What People Don’t Understand About Heart Failure

Medically Reviewed by Brunilda Nazario, MD on October 13, 2021
4 min read

By Beth Davidson, as told to Hallie Levine

I’ve been an advocate for heart failure for almost 25 years. My journey began as a heart failure case manager at Vanderbilt University in 1998, where I worked closely with and advocated for many heart failure patients. Since 2019, I’ve been the president of the American Association of Heart Failure Nurses, which is dedicated to finding ways to improve life for people with the condition. My own personal inspiration? My beloved grandmother, who died in her mid-70s of heart failure.

Over the years, I’ve learned that people often don’t understand this disease, especially when they are newly diagnosed. There are a few common misconceptions I try to clear up.

Heart failure is not a death sentence. When people hear the words heart failure, they automatically think that their heart will just stop beating and that there’s nothing that can be done. That couldn’t be further from the truth. 

Heart failure means that the heart isn’t pumping as well as it should be. As a result, your body may not get all the oxygen it needs, which leads to symptoms like fatigue and breathing problems. But the truth is, there are plenty of good treatment options today that weren’t available to my grandmother several decades ago.

Many people with heart failure live full, productive lives. The key is to get a diagnosis early, so that you can get started on treatments such as medications or in some cases surgery to slow the progression of the disease.

Heart failure can affect anyone. Many people think heart failure is a disease that only happens to the elderly. Although cases of heart failure become more common as people get older, plenty of young healthy men and women develop it, too.

Some are born with heart disease, while others develop heart inflammation, or myocarditis, after a viral illness that weakens the heart enough to cause heart failure. There’s also a condition called postpartum cardiomyopathy, a form of heart failure that can begin in the last month of pregnancy or within a few months of giving birth. But new moms and their health care providers often don’t think to look for it. It’s not uncommon for people to end up in the emergency room or urgent care multiple times with a persistent cough and fatigue before someone thinks to do a chest X-ray and discovers that their heart is the size of a basketball.

If you notice symptoms such as shortness of breath when you’re active or when you’re lying down, you can’t exercise as much, you have swelling in your legs, ankles, or feet, and persistent fatigue, it’s very important that you see your doctor. You can be young, with no risk factors for heart disease, and still be in the early stages of heart failure.

It's never too early to see a heart failure specialist. If you get a cancer diagnosis, you expect to be referred to an oncologist well versed in your specific cancer immediately. But many people diagnosed with heart failure aren’t even referred right away to a cardiologist, let alone one that specializes in this disease.  

Everyone with heart failure, even those in early stages, needs that kind of care. Ideally, you want to be seen at a heart failure center, where a variety of health providers, including cardiologists, nurses, pharmacists, nursing staff, and even dietitians and exercise physiologists can work together to come up with the best treatment plan.

Nurses, not doctors, are often the ones driving your care. Nurses spend far more time with heart failure patients than our physician colleagues. They’re often the ones who triage symptoms in the ER, and monitor you for signs and symptoms that suggest your treatment is working. When patients call their cardiologist’s office with questions, we’re usually the ones to answer them. We’ve also found that people are often more likely to be honest about their medical history and whether they are following treatment when they talk to their nurse, rather than their doctor.

You’re an important part of your own medical team. Health care providers can only do so much. In order for your treatment plan to be as successful as possible, you need to be an active participant in your own care.

Take your medications and every day, and know exactly what they do. Eat less salt, and limit your fluid intake. Weigh yourself daily. If you see any red flag signs like weight gain of more than a few pounds in a couple of days, having to sleep sitting up, swelling in your ankles, call your doctor right away.

Heart failure is a serious, lifelong disease. But if you take charge of your health and have good communication with your medical team, you’ll be more likely to stay out of the hospital, live longer, and, most importantly, live your life well.