Cardiomyopathy

• Cardiomyopathy can occur in young people.

• The condition tends to be progressive. Sometimes it worsens quickly.

• It may be associated with diseases involving other organs, as well as the heart.

• Dilated cardiomyopathy is a leading cause for a heart transplant.

• It is often the result of gradual changes of heart structure over time

Viral infections in the heart are a major cause of cardiomyopathy. In some cases, another disease or its treatment causes cardiomyopathy. This might include complex congenital (present at birth) heart disease, nutritional deficiencies, uncontrollable, fast heart rhythms, or certain types of chemotherapy for cancer. Sometimes, cardiomyopathy can be linked to a genetic defect. Other times, the cause is unknown. There are 4 types of cardiomyopathy that can affect both adults and children:

• Dilated cardiomyopathy (DCM)

• Hypertrophic cardiomyopathy (HCM)

• Restrictive cardiomyopathy (RCM)

• Arrhythmic right ventricular cardiomyopathy (ARVC)

HCM is a genetic problem that you inherit from your parents. It leads to the thickening of the left ventricle. How exactly this happens is not yet clear.

HCM is autosomal dominant. This means you need an abnormal gene from only one of your parents to have it. But even if you have an abnormal gene, you might not develop HCM. Researchers are still trying to understand what other factors increase the chances of having the disease.

You may have no symptoms with hypertrophic cardiomyopathy. If symptoms do occur, they most likely appear when you exert yourself. Symptoms may include:

• Problems catching your breath

• Unexplained tiredness

• Lightheadedness, dizzy spells, or fainting

• Rapid, pounding heartbeat

• Chest tightness or pressure

• Fluid retention resulting in swollen feet or ankles or unexplained weight gain

If you have cardiomyopathy, you have a problem with the muscle tissue that makes up your heart. Dilated cardiomyopathy is the most common type of cardiomyopathy. It happens when the walls of the heart become thin and the heart gets larger. As a result, your heart may not be pumping as well as it should. This can cause severe problems for the rest of your body. It can also make existing heart problems worse. You and your healthcare provider can work together to help your heart function better and reduce the effects on your life.

What causes dilated cardiomyopathy?

Many different causes can lead to DCM. They include:

• Infections such as HIV, Lyme disease, and Chagas disease
• Autoimmune disease such as polymyositis

• Alcohol abuse, cocaine use, exposure to heavy metals, and certain chemotherapy medicines

• Thyroid disease

• Diabetes

• High blood pressure

• Irregular heart rhythms

• Response to heart attack or blocked heart arteries (coronary artery disease)

• Heart valve problems

• Nutritional or electrolyte problems (rare in the U.S.)

• Pregnancy (develops shortly before or after birth)

• Inherited conditions such as muscular dystrophy

DCM sometimes has different names. For example, alcoholic cardiomyopathy is another name for DCM that occurs from alcohol abuse.

A range of genetic diseases can also cause DCM. These people have what is called familial dilated cardiomyopathy.

For many people with DCM, the cause is unknown. This is called idiopathic dilated cardiomyopathy.

Symptoms of dilated cardiomyopathy

Common symptoms include:

• Shortness of breath, especially when you exert yourself

• Unexplained tiredness

• Chest pain

• Fluid buildup in the lungs

• Fluid buildup causing swollen feet or ankles or unexplained weight gain

• Heart skipping beats, fluttering, or thumping

• Fainting, dizziness, or lightheadedness

• Swelling of the veins of the neck

• Swelling in the belly (abdomen) with less appetite

Restrictive cardiomyopathy (RCM) is a condition where the chambers of the heart become stiff over time. Though the heart is able to squeeze well, it's not able to relax between beats normally. This makes it harder for the heart to fill with blood. The blood backs up in the circulatory system. This can cause fluid to build up in the body including the lungs, which leads to many of the symptoms of the condition. It also increases the pressure inside the ventricles and the atria can become enlarged. There is also an increased risk for irregular heart rhythms. Eventually this disease makes the heart unable to pump as much blood out to the body as it normally would. Most people with RCM eventually develop heart failure. RCM is a fairly uncommon form of cardiomyopathy. It can affect people at any age.

