By Beth Davidson, told to Hallie Levine
I have been a champion of heart failure for almost 25 years. My journey began as a Heart Failure Case Manager at Vanderbilt University in 1998, where I worked closely and advocated for many heart failure patients. Since 2019, I have been president of the American Association of Heart Failure Nurses, which is dedicated to finding ways to improve the lives of people with the disease. My own personal inspiration? My beloved grandmother, who died in the mid-1970s of heart failure.
Over the years, I have learned that people often do not understand this disease, especially when they are newly diagnosed. There are a few common misconceptions that I try to dispel.
Heart failure is not a death sentence. When people hear the words heart failure, they automatically think their hearts will stop beating and that there is nothing they can do. It couldn’t be further from the truth.
Heart failure means the heart is not pumping as well as it should. As a result, your body may not be getting all the oxygen it needs, leading to symptoms like fatigue and breathing problems. But the truth is, there are many great treatment options out there today that weren’t available to my grandmother decades ago.
Many people with heart failure lead full and productive lives. The key is to get an early diagnosis, so that you can start treatments like drugs or, in some cases, surgery to slow the progression of the disease.
Heart failure can affect anyone. Many people think of heart failure as a disease that only happens to older people. Although cases of heart failure become more common as people get older, many healthy young men and women develop it as well.
Some are born with heart disease, while others develop heart inflammation, or myocarditis, after a viral disease that weakens the heart enough to cause heart failure. There is also a condition called postpartum cardiomyopathy, a form of heart failure that can occur in the last month of pregnancy or a few months after giving birth. But new moms and their healthcare providers often don’t think about looking for it. It is not uncommon for people to end up in the emergency room or emergency care several times with a persistent cough and fatigue before someone thinks about taking a chest x-ray and finds that their heart is the size of a. basketball.
If you notice symptoms like shortness of breath when you are active or when lying down you cannot exercise as much, you have swelling in the legs, ankles or feet and persistent fatigue, it is very important that you see your doctor. You can be young, without 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 are diagnosed with cancer, you expect to be referred immediately to an oncologist familiar with your specific cancer. But many people with heart failure are not even immediately referred to a cardiologist, let alone a cardiologist who specializes in the disease.
Anyone with heart failure, even at an early stage, needs this kind of care. Ideally, you want to be seen in a heart failure center, where a variety of healthcare providers, including cardiologists, nurses, pharmacists, nurses, and even dietitians and exercise physiologists can work together. to develop the best treatment plan.
Nurses, not doctors, are often the ones who direct your care. Nurses spend much more time with heart failure patients than our physician colleagues. They are often the ones who sort out the symptoms in the emergency room and watch 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 who answer them. We have also found that people are often more likely to be honest about their medical history and whether they are undergoing treatment when talking to their nurse rather than their doctor.
You are an important part of your own medical team. There is little that health care providers can do. For your treatment plan to be as effective as possible, you must be actively involved in your own care.
Take your meds and everyday, and know exactly what they are doing. Eat less salt and limit your fluid intake. Weigh yourself daily. If you see red flag signs like gaining more than a few pounds in a few days, having to sleep sitting up, ankle swelling, call your doctor right away.
Heart failure is a serious illness that lasts a lifetime. But if you take charge of your health and have good communication with your medical team, you are more likely to stay out of the hospital, live longer, and most importantly, live your life well.