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WHAT YOU NEED TO KNOW:
What is restrictive cardiomyopathy?
Restrictive cardiomyopathy (RCM) is a disease of your heart muscle that causes the ventricles to become stiff or weak. The ventricles are the 2 lower chambers of your heart. They pump blood to your lungs and the rest of your body. When the ventricles are stiff or weak, your heart does not fill with enough blood. This decreases the blood and oxygen supply to the rest of your body.
What causes restrictive cardiomyopathy?
RCM is often caused by another disease. Diseases can occur in your heart muscle only or in another body organ that also leads to heart damage. The cause of your RCM may be a genetic disease that you were born with. Your risk for RCM may be increased if you have cancer, diabetes, or have had radiation treatments in the past. Ask for more information about these and other diseases that may lead to RCM:
- Infiltrative and storage diseases: Infiltrative and storage diseases occur when abnormal substances collect in your heart. These substances include minerals, proteins, lumps of cells, and fat. The substances can cause your ventricles to thicken and stiffen, which leads to RCM. These diseases include amyloidosis, Gaucher disease, Fabry disease, and sarcoidosis. Hemochromatosis is also a storage disease that can lead to RCM. This occurs when you have too much iron in your body that collects in your tissues, including your heart.
- Endomyocardial diseases: With endomyocardial disease, fibrosis (scarring) from radiation treatments, scleroderma, and other conditions occur in your heart. Scleroderma causes hardening of your skin and other tissues. Fibrosis causes the walls of your heart to thicken. Blood clots may also form in your heart and cause further damage.
What are the signs and symptoms of restrictive cardiomyopathy?
- Chest pain or trouble breathing
- Feeling dizzy or faint when you stand up quickly or exercise
- Fatigue and weakness
- Nausea and loss of appetite
- Weight gain and swelling in your legs, ankles, feet, and abdomen
- Feeling like your heart is beating fast, fluttering, or jumping in your chest
- Swollen or bulging neck veins
How is restrictive cardiomyopathy diagnosed?
Your caregiver will listen to your heart and lungs. He may check your abdomen, ankles, and feet for swelling. Tell him if you have other health conditions or family members with heart disease. Tell your caregiver if you smoke, drink alcohol, or take drugs. You may need the following tests:
- Blood and urine tests: A sample of your blood or urine may be sent to the lab for tests. The tests may help find the cause of your RCM. They may also tell if your organs, such as your liver and kidneys, are working correctly.
- EKG: This test records the electrical activity of your heart. It may show abnormal heartbeats or signals from changes to the heart muscle.
- Chest x-ray: This is used to check the size of your heart and look for fluid around your heart and lungs.
- An echocardiogram is a type of ultrasound. Sound waves are used to show the structure and function of your heart.
- CT scan: This test is also called a CAT scan. An x-ray machine uses a computer to take pictures of your heart. Caregivers can check your heart, the size of your ventricles, and see if you have fluid around your heart and lungs. You may be given a dye before the pictures are taken to help caregivers see the pictures better. Tell the caregiver if you have ever had an allergic reaction to contrast dye.
- Cardiac MRI (CMR): This scan uses powerful magnets and a computer to take pictures of your heart. A CMR may show the size of your heart and the thickness of your ventricles. It can also show if you have iron buildup in your heart. You may be given dye to help the pictures show up better. Tell the caregiver if you have ever had an allergic reaction to contrast dye. Do not enter the CMR room with anything metal. Metal can cause serious injury. Tell the caregiver if you have any metal in or on your body.
- Cardiac catheterization is a procedure used to look for or treat a heart condition. A catheter is inserted in your arm, neck, or groin and moved into your heart. Contrast liquid is injected into an artery and x-rays of your blood flow are taken. Tell a healthcare provider if you have ever had an allergic reaction to contrast liquid.
- Tissue biopsy: During this test, a small sample of tissue is taken from your heart or other tissues in your body. It helps caregivers see if you have scarring in your heart and learn the cause of your RCM.
What medicines are used to treat restrictive cardiomyopathy?
