The turning point for James Gilleland, DO, came during a walk in the park.

For years, he had noticed that he became winded more easily than most. Even as a teenager, he had to train harder than his friends on the high school basketball and football teams just to keep up.

But the symptoms seemed subtle, and he didn’t seek medical attention until a few years ago, at the age of 65, after he and his wife, Kathy, went for a stroll.

“We were out walking in a park and I had to go up an incline on a July day, and I was just more short of breath than I should have been,” he says. “That’s when I knew I had a problem.”

At his wife’s insistence, Dr. Gilleland saw Richard McNamara, MD, a Spectrum Health interventional cardiologist.

He learned he had hypertrophic cardiomyopathy, a heart condition that is a major cause of sudden cardiac arrest, congestive heart failure and stroke.

His diagnosis set into motion a series of treatments, coordinated and overseen by specialists in the Spectrum Health Hypertrophic Cardiomyopathy Program. He took medication, underwent two heart catheterizations and, ultimately, had open heart surgery.

Not easy stuff for someone used to sitting on the doctor side of the doctor-patient relationship.

“It’s hard to get someone like me to lie down for open-heart surgery,” he says, with a wry smile.

But worth it? Absolutely.

“I probably feel better now than I’ve felt in 20 years,” he says. “I’m a blessed guy.”

Common, but complex

It took a team to bring about that result, Dr. McNamara says.

Specialists at Spectrum Health have spent a couple of years pulling together the resources needed to create a comprehensive, multidisciplinary approach to hypertrophic cardiomyopathy.

The team includes cardiologists specializing in advanced imaging, MRI specialists, electrophysiologists, clinical and interventional cardiologists, cardiac nurses and a cardiothoracic surgeon. A genetic counselor and a social worker also work with patients. After a patient is diagnosed, siblings and family members undergo screening or genetic testing to determine their risks.

“Well over 400 patients have come through the clinic for evaluation and treatment of hypertrophic cardiomyopathy,” says David Fermin, MD, the medical director of the program. “And through genetic testing and other screening tests, we have been able to identify other family members who have hypertrophic cardiomyopathy or who are at risk of developing it.”

The condition is the most common genetic cardiovascular disorder, affecting 1 in 500 people in the U.S. But it gets little recognition, Dr. McNamara says, because of the complexities involved in diagnosis and treatment.

Treatments vary, depending on the patient’s symptoms, and can include medication, surgery or an implantable defibrillator to prevent sudden cardiac arrest.

“It has a lot of different manifestations. Each patient really brings their own individual idiosyncrasies and specifics to the clinical floor. And each patient needs to be evaluated independently,” Dr. McNamara says. “It is one of the most complicated diseases in terms of anatomy and physiology.”

And the stakes are high.

Hypertrophic cardiomyopathy “is the most common cause of sudden cardiac death in young people and a major cause of congestive heart failure and strokes in young people,” he says.

“We’ve been able to reduce that risk of sudden death and mortality down to almost normal,” Dr. McNamara says. “It has turned what was at one time a feared disease of sudden death to a very treatable disease where we have far less than 1 percent per year mortality from it.”

His father’s heart

Like others with the condition, Dr. Gilleland had hypertrophic cardiomyopathy from birth.

“Usually, the heart muscle starts getting thicker in adolescence, and at first, they are completely asymptomatic,” Dr. McNamara says.

Once diagnosed, patients often look back and realize they had problems with stamina for a long time. They might have had no problem sprinting 100 yards, for example, but struggled to run a mile in gym class.

The thickness may develop in a person’s teens, 20s, 30s and even 40s. Eventually, patients may develop symptoms: shortness of breath, chest tightness or fainting with exercise. Or they may suffer more extreme signs―a stroke, congestive heart failure or sudden cardiac arrest.

When Dr. Gilleland sought treatment, he learned he had three issues with his heart. In addition to hypertrophic cardiomyopathy, he had dysfunctional mitral and aortic valves. As the heart pumped blood out to the body, the valves allowed some to leak back into the heart.

“I didn’t much like the news Dr. McNamara gave me,” the Grand Haven, Michigan, man admits. “But I believed him and I thought he was accurate.”

Dr. Gilleland’s father had the same issues with aortic and mitral valve regurgitation.

“Based on his symptomatology, I think he had the same thing I’ve got,” he adds. “I think he had hypertrophic cardiomyopathy and it was not diagnosed. I think I inherited it all.”

His father died of a sudden arrhythmia at age 83.

“I think if my father had been able to have access to a clinic like this, I think he would have lived longer,” Dr. Gilleland says. “When he died, I don’t think the science was as good as it is now. There certainly wasn’t the access to it that I have now.”

After his diagnosis, Dr. Gilleland’s siblings and children underwent screening. None have hypertrophic cardiomyopathy.

He treated his condition with medication at first. At one point, he went to Mayo Clinic for a consultation. His doctors encouraged that, because of the complexities involved with hypertrophic cardiomyopathy.

“One of the strengths of the program is we have all these specialties physically working together and collaborating on these patients’ care,” Dr. Fermin says. “We talk to other top international experts about these cases, too.”

“This is all about collaboration,” says Dr. McNamara. “We talk to Harvard, Tufts, the Mayo Clinic. We talk to people about the best treatments.”

A need for surgery

In time, Dr. McNamara said he needed surgery.

“I said, ‘I don’t have much choice, do I?’” Dr. Gilleland recalls. “He said, ‘I think you need to do it.’”

Tomasz Timek, MD, performed the operation in April 2016 at Spectrum Health Meijer Heart Center. He replaced the aortic and mitral valves and removed part of the thickened septum to improve blood flow.

Dr. Gilleland felt better immediately.

“One of the happiest days of your life is waking up from cardiac surgery,” he says. “It’s almost euphoric.”

Now 70 years old, he continues to practice medicine. He also works with his son, who develops medical software.

He and his wife keep busy with their children and grandchildren. After years of restricting activity, he now has the energy to work out at the gym several days a week.

Asked what he has planned for the future, he says, “The simple answer is I want to live a long time. I’ve got a lot I want to do. I enjoy my life.”

His mother will soon turn 100. He hopes he has longevity in his genes.

“I’m just a lucky guy,” he says. “I got the diagnosis. I got with a guy who is an artist with his hands. I got with a world-class program. I think this whole heart program has to be one of the best in the country.”