Understanding Hypertrophic Cardiomyopathy (HCM)

What Is HCM?

Hypertrophic cardiomyopathy (HCM) is a genetic condition where the heart muscle thickens, often without an obvious cause. This thickening can make it harder for the heart to pump blood effectively and may lead to symptoms such as:

• Shortness of breath
• Chest pain
• Dizziness or fainting
• Fatigue
• Irregular heartbeats (arrhythmias)

HCM can affect people of all ages and is one of the leading causes of sudden cardiac arrest in young athletes.

Key Terms to Know

• Obstructive HCM: When the thickened heart muscle blocks or reduces blood flow out of the heart.
• Non-Obstructive HCM: Thickening of the heart muscle without affecting blood flow.
• Septal Myectomy: A surgical procedure to remove part of the thickened heart muscle.
• Implantable Cardioverter-Defibrillator (ICD): A device implanted in the chest to treat life-threatening arrhythmias.
• Subcutaneous ICD (S-ICD): A type of ICD implanted under the skin without wires in the heart, reducing complications.

Medication Terms

• Beta Blockers: Medications like metoprolol and atenolol that slow the heart rate and reduce the force of contraction.
• Calcium Channel Blockers: Drugs such as verapamil and diltiazem that relax the heart muscle.
• Antiarrhythmics: Medications like amiodarone used to manage irregular heart rhythms.
• Diuretics: Medications that reduce fluid buildup in the body.
• Anticoagulants: Blood thinners prescribed to reduce the risk of stroke.

Other Key Terms

• Genetic Testing: A method to identify mutations associated with HCM, which can help in early diagnosis and family screening.
• Echocardiogram: An ultrasound test used to visualize the heart’s structure and detect HCM.
• Electrocardiogram (EKG/ECG): A test that records the electrical activity of the heart and can detect abnormal rhythms or evidence of heart thickening.
• Holter Monitor: A portable device worn for 24–48 hours (or longer) to continuously record the heart’s electrical activity and identify arrhythmias or other abnormalities.
• Stress Test: A test that evaluates the heart's function during exercise or with medication to simulate exercise, often used to assess symptoms and blood flow in HCM patients.
• Cardiac MRI: An imaging test that provides detailed pictures of the heart, helping to assess the extent of muscle thickening and scarring.
• Myocardial Fibrosis: Scarring of the heart muscle that can occur in HCM and may increase the risk of arrhythmias.
• Atrial Fibrillation (AFib): A common irregular heart rhythm in HCM patients that increases the risk of stroke and requires monitoring and treatment.
• Left Ventricular Outflow Tract (LVOT): The pathway through which blood flows out of the heart; often narrowed in obstructive HCM.
• Sudden Cardiac Arrest (SCA): A life-threatening event where the heart suddenly stops beating due to electrical issues, often associated with HCM.

Frequently Asked Questions

Q: Is HCM hereditary?
A: Yes, HCM is typically inherited in an autosomal dominant pattern. Genetic testing can help identify at-risk individuals.

Q: How is HCM diagnosed?
A: HCM is diagnosed through echocardiograms, MRIs, or genetic testing, often combined with family medical history.

Q: Can people with HCM exercise?
A: Moderate, non-competitive exercise is often encouraged, but high-intensity sports should be avoided.

Exercise and HCM: Finding the Right Balance

Exercise plays an essential role in maintaining overall health and well-being, even for individuals with hypertrophic cardiomyopathy (HCM). While certain precautions are necessary, the goal is to help patients stay active safely and confidently through collaboration with their healthcare team.

Shared Decision-Making

The intensity and type of exercise appropriate for you will depend on several factors, including the severity of your HCM, presence of symptoms, and other health considerations. It’s important to work closely with your physician to develop a personalized exercise plan that balances safety with your fitness goals.

Levels of Exercise Intensity

1. Low-Intensity Exercise: Activities like walking, light yoga, or casual cycling are generally safe for most people with HCM. These activities can help maintain cardiovascular health without placing excessive strain on the heart.
2. Moderate-Intensity Exercise: Activities like brisk walking, swimming (non-competitive), or stationary cycling may be appropriate for some individuals. The suitability of these activities should be discussed with your doctor, considering your specific condition.
3. High-Intensity and Competitive Sports: High-intensity activities, especially those involving sudden bursts of effort (e.g., sprinting, heavy weightlifting, or contact sports), may pose a higher risk for people with HCM. However, emerging research supports carefully monitored participation in some cases under expert guidance.

Guiding Principles for Exercise with HCM

1. Individualized Approach: No two HCM patients are the same. Your exercise plan should be based on your unique medical history and fitness goals.
2. Symptom Awareness: Stop exercise immediately if you experience chest pain, dizziness, fainting, or extreme fatigue. Always consult your doctor if symptoms persist.
3. Hydration and Environment: Stay well-hydrated and avoid exercising in extreme heat or humidity.
4. Regular Check-Ups: Periodic evaluations with your cardiologist can help adjust your exercise recommendations as needed.

The Role of Exercise Testing

Cardiopulmonary exercise testing (CPET) may be used by your doctor to assess how your heart responds to exercise and to create a safe, personalized exercise plan.

Empowering Safe Exercise

With proper guidance and monitoring, exercise can be a safe and rewarding part of your life. Remember, staying active is not only about your physical health but also your mental and emotional well-being.

Mental Health and HCM

Living with hypertrophic cardiomyopathy (HCM) can bring emotional and psychological challenges for both patients and caregivers. Navigating a chronic condition, managing symptoms, and coping with lifestyle adjustments may lead to feelings of anxiety, depression, or stress. Prioritizing mental health is an important part of holistic care.

Common Emotional Challenges

1. Anxiety: Concerns about symptoms, sudden cardiac arrest risks, or genetic implications.
2. Depression: Feelings of isolation or sadness related to lifestyle changes and the diagnosis.
3. Adjustment Stress: Coping with new routines, treatment plans, and activity limitations.

Tips for Maintaining Mental Wellness

1. Seek Support: Join support groups or talk to others living with HCM. Shared experiences can reduce feelings of isolation.
2. Practice Self-Care: Engage in activities that bring joy, relaxation, and balance to your life.
3. Communicate Openly: Share your concerns with your healthcare team, family, or friends.
4. Mindfulness and Relaxation: Techniques like meditation, yoga, or deep breathing can help manage stress.

Professional Support

1. Therapists and Counselors: Consider speaking with a mental health professional familiar with chronic illness.
2. Psychiatrists: They can assess and treat more complex mental health challenges, including prescribing medications if needed.

Resources for Mental Health

1. National Alliance on Mental Illness (NAMI): Support for individuals managing mental health conditions.
2. Anxiety and Depression Association of America (ADAA): Resources for managing anxiety and depression.

Remember: You’re not alone. Prioritizing mental health is a vital part of thriving with HCM.

Emergency Preparedness

For individuals with HCM, knowing CPR and having access to automated external defibrillators (AEDs) can save lives. Ensure your school, workplace, or gym is equipped with an AED and that people are trained to use it.