16932 Dilated Cardiomyopathy

Overview

Dilated cardiomyopathy is a condition where the heart muscle becomes weak, stretched, and enlarged. This makes it harder for the heart to pump blood around the body. Over time, the heart may not work as well as it should, which can lead to heart failure if not managed.

Dilated cardiomyopathy is not very common, but it is the most frequent type of cardiomyopathy (a disease of the heart muscle). It affects around 1 in 250 people in the UK.

It can affect anyone, including children and older adults. Men are slightly more likely to have it than women. It may run in families, so relatives of a person with this condition are sometimes offered heart checks.

Symptoms

Common symptoms

• Shortness of breath, especially with activity or when lying down
• Feeling very tired or weak
• Swelling in the legs, ankles, or feet (oedema)
• Rapid or irregular heartbeat (palpitations)
• Light-headedness or dizziness
• A cough that does not go away

Symptoms in children

• Being unusually tired during feeding or play
• Fast breathing or trouble breathing
• Not gaining weight or growing as expected
• Pale or cool skin
• Sweating during feeding

Symptoms in older adults

• Shortness of breath might be mistaken for normal aging
• Swelling in the legs or feet is common but should still be checked
• Confusion or feeling unusually sleepy can be a sign that the heart is not pumping well
• Falls or fainting episodes

Causes

Main causes

• A previous heart attack that damaged the heart muscle
• High blood pressure that has been untreated for a long time
• A viral infection that inflames the heart muscle (myocarditis)
• Drinking too much alcohol over a long period
• Some chemotherapy medicines or other toxins that harm the heart
• A genetic (inherited) change that runs in families
• Problems with the heart valves or other heart conditions

Risk factors

• Having a family member with dilated cardiomyopathy
• Drinking large amounts of alcohol
• Using illegal drugs, such as cocaine or amphetamines
• Having diabetes, obesity, or thyroid disease
• Being exposed to certain chemicals or heavy metals

When to see a doctor

See a doctor urgently if:

• If you have new or worsening shortness of breath, chest pain, fainting, or a feeling that your heart is racing or skipping beats, see a doctor promptly.
• If you have sudden swelling in your legs or belly that makes it hard to breathe, get medical help the same day.

Book a routine appointment if:

• If you feel unusually tired or breathless during normal activities, make an appointment to discuss it.
• If you have a family history of cardiomyopathy, ask your GP about a heart check.
• If you are being treated for this condition, keep all follow-up appointments and tell your doctor if symptoms change.

Diagnosis

A doctor will ask about your symptoms, medical history, and whether any family members have heart problems. They will listen to your heart with a stethoscope and may arrange tests to see how well your heart is working.

Tests that may be done

• An echocardiogram (an ultrasound scan of the heart) to look at the size and pumping strength of your heart
• An electrocardiogram (ECG) to check your heart's electrical activity
• A chest X-ray to see if the heart is enlarged
• Blood tests to check for heart strain (BNP test) or other causes
• A cardiac MRI for detailed pictures of the heart muscle
• A stress test to see how your heart reacts to exercise

What to expect at your appointment

If a test shows you have dilated cardiomyopathy, your doctor will explain what it means. You may be referred to a heart specialist (cardiologist). You will likely need regular check-ups to monitor your condition and adjust treatment as needed.

Treatment

Treatment aims to reduce symptoms, improve quality of life, and prevent the heart from getting worse. Many people live full lives with this condition when it is managed well. Treatment usually involves a combination of medicines, lifestyle changes, and sometimes devices or surgery.

Self-care at home

• Take all medicines exactly as prescribed and do not stop without talking to your doctor
• Weigh yourself regularly and report sudden weight gain (which can mean fluid build-up)
• Limit alcohol or stop drinking completely — your doctor can advise what is safe for you
• Avoid smoking and use of recreational drugs
• Learn to recognise warning signs and contact your care team early

Medical treatments

Doctors often prescribe medicines to help the heart pump more easily, reduce fluid build-up, and lower blood pressure. These may include beta-blockers, ACE inhibitors, diuretics, and other heart medications. The exact combination depends on your individual needs, and your doctor will adjust doses over time. There are also options like implantable devices (a pacemaker or a defibrillator) that can help monitor or correct dangerous rhythms. Always discuss the benefits and risks with your specialist.

When is surgery considered?

In severe cases, when medicines are not enough, surgery might be considered. This could include implanting a ventricular assist device (VAD) to help pump blood, or in very advanced cases, a heart transplant. These options are only for people with severe symptoms and are discussed carefully with the heart team.

Living with this condition

Living with dilated cardiomyopathy means paying attention to your body and pacing yourself. It is important to stay as active as you safely can, but also rest when you need to. Your doctor or nurse can help you plan daily activities that do not put too much strain on your heart.

Lifestyle tips

• Stay physically active with low-intensity activities like walking, light cycling, or swimming, as approved by your doctor
• Avoid heavy lifting or intense exercise that causes breathlessness
• Weigh yourself each morning and keep a record
• Limit salt in your diet to reduce fluid build-up
• Get a yearly flu vaccine and other recommended vaccines
• Tell your doctor and dentist about your heart condition before any procedure

Diet and exercise

A heart-friendly diet is rich in vegetables, fruits, whole grains, lean proteins, and healthy fats. Try to reduce salt — use herbs and spices instead. Stay hydrated, but follow your doctor's advice on how much fluid to drink. For exercise, aim for regular gentle activity, but avoid pushing yourself to exhaustion. Always stop if you feel dizzy or unusually short of breath.

Mental health and emotional wellbeing

Living with a heart condition can cause stress, anxiety, or low mood. It is normal to feel worried about the future. Talk to your doctor or a counselor if these feelings are affecting your daily life. Connecting with others who have the same condition can also help.

Prevention

Not all cases can be prevented, especially if it is genetic. But you can lower your risk by controlling high blood pressure, avoiding heavy drinking, not using recreational drugs, and treating infections that may affect the heart. If you have a family history, genetic testing and early heart checks may help find problems before symptoms appear.

Vaccines

Getting vaccinated against flu, pneumonia, and COVID-19 can help prevent infections that could worsen heart failure. Ask your pharmacist or GP about which vaccines are recommended for you.

Screening programmes

If you have a close relative with dilated cardiomyopathy, your doctor might suggest regular heart checks, even if you feel well. Genetic testing may be available through specialist services.

Complications

If left untreated

• Heart failure, where the heart is too weak to pump enough blood around the body
• Dangerous abnormal heart rhythms (arrhythmias) that can cause fainting or cardiac arrest
• Blood clots that can travel to the brain and cause a stroke
• Damage to other organs, such as the kidneys and liver, due to poor blood flow

Long-term outlook

The outlook for people with dilated cardiomyopathy is better than ever before. With modern treatments, many people live for years, or even decades, with a good quality of life. The condition is different for each person — some need more support, others manage well with medicines. Your healthcare team will work with you to give you the best possible long-term outcome. Staying informed and involved in your care makes a real difference.

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