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Hypertrophic Cardiomyopathy

What is Hypertrophic Cardiomyopathy?

Hypertrophic cardiomyopathy (HCM) is one of the two main types of cardiomyopathy. In HCM, the heart muscle thickens and becomes stiffer, making it difficult for the heart to pump blood with oxygen to the body. This can lead to complications such as irregular heart rhythm (called atrial fibrillation), heart valve disease, fainting, heart failure and sudden cardiac death.

There are two types of HCM:

OBSTRUCTIVE HCM

This is the most common type, where the thickened heart muscle on the left side of the heart blocks, or partially blocks, blood flow from the heart to the rest of the body. The ventricular septum (the wall between the two bottom chambers of the heart) is particularly affected.

NONOBSTRUCTIVE HCM

In this type, the thickened heart muscle does not block blood flow.

HCM often appears in children and young adults, though it can occur at any age, and it affects 1 in every 500 people. However, the actual number may be higher due to underdiagnosis and misdiagnosis, stressing the need for greater awareness and accurate detection.

WHAT CAUSES HCM?

HCM is most often caused by abnormal changes in genes that affect the heart muscle and is referred to as a genetic heart muscle disease.

 

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HEREDITARY

If one parent has HCM, their child has a 50% chance of inheriting the genetic mutation that may cause it.

KNOW YOUR RISK

HCM is often passed down through families, making it one of the most common inherited or genetic heart disease. Know your family’s medical history and discuss it with your healthcare provider to manage risks and improve outcomes.

SIGNS AND SYMPTOMS

Many people with HCM experience no symptoms, while others may have some that are incorrectly diagnosed as lung problems, anxiety, or other heart conditions. Some common symptoms may include:

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Shortness of breath especially with physical activity

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Coughing especially when lying down

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Fatigue

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Chest pain especially after physical activity or after eating a large meal

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Heart palpitations or arrhythmias – your heart may feel like it’s pounding, racing or fluttering

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Dizziness & feeling lightheaded or fainting (syncope)

WHAT COMPLICATIONS CAN HCM LEAD TO?

HCM is a chronic condition that, if left untreated, may progress and result in the following complications:

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ATRIAL FIBRILLATION

Irregular heart rhythm

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HEART VALVE DISEASE

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FAINTING

Syncope

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HEART FAILURE

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SUDDEN CARDIAC DEATH

Mostly in adolescents and young adults (especially athletes)

HOW IS HCM DIAGNOSED?

Individuals with HCM are often undiagnosed. If you have a family history of this condition or experience symptoms, it is crucial to consult a specialist in treating HCM. The doctor will conduct a physical exam to assess your overall health, review your medical records and ask about your family’s health. Additional tests may include:

  • Electrocardiogram (EKG or ECG) – shows your heart’s rate and rhythm.
  • Holter and event monitors – portable devices that you wear, typically for 24-48 hours, to record your heart’s EKG as you go about your day.
  • Exercise stress test – Involves walking on a treadmill (usually) to assess how physical exertion affects your heart.
  • Echocardiogram (Echo) – An echo uses sound waves to generate a dynamic picture of your heart, revealing its structure, function, size and shape. A “stress echo” involves performing the echo during a stress test.
  • Cardiac MRI scan – uses a magnetic field and radio waves to create detailed images of your heart’s structure and function.
  • Positron emission tomography (PET) scan – uses a radioactive substance (injected into your veins before the scan) to distinguish healthy from unhealthy heart tissue.
  • Genetic testing – confirms inherited HCM and helps determine if other family members should be tested.

