In precarious health for years, the 2023 operation gave him a future, but donor shortages mean an estimated 17 people die daily on waiting lists
JOHNSTON – By late November 2022, Tommy Hardiman’s diseased heart was failing so badly that his medical team at Tufts Medical Center in Boston feared he could soon die. For months, Hardiman, a Foster resident, had been awaiting a heart transplant, a life-saving procedure that is unobtainable in Rhode Island.
“They called and said ‘get in here, pack a bag, and do not drive yourself,’” recalled Hardiman, owner of Hillview Auto Body. “But I did. I felt confident enough.” A friend came for his car later.
Hardiman, 69, had been on a waiting list for more than two years, but no donor heart had become available.
The Tufts team would do all they could to keep him stable until one was found.
If one was. The federal Health Resources & Services Administration, HRSA, reports that 17 Americans die every day waiting for an organ transplant.
After Hardiman was admitted, cardiologist Dr. Michael Kiernan asked if he was ready.
“I’m ready,” Hardiman replied.
“‘It might be a while,’” Kiernan said, according to Hardiman. “‘Because of your height and your blood type, you could be here three months waiting for a heart.’”
“Whatever it takes,” Hardiman said.
But there was a caveat. A so-called ventricular attack – in scientific terms, ventricular tachycardia, a type of sudden cardiac arrest – could kill him.
“‘We might not be able to save you,’” Kiernan said, according to Hardiman.
“I had no guarantee whatsoever,” Hardiman told Ocean State Stories. “But I’m a firm believer in God. And my mother always taught me never to look behind, always focus forward and find a solution.”
As of this March, 3,436 Americans were on waiting lists for donor hearts. Nearly 90,000 were waiting for a kidney, 9,862 for a liver, 2,054 for a kidney and a pancreas, 943 for a lung, and 832 for a pancreas only, according to HRSA, which gets data from The Organ Procurement and Transplantation Network, “a unique public-private partnership that links all professionals involved in the U.S. donation and transplantation system,” the OPTN website states.
First performed in 1967 by the late South African surgeon Dr. Christiaan Barnard, heart transplantation has evolved into a high-wire act involving state-of-the-art technology, medical professionals often hundreds of miles apart, and a person who has registered as a prospective donor — and, typically after an accident, is hospitalized but has been given no chance to survive.
Under usual practice today, the heart is removed and placed in a device manufactured by TransMedics, headquartered in Andover, Mass., that pumps warm, oxygenated blood through the organ, preserving it until it is sewn into the recipient. Nicknamed “Heart in a Box,” the device extends the time a heart can be kept “alive,” allowing for transportation over greater distances.
That, in turn, has helped increase the number of patients who can benefit.
Nonetheless, the numbers of people awaiting new hearts and other organs exceeds the number of donors. More than 46,000 transplants were performed last year, according to HRSA, but an estimated “17 people die each day waiting for an organ transplant.”
A long-term solution may lie in xenotransplantation, the placement of an animal organ into a human. But decades of research have led to only one such successful transplant: Richard Slayman, 62, who received a kidney from a genetically modified pig during an operation in March at Massachusetts General Hospital. He died this month, but the hospital said in a statement it had “no indication that it was the result of his recent transplant.”
As the weeks passed and Hardiman spent Christmas and New Year’s at Tufts Medical Center, he bonded with other patients who were awaiting hearts – and with many of the nurses, doctors and others who were caring for him. He Face Timed with his wife, Barbara, and their children, Ashley and Sean. They also visited him in-person.
He also became friends with members of the HeartBrothers, a non-profit organization “dedicated to helping heart failure patients and their families navigate the complex journey of heart failure, mechanical circulatory support, and heart transplantation,” according to its website. Founded a decade ago, its first programs were at Tufts and it has since expanded to more than 40 hospitals, including Massachusetts General and the Mayo Clinic in Scottsdale, Arizona.
Members of the HeartBrothers “were constantly up to visit me,” Hardiman said, asking if he needed anything, providing moral support, “answering questions that no one else can answer. Even a doctor said to me ‘you don’t know how easy they make our job because medically, we can give advice — but we don’t know what you’re going through [emotionally]. They do.’”
One of the HeartBrothers Hardiman met was Hamid Mahdavy, a Massachusetts resident who was in end-stage heart failure when he received a transplant at Tufts on Nov. 2, 2016. The donor was 23-year-old Joseph W. “Joey” Slaver Jr., a Livermore Falls, Maine, resident who was struck by a vehicle, according to his obituary.
