Town of Huntington will host a Organ Donor Enrollment Day Oct. 10. File photo by Rohma Abbas
Huntington council members Mark Cuthbertson and Joan Cergol are urging Huntington residents to register to be an organ donor as the town is hosting an Organ Donor Enrollment Day October 10. Residents can sign up at Town Hall or Huntington Hospital.
New York State ranks last in the country with only 35% of registered organ donors versus the average of 50% registered across the country.
A recent study showed that 92 percent of New Yorkers support organ and tissue donation, only 35 percent of New Yorkers are registered as organ donors. Every 18 hours, a New Yorker dies waiting for a lifesaving transplant.
That means that people can wait an average of 7 or more years to receive a lifesaving transplant. Meanwhile every 18 hours, a New Yorker dies on the waiting list. Now in its fifth year, Organ Donor Enrollment Day presents New Yorkers with a convenient opportunity to make their support known and to sign up as an organ and tissue donor. This year, Huntington Hospital is hosting Organ Donor Enrollment Day as a facet of its partnership with the LiveOnNY to facilitate tissue and organ transplants.
“I can tell you from personal experience that organ and tissue donation saves lives,” Cuthbertson said. “My son, Hunter, received a bone marrow transplant a few years ago and he is doing fine today. He was lucky, his donor was his brother. Only 25% of family members are a match, that leaves 75 percent of people needing transplants to rely on the kindness of strangers.”
Cergol also spoke on her experiences.
“A family friend’s son needed a heart transplant and I watched as he became weaker and weaker waiting for a heart, thankfully that call came and he received his transplant,” she said. “Not every New Yorker is as lucky as he was, we need to bring New York out of last place and save lives.”
Doing their part to help change the statistics, Cuthbertson and Cergol announced yesterday that preparations were underway for the 3rd annual 5k Run to Save Lives to be held on Sunday April 19, 2020 at Oldfield Middle School.
The run annually brings together competitive and recreational runners with transplant recipients, donor families and organizations promoting organ donation and highlighting the need for people to enroll as organ donors. More than 250 people participated in the 2019 race, which raised $16,000 for organ donation groups.
As of Feb. 14, National Organ Donor Day, a new state law rolled out by Gov. Andrew Cuomo (D) permits 16- and 17-year-olds to enroll in the New York State Donate Life Registry when they apply for a driver’s license, learner’s permit or nondriver ID, potentially growing enrollments in New York by thousands.
Sponsored by State Sens. John Flanagan (R-East Northport) and Kemp Hannon (R-Garden City), the legislation’s altered minimum age to sign up as an organ donor, which had previously been 18, serves as a big step for New York, which currently ranks 50th out of all 50 states when it comes to the percentage of residents enrolled to be organ donors.
Kidney recipient Tom D’Antonio and Brookhaven Town Councilwoman Jane Bonner. Photo from Councilwoman Bonner
At just 28 percent, New York State is “way at the bottom of the pack” when it comes to enrollment, according to Flanagan, a strong advocate for organ donations because of his late friend, Assemblyman James Conte (R-Huntington Station), who was the recipient of two kidney transplants before losing a battle with cancer in 2012.
“[New York] has been a leader in many ways on a wide variety of issues and we should be the premiere state in terms of organ donation,” Flanagan said. “I just want to promote organ donation, and promote awareness. There are thousands and thousands of people who are waiting for transplants here in the state, kidney being the primary one. We don’t have enough people signing up, and it’s taken too long to [get here] but I think we’re moving in the right direction.”
The senator said Conte is the reason he’s a donor, and after his death, he realized he could use his own political platform to advocate for this cause and encourage others to get involved.
Like Flanagan, Brookhaven Town Councilwoman Jane Bonner (C-Rocky Point) is passionate about organ donation and takes every opportunity to raise awareness about the importance of becoming a donor when speaking publicly, regardless of the event.
“I could be at a civic event talking about town improvement projects or town issues, and I always use it as a soapbox to talk about organ donation,” Bonner said. “Roughly 125,000 people in the United States are waiting for a kidney and there are 350 million people in the United States, seemingly with healthy kidneys. If everybody who could donate, donated one, we wouldn’t have people waiting for a kidney anymore and lives can be saved.”
Bonner said that under the new law, 16- and 17-year-olds can make donations upon their death, and it includes safeguards where their parents or legal guardians have the option to rescind the decision if the minor dies before 18.
