Hypertrophic Cardiomyopathy (HCM)

Hypertrophic Cardiomyopathy (HCM)

Your heart is a muscle. Inside of it, there are four spaces, or chambers. If you have hypertrophic (hi-per-tro-fik) cardiomyopathy or HCM, your heart muscle gets thicker, making these chambers smaller. This may make it harder for your heart to pump blood out to your body.
If untreated or poorly managed, hypertrophic cardiomyopathy can cause other serious conditions such as heart failure, dangerous heart rhythms, and even sudden death. So finding it early is key.
HCM is usually passed down in families (inherited). If you or a family member has been diagnosed with HCM, be sure to talk with your clinician about genetic testing and screening.  
Also, it’s important to remember that you’re not alone. HCM is the most common genetic heart disease in the U.S. It affects at least 1 in 500 adults. But even more people may have it and not know they do.
As with any heart condition, it is important to take good care of yourself and follow your care team’s recommendations. Use this condition center to learn more about HCM.

Featured Tools

• Your Action Plan for Managing Hypertrophic Cardiomyopathy
• Weighing Different Treatments for HCM
• HCM Exercise Planning Worksheet
• HCM Exercise Weekly Planner
• Keeping Track of Symptoms and How HCM Affects Your Life
• HCM Medication List
• Stepping Up to HCM
• HCM Family Screening and Genetic Testing: What You Need to Know
• HCM Family Screening and Testing Worksheet

show more tools

Overview

Managing hypertrophic cardiomyopathy (HCM) is a team effort. You will likely be seen by several health care providers. It’s important to make sure everyone is on the same page and that your questions are answered.

Questions to Ask Your Doctor

Be sure to ask your health care team about your concerns, especially the following:

• When you or a parent, sister or brother who has HCM should be screened using either genetic testing or an imaging test
• Safe exercises and activities that should be avoided
• What signs and symptoms they would want to know about right away
• When to see a heart doctor with special training in HCM
• Finding support

Here are some other questions you might consider asking:

• How will having HCM affect my life?
• Can I still exercise?
• Is the thickening of my heart muscle affecting how my heart functions now?
• Mavacamten is now available for certain people with obstructive HCM. Is it an option for me? How does it work?
• Are there any medications that I should stop taking?
• How often will I have tests to see if my heart is OK?
• What cardiologist or center is expert in treating this condition?
• If I have a procedure done to remove part of the thickened heart muscle, will it grow back?
• When should I talk with my children or other family members about genetic testing or screening?
• What are the signs of worsening I should watch out for to suggest I need an adjustment in the treatment plan?

Signs and Symptoms

Many people with hypertrophic cardiomyopathy (HCM) have no or few symptoms. As a result, the condition may go unnoticed for a while:

• Until a doctor hears a heart murmur during an exam or sees something on a test, most commonly an electrocardiogram, or
• Because a close family member (parent or sibling) is diagnosed with it or known to have died suddenly at a young age.

How someone with HCM might feel varies widely, even among family members. It will depend on several factors. For example, how much thickening there is to the heart muscle, and whether it is slowing or blocking blood flow to the body.
The most common signs and symptoms are:  

• Feeling short of breath, especially when exercising or being active
• Dizziness or fainting
• Chest pain
• Heart palpitations or fluttering of the heart
• Being overly tired or having little energy to do usual activities

In many cases, symptoms may start only with exercise or when exerting oneself. For example, people often notice that an activity they used to do—jogging, hiking, or even climbing stairs—seems more difficult and leaves them short of breath. In some cases, they may even faint.
How does physical activity play a role in triggering symptoms? Normally, with exercise your heart pumps faster and stronger. It gets your blood pumping and improves circulation.
But because a thick heart muscle may already be blocking blood flow to the body, the body’s normal response to exercise can make the blockage worse and further reduce blood flow to the body. Being dehydrated also can make symptoms worse.
Although rare, HCM can cause life-threatening heart rhythms and sudden death if the condition isn’t found or well managed. Other complications can also develop. Early diagnosis and treatment are important.

Potential Complications

Several serious conditions or complications can develop if hypertrophic cardiomyopathy (HCM) is not properly identified or managed. These include:

• Blocked blood flow out of the heart: You may feel short of breath, dizzy, or have fainting spells or chest pain. If blood can’t easily leave the heart, it may prevent the mitral valve from closing. Blood can leak backward into the left atrium (mitral valve regurgitation).
  Heart failure: This can happen when the thickened muscle becomes so enlarged and stiff that 1) the heart can’t relax and fill with enough blood or 2) becomes weak and can’t pump well enough to meet your body’s needs.
  Blood clots: These can form in the heart because blood isn’t moving through the heart very well.
  Dangerous, rapid heart rhythms (arrhythmias): Ventricular tachycardia or atrial fibrillation, for example, may occur because the structural changes in the heart muscle can alter the heart’s electrical system that keeps the heart beating at a steady pace.
  Sudden cardiac death in rare cases: Many don’t know they have HCM. Sometimes, sudden cardiac death is the first sign. While rare, it can happen in people who seem healthy, including young athletes and other active adults.
  Infections of the heart valve (endocarditis)

Learning that you or a family member has HCM is the first step to stay as healthy as possible.

Treatment

Knowing that you have hypertrophic cardiomyopathy (HCM) is important so that your treatment can start as quickly as possible.
Your treatment plan will depend on several factors including:

• How much thickening you have in your heart muscle, and if it is obstructing or slowing blood flow leaving the heart
• How well your heart is pumping
• Your symptoms, such as any signs of heart failure or irregular heart rhythms
• Your risk of sudden cardiac death
• How the condition is affecting your life
• Your preferences and goals for care

Treatment may include a combination of medications, procedures, lifestyle changes, and ongoing follow-up visits and tests. Your care team will talk to you about the testing and treatment options, including the risks and benefits.
The overall goal of treatment will be to:

• Ease any symptoms for example, chest pain, heart failure, palpitations
• Prevent or lessen complications, such as blood clots, heart failure, or dangerous heart rhythms that can lead to sudden cardiac death

Treating other conditions that can affect your heart is also important—high blood pressure, high cholesterol, diabetes, smoking, sleep apnea, carrying too much weight. These all can make HCM worse.

Shared Decision-Making

With HCM, screening and treatment decisions are not always clear cut. What might be the right choice for one person may not be the one for another. Shared decision-making can help you work with your care team to find the right option for you.
In shared decision-making, you should speak up and let your care team know what is most important to you. With your values and goals in mind, you and your care team will review your treatment options, and the risks and benefits of each.
Together you will personalize your care decisions. 

Living With Hypertrophic Cardiomyopathy (HCM)

It’s important to remember that if you have hypertrophic cardiomyopathy (HCM), you were born with it—you didn’t do anything wrong.  
Still it’s normal to worry. You may feel anger or disbelief at first. But if you start to notice that fears of having this genetic condition—and how it might affect your heart and health – keep you up at night or are causing a lot of distress, talk with your care team.
Finding ways to keep a positive outlook and manage stress with calming relaxation exercises also can help.
As with any health issues, you are your best advocate. If something doesn’t quite feel right or you’re feeling unusually down for an extended period, talk with your doctor or nurse.
The good news is that most people have no or minimal symptoms throughout their life and even for those with symptoms, most people with HCM can lead a normal life with treatment and follow-up. 
Source: https://www.cardiosmart.org/topics/hypertrophic-cardiomyopathy