Heart Failure

The heart is a powerful, remarkable pump that constantly circulates blood throughout the body. Heart failure is caused when the heart no longer works (or pumps) the way it should. The organs and cells don’t get enough blood, and over time this can result in symptoms like fatigue, shortness of breath, and coughing. It can also make normal activities and physical exertion more difficult. If you have heart failure, you might have trouble walking for any length of time or doing even simple things like climb stairs. As the disease progresses, it can lead to severely diminished quality of life. Read on to learn more about the treatment options available, long-term care for heart failure, and ways to pay for care.

How the heart works

To understand heart failure, you have to know how the heart works. The heart has four chambers, two upper chambers called atria and two lower chambers called ventricles. The right atrium brings oxygen-depleted blood from the rest of the body and sends it to the lungs through the right ventricle, where it is re-oxygenated.

Once the oxygen-rich blood has been restored, the blood goes back to the heart and through the left atrium and left ventricle, where it is pumped out to the body again. Altogether, the heart beats about 3 billion times in a lifetime, pumping about 2,000 gallons of blood each day. It is a complex and highly organized process that works due to a series of muscle contractions within the four chambers of the heart. Each contraction keeps the blood circulating to blood vessels, not only through the chambers but also to the lungs and the rest of the body.

What heart failure means 

Heart failure occurs when one of the heart muscles “fails” to pump enough blood. There are a number of causes of heart failure, including hypertension (high blood pressure)coronary artery disease (a buildup of plaque in the arteries or atherosclerosis), and diabetes.

In order for the heart to compensate for the weakened muscle and the inadequate blood flow, it develops a number of coping mechanisms.

  • Enlarged heart – The heart might stretch to create stronger contractions in order to pump more blood. Over time, this causes the heart to become enlarged.

  • Increased muscle mass – The heart might also develop extra muscle mass due to cells in the heart getting bigger. The heart will pump more strongly, but only for so long.
  • Faster pumping – Finally, the heart might pump faster in order to increase output.

Other parts of your body will also do their part to compensate, including narrowing the blood vessels to keep blood pressure up or by diverting blood away from other organs like the kidneys, lungs, and brain.

All of these coping mechanisms are temporary and will only mask the problem for a time. Eventually, these methods will no longer work, causing heart failure symptoms. Unfortunately, the coping mechanisms often mean people who have chronic heart failure don’t even know it, sometimes for years.

Symptoms of heart failure according to the American Heart Association:

  • Shortness of breath
  • Chronic coughing or wheezing
  • Fluid build-up (edema)
  • Fatigue or lightheadedness
  • Nausea or lack of appetite
  • Confusion or impaired thinking
  • High heart rate

There are three main types of heart failure:

Left-sided heart failure – As mentioned above, the left atrium takes oxygen-rich blood from the lungs and sends it to the left ventricle, which pumps it out to the body. Because of the force needed to pump blood through the body, the left ventricle is the largest chamber of the heart. With this type of heart failure, the left chambers of the heart must work harder to pump the same amount of oxygenated blood vessels. One of the types of left-sided heart failure is heart failure with reduced ejection fraction (HFrEF), also referred to as systolic heart failure. Here, the left ventricle loses its ability to contract reduces the amount of blood in circulation. Diastolic heart failure is another type to consider, where the left heart ventricle can’t fill with blood properly, again reducing the amount of blood in circulation.

Right-sided heart failure – The right side of the heart is responsible for sending “used” blood from the veins through to the lungs to be replenished with oxygen. Right-sided heart failure usually occurs as a result of left-sided heart failure. As the left ventricle begins to fail, the blood begins to back up in the right chambers and the veins. This leads to swelling and congestion in the legs and ankles, as well as the abdomen, GI tract and liver.

Congestive heart failure – As the blood flow begins to diminish, it can lead to fluid backing up into the lungs, which can lead to breathing problems and shortness of breath and ultimately congestive heart failure.

Other effects of heart failure

Effects on patients

Heart failure is a chronic, progressive disease that presently has no cure. Although symptoms can be controlled with medication, over time, you may start to lose your ability to function on a normal level. This can severely impair your quality of life and limit everyday activities, including walking, swimming, playing sports, and even things like climbing stairs.

You may experience a number of physical symptoms, including dyspnea, fatigue, edema, trouble breathing, sleeping difficulties (symptoms are usually more severe when lying down), and chest pain.

Aside from physical side effects, it is not uncommon to experience emotional issues as well. When you become easily tired or have trouble breathing, it can limit your physical and social activities. The worsening health complications and increasing isolation can lead to depression. Chronic heart failure can also mean you will experience more frequent hospitalization and high mortality rates, another factor that affects quality of life as well as your emotional state.

