Living With Cardiomyopathy: What to Expect

Medically reviewed by Anthony Pearson, MD, FACC

Cardiomyopathy is a condition characterized by abnormal heart muscle that makes it harder for the heart to pump blood throughout the body. With this condition, the heart muscle is thicker, stiffer, or weaker than normal, which can affect the heart's performance. Cardiomyopathy ranges in severity from causing no symptoms at all to causing exercise intolerance, fatigue, and shortness of breath at rest.

This article reviews what to expect when living with cardiomyopathy, including symptoms, treatment, and lifestyle considerations.

How Serious Is Cardiomyopathy?

The heart is a muscular organ responsible for pumping blood throughout the body to supply oxygen and nutrients. Abnormal heart muscle can affect the heart's ability to power this process.

Cardiomyopathy does not always cause symptoms. However, it commonly results in heart failure symptoms and can cause complications that include valvular problems, arrhythmias (heart rhythm issues), and sudden cardiac death.

Heart Failure

Heart failure is a chronic condition in which the heart does not fill or pump blood effectively, resulting in symptoms like shortness of breath and exercise intolerance.

These symptoms occur due to fluid overload (swelling, weight gain), a backup of blood in the lungs (shortness of breath) or the body (leg, testicular, or abdominal swelling), or poor output of blood to the rest of the body (fatigue, light-headedness).

Heart Failure Stages

According to guidelines from the American Heart Association (AHA), the American College of Cardiology (ACC), and the Heart Failure Society of America (HFSA), heart failure is classified into the following stages:

• Stage A: At risk for heart failure (no symptoms or abnormalities, but risk factors such as high blood pressure, diabetes, and obesity are present)

• Stage B: Also known as pre–heart failure (no symptoms present, but there is evidence of abnormal heart structure or function)

• Stage C: Heart failure symptoms present

• Stage D: Advanced heart failure
  

Valvular Problems

In one common form of cardiomyopathy, known as dilated cardiomyopathy, the heart's chambers are enlarged.

The left ventricle is the main pumping chamber of the heart, receiving blood from the left atrium. The mitral valve separates these two chambers, opening at a specific time in the cardiac cycle to allow blood to flow from the left atrium to the left ventricle.

When the left ventricle becomes dilated, the mitral valve may not close completely, resulting in backward leakage of blood into the left atrium. This is known as secondary mitral regurgitation.

Similarly, when the right ventricle is dilated, the tricuspid valve may leak, a condition known as tricuspid regurgitation.

Arrhythmias and Sudden Cardiac Death

Cardiomyopathy can cause arrhythmias, or abnormal heart rhythms.

The heart has an electrical conduction system responsible for generating an electrical stimulus for the heart muscle to contract, resulting in a heartbeat. Normally, specialized pacemaker cells located in the left atrium initiate the heartbeat, which is known as sinus rhythm.

In cardiomyopathy, the heart's abnormal muscle can lead to an abnormal generation or propagation of electrical impulses.

Cardiomyopathy is a risk factor for ventricular arrhythmias, such as ventricular tachycardia and ventricular fibrillation, which can cause sudden cardiac death. This is why cardiologists (doctors who specialize in treating heart problems) recommend the placement of an implantable cardioverter defibrillator (ICD) in specific situations for some people with cardiomyopathy.

Cardiomyopathy Symptoms

Cardiomyopathy does not always cause symptoms, but when it does, it indicates a diagnosis of heart failure. The following are some symptoms of heart failure:

• Shortness of breath

• Difficulty lying flat due to shortness of breath (orthopnea)

• Awakening at night short of breath (paroxysmal nocturnal dyspnea)

• Cough

• Exercise intolerance

• Feet and leg swelling

• Abdominal fullness

• Decreased appetite

• Fatigue

• Light-headedness

• Palpitations (heart beats hard and fast or heart flutters)

Related: Symptoms and Complications of Heart Failure

Cardiomyopathy Treatment

The goal of cardiomyopathy treatment is to prevent progression and sudden cardiac death and to manage symptoms. Treatment includes lifestyle modifications and medications. Additionally, ICD placement is recommended in some cases to prevent sudden cardiac death.

People with heart failure often require diuretics, which remove salt and water from the body, to help manage fluid overload. Fluid overload is one of the body's ways to compensate for heart failure. It leads to swelling, weight gain, and shortness of breath.