“Joey is well known for his kind, compassionate, caring heart and as a young man who helped so many people; family, friends and even strangers,” the obituary stated. “Joey was strong about his passion to continue to give, and was an organ and tissue donor at the time of his passing and has already saved so many lives with his donation.”
Mahdavy told Ocean State Stories that his first encounter with Hardiman, who became a member of HeartBrothers, was “one of my visits to Tufts Medical Center. We make these visits as part of our mission to provide bedside comfort, fellowship, companionship and break the monotony of long days in the hospital.
“Obviously, Tommy was processing a lot of thoughts behind the scenes adjusting to a new normal. I maintain that most of us heart transplant patients are like ducks that appear to be calmly floating on the surface of this serene lake while under the surface we are kicking and fighting like heck to stay afloat.
“We spoke in detail about HeartBrothers, what we do and how there always was a great need for patients to volunteer and become ambassadors. From very early on in our discussion, Tommy showed great interest in HeartBrothers and becoming involved and helping out once he took care of his more urgent medical challenges.
“I believe the combination of meeting and supporting Tommy by peer-to-peer discussions and giving him an opportunity to put his great passion for helping his fellow man to work by helping fellow Heart Failure patients was instrumental in facilitating the emotional aspect of healing which ultimately supports one’s physical healing.”
As with healthcare in general, racial disparities exist in heart transplantation. The American Heart Association published research in 2021 demonstrating that “Black people in need of a new heart are less likely than their white peers to get a transplant, and when they do, they’re more likely to die afterward.”
Progress has seen since 2018, when the United Network for Organ Sharing, the non-profit organization that contracts with the federal government to manage the transplant list, revised the allocation system “to improve access to organs among the sickest patients and to reduce racial and regional disparities,” the Heart Association reported.
Still, the 2021 study co-author Dr. Sounok Sen said, “We may be moving the needle towards more equity, but at the same time, we still have more work to do to reach the goal of offering heart transplant in an equitable fashion to all patients who need it.”
Similar disparities have been reported for Hispanic people. And they are found in transplantation of other organs.
Although heart transplants are not performed in Rhode Island, kidney transplants are performed at Rhode Island Hospital. According to Carrie Bridges, Lifespan’s Vice President of Community Health and Equity, the state’s largest healthcare system is working to eliminate racial disparities.
It’s a major challenge.
“We know that patients of color — in particular, Black, African American, Hispanic, Latino and Native American — all wait longer to be approved for transplantation,” Bridges said in an interview. “So more time on dialysis before they’re even approved for transplantation. And there are fewer donors for transplant.”
The numbers are stark.
“About 35% of people with kidney failure in the United States are Black, African-American, while they are only 13% of the US population, so [they are] disproportionately represented on the kidney failure rolls,” Bridges said. “Hispanics are 1.3 times more likely to be diagnosed with kidney failure than the white non-Hispanic population. American Indians are 1.2 times more likely.
“Once you control for all the factors — do they have insurance, the severity of disease, the amount of time that they’ve been diagnosed and under treatment — once you control for all those factors, it’s race and ethnicity. And certainly there are barriers related to insurance status and access, but there are barriers also related to structural barriers we put in place in the healthcare system.”
There are two types of kidney transplantation: one using an organ from a deceased donor, and the other using an organ from a living person, often a relative, who donates one of their two kidneys. Both procedures are performed at Rhode Island Hospital, on both adults and children.
Lifespan’s efforts to close the kidney transplant gap include financial arrangements to help people with limited or no insurance along with public-awareness campaigns “among the general population to demystify and address myths, facts, and falsehoods about transplantation,” according to Bridges. “There’s education that can happen. There’s getting different spokespeople and influencers out in community settings to talk about transplantation.” Brochures have been distributed and videos and other efforts are planned, including a presence at the sixth annual Juneteenth RI Festival on June 22 in Providence.
“Lifespan’s going to be there… sharing health information, doing some screenings, things like that,” Bridges said. “I’m excited to have some information there and hopefully even have a donor or recipient join us if they can for part of the day to talk about their experience, either donating a living kidney or receiving. Again, trying to demystify and answer questions and introduce facts to the general population.”
At about 7 p.m. on Wednesday, Jan. 25, 2023, Dr. Amanda Vest told Hardiman that a heart had been found and preparations were underway to fly it, contained inside a Heart in a Box, to Boston.