Effects on family and caregivers

As with any serious health condition, heart failure does not only affect the patient. Family and other caregivers share the burden of dealing with a chronic, progressive disease. Chronic heart failure can be especially difficult for family members as there is no known cure. While medication and therapy do help for a time, there is no getting around the fact that many patients will continue to grow worse. Watching a loved one suffer and lose his or her ability to enjoy life can be extremely painful and emotionally devastating. Caregivers often feel helpless and even angry about the situation, which is understandable. However, this feeling of helplessness often leads to depression and other mental health conditions.

If depression becomes a problem, either for you or your loved ones, it’s important to seek help from a mental health professional. Your primary physician may be able to recommend someone. Many hospitals also provide counseling and support groups, both for patients and families of those afflicted with heart failure or other cardiovascular diseases.

The financial burden of heart disease

Your family might also experience a heavy financial burden as a result of a heart failure diagnosis. Heart failure requires ongoing treatment, medication, and frequent hospitalization in many cases. The more severe the condition, the higher the financial burden is likely to be, leading to an increasing struggle to pay not only medical bills but also other necessities of life.

Organizations and resources

There are many resources and websites that provide medical information, financial help, support groups, and counseling services for patients and families who are dealing with heart failure.

American Heart Association

The American Heart Association (AHA) invests in public health policy research to provide tools and information to medical organizations as well as individuals. AHA also provides science-based treatment guidelines to healthcare professionals, educates lawmakers and policymakers, and works to improve the health of local communities across the country.

Heart Failure Society of America

The Heart Failure Society of America (HFSA) is a forum organized by experts to provide a collaborative, educational place for individuals to go to learn more about heart failure. Their goal is to foster relationships with physicians and cardiac experts, help expand research, and advocate for patients dealing with heart failure.

The National Coalition for Women with Heart Disease

It is committed to serving the needs of women who have been diagnosed through education and support, and ensure that women have equal access to accurate cardiac diagnosis, testing, and treatment.

National Heart, Lung and Blood Institute

A U.S. Government agency providing leadership in research, training, and education to prevent and treat heart disease and other health disorders. The core missions focus on four areas: the science that continues to shape prevention; diagnosis and treatment; funding clinical trials; and helping researchers establish careers through grants and training.

HeartFailureMatters.org

This organization provides support groups for people who have been diagnosed with heart failure. It serves as a forum where patients can share experiences and information. Groups may have educational sessions as well as general discussions about ways to manage heart failure. It also provides support and information for families and caregivers.

National Institutes of Health (NIH)

The NIH is one of the world’s foremost medical research centers. An agency of the U.S. Department of Health and Human Services, the NIH is the Federal focal point for health and medical research. The NIH website offers health information for the public, physicians, scientists, and healthcare organizations.

MedlinePlus

MedlinePlus is a library of information about the latest treatments for thousands of health issues, information about medications, as well as medical videos and illustrations for reference.

Local Support Groups: Many local organizations and hospitals have support groups where patients can get together with people who share their disease. Inquire at the hospital or medical facility where you receive treatment to see where you can find a support group.

Treatments and care for heart failure

Lifestyle changes

The most basic recommendation is to make relatively simple lifestyle changes:

  • Lose or maintain a healthy weight
  • Limit your liquid intake
    • You might also be prescribed diuretics (water pills) to help get rid of excess water and sodium
  • Drink alcohol in moderation
  • Avoid or limit caffeine
  • Switch to a heart-healthy diet that contains low amounts of saturated fats, trans fats, cholesterol, and sodium
  • Get regular exercise
  • Manage your stress, which may include light exercise, yoga, or resting frequently
  • Keep a close track of your symptoms in order to report changes to your doctor(s)
  • Monitor your blood pressure daily
  • Get adequate sleep
    • If lying down worsens symptoms, try sleeping with your head propped up on a pillow. Also, try putting your feet up for a few minutes every couple of hours.
  • Look for a support group
  • Get vaccinated for the flu and pneumonia
  • Avoid tight socks or stockings as these can slow blood flow to the legs and cause clots.

Medication therapy

Heart failure symptoms can often be controlled with the right medication. There are numerous classes of drugs, which are commonly used. Many patients take several different kinds of medications to counteract specific symptoms. These medications must be taken as prescribed by your doctor’s orders, keeping in mind that each one may have different instructions.

Commonly Prescribed Medication Types:

  • Angiotensin-Converting Enzyme (ACE) Inhibitors, e.g. Capoten, Vasotec, Zestril, Monopril
  • Angiotensin II Receptor Blockers (or Inhibitors), e.g. Atacand, Cozaar, Diovan
  • Angiotensin-Receptor Neprilysin Inhibitors (ARNIs), e.g. Valsartan
  • If Channel Blocker (or Inhibitor), e.g. Corlanor
  • Beta Blockers, e.g. Zebeta, Toprol XL, Coreg
  • Aldosterone Antagonists, e.g. Aldactone, Inspra
  • Hydralazine and Isosorbide Dinitrate, e.g. Bidil
  • Diuretics (water pill), e.g. Lasix, Diuril, Dyrenium, Esidrix, Hygroton

Patients may also take blood thinners to control atrial fibrillation (irregular heartbeat), statins to control cholesterol, and digoxin.

