Father's final words to his dying son!
Heart Transplants Passed from Father to Son
At 22, Doug Lyons found out he had cardiomyopathy and would need a heart transplant. Twenty-five years later, his son Porter received the same diagnosis.
By Jaimie Dalessio Clayton
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FRIDAY, June 15, 2012— Many fathers and sons have a bond forged by genetic similarities, like body build, temperament, and artistic abilities.
For Doug Lyons, 48, and his son, Porter, 18, the bond goes beyond physical and personality traits. Both know what it feels like to get a new heart.
The Garrettsville, Ohio, pair both have a genetic malfunction of the heart, called cardiomyopathy, or enlarged heart. When that happens, the heart can't pump blood through the body as it should. Symptoms include persistent tiredness and shortness of breath.
But they didn't always know they shared such a bond.
Let's rewind 26 years. Doug had just started dating his future wife, Karen, when the fatigue and night sweats started. He felt fine, only tired. But when he could barely walk from the house to the car, he knew he needed to go to the hospital.
Doctors diagnosed Doug with cardiomyopathy. The condition weakens the heart, making it harder for the vital organ to do its job: pump blood through the body. They transported him to the Cleveland Clinic, where doctors placed him on a regimen of drugs to keep his heart pumping as effectively as it could.
"Ultimately everyone knew I would need a transplant at some point," he says.
So Doug returned to work, Karen stuck around, and the couple wed in April 1987. All the while Doug went in and out of the hospital — until the fall of that year. This time when Doug entered the hospital he was too weak, his heart was too weak, to leave.
Doug spent his hospital stay on and off the heart transplant list. "It's a Catch-22," he says of needing an organ. "You have to be sick enough to get one but healthy enough to receive it. It's interesting how that kind of works."
An assist device, the earliest version of one he'd hear about again years later, kept blood pumping through Doug's body for 31 days until doctors found a heart for him, in November. Doug recovered. Life returned to normal. He and Karen started a family.
Similar Symptoms, Different Lyons
Looking back, the Lyons realized that Porterdidsleep a lot.
"He'd come home after school and take a nap until dinner, and I thought okay, that's cool. We always wrote off his tiredness as the habits of a typical overachieving teenager. He had a 4.0 average, was an Eagle Scout, always doing stuff," Doug says. "But when he was home, he was sleeping."
That outlook changed on Christmas Eve 2011. "He said, ‘Dad, I can't get my heart to stop beating so fast,'" Doug says. They rushed Porter to the hospital. There, doctors diagnosed him with an enlarged left ventricle (a type of cardiomyopathy). His lungs were filled with fluid. His body was shutting down. He was air-lifted to a familiar place for Doug and Karen: Cleveland Clinic.
Everything happened much quicker for Porter, a testament to better medicine and organ donor awareness, according to Doug. "Donor awareness is so much more out there nowadays. It's almost one of those chic things that people think of. It's "in" to be a donor," he says.
By the Wednesday between Christmas and New Year's, doctors had put Porter on the transplant list. A version of the same device that had kept Doug alive 25 years earlier was now keeping his son alive. Called ECMO, the device acted as his heart and lungs until he could get a new heart. By New Year's Eve, they had found a heart to replace Porter's failing one.
"That's the roll of the dice, whether you'll be able to get a heart, and you want a heart of really good quality," said Nicholas Smedira, MD, who treated Porter, told Cleveland Clinic. "Especially in a young person, you don't want to skimp on the selection."
While Porter recovered, he and his teachers used Skype and house calls to maintain his valedictorian status. He returned to school in mid-April.
All in the Family
If Doug had been diagnosed with cardiomyopathy today, doctors would likely perform genetic tests for heart disease. Today, researchers know many cases of cardiomyopathy are linked to genetics. But back in the '80s, "genetic testing wasn't even on roadmap," he says. Instead, doctors told him a virus had caused his condition.
When Porter exhibited the same medical issues, it seemed obvious that genes were involved. The Lyons tested their other children. Jessica, 17, has no signs of the gene, but Harper, 9, does. Doug says their oldest daughter, Courtney, 24, promises to get tested within the month. Doctors are watching Harper, hoping that the right treatment eliminates the need for a future heart transplant.
"It definitely is genetic. We call these familial cardiomyopathies," Dr. Smedira told Cleveland Clinic. While Smedira doesn't know the exact nature of the genetic defect that affects the Lyons family, "the hope for the youngest sibling, Harper, is that we can give medications and keep an eye on it and retard the progression of the cardiomyopathy, or heart failure, for as long as possible."
Porter: Feeling 'More Awake'
So what did it feel like, getting a new heart? For Doug, who spent more than a year feeling sick and tired, it's "the wonderful feeling of being able to breathe and walk and live again without this feeling of fatigue and tiredness." Porter says he feels more awake. "Before I was taking tons of naps, and now I don't find myself needing naps. Only from time to time if I wear myself out. I'm much more active mentally."
Porter also looks at his dad differently. "Before, I knew he had a heart transplant but I wasn't a part of that whole thing when it was going on. Now that I've gone through what he went through, it's heightened our bond and made me be more connected to him in that way," he says.
At graduation earlier this month, Porter's valedictorian speech carried a little more emotional weight than the speeches his classmates delivered. While they peppered theirs with jokes and memories, Porter talked about the power of community. "My community really came together for me in those weeks.
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