who could benefit."

In recent days, Sutton updated his many friends and colleagues on Facebook, explaining that he was home after spending some time at Stony Brook Southampton Hospital. "All is good, but it looks like I’ll have to start dialysis sooner than we had hoped."

Speaking with Patch from his home in Riverhead, Sutton said he'd undergone emergency dialysis in the hospital for two days, then begun dialysis on an outpatient basis in Hampton Bays.

"I'm going to go have it done three days per week, three hours per day," he said. "It'll keep me going, hopefully, until I can get a kidney. It's a lot, but I'm grateful that I can do it and it's making me feel a lot better. I dodn't realize how sick I was feeling, really. I was drowning in my own fluid. My lungs were full and my entire body was swollen with excess fluid that the dialysis is now removing as it filters my blood. So far, they've removed 6 liters of fluid. I've lost 15 pounds in fluid weight alone in the past few days."

And, Sutton said, the urgency in his condition has led to his placement on the "active" list for a transplant. "Hopefully, that will happen," he said.

Ever positive, Sutton said he has nothing but gratitude for the many who've helped him as he's faced new challenges.

"I'm really grateful for the great medical care that I've been getting from the doctors at Stony Brook Southampton and Meeting House Lane Medical. They have been exceptional and give me great hope that I'll eventually get through this odyssey that I've been on for the past few years," he said.

Speaking with Patch in recent months, Sutton described the reality of living with kidney disease. He had a procedure to create a fistula in his arm, connecting a vein and an artery to facilitate dialysis.

The need to find a living donor is urgent, Sutton said. Without a living donor, it could take a few years to find a deceased donor. "The doctors aren't sure I can wait two years, so that's why we began dialysis while waiting for a donor."

His kidney disease, Sutton said, is the result of years of Type 2 diabetes and hypertension. "While these are being controlled, they take a toll on the kidneys," he said.

Over the years, Sutton said he'd seen his numbers go up slightly and was told to monitor the situatio and stay hydrated. But about two years ago, "my numbers really spiked." He saw a nephrologist and underwent a battery of different tests to determine the cause. The doctor determined that Sutton had scarring on both kidneys, which were functioning at about 15 percent each, he said.

"I was told that the best course of action was an eventual kidney transplant," Sutton said. "When the doctor first said those words. . . Oh, my God. It was just a complete shock."

When he was growing up, there was a shroud of mystery and fear around the issue of tranplants, Sutton said. "It was this big thing. Now, they've been doing transplants for 75 years; it's not as big of a deal. It's major surgery, and there can certainly be complications, but it's not like it was, when I was growing up."

Despite the initial rush of emotion, Sutton met with his team at Stony Book, where he armed himself with information and research, ready to face the battle in the months ahead.

"When you have surgery, its three to four days in the hospital and some followup. Yes, you need to be careful, because you are put on anti-rejection medication, so you're a bit compromised — but people have successful transplants and go on to live full lives. Obviously, that’s my goal."

Describing the emotional impact of the news, Sutton said: "I was probably in denial for a couple of months. I was very shy about talking to people about it. And everyone kept telling me, 'You need to find a donor.'"

But the words didn't come easily, Sutton said. "It’s so awkward to bring it up. How do you have that conversation? At first, I thought, 'I’m certainly not going to ask people to be donors.'"

However, through conversations with family and friends, he began to have a new outlook. "They encouraged me," he said. "They said, 'You never know if people are out there that would want to donate.' I talked to one person that wants to get tested. I was told, 'There are going to be people who will want to be tested — who will want to help you out.' That's humbling."

He was also told that there are some who might have wanted to donate in the past — perhaps to give thanks for a donation that saved their own loved one's life — but the time may not have been right. Now, that person might be ready to donate — but in order to make that life-saving connection, Sutton's message needed to be shared.

After some time had passed, Sutton felt comfortable enough to put the post on Facebook, asking for help in finding a live donor. "Before that, it had felt like a secret," he said. "It was certainly no secret but it wasn’t something that I was talking to everyone about. But finally, I felt it was time to really make it public and let people know that this is what I need."

When told by some that he was brave, Sutton paused. "I don’t know if it was brave. At this point, it’s just a necessity."

The prospect of being on dialysis for a number of years is really daunting, he said. "While I feel I'm a strong person and I could certainly survive that — nobody wants to do that. It’s three days a week and it makes you very tired."

