Hypertrophic Cardiomyopathy

WHAT YOU SHOULD KNOW:

• Hypertrophic (hi-per-TRO-fik) cardiomyopathy (kar-d-o-mi-AH-puh-thee) (HCM) is a disease of the heart. In HCM, the wall of the left ventricle of the heart muscle becomes too thick and too stiff. Sometimes, this thickening only happens in some parts of the heart. When it blocks the flow of blood in the heart, it is called idiopathic (ih-d-o-PATH-ik) hypertrophic subaortic (sub-a-OR-tik) stenosis (IHSS). Idiopathic means that no one is sure of what causes the disease.
  
  
• HCM is a disease of the heart muscle that causes the septum (wall) of the left ventricle to hypertrophy (thicken). This makes it difficult for the ventricle to contract (pump) and then to relax. There is not enough space inside the chamber because the muscle is so thick. With so little space, not very much blood can flow into the left ventricle. In some cases, the mitral valve (door) between the left atrium and ventricle gets pushed aside by the large ventricular muscle. When this happens, the mitral valve cannot open and close correctly and may get in the way of the blood pumping out of the heart.
  
  
• Many tests, such as chest x-rays and EKGs are done to learn if your heart disease is getting worse. These tests may be done more than once over time. Treatment of HCM depends on how much the disease has affected your health. You may need to decrease your activities. Caregivers may give you medicine to treat or prevent problems. With time you may need heart surgery.

CARE AGREEMENT:

You 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.

RISKS:

HCM causes the heart muscle to get larger, making it harder for your heart to pump. Usually HCM can be treated, but not cured. Even with treatment, your symptoms may get worse with time. You may not be able to do the things you used to do. Fluid may fill your lungs, and your heart and liver may get very large. You may have an abnormal heartbeat. Without treatment, your heart may fail and you may die.

WHILE YOU ARE HERE:

Activity:

• You may need to rest in bed. Until you are allowed out of bed, ask your caregivers if you may exercise your legs in bed. Do this by lifting one leg off the bed and drawing big circles with your toes. Then do it with the other leg. Another good exercise is to lie on your side and pretend to pedal a bike. This may help your legs become stronger and it may stop blood clots from forming. Stop pedaling if you become tired.
  
  
• Your caregiver will tell you when it is OK to get out of bed. Call your caregiver before getting up for the first time. If you ever feel weak or dizzy, sit or lie down right away. Then call your caregiver.

Call button:

You may use the call button when you need your caregiver. Pain, trouble breathing, or wanting to get out of bed are good reasons to call. The call button should always be close enough for you to reach it.

Day/night confusion:

If you stay in an intensive care unit (ICU), you may not know when it is daytime or nighttime. This is common for patients staying in ICU. Having the lights on all the time can cause it. The lights may cause you to feel or act confused. When you are moved to a room on a regular floor, you will become more aware of time.

Gown:

A hospital gown is used so that caregivers can easily check and treat you. Caregivers will show you how to put on your gown. When you feel better you may be able to wear your own gown or pajamas.

Informed consent:

A consent form is a legal document that explains the tests, treatments, or procedures that you may need. Informed consent means you understand what will be done and can make decisions about what you want. You give your permission when you sign the consent form. You can have someone sign this form for you if you are not able to sign it. You have the right to understand your medical care in words you know. Before you sign the consent form, understand the risks and benefits of what will be done. Make sure all your questions are answered.

Intake and output:

Caregivers will keep track of the amount of liquid you are getting. They also may need to know how much you are urinating. Ask how much liquid you should drink each day. Ask caregivers if they need to measure or collect your urine.

Vital signs:

Caregivers will check your blood pressure, heart rate, breathing rate, and temperature. They will also ask about your pain. These vital signs give caregivers information about your current health.

Weight:

You may be weighed each day. Caregivers compare your weight from day to day to record how much body fluid you have. You can become dehydrated if you lose too much. You can have shortness of breath or swelling in your legs if you retain too much.

Special equipment:

Special tubes:

Some tubes may be put into an artery or vein before, during, or after surgery. These will help caregivers watch how you are doing during or after surgery.

• Heart monitor: This is also called an ECG or EKG. Sticky pads placed on your skin record your heart's electrical activity.
  
  
• IV: An IV (intravenous) is a small tube placed in your vein that is used to give you medicine or liquids.
  
  
• Pulmonary artery catheter: This is a balloon-tipped catheter (thin tube) inserted through a vein in your neck or groin. The pulmonary artery (PA) catheter goes into the right side of your heart and continues to your pulmonary artery. The balloon is inflated to wedge the catheter in place. The PA catheter has a device in it that measures the pressure in your heart and lungs. The catheter is attached to a monitor that shows the pressure measurements. The measurements can also show caregivers how your heart responds to certain heart medicines.
  
  
• Pulse oximeter: A pulse oximeter is a device that measures the amount of oxygen in your blood. A cord with a clip or sticky strip is placed on your finger, ear, or toe. The other end of the cord is hooked to a machine. Never turn the pulse oximeter or alarm off. An alarm will sound if your oxygen level is low or cannot be read.