Treating and Managing HCM

Currently, there is no way to prevent HCM, and treating this condition will depend on its specific type. Here are some treatment options:

Medications may be prescribed to treat symptoms and manage complications of cardiomyopathy, as well as underlying conditions that contribute to it. Always refer to your healthcare provider before starting or interrupting any medications. Your doctor may prescribe:

  • Medications that help prevent arrhythmias – Antiarrhythmics help the heart to beat at a normal rate and prevent abnormal heart rhythms.
  • Medications that lower blood pressure– Examples include angiotensin-converting enzyme (ACE) inhibitors, angiotensin II receptor blockers (ARBs) beta-blockers and calcium channel blockers.
  • Medications that slow your heart rate– Examples include beta-blockers, calcium channel blockers and digoxin.
  • Disopyramide– A type of antiarrhythmic that reduces the force with which the heart contracts. It is used mostly in patients with HCM.
  • Myosin inhibitors– These drugs improve how the heart relaxes and can be used in adults with symptomatic obstructive HCM whose symptoms were not relieved with beta-blockers or calcium channel blockers.
  • Diuretics – These “water pills” help remove the excess fluid and sodium salt from the body.
  • Medications or supplements to correct electrolyte (minerals such as sodium, potassium, calcium, etc.) imbalances in the body.
  • Anticoagulants (“blood thinners”) – These drugs help prevent blood clot formation (which are a particular concern in people with atrial fibrillation), reducing the risk of complications such as strokes.
  • Other medications as needed to help treat heart failure or other heart conditions you may have.

In certain instances, individuals may require devices to assist in managing their HCM. These include:

  • Pacemakers for controlling heart rate and rhythm.
  • Implantable cardiac defibrillators (ICDs) that deliver a shock to the heart to correct life-threatening arrhythmia
  • Left ventricular assist devices (LVADs) to help pump blood from the heart’s left lower chamber (ventricle) to the rest of the body.

  • Septal reduction therapy: The right and left sides of the heart’s upper chambers (atria) and lower chambers (ventricles) are separated by muscular walls called the atrial septum and the ventricular septum. In HCM, the walls of the ventricles and septum may thicken abnormally, causing the septum to bulge into the left ventricle. This partially blocks the flow of blood from the heart to the body, forcing the heart to work harder. This condition often triggers various symptoms, some severe. If symptoms persist despite other treatments, one of the following septal reduction procedures may be recommended:
    • Septal myectomy – this open-heart surgery involves the removal of excess muscle from the thickened septum, facilitating smoother blood flow from the ventricle.
    • Alcohol septal ablation – this non-surgical procedure entails the injection of alcohol through a catheter into a blood vessel in the ventricular septum. This cause some of the heart muscle cells to shrink and die, making the septum thinner.
  • Transplant surgery: In severe cases of HCM, when all other treatment avenues have failed to adequately improve the heart’s condition, a heart transplant may be the only option.

LIFESTYLE – LIVING WITH HYPERTROPHIC CARDIOMYOPATHY

While you might not be able to reverse HCM, adopting certain lifestyle measures can help maintain the best possible heart health and potentially prevent some of its progression.

Start by assessing your current situation to identify areas for improvement. Begin with small, manageable adjustments and gradually transition to healthier habits. Understand your baseline by examining your diet, exercise routine, and daily habits. Be aware of key health indicators like cholesterol and blood pressure, ensuring they’re within healthy ranges with your doctor’s guidance.

Evaluate your dietary choices and activity levels. Adjustments can be made to improve both, but set realistic goals based on your starting point. Abrupt changes are often unsustainable.

Examine habits like alcohol, smoking, or drug use, as they can harm heart health and worsen cardiomyopathy. Being honest about habits allows for effective changes.

By knowing where you’re starting from, celebrate progress and reflect on positive changes made along your journey.

After crafting a treatment plan with your healthcare team, it is crucial to adhere to it consistently. This plan may encompass dietary modifications, exercise routines, medications, and possibly medical devices like a pacemaker. Regular communication with your doctor is essential for discussing any necessary adjustments.

Your treatment plan may involve symptom monitoring or tracking sodium and fluid intake. Your doctor may recommend apps for this purpose if you have access to a smartphone or device.

Remember, your treatment plan should align with your lifestyle and preferences. If you experience medication side effects or encounter challenges in changing habits, don’t hesitate to raise concerns with your doctor. It is common to revise treatment plans, especially if your health isn’t improving or if the current plan isn’t suitable for you.

Always consult your doctor before altering medications or exercise regimens.

