As best he can remember, it started at age 37, in 1999, when he worked at a meat-packing plant.
He came down with a cold one week, and it stuck around like a stray cat.
“It got worse and worse,” he said. “I couldn’t breathe.”
He went to the emergency room. They told him it was probably a touch of pneumonia. He went home, but the cold persisted. He went back.
That’s when Perry Charleston knew something was wrong with his heart.
“My mom actually kind of diagnosed it,” he said. “She was the one who said where they should look. She’d been through it a few times before me.”
‘I’d made peace with it’
When doctors talk about health risks, they talk much about family history. In the Charleston family, it’s a history laden with warnings.
“My dad, he died of congestive heart failure when I was 3 years old,” said Perry, now 53.
Perry’s twin brother, Terry, was diagnosed with heart disease at age 19. His older brother, Roosevelt, a pastor, also had severe heart problems. Both brothers would die shortly after Perry learned of his own disease.
“My twin brother, he died at about age 39 of congestive heart failure,” Perry said. “And my oldest brother, he died at age 49 of congestive heart failure.”
Perry’s symptoms mirrored those of his father and brothers. He spent much of his early 40s trying to cope with his predicament.
“Physically, I felt like I was tired and drowning,” he said. “I couldn’t catch my breath, I couldn’t go up a flight of stairs. I was just tired all the time.”
Doctors told him he had dilated cardiomyopathy, a disease in which his weakening heart couldn’t pump enough blood to support his body.
He took medications for about five years, but the grim reality of his condition always loomed.
Genetics, he assumed, was authoring his story.
“I’d made peace with it,” Perry said. “I had really made so much peace with it. I figured I wasn’t going to make it past 50. I had to make peace with that.”
No going back
But then he met Michael Dickinson, MD, Spectrum Health’s section chief for advanced heart failure.
“When I met him, he immediately threw a wrench in all my plans,” Perry said. “He told me, ‘This is not a death sentence. There are a lot of other options there for you.’”
When Dr. Dickinson joined Spectrum Health Medical Group in 2006, the hospital system had yet to become an organ transplant center. He is now Spectrum Health’s medical director of heart failure and heart transplant.
Perry was one of his earliest patients.
“It’s not exactly clear why his heart got weak,” Dr. Dickinson said. “It happens to people for unknown reasons. We thought maybe his was familial … He maybe had a gene he inherited and because of that, his heart weakened over time.”
In September 2008, Dr. Dickinson implanted in Perry a biventricular implantable cardioverter defibrillator.
“It’s a device that not only monitored his heart, but also paced his heart to try to provide more organized activity in his heart, to hopefully make him feel better,” Dr. Dickinson said.
It didn’t work like they had hoped. A heart catheterization soon revealed Perry’s heart simply could not pump enough blood to keep him alive.
“He would not survive unless we did something else,” Dr. Dickinson said.
In June 2009, Dr. Dickinson prescribed Perry a continuous IV infusion of Milrinone—a drug that makes the heart beat harder—with an understanding it was a bridge to the next treatment.
The IV drip, Perry said, reminded him “what good felt like.” He could climb stairs, shower and shop without feeling winded.
“We were discussing transplant at this time, too,” Perry said. “One of the things Dr. Dickinson told me was, ‘Once you go on that IV drip, there’s no going back.’”
A new life
It was effectively a three-step process, bookended by the IV drip and the heart transplant.
The middle step: the left ventricular assist device, or LVAD, an artificial pump that is surgically attached to the heart in an open heart surgery. The LVAD takes blood from the left ventricle and pumps it to the aorta, Dr. Dickinson said.
It doesn’t replace the heart, it just helps a weak heart pump blood efficiently. It’s powered by an external battery, connected by a cord passing through the abdomen.
“I was really scared at first,” Perry said. “When they explained it me, I thought, ‘What? You’re going to put what, where?’ But Dr. Dickinson explained things to me, very well.”
Coinciding with this, Spectrum Health was working to become a hospital system that could implant LVADs and, eventually, perform organ transplants. Spectrum Health doctors performed their first LVAD implant in April 2009.
Perry’s was installed seven months later.
“I was feeling great immediately,” Perry said. “Once we got past the surgery, I was up on my feet. I was going to rehab three times a week. I’d walk on the treadmill for an hour or so a day.”
The LVAD improved Perry’s heart function, ultimately strengthening his other organs to withstand a heart transplant. It’s an electrical device, however, which meant he could not submerge himself in water—no bath, no shower, no swimming.
“You actually ran on batteries,” Perry said. “At night you’d plug it in, during the day you’d carry your batteries with you.”
The LVAD helped his heart pump blood for about 14 months, right up to the day of transplant.
Spectrum Health formed the Richard DeVos Heart & Lung Transplant Program in 2010.
Perry was one of the first half-dozen patients to undergo a heart transplant in the program, which is now led by Asghar Khaghani, MD, who performed Perry’s surgery, and Dr. Dickinson, who is the program’s medical director.
The surgery itself lasted about five hours. His blood pressure plummeted during surgery, and he also later suffered kidney problems, all of which demanded intense monitoring.
“It was rather frightening for all of us, but ultimately he survived that and recovered,” Dr. Dickinson said. “He’s done very well post-transplant.”
‘Live your life’
Nine months after his heart transplant, Perry and his then-girlfriend, Brenda, bought a house. A month later they married. They now have two children: Perry Jr., 9, and a daughter, Ashanti, 2.
Spectrum Health’s organ transplant program has since performed 61 heart transplants.
Perry said he’s simply grateful he’s in that group. For a while, he kept trying to think of how he could thank Dr. Dickinson and the transplant team.
The doctor always told him the same thing: “You want to thank me? Live your life.”
This is perhaps the most notable aspect of organ transplants today. The quality of life for patients, post-transplant, is vastly improved, Dr. Dickinson said.
“We don’t do this to keep people alive,” the doctor said. “We do this so people can live.”
Perry said he has always asked the parishioners at his church to pray not just for him, before and after surgery, but for the family of the person whose heart he received.
“In order for that to work for me, and work successfully, somebody else’s family had to go through a tragedy,” Perry said. “Those are the people I wanted them to pray for. That’s where I wanted those prayers to go.”
With a stranger’s heart in his chest, he hasn’t lost that familiar feeling.
It’s unmistakable: A love for life.
“I just look at life totally different,” Perry said. “Maybe because I almost lost it. And yet, here I am. I’m still here.”