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Restrictive Cardiomyopathy

Topic Overview

The heart

What is restrictive cardiomyopathy?

Restrictive cardiomyopathy is a serious problem that makes your heart muscle stiff. When your heart muscle is stiff, it can't stretch to allow enough blood to enter its lower chambers, the ventricles . So blood that would normally enter the heart backs up in your circulatory system.

Most of the time, this leads to heart failure . Heart failure doesn't mean that your heart stops pumping. It means that your heart can't pump enough blood to meet your body's needs.

What causes restrictive cardiomyopathy?

Often the cause is never found. But we do know that there are a number of diseases or problems that can lead to restrictive cardiomyopathy. These include:

  • Cardiac amyloidosis , a buildup of an abnormal protein in the heart muscle.
  • Hemochromatosis , a buildup of iron in the heart muscle.
  • Sarcoidosis , a rare type of heart inflammation.
  • Radiation therapy and chemotherapy , used to treat cancer.
  • Carcinoid syndrome , a rare disease that causes certain chemicals to be released into the bloodstream. These chemicals can stiffen heart muscle.
  • Löeffler's syndrome and endomyocardial fibrosis, conditions that can cause scar tissue in the heart.
  • Genetic factors. You can inherit diseases, including Gaucher disease and Fabry's disease , that can lead to restrictive cardiomyopathy. But these diseases can be treated to prevent restrictive cardiomyopathy.

What are the symptoms?

You may not have any symptoms at first. Or you may have mild symptoms, such as feeling very tired or weak.

If your heart gets weaker, you will develop heart failure. When this happens, you will feel other symptoms, including:

  • Shortness of breath, especially with activity.
  • Tiredness.
  • Trouble breathing when you lie down.
  • Swelling in your legs.

Heart failure that suddenly gets worse is an emergency. Get medical help right away if:

  • You have severe trouble breathing.
  • You cough up pink, foamy mucus.
  • You have a new irregular or rapid heartbeat.

When you have heart failure, keeping track of your symptoms every day is important. Call your doctor if:

  • You have a sudden weight gain such as 3 lb (1.4 kg) or more in 2 to 3 days.
  • Your ability to exercise changes.
  • You have any change in your symptoms.

How is restrictive cardiomyopathy diagnosed?

Your doctor will ask questions about your symptoms and past health. He or she will want to know about recent illnesses and about heart disease in your family. Your doctor will listen to your heart and lungs and check your legs for fluid buildup.

You may also have other tests, including:

In some cases, a doctor may want to look at a small sample of heart tissue, called a biopsy , to make a definite diagnosis.

How is it treated?

Most of the time, treatment focuses on relieving symptoms, improving heart function, and helping you live longer. You may also have other treatment for the problem that is causing restrictive cardiomyopathy, such as medicines to get rid of too much iron in the heart muscle ( hemochromatosis ).

You will probably need to take several medicines to treat heart failure caused by restrictive cardiomyopathy. It's important to take your medicines exactly as your doctor tells you to and to keep taking them. If you don't, your heart failure could get worse.

Your doctor may suggest a mechanical device to help your heart pump blood or prevent life-threatening irregular heart rhythms. Such devices include a pacemaker , an implantable cardioverter-defibrillator (ICD) , or a combination pacemaker and ICD. If your condition is very bad, a heart transplant may be an option.

Self-care is an important part of your treatment. Self-care includes the things you can do every day to feel better, stay healthy, and avoid the hospital.

  • Take your medicines as prescribed. This gives you the best chance of being helped by them. Some medicines for heart failure include:
    • Angiotensin-converting enzyme (ACE) inhibitors or angiotensin II receptor blockers (ARBs). These make it easier for blood to flow.
    • Diuretics. These help remove excess fluid from the body.
    • Beta-blockers. These slow the heart rate and can help the heart fill with blood more completely.
  • Live a healthy lifestyle. This can help slow down heart failure. Limit salt, and don't smoke. Ask your doctor about how you can exercise safely. People who have heart failure from restrictive cardiomyopathy need to avoid doing too much, because their hearts can't increase blood flow during exercise.
  • Watch for signs that you're getting worse. Weighing yourself every day to watch for sudden weight gain is a good way to do this.
  • Find out what your triggers are, and learn to avoid them. Triggers are things that make your heart failure worse, often suddenly. A trigger may be eating too much salt, missing a dose of your medicine, or exercising too hard.

What can you expect with restrictive cardiomyopathy?

Most of the time, restrictive cardiomyopathy leads to heart failure. Heart failure usually gets worse over time. But treatment can slow the disease and help you feel better and live longer. If your doctor finds the cause of your restrictive cardiomyopathy, then the cause will also be treated, if possible.