Eating healthy is always beneficial, particularly for individuals with conditions like HCM. A good diet can boost your energy and help fight tiredness. If you’re overweight, eating better can also help you reach a healthy weight. Here are some simple tips for heart-healthy eating:

  • Eat plenty of fresh fruits, veggies, and whole grains like bread, rice, and pasta.
  • Cut down on salt.
  • Watch how much fat you eat.
  • Limit how much alcohol you drink.

Staying active is important for everyone’s health. Exercise not only benefits your body, but it also boosts your mood and improves sleep quality. It helps manage blood pressure, cholesterol, and keeps weight in check, reducing stress on your heart.

Experts recommend aiming for at least 30 minutes of moderate physical activity daily. However, this might not be realistic for everyone with HCM. Your ability to exercise depends on the severity of your condition. If you have advanced heart disease due to cardiomyopathy, you may need to limit your activity. Start with short sessions, like 5 or 10 minutes, and gradually increase them.

If your doctor approves, choose activities you enjoy, like walking in a nearby park or following free exercise videos online. Always consult your doctor before starting any new exercise program or activity. Stop exercising immediately if you experience pain, shortness of breath, dizziness, or nausea.

Prioritize behaviours like getting sufficient sleep, managing stress, and quitting smoking to reduce the risk of complications from HCM and enhance overall well-being.

Smoking significantly heightens the risk of heart disease and negatively impacts overall health. Additionally, exposure to second-hand smoke poses a similar threat to heart health. Quitting smoking and tobacco use can improve blood pressure, respiratory function, and heart rate. It is common to turn to unhealthy coping mechanisms like overeating, excessive drinking, or continued smoking to alleviate stress. Exploring stress-relief techniques such as yoga, meditation, mindfulness, or journaling can be beneficial. Seeking professional guidance from a healthcare provider or therapist may also help manage stress and anxiety effectively.

Adequate sleep is essential for heart health, yet individuals with HCM or heart failure may struggle to achieve it due to sleep disorders like sleep apnea, insomnia, or restless legs syndrome. Creating a conducive sleep environment by ensuring a comfortable bed and a relaxing bedroom ambiance can facilitate better sleep quality. Limiting screen time before bedtime and avoiding heavy meals and alcohol intake can further support sound sleep. Consistency in sleep schedule is key to improving sleep patterns.

Maintain connections with supportive individuals in your life and seek out peers who share similar experiences. Building an emotional support network is crucial for staying motivated and focused on your health goals. Share your journey, seek advice, and offer support to others in your community.

Questions to Ask Your Doctor

As you embark on your journey of managing HCM, engaging in open and insightful discussions with your healthcare provider is crucial. Here are some questions to consider, fostering a collaborative and informed approach to your heart health:

  • Unravelling the origins: What caused my hypertrophic cardiomyopathy? Did I inherit it? Should others in my family be tested for a genetic mutation? What are the chances of me passing on HCM to my children?
  • Determining the specific type: Which type of hypertrophic cardiomyopathy am I diagnosed with?
  • Assessing severity: How severe is my hypertrophic cardiomyopathy?
  • Foreseeing potential complications: What complications could arise from my hypertrophic cardiomyopathy?
  • Exploring medication options: Are there medications available to manage my hypertrophic cardiomyopathy symptoms, and what are their associated risks and benefits?
  • Navigating treatment choices: Do I need surgery or other medical procedures? What is involved?
  • Strategizing to prevent deterioration: How can I prevent my hypertrophic cardiomyopathy from worsening?
  • Tailoring lifestyle adjustments: What dietary or exercise modifications should I implement? Are there any other lifestyle adjustments I should consider making?
  • Finding reliable information: Where can I access trustworthy resources and information on hypertrophic cardiomyopathy?
  • Recognizing signs and seeking guidance: What symptoms should I be vigilant for that would indicate the need to contact my doctor or seek emergency assistance?
  • Connecting with peers: How can I connect with other individuals facing hypertrophic cardiomyopathy for support and shared experiences?

Additional Resources

Cardiomyopathy GoToGuide

HCM Infographic

Living with HCM Discussion Guide

A Patient's Journey with Cardiomyopathy Infographic

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