The night passed and Thursday dragged on without further word.
their transplants – Submitted photo
“Three o’clock in the afternoon came and I didn’t hear anything,” Hardiman said. “Four o’clock, didn’t hear anything. Six o’clock, nothing. My wife called and said ‘what’s going on?’ I said ‘I don’t know.’”
Two hours later, Jay Tolland, a friend he’d made as both awaited hearts, came into his room.
“What’s going on?” Hardiman recalled him asking.
“I don’t think it’s going to happen,” Hardiman said.
But at about 9:30 p.m., surgeon Gregory S. Couper came into his room.
“We’re ready to go,” Couper said. The heart had arrived, and the operating room team had assembled.
The surgery lasted until about 5 a.m. on Friday, Jan. 27, when Hardiman was transferred to intensive care. Later in the day, Hardiman was speaking with nurses and doctors.
After he left intensive care two days later, his wife visited, along with Dr. Couper and Rene Davignon, “JR,” who has been employed by Hillview Auto Body for 42 years.
“I needed nothing to support the heart,” Hardiman said. “No drugs.”
His medical team, Hardiman said, was “giddy, like they couldn’t believe it.”
Said Couper: “I’ve put in over 700 hearts. And I’ve never pulled a heart out with this much damage.”
Hardiman stayed in Boston about two more weeks – “I watched the Super Bowl [on Feb. 12] in the hospital with Jay” – and then he went home to Foster. Soon, he was back at work.
But his medical challenges weren’t over.
Last July, Hardiman was diagnosed with melanoma.
“You need surgery,” his dermatologist said. “And it’s not going to be an easy surgery. It’s very deep.”
Hardiman returned to Tufts Medical Center for the operation, which was successful. After it, Hardiman said, “they did a PET scan and everything else and nothing showed up. I go to the dermatologist now every three months.”
The Foster resident attributes his survival to his faith, as does Mahdavy. “As you continue your slide into this abyss of despair and helplessness,” he said, “you suddenly have a moment of clarity. It is in this moment that many heart failure patients, reach out to their Lord and make the pledge that ‘if I ever get through this alive, I will dedicate my life to paying it forward and giving back.’ I believe Tommy, too, has made this covenant with his maker.”
In addition to hospital visits, Hardiman has raised money for the HeartBrothers. But even before his transplant, he already was giving back. During an interview, he spoke of his longstanding generosity, most of it done privately and without fanfare – not to boast, he said, but perhaps to inspire others to be charitable.
“I was always a giver. Even with my men that work for me, I take less” in salary so they can earn more, Hardiman said. “I pay for my guys’ Blue Cross 100%. There’s no charge there. I do everything I can do for these guys because I came from absolutely nothing.”
He added: “My mom always taught me to always give. She said God will repay you three times over.”
Under transplant guidelines, organ recipients can write a letter to the family of a donor, according to the United Network for Organ Sharing, which states that “many donor families and recipients find comfort in correspondence. For donor families, this sharing may help in the grieving process. For recipients, it can provide the opportunity to express gratitude and share information about progress and renewed lives.”
Hardiman wrote a letter expressing sorrow for his donor’s family and thanks for his heart and the new life it has given him. It was sent through Tufts and New England Donor Services, a federally designated organ procurement organization, to the family. As of late May, Hardiman had not heard from them.
During an interview in his office at Hillview Auto Body, Hardiman related how his son Sean, an Atlanta resident, flew up to visit him in the summer of 2022.
“We sat right here at this table,” Hardiman said. “And he said, ‘Dad, if you pass away, it will be the biggest hole in my heart. But look around. You are a great father, a great provider. You have done more than 99.9% of the people in this world. You had a full life. None of us leave here alive.’ That was from a 36-year-old kid. It blew me away.”
Editor’s Note: On May 25, 2024, Tommy Hardiman’s wife Barbara suffered a heart attack at Boston’s Logan International Airport as the couple were set to embark on an overseas vacation. She was rushed to Tufts Medical Center, where she died. Most of the interviews for this story were conducted before her passing and Hardiman consented to publication after his wife’s death. “I got my new life at Tufts and she lost her life there, but if it was anywhere else, it wouldn’t sit right,” Hardiman wrote to Ocean State Stories. “I was just happy that it ended at Tufts.”
A Mass of Christian Burial was May 23 at St. Philip Church in Greenville. “Please omit flowers, donations in her memory may be made to HeartBrothers Foundation, 225 Cedar Hill St Suite 200, Marlborough, MA 0175,” her obituary stated.
