How heart failure gave a West Virginia native a new calling.
WRITTEN BY SUSAN JOHNSON
Greg Ruf was riding high in spring of his senior year at Williamstown High School in Wood County. He had just won the 3,200-meter race at the Gazette Relays in Charleston, and he was training hard to prepare for the State Track Meet. It was 1982.
Then it happened. “My heart started beating like crazy,” he says. “I’d never felt anything like it.” A quick visit to the doctor resulted in the worst news a teenage track star could imagine: He had cardiomyopathy. His running career was over.
Forty-two years and a heart transplant later, the Columbus, Ohio, resident now runs two nonprofits dedicated to raising awareness about a deeply misunderstood disease. Greg Ruf is the founder and executive director of the Dilated Cardiomyopathy Foundation, or DCMF, as well as the Genetic Cardiomyopathy Awareness Coalition, or GCAC.
Cardiomyopathy is essentially heart failure, Ruf explains. Unlike coronary artery disease, cardiomyopathy in its many different forms is essentially diseased heart muscle. Ruf learned all this the hard way.
“After high school, I continued to exercise and enjoy good health until I had to go for a physical for an insurance policy.” A physician’s assistant discovered that Greg’s heart blood output, called “ejection fraction,” was only 38%. A normal heart’s ejection fraction is 60%. His heart was very sick.
Over the following decade, he would be treated by the Cleveland Clinic and Ohio State University Ross Heart Hospital with drugs and implanted devices designed to keep him alive. Nothing, though, can reverse the damage of DCM. By 2020, his heart output was only pumping at 20%. “At this point, you either do something or you die.”
So Greg was put on a heart transplant list. In 2021, he traded his badly diseased heart for a donated one.
Ruf had spent his career as an entrepreneur and executive coach so, when life gave him some lemons, he opened a lemonade stand. He founded the DCMF in 2018. That’s when he learned from his doctor that—unlike almost every disease on the planet—heart failure really had no patient support group. “I had the skills and training,” he says, “and now I had the calling.”
Half of patients with cardiomyopathy are predisposed because of a genetic mutation. That mutation only needs some external stressor, like obesity or a heart attack or even too much exercise, to make the patient sick—indeed, three men in Greg’s family had died from heart failure. No one, including most cardiologists, seemed to know this.
So in 2022, Greg expanded his work to create a coalition of patients and practitioners dealing with the various types of cardiomyopathy. The goal of that consortium is to get more people tested for the genetic mutation and more people into research studies.
Ruf hopes his work educates patients about how to talk with health providers about their hearts. “Like me, so many people go undiagnosed.” He recommends that we tell our doctors any time we feel that something is not right with our hearts. “Especially tell your provider about any family history of heart failure,” he said. “Insist on genetic testing if you do.” Ruf had all of his children tested; all of them are carrying the genetic mutation. If his foundations achieve their goals, more research and more treatments could be able to cure the disease that affects a million people in the U.S.
Today, at 59, Ruf feels better than he has in 10 years. “I swim, I run, I lead an active life.” It is his gratitude for the gift of life and health that motivates him to continue his work with the DCMF and the GCAC. “I’m a lucky dude.”
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