Corey Ledin-Bristol never knew how closely he walked with death.

Like a shadow he was unaware of, it followed him everywhere.

“I just noticed my heart was fluttering and skipping beats,” Corey, 45, said. “I’d be short of breath for a few seconds. It started about four years ago.”

When he’d lie on his left side in bed, it felt like his heart was pounding against his chest. He visited a doctor who ran an EKG.

“He said everyone has this once in a while,” the Grand Rapids, Michigan, resident said. “I believed him. He’s the doctor.”

The doctor suggested rigorous exercise, something Corey later learned could have harmed him.

His husband, Art Ledin-Bristol, said Corey often complained of tightness in his chest.

“It was very difficult for him to do things that everyone else could do,” Art said. “I’d say, ‘Let’s go to the mall and walk through the mall.’ He had to go slow and got tired out real quickly.”

But an uncomfortable feeling loomed that something lurked beneath the surface. They wanted a second opinion.

“We switched to Spectrum,” Corey said. “That doctor did an EKG and immediately saw it.”

“It” was the potential harbinger of death. Hypertrophic cardiomyopathy. A heart condition that can slay without warning due to abnormally thick heart muscle.

“This is the kind of disease that if a teenager is playing basketball, they can suddenly die,” Corey said. “This is what causes that. Luckily, I was never very athletic. I remember trying to jog and thinking ‘This is horrible. Wow, why do people do this?’ It seemed to be so much harder than for other people. Luckily, I wasn’t athletically inclined to play basketball and all that stuff. I could have just dropped.”

Heart help

Corey was referred to Richard McNamara, MD, a Spectrum Health Medical Group interventional cardiologist.

Dr. McNamara said hypertrophic cardiomyopathy is the most common genetic cardiovascular disease, affecting as many as 1 in 300 people.

“It’s as common as Type 1 diabetes,” Dr. McNamara said. “You inherit it. It’s a strong gene. If you have it, statistically, half of your first degree relatives, children and siblings, will have it.”

The condition can also cause congestive heart failure, shortness of breath, passing out and stroke.

“It is one of the most complicated diseases to take care of and it has a lot of variations in symptoms,” Dr. McNamara said. “Four years ago we decided to set up an HCM clinic at Spectrum Health. We went from having about 150 patients to over 700 patients in the clinic.”

The clinic team includes cardiologists, surgeons, geneticists, imaging experts and social workers. The clinic also offers support groups for patients so they can better understand their disease, and their limitations.

People with this heart condition typically start showing symptoms in their teenage years, according to Dr. McNamara. Common symptoms include shortness of breath and passing out.

But there’s always the deeper risk. The one from which no one returns.

“Your heart goes into ventricular fibrillation, you drop and you die,” Dr. McNamara said. “With Corey, we assessed what his risk was. His risk of having sudden death was greater than 5 percent. Corey has thickening both in the middle part of his heart and at the apex of his heart. It’s a bit unusual where he has his hypertrophy.”

In October 2015, Dr. McNamara installed a defibrillator pacemaker device in Corey’s chest, and put him on a medication to relax his heart.

A device in his bedroom monitors every heart beat and sends the information to Corey’s Spectrum Health clinical team.

Dr. McNamara said Corey is doing well.

“Shortness of breath is his main limitation,” Dr. McNamara said. “But now, he understands it and knows what’s causing it. It’s nice to have an explanation for why you can’t do what other people can do. When he gets short of breath, he’s supposed to stop. He’s not going to make his heart any stronger.”

Dr. McNamara said although patients with hypertrophic cardiomyopathy should refrain from highly competitive athletics, recreational activities are OK.

“There are a lot of scared people out there about the danger of exercise,” Dr. McNamara said. “People think if you just sit there you’re fine and that’s not the case. Playing basketball or recreational activity is not going to kill you.”

Although hypertrophic cardiomyopathy is the most common cause of death in young athletes, physical activity is not a death sentence, according to Dr. McNamara.

“Fortunately, sudden death is relatively uncommon,” he said. “It’s the most feared, but shortness of breath, passing out and stroke are more common manifestations. Most of our patients are going to work every day. They’re not dying suddenly. Most are like Corey—they can’t walk two blocks, but they’re still living.”

Comfort from technology

Corey said knowledge and technology are a perfect pair.

“This condition can cause your heart to go out of beat enough that it just stops,” Corey said. “If that ever happens, this thing in my chest will zap me … and bring me back. Hopefully.”

Living with the technology is comforting for Corey and Art, who have been together 16 years.

“It’s very scary to have this (heart condition),” Corey said. “I had it probably my entire life and had no idea. I thought all my tests would come back negative. When they didn’t it was like, ‘Wow, it’s your heart.’ You start thinking back. When I walked through Meijer, I would get winded and have to slow down. I feel pretty good now. Everything is monitored and taken care of. And I think if something does happen, we’re in good hands.”

Dr. McNamara also referred Corey for a sleep test.

“Snoring is very stressful to the heart,” Corey said. “I did a sleep test and they put me on a cpap machine. I sleep so much better, it’s amazing.”

What might have been

It haunts Corey and Art to think of what might have been. A sudden death. The dream home they recently purchased in Greenville housing Art with no Corey. The French and Indian food that would have been left uncooked, the books left unread. Not to mention the grief their three grown children would have experienced, to lose one of their fathers.

Life is grand these days in their big Victorian farm house on three oak-tree-laden acres. There’s even a sprawling kitchen where Corey turns out curry dishes and other ethnic specialties.

So far, Corey’s implant hasn’t kicked in, but he still feels irregular heart beats at times.

“Every time I have a flutter, I can feel it,” he said. “Your heart jiggles around. It has to go through so many seconds before the machine decides to react to it. I still get short of breath. That won’t ever go away. If the condition continues to worsen, there are surgical things they can do.”

He has restrictions. He can’t lift anything heavy, can’t run and can’t drink alcohol.

“They’re really concerned about dehydration because it causes stress to the heart,” he said.

After Corey’s condition was revealed, doctors suggested that other family members be tested for hypertrophic cardiomyopathy.

“It was a concern with my nieces and nephews,” he said. “I didn’t show symptoms until I was an adult. They did their genetic testing.”

All appears well with his family members, and the future looks bright for Corey and Art, too.

Art said he’s thankful they switched medical facilities. To show his gratitude, Art joined the Spectrum Health Patient Family Advisory Council.

“They never saw the condition (at the other medical facility),” Art said. “All the things they kept telling him to do—rigorously exercising and running—if he had continued to do it, it would have killed him. When we walked into Spectrum, it was like walking out of the stone age and on board the Spaceship Enterprise. Spectrum saved his life. Our minds are at ease.”