Learn more about HCM here.
What is Cardiomyopathy?
Cardiomyopathy, derived from ‘cardio’ meaning heart, ‘myo’ – muscle, and ‘pathy’ – disease, encompasses a spectrum of conditions impacting the heart muscle. These conditions manifest in various ways, including thickening, stiffening, enlargement, thinning, or infiltration by substances that do not belong in the heart muscle. Consequently, these alterations affect the heart’s ability to effectively pump blood, posing significant challenges to cardiovascular function.
Cardiomyopathy can be classified as:
ACQUIRED
When it develops due to another disease, condition, or factor.
INHERITED
When the disease gene is passed down from a parent.
Cardiomyopathy knows no bounds in terms of gender, age, or race. Cardiomyopathy has an estimated prevalence within the European population of 3 per 1000 individuals. However, this figure might be substantially higher due to underdiagnosis and misdiagnosis, highlighting the imperative for raising awareness and accurate detection.
Types of cardiomyopathies
DCM occurs when one of the heart’s lower chambers, known as ventricles, becomes enlarged, typically affecting the left ventricle responsible for pumping blood throughout the body. DCM is more common in males. It is also the most common form of cardiomyopathy in children. This type of cardiomyopathy can occur at any age. In some cases, it can be an inherited disease. Chronic consumption of alcohol can lead to a type of DCM called Alcoholic Cardiomyopathy.
This is a rare type of cardiomyopathy characterized by the gradual deterioration of muscle tissue in the lower right ventricle. This breakdown can trigger irregular heart rhythms and, in severe cases, sudden cardiac death. Genetic mutations often underlie the development of this condition.
RCM emerges when the heart muscle stiffens, impeding its ability to adequately fill with blood for efficient circulation throughout the body. Among cardiomyopathies, RCM stands as the rarest variant, predominantly affecting adults. Its onset may be attributed to underlying health issues such as amyloidosis (abnormal build-up of amyloid protein in body organs), or hemochromatosis (characterized by excessive iron accumulation in the bloodstream), among other contributing factors.
ATTR-CM represents a rare yet grave form of RCM. In this case, a protein known as transthyretin (TTR) misfolds, occasionally accumulating in the heart, nerves, and other vital organs. Consequently, the heart’s ability to efficiently pump blood is compromised, ultimately leading to heart failure. ATTR-CM is often hard to diagnose correctly or goes unnoticed altogether.
This form can occur towards the end of pregnancy or within a year after childbirth. It involves the weakening of the heart muscle, potentially leading to fluid accumulation in the lungs.
CAUSES AND RISK FACTORS
Cardiomyopathy arises from various causes, and sometimes the cause isn’t known. It can be hereditary, passed down through families, with a child of an affected parent having a 50% likelihood of inheriting it.
Alternatively, it may develop over time in one’s life, often triggered by another heart condition, underlying health issue, or external factors:
DAMAGE FROM A HEART ATTACK
HEART VALVE DISEASE
LONG-TERM TACHYCARDIA OR FAST HEART RHYTHM
DIABETES, thyroid disease or other diseases that affect metabolism
HEART INFLAMMATION
(Endocarditis, Myocarditis, Pericarditis)
DISEASES THAT CAUSE SUBSTANCES TO BUILD UP IN YOUR HEART
(Amyloidosis, Sarcoidosis, or Hemochromatosis)
CANCER TREATMENTS
Chemotherapy or Radiation
INFECTIONS
COVID-19, Viral Hepatitis, HIV
OBESITY
CONNECTIVE TISSUE DISORDERS
PREGNANCY COMPLICATIONS
USE OF ALCOHOL, Cocaine or Amphetamines
SIGNS AND SYMPTOMS
Not everyone with cardiomyopathy will experience symptoms. Some individuals may only notice symptoms in the later stages of the disease when the heart has weakened. Symptoms, when they do appear, may include:
Shortness of breath especially with physical activity
Fatigue
Swelling in your legs, ankles, feet, abdomen, or neck veins
Dizziness & feeling lightheaded or fainting (syncope)
Coughing especially when lying down
Heart palpitations or arrhythmias – your heart may feel like it’s pounding, racing or fluttering
Chest pain especially after physical activity or after eating a large meal
Swelling in your legs, ankles, feet, abdomen, or neck veins
HOW IS CARDIOMYOPATHY DIAGNOSED?