“It not only ups the amount of eligible organ donors there are to sign up and save lives, but also starts a conversation at an earlier age about its importance.”
— Megan Fackler
“Teenagers are very passionate about so many issues and I think this legislation was made because they’re employing every toy in the toolbox, knowing the state is dead last,” she said.
The councilwoman knows a thing or two about saving lives this way.
It was last April when Bonner donated her kidney to her childhood friend Tom D’Antonio, who had been diagnosed with diabetes at a young age, had suffered multiple health issues over the years and desperately needed a transplant.
“I said ‘I’ll do it, we’re the same blood type,’ and I donated blood to him when he got his first kidney transplant,” Bonner recalled.
D’Antonio was more than grateful for the donation his longtime friend made.
“I bounced back like a rockstar and I feel great, I have more energy and determination,” D’Antonio said, reflecting on the experience. “It’s my belief that there is something within a human being that takes that step and makes that heroic move to save a life; it moves me beyond a place I can easily describe. Not only did [Jane] save my life but she enriched the lives of those close to me, [like my wife].”
But D’Antonio is not a big fan of the new law, calling it “hugely irresponsible” and a “grossly inadequate response” to appease a need for more donors.
“Sixteen- and seventeen-year-olds have enough trouble making a decision about what classes to take as seniors, their minds are still developing, and I’m appalled that this is the state’s answer,” he said. “What the state should do instead is put some money and effort into organ donor awareness and make it part of the teaching curriculum in high school.”
Karen Hill, the recipient of Tom Cutinella’s heart, and his mother Kelli Cutinella. Photo from Kelli Cutinella
Alternatively, Kelli Cutinella, whose son Tom died October 2014 following a head-on collision during a high school football game, spoke in Albany to help get the law passed, and said she’s glad to see it in effect.
Tom, who wanted to register when he was 16 at the DMV but was ultimately not allowed at the time, donated all vital organs, such as his heart, kidneys, liver, pancreas, bones and skin.
“He was a giver in life and would do anything for anybody, and it didn’t surprise me that he wanted to register at 16, it was just in his nature,” Cutinella said.
The mother, who has an ongoing relationship with Tom’s heart recipient and pancreas and kidney recipient, was recently notified by a New York Burn Center that a 30-year-old man from Brooklyn had received Tom’s skin after suffering severe burns in a house fire.
“Tom lives on now,” Cutinella said. “He’s not here in the physical sense, but he is with the recipients as they go on to live wonderful, fulfilling lives.”
According to Megan Fackler of LiveOnNY, a federally designated organ procurement organization, the new law is exciting.
“It not only ups the amount of eligible organ donors there are to sign up and save lives, but also starts a conversation at an earlier age about its importance,” Fackler said. “Donor family and recipient meetings have been the most touching. There are lots of things 16- and 17-year-olds can’t do, like rent a car, get a tattoo, vote, join the army, but they can save lives.”
Residents can visit the New York State Health Department’s website at www.health.ny.gov/donatelife to get more information about organ donation in New York State, including how to register as a donor.
Brookhaven Town Councilwoman Jane Bonner speaks at the Organ Donor Enrollment Day kickoff event at Stony Brook University Hospital Oct. 6. Photo from Bonner’s office
By Rebecca Anzel
Registered organ donors are hard to come by in New York state compared to the rest of the United States, and for one elected official in Brookhaven, that’s not going to cut it.
Brookhaven Councilwoman Jane Bonner (C-Rocky Point) did not hesitate when her friend Tom D’Antonio said he needed a kidney. She decided right then, at the Huntington Lighthouse Music Festival in Huntington Harbor in September 2015, that she would share her spare.
She underwent comprehensive medical testing at the end of the next month to determine if she would be a viable donor — a blood test, chest X-ray, electrocardiogram, CT scan, MRI, psychological evaluation and cancer screening, to name a few.
“It’s the ultimate physical you’re ever going to have, and by the blood test alone several people were disqualified,” Bonner said. “For once in my life, it turned out that I was No. 1. And it worked out really, really well.”
Brookhaven Town Councilwoman Jane Bonner and her friend Tom D’Antonio after their surgeries to transplant her kidney into his body in April. Photo from Jane Bonner
The surgery was April 26, a Tuesday, at New York Presbyterian Hospital. Bonnor was home that Friday and missed only eight days of work. She said she just had her six-month checkup and she is in good health.
