Heart failure is a chronic condition that affects nearly six million Americans, according to the American Heart Association (AHA). The disease is often misunderstood, and while better testing and awareness are making it easier to identify, living with heart failure is challenging.
RELATED: What is Heart Failure?
Here, patients who have heart failure share things that surprised them about the condition, and how they’ve learned to cope.
1. Healthy Habits May Not Protect You From Hereditary Heart Failure
Aimee Rodriguez-Zepeda, 41, knew that heart failure ran in her family. But she believed that her active lifestyle would protect her from a similar fate.
I ride a [motorcycle] cruiser, and with motorcycle riding you need to be in decent shape,” she says. “You have to have good balance and fight off wind strength to hold yourself on the bike.”
But despite her level of fitness, at age 39, the mother of three was diagnosed with heart failure. “I took for granted that it wasn’t going to happen to me,” Rodriguez-Zepeda says.
Some cardiomyopathies, or diseases of the heart muscle, are related to genetic disorders and can be inherited, explains Mariell Jessup, MD, professor of medicine at the hospital of the University of Pennsylvania in Philadelphia. “Doctors are getting better at genetic testing and recognizing genetic abnormalities,” she says. But because heart failure may be hereditary, “You could have heart failure with no obvious risk factors. I have patients who are very fit and exercise every day, and they develop heart failure.”
2. Taking Care of Heart Failure Means Taking Care of Your Mental Health
When Texas resident Pam Guillory was diagnosed with heart failure in 2011, her cardiologist stressed that she should take care of her mental health in addition to her heart health.
“Heart failure and depression are tied together, so I had to learn how to not get so sad about things,” she says. Guillory uses yoga and meditation to stay calm and remain in the moment. The AHA promotes meditation as a way to help maintain heart health.
“A support group helps me a lot, too,” Guillory says. Heart failure support groups around the country include Mended Hearts, Heart Failure Matters, and the group at CardioCare.
3. Heart Failure Is Not a Heart Attack
Most people mistake signs of heart failure for those of a heart attack, found a 2015 survey by the American Heart Association that identified dangerous misconceptions of heart failure.
“People assume it means somebody had a heart attack, and that’s not true,” says Dr. Jessup. “Heart failure is a problem with the [heart] muscle.”
While a heart attack results from blockage of blood flow to the heart (and often causes chest pain), heart failure is a backup of blood into the lungs, abdomen, and legs that can lead to symptoms such as breathlessness and swelling.
4. Heart Failure Can Strike at Any Age
Today, Rodriguez-Zepeda organizes an annual charity ride in her hometown of Woodbridge, Virginia, to raise awareness about heart failure. She says that she’s amazed at the number of people she meets there who didn’t think they had to worry about the condition because they believed they were too young or in good shape.
“It affects all ages and colors and shapes,” she says.
In her clinical practice, Jessup even sees the condition in children: Congenital heart defects, the most common birth defect, can include heart failure.
RELATED: 10 Things Your Doctor Won’t Tell You About Congenital Heart Defects
5. After a Heart Failure Diagnosis, You May Need to Overhaul Your Lifestyle
Jang Jaswal, 60, a San Francisco resident, ate and drank what he wanted throughout his twenties, and smoked a pack of cigarettes a day. “Diet for me meant diet soda,” he confides.
Jaswal had his first heart attack at age 32, and subsequent heart attacks throughout the 1990s. Still, he continued to brush off advice from his doctors. “I went back and forth and couldn’t quit everything,” he says.
When he was diagnosed with heart failure in the late 1990s, though, he knew that he had to make changes right away. “All of my lifestyle had to be changed. I had to adjust to a new diet regimen and exercise.”
Although Jessup notes that less-than-optimal lifestyle habits alone are not known to cause heart failure, they could be a factor in the condition. For example, “a poor lifestyle can lead to hypertension, which can cause heart failure,” she says.
6. Heart Failure Has No Cure
As a cancer survivor, Rodriguez-Zepeda was miffed that no doctors spoke of a cure when it came to her heart failure. “Heart failure doesn’t go away,” she learned. “It’s a lifelong disease.”
“It’s a chronic disorder that you have to take seriously,” explains Jessup, and although a small percentage of patients have heart failure from reversible causes, the condition is ongoing for most people.
Drug treatments may help to ease your symptoms and prolong your life. When treatment doesn’t bring relief, surgical options may help, such as angioplasty to reopen blocked blood vessels, a coronary bypass to improve blood flow, or a heart transplant if the heart failure is severe.
7. Ask for Heart Failure Screening Even if Your Doctor Doesn’t Mention It
Don't make it the doctor’s responsibility,” Rodriguez-Zepeda says.You have to take responsibility and get the doctors involved and get screened early.”
Be forthright with your doctor about your family history and discuss any symptoms that could be heart failure, even if you don’t think it’s a big deal. Shortness of breath, weight gain, and visible swelling in your legs and ankles could be telltale signs to get checked.
Jessup agrees: “It’s recommended that everybody get a yearly checkup. It’s both the physician’s responsibility to take a good history, and the patient’s responsibility to report any symptoms.”
8. You Can Live Happily With Heart Failure
Guillory learned that she could thrive with a heart failure diagnosis. “If I stay on a diet and take my pills, I’ll be okay,” she says.
When Jaswal was first diagnosed with heart failure, he says it seemed like the end of his life. “I thought I was either going down slowly or fast, and not going to come back,” he says. But through a major overhaul of his diet and lifestyle, Jaswal says that he’s able to live a full life in spite of the condition. “I can do everything,” he says. “My life is going up and I’m feeling better day by day."