Sutton is striving to maintain stability in a world that's shifted dramatically. "My goal is to live my normal life," he said. "I don’t want to quit my job, I don't want to retire, I don't want to go on disability. I want to keep working. I want to keep being productive — and I want stay positive about it."

The quest for a living donor keeps him steadfast, Sutton said. "That's my hope," he said. "Miracles can happen."

Sutton said initially the pain was not greaat, but he tired easily. "Some people don’t even know they have kidney disease until they go into complete kidney failure and end up in the hospital. I’m grateful that they caught it through the blood tests when they did, so that I can be prepared. As dialysis begins, we can do that in a planned and thoughtful way," Sutton said. "My medical team can help me to prepare. While we hope and pray for a living donor, we’re prepared for other eventualities, as well."

When asked how he'd feel, if a living donor were to be found, Sutton's voice broke. "I would be so grateful," he said. "I can't imagine the selflessness of that kind of gift. I'd be so appreciative, and my friends and family would be appreciative, as well."

Should someone want to donate, Sutton said he would encourage them to get in contact with the transplant coordinator at Stony Brook "and see if we can make a match," he said.

And, if a match is not immediately found, just raising awareness about organ donation — about signing a driver's license to become an organ donor — is critical, he said. "I just want to make sure to encourage people to make sure they’re organ donors and to educate themselves on how to do that."

Donating an organ is a gift that touches countless lives and families, Sutton said. "It's just amazing."

Reflecting, Sutton said: "I’m not done yet. I think I have a lot left to do — and I just want to keep living a healthy, happy, productive life."

Sutton said he turned to social media because he's seen firsthand how one post can change everything. "I’ve seen it a million times, where miracles happen — because people put something out there on social media. We get a dramatic response from the community we live in."

It's not the first time the community has wrapped their arms and hearts around Sutton, to help him face enormous obstacles. In 2017, he was severely injured in an accident and saw clearly the power of community and love. "We see people helping people. It's a wonderful community that we live in."

But, he said, he also wanted to utilize social media to educate about the importance of organ donation. "That's a gift in itself," he said.

Describing the emotional whirlwind, Sutton was candid. "It's been daunting. When they first said the words 'kidney transplant,' you certainly face your mortality. Even though everyone is saying, 'You'll get through this,' you still wonder. You question, 'Am I going to survive this? And am I going to be able to live a regular lifestyle?' I'm not ready yet to be retired, or to be disabled. So all those questions floated around in my head."

It's been almost two years now, and Sutton said he's striving to look forward with hope. "You try not to fall into the depression; you try to stay positive and optimistic. I think I’m pretty good at that. And at the times when it’s just been really, really daunting. I think, 'I’ll get through this.' When you stay optimistic, it makes you stronger."

The hardest part, Sutton explained, is the "not knowing. So, I need a transplant. Am I going to go on dialysis, how long will I be on dialysis, am I going to have to wait a year for a donor? Three years? What is my life going to be like? All these unanswered questions."

He added: "If I could find a living donor and have the surgery, it’s certainly not an end of the journey but it puts a period on it — to the extent that it ends some of the wondering. Then, it's 'This is how we’re going to move forward', rather than wondering. It's a direction."

Sutton has a message, in advance, for whoever considers becoming his donor: "Thank you. It’s a precious gift and I can’t imagine the generosity that it takes to be willing to do something like that. Whether that person is a match or not for me — I so appreciate the sentiment."

Stony Brook Medicine said that, according to the National Kidney Foundation, about 26 million Americans have chronic kidney disease. More than 100,000 people are on the waiting list for a kidney transplant. "Being that the wait time for a kidney from a deceased donor averages 3 to 7 years, living donation is an increasingly important option," the Stony Brook site said. "What makes it even more attractive today are the excellent safety and success rates for living donor transplants."

To date Stony Brook has performed over 630 transplants using living donors, and that number is growing, Stony Brook said. Between 2023 and 2024, "an impressive 25 percent to 3 percent of our kidney transplants came from living donors."

To be considered as a living donor, download and complete the following questionnaire. Once complete, please either fax it to 631-444-3831 (Attn: Living Donor Program) or mail it to the following address:
Stony Brook Medicine
Department of Kidney Transplant
Living Donor Program
101 Nicolls Road
HSC Level 19
Stony Brook, NY 11794-8192
For additonal information, click here

"If you have any questions and would like more information, feel free to call the Stony Brook kidney transplant department at 631-444-2209," Sutton said. "They’d be happy to answer any questions — as would I."