Devices and surgical procedures

If you have severe heart failure, you might need more direct intervention, including implantable devices that can help your heart work more efficiently.

Types of implantable devices:

Implantable cardioverter-defibrillator (ICD) (pacemaker) – This device delivers pacing or electric shocks to the heart in order to keep it beating regularly. This is for patients who develop arrhythmias (irregular heartbeat).

Cardiac resynchronization therapy (CRT) – A type of pacemaker that helps certain chambers of the heart (ventricles) contract normally and in synchrony, which can improve the heart’s function.

Left ventricle assist device (LVAD) – A battery-operated, mechanical pump that improves the pumping ability of the heart. LVAD’s are often called a “bridge to transplant” as it can be used while a transplant patient waits for a heart to become available. It may also be used long-term for end-stage heart failure patients who are not eligible for a heart transplant.

Surgical options

If severe heart failure cannot be helped by medication, a heart transplant might be the only option available. A healthy heart from a donor replaces the damaged heart. It is a very complicated and lengthy process that can take months. Other surgical options are only used if there is an identifiable problem that can be fixed. These options can include angioplasty, which removes blockages in the coronary arteries, coronary artery bypass, and heart valve replacement.

Financial and legal considerations

Financial 

Patients with heart failure can face a number of financial difficulties, even for those who have private insurance or Medicare. There can be a high cost associated with treatment, which is meant to control symptoms and slow the progression of the disease. A study of heart failure patients 65 or older by scientists at the University of Michigan Health System and the Veterans Administration Ann Arbor Healthcare System revealed that heart failure patients were more likely to:

  • Be disabled
  • Have difficulties with daily activities
  • Require nursing home care
  • Receive home care
  • Experience other complications such as falls, Alzheimer’s and dementia, and incontinence

The increased incidence of hospital stays contributes to the financial burden. According to the U.S. Centers for Disease Control, heart failure is the most common reason for hospitalization, with the average hospital stay lasting at least 6 days. Re-hospitalization rates within six months are also high, and as the disease progresses, hospital stays become more frequent.

Toward the end states of the disease, you may require long-term care in a nursing home, skilled nursing facility or assisted living facility, and this means an additional financial burden.

Legal

Patients with heart disease have a variety of legal considerations to keep in mind. Aside from securing life insurance (if eligible) in order to ensure family members and dependents are taken care of in the event of your death, you must also make end-of-life decisions. This should include developing a living will and advance directives.

These legal documents spell out your preferences regarding medical care if you cannot make decisions for yourself. You should also appoint a medical power of attorney, which names a specific person to make medical decisions for you if are unable to do so. Depending on the state, this person might also be known as a health care agent, health care proxy, health care surrogate or patient advocate. For more information see our guide to choosing a power of attorney.

A living will states which type of medical treatments you do or do not want in order to keep you alive, including resuscitation, mechanical ventilation, tube feeding, dialysis, antibiotics, palliative (comfort) care, and organ donation. A living will can also include do not resuscitate (DNR) or do not intubate (DNI) orders. Without a living will stating your wishes, someone else may have to make end-of-life decisions for you.

Finding long-term care

There may come a time when your health needs become too complicated for family or other caregivers. You might need around-the-clock care or require more specialized attention from someone with medical training.

The decision to seek long-term care, either from a nursing home, skilled nursing facility (SNF) or assisted-living facility (ALF), is a difficult one. Choosing a facility can be even more challenging. In order to make the decision, it’s important to know the goal of long-term care.

An American Heart Association paper divides heart failure patients into three categories in regards to long-term care:

Rehabilitation Group – This category is for patients who have been recently discharged from the hospital and now need rehabilitation in order to restore function so they can return home and be more independent.

Uncertain Prognosis Group – The second category is for patients who have been discharged from the hospital with complications, frailty or multiple comorbidities. In this case, recovery is not as certain, although there is hope for improvement.

Long-Term Group – The last group is made up of skilled nursing facility (SNF) residents with frailty and a high degree of dependence. They are generally expected to stay in a long-term care facility until death.

When accessing a facility for long-term care, you and your caregivers must consider the stage of your disease. Do you expect rehabilitation care and treatment in order to return home? Or have you reached the end stages of heart failure when simply managing your symptoms and discomfort is the most important goal? Facing this reality can be extremely painful, but answering these questions will make it easier to find the right facility for your needs.