“Jane didn’t just save my life, she saved my family’s life,” D’Antonio said. “Donating an organ doesn’t just affect the person getting the organ — although certainly it affects them the most — it affects everyone’s life.”
Bonner said she takes every opportunity to share her story to bring awareness about the importance of being an organ donor.
“I want to be a living example to show that it can be done because it’s life changing for the recipient and only a little inconvenient for the donor,” she said.
There is a large need for organs in New York. More than 9,700 people are on the organ waiting list, and someone dies every 18 hours waiting for one, according to LiveOnNY, a federally designated organ procurement organization.
New York ranks last among the 50 states in percent of residents registered as organ donors, despite surveys showing 92 percent of New Yorkers support organ donation. Only 27 percent of New Yorkers are enrolled in the state registry, versus the average of 50 percent registered across the rest of the country.
Stony Brook Medicine and Stony Brook University hosted the Organ Donor Enrollment Day event Oct. 6, including Bonner, in a statewide effort to boost the number of registered organ donors.
“Our residents need to be reminded about the importance of organ donation,” Suffolk County Executive Steve Bellone (D) said in a statement. “Along with stressing how one organ and tissue donor can save multiple lives, understanding and debunking the social and religious myths about organ donation are also critical to turning the tides in New York as we currently rank last in registered organ donors in the nation.”
Dawn Francisquini, transplant senior specialist for the hospital, said volunteers enrolled 571 people.
“New York has a very large population, so it’s going to take a lot to get us up to where the other states are,” she said. “But we’re making progress.”
There are two ways to become an organ donor. One is to be a living donor, like Bonner. A potential donor does not have to know someone in need of an organ to donate a kidney, lobe of liver, lung or part of a lung, part of the pancreas or part of an intestine.
“I’ve been able to accomplish really amazing things, but this is a step above that. Satisfying is not even the word to describe it.”
— Jane Bonner
“Living donation is so important because not only are you giving an organ to someone, so you’ve saved that life, but you’ve also made room on the list,” Francisquini said. “So you’ve saved two lives by donating one organ.”
The most common way is by registering when filling out a driver’s license registration or renewal form to be considered as a candidate upon death. According to the U.S. Department of Health & Human Services, though, only about three in 1,000 deceased people are suitable for organ donations.
Doctors determine whether organs like kidneys, livers, bones, skin and intestines are medically viable for a waiting recipient and they typically go to patients in the same state as the donor.
Gov. Andrew Cuomo (D) signed legislation Aug. 18 allowing 16 and 17-year-olds to register as organ donors. If they die before turning 18, parents or guardians are able to reverse the decision.
“By authorizing 16 and 17-year-olds to make the selfless decision to become an organ donor, we take another significant step to grow the state’s Donate Life registry and create opportunities to save lives,” Cuomo said in a statement.
Francisquini said she thinks this new law will make a big difference. Previously, because those under-18 were not allowed to express their wishes when filling out a driver’s license form, many would not register as donors until years later when renewing their license.
Since her surgery, Bonner has shared her story in speeches, panel discussions and on social media using the hashtag #ShareTheSpare.
“I really feel like this is much better than anything I could accomplish in my professional career,” she said. “Through the support of the people that keep electing me, I’ve been able to accomplish really amazing things, but this is a step above that. Satisfying is not even the word to describe it.”
Old friend gets third organ transplant with councilwoman’s help
Tom D’Antonio and Jane Bonner spend time after a successful kidney transplant surgery at New York Presbyterian Hospital. Photo from Bonner
A Brookhaven Town Councilwoman was elected in 2007 to serve the community. On April 26, she took the idea of public service to a whole new level.
Tom D’Antonio and Jane Bonner spend time after a successful kidney transplant surgery at New York Presbyterian Hospital. Photo from Bonner
Jane Bonner, councilwoman for Brookhaven’s second district, and Tom D’Antonio have known each other for almost 40 years. Bonner said she became friends with D’Antonio’s younger brother Steven in her seventh grade Spanish class at Middleville Junior High School in the Northport-East Northport school district, which has since closed, and the families have stayed in touch ever since. D’Antonio was diagnosed with juvenile diabetes when he was 10 years old. He said the disease has “wreaked havoc” on his kidneys over the years. The 57-year-old EMT has a medical history that most would consider unlucky. He wouldn’t agree.
