Double Diagnosis

These twin sisters share almost everything, but they never imagined they'd share the same heart condition.

by Ayren Jackson-Cannady Deputy Editor

Identical twins Kimberly Ketter and Shaun Rivers may share the same DNA, but that's hardly the only thing the binds the sisters together. They’re both advanced-practice registered nurses in Petersburg, VA, they both love to dance (to New Edition, especially), and 10 years ago, just after celebrating their 40th birthdays, they both learned that they had heart failure.

The sisters’ experience is likely more than a twin coincidence. In fact, new research published in the Journal of the American College of Cardiology has found more evidence that the link between genetics and heart disease is real.

"It's Impossible. I'm in Great Shape."

Kimberly Ketter, who was an emergency-room nurse at the time, was getting ready to start a 12-hour shift. As she climbed some stairs, she got so out of breath that she had to stop. Thinking she was just tired from a grueling ER schedule, she caught her breath and continued with the day. Towards the end of the shift, her heart started palpitating, she felt sick, and again she had trouble breathing.

“I immediately became the patient,” she says. “My coworkers took me off of my shift and started working me up.” Even with her heart racing as high as 160 beats per minute (the normal heart rate for a 40-year-old woman is 60 to 100 beats per minute), Ketter, now a geriatric nurse practitioner, insisted she was fine and just needed to get some rest.

After she was stabilized and discharged, she went to her primary-care physician the very next day, who hooked her up for heart monitoring on an electrocardiogram (EKG), which measures electrical activity in the heart. She also had a heart sonogram (known as an echocardiogram) so her doctor could get a closer look at what was going on.

Again during the tests, Ketter’s heart rate soared into the 160s. Then, after mentioning she was having trouble climbing stairs, her doctor sent her straight for a stress test. After just a couple of minutes on the treadmill, Ketter had to get off. She wasn’t even able to get to the part of the test where they incline the treadmill.

“The blessed thing about it was that they were able to catch the heart rate on an EKG, because otherwise I don't know that they would believe me,” says Ketter. “You know, 40 years old, no health issues. Why would your heart rate be 160 or 150?”

Kimberly Ketter
Kimberly Ketter / Thomas Van Veen

The next stop for Ketter was the heart specialist, who she says listened intently, but wasn’t too concerned until she mentioned her problem climbing stairs. “I went for another stress test and flunked it terribly,” says Ketter. “I got on there and got acutely short of breath.” A tech did yet another echocardiogram, and wasted no time calling in the doctor who, according to Ketter, said, “Well, I think we know what's wrong. You have cardiomyopathy, a form of heart failure."

Her response: "That's impossible. I'm in great shape. That can't be right," recalls Ketter telling the doctor. “I kept up with my annual exams for preventative stuff. There was nothing wrong. I wasn’t even on any medication.“

“We Didn’t Realize How Sick We Were”

After Ketter was diagnosed, she and her sister Shaun Rivers had a cry-it-out moment, but they quickly came to the realization that there may be a genetic component to Ketter’s cardiomyopathy. Three weeks later their hunch was confirmed.

Even though she wasn’t experiencing noticeable symptoms other than being a bit tired, which she chalked up to work, Rivers went to see a cardiologist in the same office that her sister did. She “flunked” her stress test, too.

“They scheduled the echo the same day just like they did for Kim, and it was the same scenario,” says Rivers, who specializes in diabetes nursing care. “The tech left the room and went to go get the doctor. When the doctor came back in the room, he said, ‘Mrs. Rivers, you have heart failure.’”

How did he know? Rivers’ ejection fraction—the percentage of blood that the left ventricle pumps out with each heartbeat—was at 30%. Ketter’s was 20%. Super low. “We didn’t realize how sick we were,” says Rivers. Despite their newly shared condition, their doctors weren’t sure about the exact cause of heart failure, but they, like the twins, assumed genetics played a part.

Why Family History Matters a Lot

hand looking through photos of Kimberly Ketter and Shaun Rivers at wedding
Thomas Van Veen

The most common cause of heart failure is a weak or damaged heart muscle, usually caused by blocked arteries, or coronary-artery disease. Our hearts beat 100,000 times a day, so over time, the wear-and-tear of life itself simply takes its toll. The things that speed up this aging process include diabetes, smoking, high cholesterol, and high blood pressure—all of which have the potential to block or stiffen arteries. The less flexible those vessels are, the harder the heart has to work to circulate blood.

And then there’s family history. There are more than a dozen specific genes related to arterial aging, and we all have a genetic predisposition to it, says Joshua Yamamoto, M.D., a cardiologist in Washington, D.C., and author of You Can Prevent a Stroke. So, naturally, it would make sense that identical twins like Ketter and Rivers would both have similar genetic vulnerabilities. It’s likely they weren’t the only ones in their family with a higher risk.

“Our father passed away in his mid-50s,” says Ketter. “We never had an official cause, but in hindsight, he had all the signs of heart failure. He was overweight, had swollen legs, and he got short of breath when he moved around. But he never shared his health information with us.”

In a recent study published in the Journal of the American College of Cardiology, researchers found that more than 30 percent of heart-disease risk stems from genetic factors, much more than was previously thought.

Whenever you hear anyone (especially a family member) has heart failure, you need to immediately ask why, says Dr. Yamamoto.

“If you have a twin who has heart failure because of blocked arteries, then there is great chance you have some degree of blocked arteries, too,” he says. “If you have a twin who has high blood pressure and has not treated it adequately (because it may be asymptomatic for a long time), and he or she develops heart failure, there is a very good chance you will, too.” Many of the same vulnerabilities apply to other family members, including siblings and parents.

You’re Not Alone

Kimberly Ketter and Shaun Rivers hugging
Thomas Van Veen

Unfortunately, about 5.7 million Americans have heart failure, according to the Centers for Disease Control and Prevention. And while Ketter and Rivers would trade in their diagnosis—along with the multiple medicines they take daily to stay alive—in a heartbeat, they are grateful to have each other.

“It's kind of weird, there's almost a sense of relief because I knew I didn't have to go through having heart failure by myself,” says Ketter. “There's nothing like having somebody who really, really understands you.”

And your taste in music.

“We've been crazy about the band New Edition since 1983, and we still follow them around going to concerts,” says Ketter. “We kind of use some of their songs as a gauge as to how we're doing with our heart failure. If we can get through ‘Poison’ singing and dancing at the same time, then we know we're having a good day.”

Ayren Jackson-Cannady
Meet Our Writer
Ayren Jackson-Cannady

Ayren is a senior editor at HealthCentral. She works across categories, specializing in skin health, and oversees several newsletters. Before joining the team, Ayren covered skin and hair health as a beauty editor for several national publications, including Fitness, Suede/Essence, TimeOut NY, and Lucky, and she was the Washington, D.C. editor of the parenting site, RedTri.com. She has written for The New York Times, Health, Allure, WebMD, Self, Real Simple, and more.