Finding a care provider

Trying to find the right doctor, hospital or long-term care facility to treat heart failure can be overwhelming. The options may seem endless and it’s difficult to know exactly what to look for. Here are some tips for finding the right care providers.

Tip #1: Get recommendations from friends and family.

Word of mouth is still one of the best ways to find a care provider. Help narrow the search by asking family and friends. They can tell you about their experience, the quality of treatment, and the level of care and service provided (particularly with long-term care facilities).

Tip #2: Ask your primary physician.

Your primary care physician (PCP) is a great resource for finding a cardiologist or recommendations for long-term care. First, your PCP is familiar with your medical history. Secondly, he or she has already established relationships with specialists. This can greatly enhance and facilitate your care. A PCP will also be able to monitor and organize your care plan, including communicating with your care team, and facilitating tests, treatments, and follow-up visits.

Tip #3: Learn how to be a good communicator.

As with any relationship, communication is key. This is especially important with the provider-patient relationship. It can be easy for you and your caregivers to become overwhelmed or intimidated. Make sure the doctor’s communication style and personality matches yours so that you always feel comfortable going to him or her with concerns or questions.

Tip #4: Check the doctor’s certifications and experience.

Doctors have to go through a series of examinations and board certification in order to be qualified to treat specific conditions. Make sure any doctor you are looking at is board-certified. It is also a good idea to look up information and ratings about a specific doctor. There are many websites where you can find this information, including HealthGradesVitals.comHealthFinder.govWebMDAmerican Medical Association, and RateMDs. Many of these websites also have patient reviews, which could tell you a lot about that doctor’s practice. You can also research this same information about medical facilities, hospitals, ALFs, SNFs, and nursing homes.

Tip #5: Find out which facilities and organizations the care provider is affiliated with.

If a care provider is affiliated with respected facilities and medical organizations, this provides an implied endorsement. Find out if the provider is a member of established medical associations and ensure that he or she actually has privileges at the facility you want.

Tip #6: Don’t be afraid to get a second opinion.

If you feel uncomfortable or as though you aren’t getting the care and attention you need, it might be time to look elsewhere for another opinion. Sometimes, it’s best to follow your instincts if you feel something is not right.

Possible reasons to get a second opinion:

  • If the communication style doesn’t match your own
  • If you are not connecting with the physician or specialist
  • The care provider has recommended a risky, experimental or expensive procedure that makes you uncomfortable

Heart failure FAQs

1. What causes heart failure?

Heart failure is often the result of another health condition such as a heart attack, coronary artery disease, high blood pressure, malfunctioning heart valves, damage to the heart muscle, inflammation of the heart (myocarditis), abnormal heart rhythms, congenital heart defects, or other diseases like diabetes, HIV, hyperthyroidism, hypothyroidism, or a buildup of iron or protein. 

2. What are the risk factors for heart failure?

Risk factors include high blood pressure, coronary artery disease, heart attack, diabetes, some diabetes medications, sleep apnea, congenital heart defects, valve disease, alcohol use, tobacco use, obesity, and irregular heartbeat.

3. What are some of the main complications of heart disease?

Serious complications can include kidney damage or failure, heart valve problems, heart rhythm problems, and liver damage.

4. How is heart failure diagnosed?

If heart failure is suspected, the doctor will start with a physical exam and look for obvious risk factors such as high blood pressure, coronary artery disease or diabetes. There are several diagnostic tests that will then be done, including blood tests, a chest X-ray, electrocardiogram (ECG), echocardiogram, stress test, CAT scan, coronary angiogram, or myocardial biopsy.

5. Is long-term care or palliative care recommended for heart failure?

As your disease progresses, you may need palliative care, which is specialized medical care designed to ease symptoms and enhance quality of life. A long-term care facility, such as skilled nursing facility (SNF) may be needed to aid rehabilitation after a hospital stay or in cases where recovery is unlikely.

6. What is a skilled nursing facility (SNF)?

A skilled nursing facility provides a more comprehensive level of medical care by trained healthcare professionals, including registered nurses (RN), and physical, occupational and speech therapists. An SNF provides short-term rehabilitation as well as long-term care if you need 24-hour care. Some nursing homes also provide a higher level of care from a staff that includes RNs, LPNs, and certified nursing assistants (CNAs). These facilities must be certified by the Centers for Medicare and Medicaid Services (CMS), meet strict standards, and undergo periodic inspections to ensure quality care is being maintained.

7. Where can I find a community or facility that can handle the needs of heart failure?

FamilyAssets has a comprehensive list of nursing homes and assisted living facilities (ALFs) for every state in the U.S as well as information about services and costs. For more information see our guide on The Difference Between Skilled Nursing And Nursing Home Care.