“I’m living proof that what doesn’t kill you makes you stronger,” D’Antonio said.
He has had three successful kidney transplants and a pancreas transplant, and survived an acute coronary thrombosis, which was a 100 percent blood clot-blockage in a vessel of his heart in 2012.
The flip side to the hard luck of requiring three kidney transplant surgeries is the fact that three times, D’Antonio had a willing and able donor who was also a match. The first time was in June 1988 when his then girlfriend Cheryl, who he has been married to for 27 years now, stepped up and donated D’Antonio a healthy kidney. He said at the time, doctors told him the chances of his girlfriend being a match were one in a million.
In 1999, he underwent a pancreas transplant, which he said at the time was somewhat experimental. The result was the formerly insulin-dependent diabetic was essentially cured. But by 2002, the diabetes had done damage to his wife’s former kidney. This time, D’Antonio’s sister stepped up. She wasn’t an option in 1988 because she had just given birth.
Everything was fine until October 2012 when the blockage caused his heart to stop for about 14 minutes while he was riding the Long Island Rail Road one day. An EMT riding the train performed CPR to resuscitate D’Antonio. Luckily, the incident occurred near the Mineola train station, which is about five minutes walking distance from Winthrop University Hospital. Doctors told him they thought he’d have brain damage if he survived the ordeal, emphasis on “if.”
D’Antonio’s brain was okay, but the heart stoppage caused damage to his sister’s kidney. He was back in a familiar position. For a third time he needed a family member or close friend to step up and offer an organ that would save his life.
‘Once I make up my mind, I’m pretty steadfast and determined. I’m a big believer in God having a plan.’ — Jane Bonner
According to the National Kidney Foundation, more than 3,000 new patients are added to the kidney waiting list every month, and 13 people die every day waiting for a kidney transplant. According to the Living Kidney Donors Network, more than 80,000 people are currently on the waiting list, where most people remain for more than five years waiting for a life-saving donation while on dialysis.
D’Antonio found himself in need of a kidney with his options exhausted. In October 2015, Bonner invited D’Antonio and his wife to meet her and her husband, John Sandusky, to join them and some friends at the Huntington Lighthouse Festival in Huntington Harbor. Bonner and Sandusky sailed their boat from Mount Sinai, while the D’Antonios took the short trip by boat from their home in Eaton’s Neck.
“We almost didn’t stop — we didn’t want to intrude,” D’Antonio said about that October day. He revealed to Bonner he was in need of a kidney once again, and told her that a family member who might have been an option was not going to work out.
Tom D’Antonio, his wife Cheryl and Jane Bonner sail on the open seas, which is where Bonner first told D’Antonio she’d like to donate her kidney. Photo from Bonner
“I said, ‘I’ll do it,’” Bonner said. Taken aback, D’Antonio suggested Bonner should think it over and maybe discuss it with her husband and family.
“John!” D’Antonio said Bonner called out to her husband across the boat. “I’m going to give Tommy a kidney!”
That was all the discussion the Bonners needed, which D’Antonio said was apropos of their relationship.
“Once I make up my mind, I’m pretty steadfast and determined,” Bonner said. “I’m a big believer in God having a plan.”
On April 26, Bonner donated her left kidney to D’Antonio in what she called a “minor surgery” at New York Presbyterian Hospital.
As that master plan has played out since, Bonner said doctors discovered two precancerous polyps that were about two years away from manifesting into colon cancer during the litany of tests she had to undergo in preparation for the donation.
D’Antonio said he’s not sure what his outlook would have been if Bonner hadn’t offered to help.
‘I’m living proof that what doesn’t kill you makes you stronger.’ — Tom D’Antonio
“I know that right now I wouldn’t be feeling as good as I’m feeling,” he said. “I was to the point, the week of and the week before the surgery, if I walked a block I’d have to stop and rest. It’s like a slow, miserable, downward spiral.”
Bonner has since shared news about the transplant on social media using the hashtag #ShareTheSpare, and plans to advocate for programs like the Kidney Paired Donation Pilot Program, which is managed by the United Network for Organ Sharing and is an option for patients with a living donor who is not a match.
“It’s more dangerous to drive to work every day than it is to live with one kidney,” Bonner said. “There’s no greater gift to give than the gift of life.”
