Heart Failure In America

Millions of people worldwide have a heart failure diagnosis and many more go untreated. Every year, we conduct our Heart Failure In America survey to better understand the impact that heart failure (HF) takes on the patient and their loved ones. More than 600 people completed the survey, providing a rich perspective on the condition. We’re sharing their heart failure experiences and stories below. What are the most commonly reported symptoms? For most people, heart failure comes with multiple symptoms. Nearly all patients use tactics to manage or improve heart failure symptoms, with taking medicine regularly and as prescribed (87% of respondents), eating heart-healthy foods (71%), and getting a flu shot/vaccination (68%) being the most common. What is the impact on household finances? Treating heart failure can be expensive. 15% of respondents use a financial support program to help cover treatment costs and 9% avoided using a medication due to its cost. 73% of respondents have an annual income of less than $55,000. What about other health conditions? Comorbidity is the presence of more than one chronic condition in a given patient. Nearly all survey respondents (96%) report having at least one comorbidity. One patient alluded to their previous cardiovascular challenges when reacting to their heart failure diagnosis: “I was shocked. I didn’t know what it meant. I already had 2 open-heart surgeries before this.” Diverse backgrounds People living with heart failure come from diverse backgrounds. The average respondent age is 70 years old, with 86% being older than 60. Two-thirds (66%) of respondents are female and 16% are employed in some capacity. How often do patients undergo testing? 83% of patients report undergoing regular testing to track their heart failure progression and 87% have never been told they should be evaluated for or need a heart transplant. Roughly ⅔ of patients were diagnosed with heart failure through an echocardiogram and/or an electrocardiogram. The Heart Failure In America 2020 survey was conducted online from October 2019 through April of 2020. 642 people completed the survey. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] The In America survey is now closed. Are you 1 of the millions of Americans living with heart failure? If so, we want to hear from you. To learn more about the challenges of living with heart failure, we are conducting our In America survey. By taking our survey, you can bring awareness to the realities of life with heart failure and help others feel less alone. What is the survey about? The survey covers “basics” like your diagnosis and treatment experiences, but also dives into the nuances of heart failure, like the emotional impact and day-to-day challenges. In addition, you’ll have the opportunity to not only tell us about heart failure but also any other conditions you are living with and how each impacts your life. Why should you take the survey? Each person who takes the In America survey contributes to a better understanding of heart failure as well as other health conditions. With better knowledge, we can help others who are navigating health challenges feel less alone. We hope to capture a full picture of all aspects of your health experiences and bring greater awareness to conditions that may be misunderstood. Sharing your experiences through the survey can reveal how similar each person’s journey is, as well as the differences that make each journey unique. What will the survey ask me? The survey will ask about different moments of your journey with heart failure, including: Diagnosis Symptoms and symptom management Quality of life Treatment awareness and experience Other diagnosed conditions We do not require your name, address, or other personal information for you to participate. You also do not have to take the survey all at once. Feel free to bookmark the survey in your Internet browser and return to it when you are able. You may continue where you left off. How do we use the In America survey data? Survey responses help us and our partners better understand the heart failure community. All survey responses remain confidential, reported only in total. This means your specific responses will not be reported individually. All information will become property of Health Union, LLC. Throughout the year, we may highlight important findings and develop new content based on what we learned from the survey. We hope this contributes to the information available to those in our community and helps you connect with others who walk the same path. Sharing your story can make a difference, and we believe each story can change how others understand life with heart failure. Still have questions? Comment below, or email us at contact@heart-failure.net for more information. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] ,Life with heart failure can look different from person to person. Severity, type of heart failure, and treatment plans can all vary. Heart failure also comes with a wide range of symptoms. We conducted our 2020 Heart Failure In America survey to better understand the symptoms that impact those living with the condition. More than 600 men and women with heart failure completed the survey and shared their experiences. While each person’s heart failure journey is unique, 92 percent of survey respondents shared that they had experienced at least one symptom related to their heart failure within the last month. Overwhelmingly common symptoms The majority of the men and women who completed the survey had two symptoms in common: shortness of breath and fatigue. Shortness of breath during daily activities was experienced within the past month by 64 percent of respondents. About 28 percent of respondents also shared that they experienced shortness of breath while at rest. Roughly 62 percent reported increased fatigue, or a feeling of weariness or weakness despite getting ample rest. Not surprisingly, 50 percent also said that they had trouble sleeping. A range of physical heart failure symptoms The far-reaching physical symptoms of heart failure often limit daily physical activities and impact overall well-being. More than 40 percent of respondents reported that they had difficulty exercising, while 38 percent had experienced an irregular heartbeat (or pulse) with their condition. Swelling was another physical symptom experienced by many of the survey respondents. About 37 percent said they noticed increased swelling in their lower limbs (edema), while another 26 percent experienced swelling of the abdomen. A frequent dry, hacking cough was also common, with 27 percent of respondents experiencing this symptom. The mental and emotional symptoms of heart failure While heart failure brings a host of physical symptoms, the diagnosis also impacts mental and emotional health. More than 86 percent of survey respondents said they had experienced mental and emotional symptoms stemming from the condition within the past month. 