Tests:

Following are tests that may be done to help your caregivers know how your heart condition is doing and how to help you:

• Blood gases: This is also called an arterial blood gas, or ABG. Blood is taken from an artery (blood vessel) in your wrist, arm, or groin. Your blood is tested for the amount of oxygen and carbon dioxide in it. The results can tell caregivers how well your lungs are working.
  
  
• Blood tests: You may need blood taken to give caregivers information about how your body is working. The blood may be taken from your hand, arm, or IV.
  
  
• Chest x-ray: This is a picture of your lungs and heart. Caregivers use it to see how your lungs and heart are doing. Caregivers may use the x-ray to look for signs of infection like pneumonia, or to look for collapsed lungs. Chest x-rays may show tumors, broken ribs, or fluid around the heart and lungs.
  
  
• Echocardiogram: This test is a type of ultrasound. Sound waves are used to show the structure, movement, and blood vessels of your heart.
  
  
• Myocardial (mi-o-KAR-d-ull) biopsy (BI-op-c): Caregivers may want to do a biopsy of your heart muscle to help rule out (decide against) other heart problems. Caregivers will clean and put numbing medicine into the skin of your chest to make you lose feeling. A small piece of tissue will be removed from your heart and sent to the lab for tests. After the biopsy, you may need stitches to close the wound. A bandage will be put over the biopsy area.
  
  
• Heart monitor: This test is also called an EKG or ECG. Sticky pads are placed on your skin to record your heart's electrical activity. An EKG gives information about how your heart is working. Lie as still as possible during the test.
  
  
• Ultrasound with Color Flow Doppler: This is a test using sound waves to look at your heart. Pictures show up on a TV-like screen. Doppler adds color and sound to show blood flow. You may need the ultrasound to see how large the left ventricle is and how it contracts. The ultrasound also can show if anything is obstructing (stopping) blood flow.

Treatment options:

• Deep breathing and coughing: Deep breathing helps to open the air passages in your lungs. Coughing helps to bring up sputum (mucus) from your lungs. You can deep breathe and cough on your own, or with the help of an incentive spirometer.
  
  
  • Take a deep breath and hold the breath as long as you can. Then push the air out of your lungs with a deep, strong cough. Put any sputum that you have coughed up into a tissue and throw it away. Take 10 deep breaths in a row every hour that you are awake, even during the night. Remember to follow each deep breath with a cough.
    
    
  • An incentive spirometer can help you take deeper breaths. Put the plastic piece into your mouth and take a steady, deep breath in. Hold your breath as long as you can, and then exhale (breathe out). Use your incentive spirometer 10 times every hour that you are awake, even during the night.
  
  
• Good nutrition for your heart: Get enough calories, protein, vitamins, and minerals to help prevent poor nutrition and muscle wasting. You may be told to eat foods low in cholesterol or sodium (salt). You also may be told to limit saturated and trans fats. Do eat foods that contain healthy fats, such as walnuts, salmon, and canola and soybean oils. Eat foods that help protect the heart, including plenty of fruits and vegetables, nuts, and sources of fiber. Ask what a healthy weight is for you. Set goals to reach and stay at that weight.
  
  
• Medicine: You may need one or more of the following medicines to treat or prevent HCM or the problems caused by HCM.
  
  
  • Antianxiety medicine: This medicine may be given to decrease anxiety and help you feel calm and relaxed.
    
    
  • Antibiotics (an-ti-bi-AH-tiks): This medicine may be given to prevent or fight infections caused by a germ called bacteria (bak-TEER-e-uh), such as infections of the heart valves.
    
    
  • 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.
    
    
  • Blood thinners: This medicine helps prevent clots from forming in the blood. Clots can cause strokes, heart attacks, and death. Blood thinners make it more likely for you to bleed or bruise. Use an electric razor and soft toothbrush to help prevent bleeding.
    
    
  • Diuretics: This medicine is given to decrease edema (excess fluid) that collects in a part of your body, such as your legs. Diuretics can also remove excess fluid from around your heart or lungs and decrease your blood pressure. It is often called water pills. You may urinate more often when you take this medicine.
    
    
  • Heart medicine: This medicine is given to strengthen or regulate your heartbeat. It also may help your heart in other ways. Talk with your caregiver to find out what your heart medicine is and why you are taking it.
    
    
  • Stool softeners: This medicine makes it easier for you to have a bowel movement. You may need this medicine to treat or prevent constipation.
  
  
• Oxygen: You may need extra oxygen if your blood oxygen level is lower than it should be. You may get oxygen through a mask placed over your nose and mouth or through small tubes placed in your nostrils. Ask your caregiver before you take off the mask or oxygen tubing.
  
  
• Support socks: You may need to wear support socks. The support socks are also called Ted Hose® or Jobst Stockings®. These socks may help decrease the swelling in your legs until you are walking more. They may also keep blood from staying in your legs and causing clots.
  
  
• Pneumatic boots: Inflatable boots are put on your legs. The boots are connected to an air pump. The pump tightens and loosens different areas of the boots. This helps improve blood flow to prevent clots.
  
  
• Surgery. You may need one of the following surgeries:
  
  
  • Mitral valve repair or replacement.
    
    
  • Myectomy (mi-EK-tuh-me) is surgery to cut out part of the enlarged septum in the left ventricle.

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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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