Your healthcare provider will diagnose cardiomyopathy by conducting various tests to assess the function and structure of the heart:
- Blood tests
- Chest X-ray
- Electrocardiogram (EKG or ECG)
- Echocardiogram (Echo)
- Cardiac magnetic resonance (CMR) scan
- Genetic Testing
- Holter and event monitors
- Physical exam
- Positron emission tomography (PET) scan
If further testing is necessary to confirm a diagnosis of cardiomyopathy, you might undergo a minor medical procedure such as:
- Cardiac catheterization: This procedure involves inserting a thin, flexible tube called a catheter into a blood vessel in your arm, groin, upper thigh, or neck. The catheter is then guided through the blood vessels to your heart to examine the heart valves or take samples of the heart muscle, known as a heart biopsy.
- Coronary angiography: Often performed using cardiac catheterization, this procedure involves injecting a contrast dye through the catheter to highlight any blockages in the heart.
Treating and Managing Cardiomyopathy
Cardiomyopathy can’t be cured, but with treatment, symptoms can be improved, and many people maintain vibrant and active lifestyles. Treatments aim to slow the condition’s progression, manage symptoms, enhance heart function, and address complications such as heart failure and irregular heartbeats. Your doctor will determine the best treatment plan based on the type and severity of your cardiomyopathy.
Medications play a vital role in managing symptoms, complications, and underlying conditions associated with cardiomyopathy. Always refer to your healthcare provider before initiating or interrupting any medication.
Your doctor may prescribe:
- Antiarrhythmics: These drugs help maintain a normal heart rhythm and prevent irregular heartbeats.
- Blood pressure-lowering medications: Examples include ACE inhibitors, angiotensin II receptor blockers, beta blockers, and calcium channel blockers.
- Heart rate-regulating medications: Beta blockers, calcium channel blockers, and digoxin are commonly used to control heart rate.
- 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.
- Anticoagulants (blood thinners): These drugs help prevent blood clot formation, reducing the risk of complications such as strokes.
- Other medications as needed to help treat heart failure or other heart conditions related to cardiomyopathy.
It’s important to note that medication availability can vary by country, so always consult with your healthcare provider regarding drug options suitable for your location. Additionally, be cautious of counterfeit medications and ensure you obtain medications from reliable sources.
In certain instances, individuals may require devices to assist in managing their cardiomyopathy. These devices are typically necessary in severe cases to aid heart function.
- Pacemakers: These devices are implanted if the heart beats too slow or too fast.
- Cardiac Resynchronization Therapy (CRT): A CRT device synchronizes the contractions between the heart’s left and right ventricles.
- Implantable Cardioverter Defibrillator (ICD): ICDs play a crucial role in maintaining a regular heartbeat by delivering electric shocks to the heart when it detects arrhythmia.
- Left Ventricular Assist Device (LVAD): In cases where the heart weakens significantly, a LVAD might be necessary. This mechanical pump helps the heart pump blood to the body and can be employed while awaiting a heart transplant or as a standalone treatment for severe heart failure.
- 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.
- Heart transplant: If your cardiomyopathy remains severe despite medication or device intervention, a heart transplant may be the sole option. During this procedure, a person’s diseased heart is replaced with a heart from a suitable donor.
LIFESTYLE – LIVING WITH CARDIOMYOPATHY
While you might not be able to reverse cardiomyopathy, 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 cardiomyopathy. 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 cardiomyopathy. 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 cardiomyopathy 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’s 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 cardiomyopathy 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 cardiomyopathy, 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 cardiomyopathy?
- Determining the specific type: Which type of cardiomyopathy am I diagnosed with?
- Assessing severity: How severe is my cardiomyopathy?
- Foreseeing potential complications: What complications could arise from my cardiomyopathy?
- Exploring medication options: Are there medications available to manage my cardiomyopathy symptoms, and what are their associated risks and benefits?
- Navigating treatment choices: What other treatment options are on the table for me, and what are the risks and benefits of each?
- Strategizing to prevent deterioration: How can I prevent my 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 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 cardiomyopathy for support and shared experiences?
Additional Resources
Cardiomyopathy GoToGuide
A Patient's Journey with Cardiomyopathy Infographic
HCM Infographic
Living with HCM Discussion Guide
Mended Hearts Inc. - Living with ATTR-CM Discussion Guide
