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Heart transplant recipient helps others

John Acquaro 58, who had a heart transplant

John Acquaro 58, who had a heart transplant in 2007, has since become a bike racer and avid exerciser. (June 21, 2012) Credit: Linda Rosier

At about 4 a.m., John Acquaro was abruptly roused from his sleep. Groggy, squinting in the half-light of his hospital room, he discerned somebody at his bedside, speaking to him.

At first, he couldn't quite believe what he was hearing.

"We have a heart for you," the voice said. "And it's in the building. You'll be in surgery in a couple hours."

Acquaro thought he was dreaming. But even when he realized that he was awake and about to become the lucky recipient of a desperately needed heart transplant, he kept his emotions in check. "I was sick for so long, and so many things had gone wrong with me," Acquaro recalls. "I couldn't walk five feet without gasping for air. I was still fighting but starting to concede that this was the end."

It was actually the beginning.

That was April 1, 2007. Five years later, Acquaro is, quite literally, a new man; active, energetic and fit, with the cardiovascular system of an endurance athlete -- which is what he has become.

Sunday, for the fourth time, the 58-year-old retired carpenter from Ronkonkoma is slated to compete in the Aquaphor New York City Triathlon (nyctri.com), riding the 40-kilometer (25-mile) bike leg for Team Donate Life.

There will be 106 teams in the competition, which attracts 5,400 athletes who do the 1-kilometer swim, 40k bike and 10k run, individually or as part of a relay. Acquaro's Team Donate Life includes swimmer Kathy Dwyer of Manhattan, a volunteer for the New York Organ Donor Network; Shannon Kelly of Yonkers, another heart transplant recipient, will do the run.

 

'It's extraordinary'

Cheering him along the bike course, which starts and finishes in Riverside Park in upper Manhattan, will be Acquaro's cardiologist, who says she could not have predicted that he would have done this well.

"It's extraordinary," says Dr. Sun Hi Lee of New York-Presbyterian Hospital, where the transplant was done. While she stresses that many heart transplant recipients go on to lead more or less normal lives, few are able to do what Acquaro is doing. "With him, everything sort of fell into place."

That's after 20 years of everything falling apart.

Acquaro was 31 years old when a problem with his heart was found during a physical exam: He had hypertrophic cardiomyopathy. According to the U.S. National Library of Medicine, the illness is an inherited condition in which the heart muscle becomes thick, making it harder for blood to leave that organ. At first he was treated with drugs, but as the condition worsened, he was implanted with a defibrillator and pacemaker. In 1995, Acquaro went into cardiac arrest while on a job site in Riverhead. He was saved only because a police officer happened to be nearby and gave him CPR. Then, an infection developed because of the pacemaker, which had to be replaced. But the infection spread and he developed an aneurysm, which led him to Mount Sinai Hospital in Manhattan in 2001. Still, his condition deteriorated as his heart weakened, which in turn affected his entire body. At one point, there was even talk about having to amputate a leg.

Years passed with no improvement. When he arrived at Columbia University's New York-Presbyterian Hospital in January 2007, "I was at the point where I was almost too sick to receive a transplant," he says. By this point, Acquaro had kidney, liver and congestive heart failure, all from lack of blood flow. He was carrying only 150 pounds on his 6-foot frame because he couldn't eat. "To be honest, when I went into the hospital, I thought that, this time, I wasn't coming out." His name was placed on the transplant and was listed as a "1-A" patient (top priority) because he was in the hospital and would have died without the donor organ. Three months later, he heard the voice in his hospital room.

What he had -- besides the stalwart support of his wife, Karen, and two sons, both now grown -- was life-changing luck, although it meant devastation to another family.

 

The right match

While Acquaro was in the hospital, 24-year-old Shakonna Grier died three days after giving birth. Grier had sickle cell anemia. When her family was approached about donating her otherwise healthy organs, they agreed.

The right match, in terms of blood type and other factors, happened to be Acquaro, and after the transplant, he immediately responded positively to his new heart. "I felt the difference the minute I woke up after surgery. It was almost as if I could feel blood rushing through my veins," Acquaro explains.

He also realized the gift he'd been given and resolved to do everything he could to make the most of it. That included eating right and exercising regularly (he rides his bike five days a week, and also goes to the gym five to seven days a week) and dutifully taking medication (25 pills daily) to keep him from rejecting the heart, keep it healthy and keep infections at bay. But in Acquaro's mind, it was also his responsibility to help ensure that others might have the same chance he did, and so he began fundraising for the New York Organ Donor Network (savelivesny.org).

Tomorrow's triathlon is part of that effort. Since he decided to try the tri in 2009, he has raised about $70,000 for the organization.

"Everybody's grateful for the transplant in their own way," says Lee. "John takes that and turns it into something big. He spends every waking moment sort of dedicating himself to this now. And he's gotten a lot of heightened awareness. That's very important for the transplant program. The more people are aware, the more likely they are to become donors."

Still, as grateful as he is for his second chance, there were some mixed emotions. "The hardest part of the transplant was that some young girl had to die for me to live," he says.

Through the Organ Donor Network, he was able to contact the young woman's family to express his gratitude. At first there was no response from the Griers.

"To be honest, the very first time I heard from him, I said, 'Oh, that's great that he's doing well,' but I was still in my own grieving process, so I didn't respond right away," says Tanisha Grier, Shakonna's sister, who lives in West Orange, N.J.

 

Keeping himself healthy

But eventually she did respond, and a close friendship has developed between them. What helped cement it is that, after Acquaro finished his first NYC Triathlon in 2009, he sent the family his finisher's medal. "That meant a lot to us," Grier said. "I appreciate he's taken this second opportunity in life. He's doing things my sister wishes she could have done."

Acquaro, who has added 40 pounds to his biker's body, devotes his life now to keeping himself healthy -- and helping to raise money and awareness about organ donation. His participation in the triathlon and other races is a bonus. "I'm not really a fast cyclist," he says. "Just to be able to do this is like a miracle to me."

When his bike riding partner, Michael Kaziewicz, 65, had to have a kidney transplant, Acquaro was with him almost every step of the way. "He gave me courage," says Kaziewicz, who lives in Bayport. "He's very upbeat, very happy to be with you. That's the way I think you have to approach life."

Recently, Acquaro was back in the hospital for three days when there were concerns about his immune levels. Everything checked out OK, however, and he was back out riding his bike a few days later. Still, he knows that few transplant patients survive more than 25 years after getting a new heart. "My goal is to be one of those [25-year] guys," he says. "But I don't really think about that. I just went through five of the greatest years of my life, so if I died tomorrow, I wouldn't be too upset."

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