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3 years after transplant, Long Islander's on a mission for organ donation

Heart transplant survivor Ken Abbott of Centerport, 54,

Heart transplant survivor Ken Abbott of Centerport, 54, works with LiveOnNY, an organization that coordinates donor transplants, at the Office of the Nassau County Clerk in Mineola on Dec. 11, 2019. Credit: Barry Sloan

Gratitude seems to come naturally to Ken Abbott: He’s thankful for the medical team that got him through his heart transplant and for the donor who gave him a second chance at life.

Abbott, 54, of Centerport, is also grateful for his blood type (A-positive) and self-proclaimed smaller stature.

“Those two factors helped to contribute to my not waiting as long as most people for a heart transplant,” he said.

His transplant doctor, he recalled, explained to him and his two brothers that because of his height, Abbott would be able to choose from a bigger pool of potential donors, from women to adolescents, and that his wait time wouldn’t exceed six months.

“It was like the first time the three of us — we’re all 5-4 — and it’s like, ‘yeah, it’s good being short for something.’” Abbott said.

Failing a stress test

A science teacher at Grand Avenue Middle School in Bellmore, Abbott said he believed he was in fairly good health — until he failed a July 2005 stress test, a birthday present from his wife, Eleanor, for his 40th birthday.

Abbott credits Eleanor for pushing him to investigate the source of his frequent coughing spells, the impetus for the test.

“I wouldn’t be here without her,” he said.

After the stress test, Abbott underwent a battery of tests, resulting in a diagnosis of sarcoidosis, believed to be an autoimmune condition that can attack different organs.

“They warn you that it could affect different systems. We didn’t think it was going to have heart complications with it,” Abbott said, adding that he was prescribed medication to control his condition.

For five years he was asymptomatic, until a routine EKG in 2011 picked up an arrhythmia. Soon after, he was diagnosed with cardiomyopathy and ventricular tachycardia, conditions that required him to have an internal pacemaker implanted. In the spring of 2016, his stamina diminished precipitously and over the next few months, his health declined to the point where his heart was just barely pumping blood through his body. In July 2016, the doctors implanted a left ventricular assist device (or LVAD), which required him to carry a battery pack, constantly change dressings and made him prone to infections.

“It really alters your life,” Abbott said. “You’re better off with a transplant. Your quality of life is better.”

Six months after the LVAD was implanted, Abbott got the call for a heart transplant and underwent surgery at The Mount Sinai Hospital in Manhattan on Dec. 23, 2016.

More fit than ever

Before his surgery, Abbott noted that he played softball, coached tennis and wrestling at school, and intermittently went to the gym, “but life, and family and job and coaching came way before my making sure that I was finding the time to exercise regularly,” he said. “I was active, but I wasn’t training.”

With his LVAD in place, Abbott walked daily to build strength for his impending transplant. After the transplant, he spent three days in critical care, after which he did physical therapy, walking as much as he could. By the time he left the hospital 12 days post-surgery, was walking about 5,000 steps a day.

A marathon runner, Dr. Sean Pinney, director of Mount Sinai’s advanced heart failure and cardiac transplant program, explained that the heart is a muscle that needed to be worked, Abbott recalled.

“It wasn’t necessarily what my wife wanted to hear, but it sort of, in my mindset, gave me the impetus to continue pushing myself to get to the point where I could go longer and work harder,” he said.

“I actually talked to the doctor and asked him to tell him to stop,” said Eleanor, 54, a science teacher at Wantagh High School, who was concerned her husband was doing too much exercise after the transplant.

Once home, Abbott got a treadmill and an elliptical to exercise indoors during winter. By February, he was averaging 16,000 steps a day.

He was back to work in April 2017 and participated in the 2018 Transplant Games in August in Salt Lake City, taking fourth place in the virtual triathlon — which takes place over two days — for track and field events (men’s long jump and 1,500-meter run), 500-meter swim, and 20-kilometer bicycling.

These days, Abbott said he exercises daily, taking 30- to 50-mile bike rides on weekends and working out an hour a day on an elliptical or bike trainer weekdays. He goes for regular checkups with a pulmonologist to monitor his sarcoidosis, currently asymptomatic.

Dr. Noah Moss, an advanced heart failure cardiologist at Mount Sinai in Manhattan and Mount Sinai South Nassau in Oceanside who has treated Abbott since June 2016, said he is quite impressed with Abbott’s investment in getting back into shape.