- Diuretics: This medicine helps decrease fluid around your lungs and heart. It also helps decrease extra fluid in your legs and ankles. You will urinate more often when you take diuretics.
- Blood thinners: Blood thinners help prevent blood clots. These include aspirin and warfarin. Take your medicine exactly as directed. Tell your caregiver if you forgot to take it or if you took too much. Blood thinners may cause you to bleed or bruise more easily. Use a soft toothbrush and an electric shaver. Wear medical alert jewelry or carry a card that says you take a blood thinner. Tell all caregivers, including your dentist, that you take this medicine.
- Heart medicine: This medicine helps strengthen or regulate your heartbeat.
- Blood pressure medicine: This is given to lower your blood pressure. A controlled blood pressure helps protect your organs, such as your heart, lungs, brain, and kidneys. Take your blood pressure medicine exactly as directed.
What treatments are used to treat restrictive cardiomyopathy?
- Pacemaker: This device is placed under your skin to help regulate your heartbeats.
- Implantable cardiac defibrillator: A cardiac defibrillator is placed under your skin to help prevent life-threatening arrhythmias (abnormal heartbeats).
- Left ventricle assist device (LVAD): This device is placed under your skin to help your heart pump better. You may need an LVAD while you are waiting for a heart transplant.
- Heart valve surgery: You may need to have a heart valve repaired or replaced so your heart can pump enough blood to your body. Heart valves allow blood flow between the chambers of your heart.
- Heart transplant: During a heart transplant, your diseased heart is removed and replaced with a donor heart.
What are the risks of restrictive cardiomyopathy?
You may bleed more than expected or get an infection after surgery. Without treatment, your heart may get weaker and your symptoms may get worse. You may have abnormal heartbeats, trouble breathing, or get a blood clot. The clot may travel to your heart or brain and cause a heart attack or stroke. Fluid may build up in your lungs and body. This may make it hard for you to breathe. Your liver and kidneys may fail. These problems can be life-threatening.
How can I manage my symptoms?
- Check your weight daily: Weight gain can be a sign of extra fluid in your body. Weigh yourself at the same time every morning. Use the same scale and weigh yourself before you eat and after you urinate. Record your weight and the time you weighed yourself in a diary. Bring your diary to your visits with your caregiver.
- Limit your liquids: Ask how much liquid to drink each day and which liquids are best for you. Your risk for fluid buildup and swelling increases if you drink too much liquid.
- Manage your health conditions: Health conditions, such as diabetes and high blood pressure, may make your symptoms worse and increase your risk for other heart problems.
- Exercise: Ask your caregiver about the best exercise plan for you. Exercise may help decrease your symptoms and improve your heart function.
- Eat a variety of healthy foods: Healthy foods include fruits, vegetables, whole-grain breads, low-fat dairy products, beans, lean meats, and fish. Limit the amount of sodium (salt) you eat. Too much sodium can cause swelling and make your symptoms worse. Ask how much sodium you can have each day. Pay careful attention to sodium content on food labels.
- Do not drink alcohol, smoke, or use drugs: If you smoke it is never too late to quit. Do not take any illegal street drugs. Alcohol, smoking, or illegal drugs can make your heart condition worse. Ask for information if you need help quitting.
When should I contact my caregiver?
Contact your caregiver if:
- You gain weight for no known reason.
- You feel weak or more tired than usual.
- You have increased swelling in your legs, ankles, feet, or abdomen.
- You have questions or concerns about your condition or care.
When should I seek immediate care?
Seek care immediately or call 911 if:
- You feel like your heart is beating faster than normal, fluttering, or jumping in your chest.
- You urinate less than usual or not at all.
- You have chest pain that may be worse when you take a deep breath or cough. You may cough up blood.
- You have a sudden cold sweat, especially with chest discomfort or trouble breathing.
- You feel very lightheaded or dizzy, especially with chest discomfort or trouble breathing.
- You have pain or discomfort in your back, neck, jaw, abdomen, or one or both of your arms.
- You have a severe headache or vision loss.
- You have weakness in an arm or leg.
- You are confused or have difficulty speaking.
- You suddenly have trouble breathing.
Care AgreementYou have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.
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