What causes restrictive cardiomyopathy?

Many different causes can lead to RCM. These are mostly other health conditions. They include:

• Amyloidosis, an abnormal buildup of protein in organs and tissues. This is the most common cause of RCM.

• Hemochromatosis, a condition that occurs from an iron overload in the heart and body

• Sarcoidosis, a disease that causes scarring of the heart

• Eosinophilic endomyocardial disease, a disease caused by certain tumors, lymphomas, or parasitic disease

• Scleroderma, a disease that causes hardening of tissues in the body

• Radiation-induced heart disease, a condition that may occur from cancer radiation treatment

• Certain rare genetic conditions. You may have increased risk if you have a family member with RCM.

In some cases, the cause of RCM is not known.

What are the symptoms of restrictive cardiomyopathy?

In its early stages, RCM may not have any symptoms. These may worsen slowly or more quickly. Some symptoms include:

• Shortness of breath with exertion. This may progress to shortness of breath when at rest.

• Shortness of breath when lying flat

• Fatigue

• Swelling in the legs and other areas

• Fainting

• Weakness or lightheadedness

• Cough

• Abnormal heart rhythms

Arrhythmogenic right ventricular cardiomyopathy (ARVC) is a disease of the heart muscle. In this disease, fatty fibrous tissue replaces normal heart muscle. This interrupts normal electrical signals in the heart and may cause irregular and potentially life-threatening heart rhythms. The heart also becomes weaker over time leading to heart failure. It was previously called arrhythmogenic right ventricular dysplasia (or ARVD).

ARVC typically begins in a small part of the right ventricle. Over time, the disease slowly affects more of the right ventricle. Sometimes the left ventricle is affected, too. This can lead to abnormal heart rhythms, and sometimes sudden death. Over time, the heart can’t pump as much blood forward as it normally would. Blood backs up in the circulatory system causing fluid to build up in the soft tissues or the lungs. This can lead to many symptoms such as swelling (edema) and shortness of breath. This is called heart failure.

ARVC is a fairly rare genetic disease. It usually starts between the ages of 10 and 50 years old. The severity of the disease varies a great deal between people.

What causes ARVC?

ARVC results from a genetic defect. Genes are part of your DNA, the material passed down from parents to children. This genetic defect leads to the replacement of normal heart tissue with fatty or fibrous tissue. How this happens is not yet clear.

Most cases of ARVC are from an autosomal dominant inheritance. This means you need an abnormal gene from only one of your parents to have it. Still, even if you have an abnormal gene, you might not develop any major symptoms from ARVC. Researchers are still trying to understand what other factors may increase disease severity.

What are the symptoms of ARVC?

Symptoms of ARVC tend to get worse over time as the disease affects more of the heart. Some people with ARVC show no symptoms. And others may have more severe symptoms. These may include:

• Fainting

• Heart palpitations with unpleasant awareness of the heartbeat

• Dizziness

• Shortness of breath with exertion or when lying down

• Chest pain

• Fatigue

• Swelling in the legs and other areas

• Persistent cough

• Sudden death due to an abnormal heart rhythm

Heart palpitations and fainting are common early symptoms. Unfortunately, sudden death is also sometimes the first symptom of ARVC. The other symptoms tend to come on more gradually.

Your doctor will outline a treatment plan to help you live better with cardiomyopathy. This will stop your condition from getting worse and possibly causing serious problems for your heart and lungs. Be sure to follow your healthcare provider's instructions. You can also make some lifestyle changes that will help your heart.

Follow your treatment plan

Be sure to visit your healthcare provider regularly. Mention any problems you are having with your treatment plan. Be honest if you are not doing something your provider has suggested. He or she may be able to make some changes to help your plan work better for you. Not following your provider's advice could result in a serious or life-threatening complication. You would need to stay in the hospital.

Balance activity and rest

Having cardiomyopathy may mean you get tired more quickly because your heart doesn't work as well as it should. But this shouldn’t keep you from being active. In fact, being active may help you feel better. Talk with your healthcare provider about how much activity is right for you.