“After a period of recovery, he really did jump back into it. He’s doing more than most people who’ve never even had a heart problem in their life.”

An advocacy retirement

Since his transplant, Abbott has become an ambassador for LiveOnNY, the federally funded organ procurement organization in the metropolitan area, speaking to groups at various venues to encourage them to consider organ donation and discuss it with their loved ones.

“If you’ve never had that conversation, then if something happens and nobody knows what your wishes are, then nobody’s going to follow what your wishes are,” Abbott said.

Once he retires from teaching in June, Abbott expects to increase his advocacy for LiveOnNY. He also plans to compete the next month in the 2020 Transplant Games at The Meadowlands.

“My goal is really to become a speaker that goes into science or health classes to talk to students about transplants,” Abbott explained.

“The main thing about Ken is his commitment to exercise and activity despite all these cardiac problems and, two, his commitment to giving back to the transplant world and helping raise awareness,” Moss said, adding that Abbott has also spoken to patients in similar medical situations to offer them insight and encouragement as they go through the LVAD and heart transplant.

Noting that he was saved by a stranger who’d decided to donate his organs, Abbott said, “He saved my life and the lives of two other recipients. I have returned to health, and I am trying to use my experience and story to educate people about how important and effective transplantation can be.”

“We really are lucky to have him,” Safiya Raheem, director of community government affairs for LiveOnNY, said of Abbott. “He’s an incredible volunteer, an incredible member of our community.”

Advocacy around organ donation is needed in New York, which ranks last among the 50 states in the percentage of residents enrolled as organ donors, noted Raheem.

“However, we’ve made great strides — there are now 6 million people on the New York State organ donor registry, up from 2018's 5.5 million,” she said.

"Volunteers like Ken act as incredible advocates out in the community,” said Scott Wohl, senior manager of community and government affairs for LiveOnNY. "They are able to educate their friends, family and neighbors and help raise awareness about the power of organ donation. "The volunteer program is a key part of the organization's mission, because statistics alone don’t resonate with potential donors, Raheem said. “When people are able to tell those stories that the following year that they can celebrate their daughter’s birthday with them, those are the stories that people connect with. And we find that to be the most impactful and helping people to understand why this is such an important issue.”

Abbott said he feels lucky that he didn’t have medical complications (such as diabetes) and, at 51, was fairly young to undergo a transplant, both factors helping to expedite his recuperation.

He also credits his mental outlook for aiding in his recovery.

“I never really got discouraged,” he explained. “I always kept a positive outlook. I was pretty darn stubborn and resilient. I always had an option left and I kept pursuing whatever option that I could.”

Still, Abbott understands that attitude alone would not have saved him. Recognizing that more organ donors are needed, he plans to increase his volunteering for LiveOnNY from the current eight to 10 events a year to at least two events a month once he retires. In addition, he said, he is working on a presentation to use with high school students.

"I know that I have been truly blessed by the compassion extended to me by my donor and donor family. I would not be here to share my story unless they had chosen to save a life through donation," Abbott said, adding, "The more information we can share about transplantation and organ donation, the easier it is for people to make the choice to save a life."

By the numbers

10,000 people in New York state awaiting lifesaving organ transplants

39 percentage of people in New York State registered as organ donors (compared with 56% nationwide)

8 number of lives one organ can save

3 to 5 number of years people in New York wait for transplant (compared with 1 to 2 years nationwide)

Register to become an organ donor at the Department of Motor Vehicles, when you register to vote, or visit LiveOnNY.org.

Source: LiveOnNY

Strategies for recovery

Dr. Alan Rozanski, professor of medicine at Mount Sinai’s Icahn School of Medicine and a cardiologist at Mount Sinai-St. Luke’s Hospital, noted these strategies that can help recovery from an illness:

  • Find a sense of meaning or purpose. For example, Christopher Reeve turned his paralysis into a mission to find a cure for it. “Either you find a purpose to deal with it or the suffering and the difficulty swallows you,” Rozanski said.
  • Social support can be a tremendous source of vitality, energy, strength and optimism. “It is so much more difficult to go through anything in life … when you have to travel that path alone,” Rozanski said.
  • Exercise can be beneficial — physically, psychologically and spiritually.
  • Work toward acceptance. Coming to terms with your condition can help you deal with it.
— Arlene Gross

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