35 percent experienced anxiety, 32 percent experienced depression/mood changes, and 19 percent experienced confusion/impaired thinking. Less common heart failure symptoms Some of the less common symptoms stemming from heart failure included gastrointestinal issues and fluid in the lungs. Although these symptoms were reported less frequently, they still affected nearly 20 percent of survey respondents. Nausea was reported in 19 percent of people, while 17 percent shared that they had experienced a loss of appetite. In contrast, rapid weight gain was reported by more than 15 percent of respondents. Although not specified, some rapid weight gain may be related to fluid retention. Pulmonary edema, or fluid in the lungs, was reported by 16 percent of participants. Pulmonary edema can make it difficult to breathe and can cause additional coughing or respiratory symptoms. Another 12 percent shared that they had experienced pain in the abdomen within the past month. Checking in with a healthcare provider Since new symptoms can arise regularly with heart failure, checking in with a healthcare provider when experiencing new or worsening symptoms is always a good idea. The Heart Failure In America 2020 survey was conducted online from October 2019 through April of 2020. 642 people completed the survey. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] In September of 2019, Health Union (the parent company of heart-failure.net) partnered with the US Pain Foundation for our first ever Chronic Pain in America survey to ask members of our communities about their experiences with chronic pain. 4,725 people living with chronic pain completed the survey to share how pain impacts their life and their experiences with pain management and treatment. One thing that respondents described was how they feel on a day when they are experiencing their worst pain. The responses are shared in this video. What does the worst day with chronic pain feel like? Describing the painful days Some other responses from the survey include: "Very depressed!! On my worse days, I usually stay away from everyone and I am not very active." "In agony. Can't move, can't eat, can't sleep. Constant severe pain. 8 out of 10 in severity." "In my worst flares I can’t get comfortable, the pain is excruciating, and nothing works to make it." "My worst day I'm in bed. I have leg pain, lumbar pain with movement and I can't walk well either. My head is too heavy to support wich also sends screaming pain in cervical and thoracic and right on down to my shoulder and arms." "I feel like I could die I’m in so much pain. The stomach pain becomes almost too much to bear. After a flare-up, I feel 100 percent drained." "Usually I’ll be in bed, barely wanting to get up to use the bathroom. I live alone, so it’s difficult to get up and eat something or take care of any basic everyday necessities." We want to thank our community members again for being so open and honest about living with chronic pain. To those who are feeling this pain, you are not alone. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],Heart failure (HF) is a condition that develops when your heart can no longer pump enough blood and oxygen to your other organs. While it may sound dire, HF does not mean your heart has completely stopped beating.1 But HF is a serious and incurable condition that can get worse if it is not treated. You may have shortness of breath and a cough. You may feel extremely tired. Even simple activities like walking or climbing stairs can be hard to do.2 A global healthcare problem Experts estimate that HF affects 64 million people around the world. Cardiovascular disease, which includes HF and other heart-related conditions, is the number 1 cause of death worldwide. In 2020, it caused more than 17.9 million deaths.2,3 How many people live with heart failure in the United States? According to the American Heart Association, more than 6 million Americans have HF. Doctors diagnose over 900,000 people with the illness every year. Experts estimate that 1 in 5 adults over age 40 in the United States will develop HF at some point.4,5 The Centers for Disease Control and Prevention (CDC) report that 4.6 percent of all adults in the US have been diagnosed with coronary artery disease (CAD). CAD is a common risk factor for developing HF.6 In 2020, more than 696,000 people in the United States died of heart disease. That number equals 211 out of every 100,000 Americans.6 Who gets heart failure? HF can happen to anyone. But certain groups of people are at an increased risk, particularly African Americans and Hispanic Americans.7 Research shows that African Americans are more likely to die from HF within 5 years of being diagnosed than any other racial group. High blood pressure that is not controlled is often the cause of HF in African Americans. Hispanic Americans tend to have more of the health conditions associated with HF – like diabetes and obesity – than white Americans.7 HF affects men and women equally. But women are more likely to die from HF than men. Women account for more than half of HF deaths in the United States.7 Having certain health conditions also raises a person's chances of developing HF. These conditions include:1,4,8 Coronary artery disease and other illnesses linked to heart disease High blood pressure (hypertension) Prior heart attack Diabetes Obesity Sleep apnea Severe lung disease History of a heart murmur (valvular heart disease) Heart muscle disease and enlargement of the heart (cardiomyopathy) Family history of enlarged heart (familial cardiomyopathy) Heart defects at birth (congenital heart disease) If you have 1 or more of these illnesses, controlling them is important in warding off HF in the future.4 Symptoms of heart failure There are several symptoms that are specific to HF. If you have any of the above risk factors, knowing these symptoms can save your life or a loved one’s life. Symptoms of HF can include:7,8 Fatigue Getting tired easily Shortness of breath from simple activities like walking or climbing stairs Difficulty breathing when lying down Waking up feeling out of breath in the middle of the night Chest congestion Frequent coughing, often producing mucus Dry cough when lying flat in bed Swelling of the feet, ankles, or legs (edema) If you or a loved one experiences any of these symptoms, contact your doctor right away. Reducing heart failure risk with lifestyle changes The right treatment can slow the progression of HF or even prevent it. Adopting certain healthy lifestyle changes is an important part of treating HF. Experts suggest:1,8 Quitting smoking Eating foods lower in fat, cholesterol, and salt Getting regular exercise Limiting alcohol Survival rates for heart failure Around half of people with HF will die within 5 years of being diagnosed. But it is important to note that this number does not predict the health outcome of any 1 person. That person's overall health, including other health conditions, affects their life expectancy.6,9 [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

Heart Failure In America

Understanding the Realities of Heart Failure: Results From the Inaugural Heart Failure In America Survey

In America: What’s That?

Most Commonly Experienced Heart Failure Symptoms

Describing the Worst Days With Chronic Pain

How Common Is Heart Failure?

Insurance Status Among Those With Heart Failure

Finding Information and Support for Heart Failure

What Is It Really Like to Be a Caregiver? Results of the 2020 Caregiving In America Survey

Heart Disease in Women: What to Watch Out For

Beyond Exhaustion: How Life Changes with Fatigue

Community Poll