Bonner, who missed just eight days of work, has been hesitant and uncomfortable with the baskets, flowers and cards she’s received since the surgery.
“There’s like this common element that runs through people who do that,” D’Antonio said. “They’re all like ‘it’s a no brainer.’ Clearly it’s more than that. That’s the thing that’s hard to express in words — how that makes you feel.”
D’Antonio shared what he said to Bonner in response to that hesitancy to accept thanks or praise.
Arleen Buckley donated a kidney to her husband of 43 years, Tom Buckley. Photo by Erin Dueñas
By Erin Dueñas
Arleen Buckley ticked off the places she and husband Tom had traveled to before he fell ill. The Port Jefferson couple had visited Italy, Ireland and even China, but a planned trip to Belgium last year had to be canceled after Tom’s battle with polycystic kidney disease — a hereditary condition where cysts develop on the kidneys, leading to the organ’s failure — kept him from traveling.
“He was just too sick,” his wife said. “We were lucky we could get him to the corner.”
Tom Buckley spent months undergoing dialysis three days a week, but the treatments left him weak.
“He wasn’t having a good reaction to the dialysis,” Arleen Buckley said. “I told him we can’t live life like this. It was a tough time.”
Arleen Buckley said she couldn’t bear seeing her husband of 43 years so ill. She suggested giving him one of her kidneys to resolve his health issue but he refused.
“He felt guilty. He didn’t want me putting my life at risk,” she said. “I told him I wanted to live a nice long life — but with him.”
It took months but she eventually convinced her husband to take her kidney, and in September of last year, the couple underwent the surgeries.
Arleen Buckley was up and about just three days later, and while her husband’s recovery took much longer — about six months — he said he feels great. They’re even planning a trip to Scandinavia.
“I couldn’t go anywhere, not even to the movies,” Tom Buckley said. “Now that I’m better I can do whatever I want.”
Last Thursday, April 2, the couple attended the Living Donor Award Ceremony at Stony Brook University Hospital, which honored Arleen Buckley and about 200 other kidney donors. Sponsored by the hospital’s Department of Transplant, kidney recipients presented their living donors with a state medal of honor for the second chance at life.
The ceremony’s keynote speaker was Chris Melz of Huntington Station, who donated a kidney in 2009 to his childhood friend Will Burton, who suffered from end-stage renal failure. The surgeries were successful, and Melz now works with the National Kidney Foundation raising awareness for living donors.
“I want to spark the drive for people to do good,” he said. “Giving is a beautiful thing.”
Arleen Buckley said she was happy to give a kidney to her husband, whom she has known for 50 years.
“I told him, ‘When I was 14 years old, I gave you my heart. At 64, I gave you my kidney,’” the wife said.
Dr. Wayne Waltzer, director of kidney transplantation services and chair of the Department of Urology at Stony Brook University School of Medicine, called kidney transplants a “new lease on life” for patients who are on dialysis.
“Transplants restore them,” Waltzer said. “They get back the same sense of well-being they had before they got sick.”
According to the National Kidney Foundation, 118,000 Americans are on a waiting list for an organ — 96,000 of those wait for a kidney. Roughly 13 people die daily waiting for the organ, the group said.
Stephen Knapik, Stony Brook University’s living donor coordinator, said that every 10 minutes someone in need of a kidney is added to that list. He called it an honor to work with donors who keep the list from growing.
“I’ve never been in a room with so many superheroes in my life,” Knapik said. “The greatest gift you can give isn’t a boat or a car, it’s the gift of life.”
Waltzer said that donating a kidney involves meeting certain criteria including compatible blood groups and matching body tissues between donor and recipient, as well as ensuring that the recipient has no antibodies that will work against the transplanted organ.
While he said the surgery is sophisticated, he called the science and medicine an incredible achievement.
“The immunosuppressive therapy is so good and the medication so effective that you can override any mismatches,” he said.
This allows for donors to give to loved ones that are not related by blood.
With the most active renal transplant program on Long Island, Stony Brook has done 1,500 transplants since 1981. Waltzer said that donors are doing an “amazing service,” not just to their recipient but also to one of the thousands of people who are on the waiting list for a kidney.
“There is a shortage of organs,” he said. “By donating, you are giving a chance to someone else on that waiting list.”