Take steps to help your heart

• Stop smoking. Smoking damages your heart muscle and blood vessels. It also causes changes to your lungs that can make it more difficult to breathe and for your lungs to work. Smoking reduces the oxygen in your blood. Having less oxygen in your blood will cause your heart to work harder and beat faster. This can cause a heart attack if your heart can't handle this extra work. This kind of heart attack is known as an acute myocardial infarction (AMI).

• Lose any excess weight. The more extra pounds you have, the harder your heart has to work to pump blood through your body. Extra weight can also raise your risk for high blood pressure and diabetes. These diseases can further damage your blood vessels and heart.

• Don't drink alcohol. Drinking alcohol may make your cardiomyopathy worse. Alcohol breaks down the heart tissue. This affects how well your heart pumps. This can be very serious in people with alcoholism.

• Eat less salt. Salt is the main source of sodium in our diet. Too much sodium can make the symptoms of cardiomyopathy worse. Salt causes your body to retain water. This extra fluid makes your heart work harder. Your healthcare provider may tell you to limit how much sodium you have to less than 1,500 mg a day. That’s about half a teaspoon of salt.

Keep track of your weight

Rapid weight gain may mean that you are retaining fluid. This is one of the signs of heart failure. Keeping track of your weight helps you notice this weight gain early and prevent further damage to your heart. To keep track of your weight:

• Weigh yourself at the same time each day, after you urinate. Wear the same thing each time. Write down your weight each day.

• Don’t stop weighing yourself. If you forget one day, weigh again the next morning.

Call your healthcare provider if you gain more than 2 pounds in 1 day, more than 5 pounds in 1 week, or whatever weight gain you were told to report by your provider.

Home care

Work hard to remove the salt from your diet. Here are tips:

• Limit canned, dried, packaged, and fast foods.

• Don’t add salt to your food at the table.

• Season foods with herbs instead of salt when you cook.

• When you eat out, ask that the chef not add any salt to your dish.

• Don't eat fried or greasy foods.

• Be careful of bottled beverages. They can contain a lot of salt.

Also check the labels of over-the-counter medicines and supplements. They may be high in sodium. Ask your pharmacist or provider if you need help finding a low-salt product.

Be as active as you can. Ask your healthcare provider how to get started:

• Simple activities such as walking or gardening can help.

• Find activities you enjoy and make them a priority.

• Cardiac rehabilitation programs can help you reach your activity goals. You exercise while staff closely watches the stress on your heart. These programs may be covered by insurance.

Other tips for home care:

• Limit how much fluid you have each day. Your healthcare provider will tell you how much is safe.

• Break the smoking habit. Enroll in a stop-smoking program to improve your chances of success. Join smoking cessation support groups or ask your healthcare provider about nicotine replacement products.

• Take your medicines exactly as directed. Don’t skip doses. Don’t stop taking your medicines without talking to your healthcare provider first.

• Some over-the-counter medicines and herbal supplements can increase your heart rate or blood pressure. This can put extra stress on your heart. Check with your pharmacist to see if products are heart-safe and won't interact with other medicines you take.

• Visit your healthcare provider regularly. Mention any problems with your treatment plan. Together you can find a plan that works for you.

• Weigh yourself at the same time each day. The best time is in the morning after you wake up and after urinating. Wear the same clothing each time. Keep a written record of your daily weight.

• Limit how much alcohol you drink. Too much alcohol isn't good for the heart. Healthcare providers advise no more than 1 drink per day for women and 2 drinks per day for men.

Contact your healthcare provider if you:

• Faint or have dizzy spells

• Notice new symptoms from your medicine

• Have a new onset of coughing. This is especially true if the sputum is frothy or foamy.

• Have trouble breathing, especially if it occurs while at rest or lying down. Or if you have trouble breathing during exercise or even while walking short distances.

• Get tired faster

• Begin urinating less often

• Find that your feet or ankles swell more than usual. Or if you have swelling in your legs or abdomen, or if the veins in your neck stick out more than usual. You may notice it is harder to get your shoes or pants because of swelling and bloating.

• Have tightness or pain in your chest, arm, jaw, or back