Other specific medical treatments may be recommended based on the ejection fraction (measurement of heart strength) and symptoms.

The AHA/ACC/HFSA guidelines recommend specific guideline-directed medical therapy for heart failure, which have been shown to improve survival and decrease hospitalization and complications of heart failure. This includes a combination of some of the following medications:

• Beta-blockers (specifically bisoprolol, carvedilol, or metoprolol succinate)

• ACE (angiotensin-converting enzyme) inhibitors or angiotensin receptor blockers and neprilysin inhibitor

• Aldosterone antagonists

• Sodium-glucose cotransporter-2 (SGLT-2) inhibitors

• Hydralazine-nitrate combination

Some other forms of cardiomyopathy, such as cardiac amyloidosis (when deposits of an abnormal protein form in the heart muscle) and hypertrophic cardiomyopathy (thickening of the heart muscle), have more specific treatments. Cardiologists can recommend a specific treatment plan.

Living With Cardiomyopathy

Anyone diagnosed with cardiomyopathy should pay attention to symptoms that could indicate heart failure, such as breathlessness, fatigue, and decreased exercise ability. Everyone should also:

• Have regular visits with their healthcare provider.

• Live a healthy lifestyle with healthy nutrition and regular physical exercise.

• Avoid heart toxins like cocaine or heavy alcohol use.

• Keep vaccinations for respiratory illness (such as influenza and COVID-19) up to date.

Those with heart failure symptoms should take special care to do the following:

• Monitor fluid intake.

• Measure weight frequently (daily), as rapid weight gain is an early sign of volume overload.
  

• Get regular exercise to the extent possible (cardiac rehab can be helpful for people with heart failure).

Staying Out of the Hospital

People with heart failure may find themselves being hospitalized frequently due to the buildup of fluid. It's very important to let your healthcare team know at the first sign of symptoms of fluid buildup, such as decreased exercise ability, breathlessness, and leg swelling. At earlier stages, this can typically be managed with changes in oral medication doses.

Can Cardiomyopathy Be Prevented?

With some causes, such as genetic mutations, cardiomyopathy may be inevitable. But a significant proportion of cardiomyopathy cases are preventable.

For example, some of the most common causes of heart failure are high blood pressure and coronary artery disease, both of which are preventable. The ACC/AHA/HFSA guidelines recommend that those at risk for heart failure (stage A) do the following to help prevent it:

• Get regular physical activity.

• Eat a healthy diet.

• Keep weight in the clinically normal range.

• Control blood pressure, blood sugar, and cholesterol.

• Avoid smoke exposure.

Related: How to Prevent Cardiovascular Disease

Summary

Cardiomyopathy is a condition in which the heart muscle is abnormal in thickness, stiffness, or strength. Cardiomyopathy may cause no symptoms at first, but when symptoms start, they can lead to heart failure.

In addition to causing heart failure, cardiomyopathy can lead to heart valve problems, arrhythmias, and sudden cardiac death. Treatment includes addressing any underlying causes, taking medications, and making lifestyle changes.

A Word From Verywell

Living with cardiomyopathy can result in significant symptoms that affect your quality of life and make daily activities difficult. Getting the physical and emotional support you need is important as you work with your healthcare provider to treat cardiomyopathy. In doing so, you may prevent progression into heart failure.

Frequently Asked Questions

What is the life expectancy of a person with cardiomyopathy?

Life expectancy with cardiomyopathy varies based on many factors, including stage and class of cardiomyopathy, with life expectancy being lower for those with severe, symptomatic heart failure (stage D). A 2019 analysis showed that the overall five-year survival rate for people with heart failure was about 50%.

Is cardiomyopathy curable?

While heart failure is a chronic disease, some people with cardiomyopathy due to a reversible cause can normalize their heart's pumping strength as measured by the ejection fraction. This is known as heart failure with improved ejection fraction. AHA/ACC/HFSA guidelines recommend continuing heart failure treatment in this case to prevent relapse.

What is the main cause of cardiomyopathy?

Cardiomyopathy has many causes, and sometimes no cause can be identified. The most common causes of cardiomyopathy include high blood pressure, heart valve problems, and coronary artery disease. A cardiologist can help determine the cause of cardiomyopathy and treat heart failure.

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