Hypertrophic Cardiomyopathy (HCM)

Hypertrophic cardiomyopathy (HCM) is a heart condition that causes abnormal thickening, or hypertrophy, of the heart muscle. This can create problems with blood flow through the heart, life-threatening arrhythmias, and strokes.

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HCM is caused by an abnormal genetic change, also called a mutation or pathogenic variant. The affected gene helps the body produce and regulate proteins involved in contraction of heart muscle cells. Most people with HCM have inherited the genetic change from one of their parents and can pass it on to their children. That’s why it’s especially important to get care for HCM from a team with expertise in inherited heart disease.

While there isn’t a cure for HCM, the UI Heart and Vascular Center team can help you feel better and keep enjoying the activities you love. They can also test your family members who might be at risk for HCM.

Our HCM program is the only one in Iowa designated as a Center of Excellence by the Hypertrophic Cardiomyopathy Association.

Hypertrophic cardiomyopathy symptoms and diagnosis

In many cases, HCM causes no symptoms. When symptoms do occur, they may include:

Chest pain
Dizziness or fainting (syncope)
Heart palpitations or irregular heart rhythm (arrhythmia)
Shortness of breath
Stroke

If you have any of these symptoms, see a primary care provider or a cardiac specialist right away. HCM can cause sudden death, even in people who don’t have symptoms, so early evaluation and treatment are essential.

How HCM is diagnosed

Your cardiologist will start by giving you a thorough physical exam. The tests that help our specialists diagnose HCM include:

Electrocardiogram (ECG or EKG): a non-invasive map of the electrical activity of your heart
ECG monitor, or Holter monitor: worn at home for 24 to 48 hours to record heart activity
Echocardiogram: a non-invasive ultrasound image of your heart
Cardiac MRI: non-invasive imaging by a scanner that uses magnetic fields and radio waves
Exercise stress echocardiogram: test to show how well your heart works during exercise
Genetic testing: a blood test to identify the genetic change that’s causing your HCM

HCM treatment at the UI Heart and Vascular Center

Many people with HCM need very little treatment or don’t need care beyond regular monitoring.

Medications for HCM

HCM treatment can include medication to slow down your heart rate and help your heart pump more effectively. HCM medications include:

Beta blockers to block adrenaline that can cause your heart to beat faster
Calcium channel blockers that decrease heart rate by slowing down the heart’s absorption of calcium
Antiarrhythmics that maintain your heart rhythm
Diuretics that help your kidneys pull excess water and salt out of the body, making it easier for your heart to pump

Procedures to treat HCM

If your heart muscle is abnormally thick, a procedure to trim it down might be an option:

Surgical myectomy: an open-heart procedure to remove part of the thickened septum between the heart ventricles
Alcohol septal ablation: a minimally invasive procedure that thins out thickened heart tissue with injections of alcohol

If your genetic cardiologist finds that you’re at risk for sudden cardiac death, you might be a candidate for a device implanted under the skin:

Implantable cardioverter defibrillator: device similar to a pacemaker that monitors your heartbeat and delivers an electric current if it beats too quickly

If your genetic cardiologist finds that you’re at risk for strokes, you might be a candidate for lifelong blood thinners.

Monitoring

Your providers will customize a plan to monitor your HCM to see whether it remains stable.

If you don’t have symptoms: You’ll likely be monitored with an ECG, Holter monitor, and echocardiogram once a year.
If you have arrhythmia but no symptoms: Your genetic cardiologist may recommend an implantable loop recorder (ILR) for long-term monitoring. An ILR is a device that’s placed under the skin of your chest.
If you have symptoms: Your genetic cardiologist may want to see you for tests every three to six months.

Managing your HCM

With regular heart care, most people with HCM live long, healthy lives. You can stay healthy with the following lifestyle changes:

Mild to moderate nonstrenuous exercise like walking or biking
A diet low in salt and saturated fat

The HCM team

When you choose the UI Heart and Vascular Center for HCM treatment, you receive leading-edge care and coordinated services all at one location. Our nurse manager will coordinate all your appointments, serve as your point of contact, and walk you through every step of diagnosis and treatment.

We have one of the largest HCM teams in the country. In addition to your cardiologist and genetic counselor, other members of the HCM team who are part of your treatment plan might include the following experts:

Electrophysiologist who tests your heart’s electrical activity, places a defibrillator if you need one, and performs arrhythmia ablations
Interventional cardiologist who can assess the blood flow in your heart and perform alcohol septal ablation if you need it
Cardiac surgeon who will perform any surgical procedures you may need
Sleep medicine specialist if your HCM is causing sleep problems
Psychiatrist who will help you if your HCM is a factor in depression, panic attacks, or other issues

If other members of your family have HCM, we’ll work to coordinate your appointments with those of your parents, siblings, and children. We also coordinate care with the pediatric cardiology team if your child is diagnosed with HCM.

Discovering new treatments for HCM

Our research has led to new treatments for HCM. We also participate in clinical studies to expand treatment options, so you might be eligible to take part in a clinical trial of the very newest treatments.

Our experts helped develop mavacamten, a new HCM drug, and our researchers are testing new therapies and diagnostic tools for heart failure and arrhythmias. They’re also investigating the genetics of sudden cardiac death.