Some people develop other problems, including:

If your disease is getting worse, you may want to think about making end-of-life decisions. It can be comforting to know that you will get the type of care you want.

Health Tools Health Tools help you make wise health decisions or take action to improve your health.

Health Tools help you make wise health decisions or take action to improve your health.


Decision Points focus on key medical care decisions that are important to many health problems. Decision Points focus on key medical care decisions that are important to many health problems.
  Heart Failure: Should I Get a Pacemaker (Cardiac Resynchronization Therapy)?
  Heart Failure: Should I Get an Implantable Cardioverter-Defibrillator (ICD)?

Actionsets help people take an active role in managing a health condition. Actionsets are designed to help people take an active role in managing a health condition.
  Healthy Eating: Eating Less Sodium
  Heart Failure: Avoiding Triggers for Sudden Heart Failure
  Heart Failure: Checking Your Weight
  Heart Failure: Taking Medicines Properly
  Heart Failure: Watching Your Fluids
  Low-Salt Diets: Eating Out

Other Places To Get Help

Organizations

American Heart Association (AHA)
7272 Greenville Avenue
Dallas, TX  75231
Phone: 1-800-AHA-USA1 (1-800-242-8721)
Web Address: www.heart.org
 

Visit the American Heart Association (AHA) website for information on physical activity, diet, and various heart-related conditions. You can search for information on heart disease and stroke, share information with friends and family, and use tools to help you make heart-healthy goals and plans. Contact the AHA to find your nearest local or state AHA group. The AHA provides brochures and information about support groups and community programs, including Mended Hearts, a nationwide organization whose members visit people with heart problems and provide information and support.


Heart Rhythm Society
1400 K Street NW
Suite 500
Washington, DC  20005
Phone: (202) 464-3400
Fax: (202) 464-3401
Web Address: www.hrsonline.org
 

The Heart Rhythm Society provides information for patients and the public about heart rhythm problems. The website includes a section that focuses on patient information. This information includes causes, prevention, tests, treatment, and patient stories about heart rhythm problems. You can use the Find a Specialist section of the website to search for a heart rhythm specialist practicing in your area.


National Heart, Lung, and Blood Institute (NHLBI)
P.O. Box 30105
Bethesda, MD  20824-0105
Phone: (301) 592-8573
Fax: (240) 629-3246
TDD: (240) 629-3255
Email: nhlbiinfo@nhlbi.nih.gov
Web Address: www.nhlbi.nih.gov
 

The U.S. National Heart, Lung, and Blood Institute (NHLBI) information center offers information and publications about preventing and treating:

  • Diseases affecting the heart and circulation, such as heart attacks, high cholesterol, high blood pressure, peripheral artery disease, and heart problems present at birth (congenital heart diseases).
  • Diseases that affect the lungs, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema, sleep apnea, and pneumonia.
  • Diseases that affect the blood, such as anemia, hemochromatosis, hemophilia, thalassemia, and von Willebrand disease.

National Institutes of Health Senior Health
9000 Rockville Pike
Bethesda, MD  20892
Phone: 1-800-222-2225 Aging Information Center
TDD: 1-800-222-4225
Email: custserv@nlm.nih.gov
Web Address: www.nihseniorhealth.gov
 

This website for older adults offers aging-related health information. The website's senior-friendly features include large print, simple navigation, and short, easy-to-read segments of information. A visitor to this website can click special buttons to hear the text aloud, make the text larger, or turn on higher contrast for easier viewing.

The site was developed by the National Institute on Aging and the National Library of Medicine, both part of the National Institutes of Health (NIH). NIHSeniorHealth features up-to-date health information from NIH. Also, the American Geriatrics Society provides independent review of some of the material found on this website.


References

Other Works Consulted

  • Hare JM (2012). The dilated, restrictive, and infiltrative cardiomyopathies. In RO Bonow et al., eds., Braunwald's Heart Disease: A Textbook of Cardiovascular Medicine, 9th ed., vol. 2, pp.1561–1581. Philadelphia: Saunders.
  • Hoit BD, Gupta S (2011). Restrictive, obliterative, and infiltrative cardiomyopathies. In V Fuster et al., eds., Hurst's the Heart, 13th ed., vol. 1, pp. 865–875. New York: McGraw-Hill.
  • Hunt SA, et al. (2009). 2009 focused update incorporated into the ACC/AHA 2005 guidelines for the diagnosis and management of heart failure in adults. A report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. Circulation, 119(14): e391–e479.

Credits

By Healthwise Staff
Primary Medical Reviewer Rakesh K. Pai, MD, FACC - Cardiology, Electrophysiology
Specialist Medical Reviewer Robert A. Kloner, MD, PhD - Cardiology
Last Revised July 24, 2012

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