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Guide to Living With Cardiomyopathy

Guide to Living With Cardiomyopathy

Living with Cardiomyopathy

Cardiomyopathy is a serious heart condition that makes it difficult for the heart to pump blood to the rest of the body, and it can be life-threatening. But while living with cardiomyopathy can be a daily challenge, there are ways to keep the condition under control and to continue living a full and abundant life.

While we’re not doctors and we don’t intend for any of this information to be taken as medical advice, we have created this guide to provide a basic overview of the subject so that you can better understand what to expect and what you should be aware of as you work with your doctor to develop a plan for healthy living.

How to Know if You Have Cardiomyopathy

During the early stages of cardiomyopathy, you may have no observable symptoms at all. However, as the condition progresses, you may notice some of the telltale signs. There are three types of cardiomyopathy:

  • Hypertrophic cardiomyopathy: Hypertrophic cardiomyopathy is believed to be the most common form of genetic heart disease. It’s characterized by an enlarged heart muscle that becomes stiff, and it’s the leading cause of cardiac arrest in young athletes.
  • Dilated cardiomyopathy: Dilated cardiomyopathy is characterized by an enlarged left ventricle. It’s most common in middle-aged men.
  • Restrictive cardiomyopathy: Restrictive cardiomyopathy is characterized by a stiffening of the heart muscle that inhibits the heart’s ability to fill with blood between heartbeats. This is the least common type of cardiomyopathy and can affect people of all ages.

These related diseases share many of the same symptoms, which include:

  • Shortness of breath, even when you’re not active
  • Unexplained dizziness or fainting
  • Unexplained lightheadedness
  • Chest pressure or discomfort
  • Swelling of the feet, ankles, and legs
  • Difficulty sleeping on your back
  • Rapid, intense, or fluttering heartbeats

If you have any combination of these symptoms, or any symptoms affecting the chest or heart, visit your doctor right away. Your doctor will determine if you have some form of the condition, and if you do, they will develop an appropriate treatment plan to help you manage your symptoms and slow the progression. There is no cure for cardiomyopathy, but you can keep the condition under control with some positive lifestyle changes.

How to Manage Cardiomyopathy

Your doctor’s recommended treatment options will depend on the type of cardiomyopathy and severity of your condition. The following may be recommended.

  • Heart-healthy lifestyle changes. This includes maintaining a healthy diet (more on that later), managing your weight, giving up smoking, eliminating (or significantly reducing) alcohol consumption, and making time for non-strenuous physical activity each day. These types of lifestyle changes are generally recommended for all cardiomyopathy patients, regardless of the condition’s severity.
  • Daily medications. A doctor will commonly prescribe beta blockers (for blood pressure control), anticoagulants, heart rhythm medications, anti-inflammatory drugs, and any other medicines that may address the symptoms and risk factors. Take all prescribed medications as advised by your doctor.
  • Heart surgery. In some cases, a doctor may recommend a surgery like a septal myectomy (often recommended for hypertrophic cardiomyopathy). The surgeon may remove excess heart tissue to improve blood flow and reduce symptoms of the condition. While surgery doesn’t cure cardiomyopathy, it may make it more manageable and less life-threatening.
  • A surgically implanted device. In cases of advanced cardiomyopathy, a doctor may recommend a pacemaker or implantable cardioverter defibrillator (ICD). Both devices can help to manage the dangerous heart arrhythmias resulting from cardiomyopathy. A pacemaker may be recommended for slow and uneven heart rhythms while an implantable defibrillator may be used to treat extremely rapid heartbeats or abnormal heart rhythms.
  • A heart transplant. In extreme cases where the heart is unable to function adequately, a doctor may recommend a transplant. This is reserved as a last resort.

While a doctor will only recommend surgical implantation or heart transplantation in severe cases, it’s important to note that any abnormal heart rhythm can trigger sudden cardiac arrest (SCA).

For this reason, we recommend that even mild to moderate cardiomyopathy patients keep an automated external defibrillator (AED) in the home at all times. If your heart stops beating, a user-friendly AED like the HeartSine Samaritan PAD 350P may save your life.

Dietary Guidelines for Living with Cardiomyopathy

For patients living with cardiomyopathy, the American Heart Association (AHA) recommends the following:

  • A diet rich in grains, fruits, and vegetables
  • Grains should come from whole-grain sources
  • Lean protein sources should be low in saturated and trans fats
  • Foods should be low in sodium and added sugar
  • Alcohol should be avoided altogether or enjoyed in strict moderation

If you have significant hypertension (high blood pressure) as a consequence of your cardiomyopathy, the AHA recommends a DASH eating plan as a way of managing blood pressure. DASH stands for “Dietary Approaches to Stop Hypertension,” and it’s a nutritional approach that restricts salt intake, red meat, and added sugars.

The most important thing is to speak with your doctor to determine the dietary recommendations that are best for your condition.

Fitness and Cardiomyopathy

Physical activity is essential for maintaining a healthy heart, but cardiomyopathy sufferers have to exercise some caution.

Because the heart is unable to pump blood as efficiently as it should, strenuous activity may cause dangerous blood pressure spikes and other heart-related issues. It can also trigger cardiomyopathy symptoms like dizziness, lightheadedness, and fainting. Certain medications can further exacerbate these issues.

With cardiomyopathy, the key is to be as physically active as you can without placing excess strain on your heart. Each patient has a different limit, so you’ll need to speak with your doctor to determine the type and amount of activity that is acceptable for you. Always wear a heart monitor when exercising, and stop immediately if you notice any discomfort or condition-related symptoms.

Maximizing Quality of Life With Cardiomyopathy

Living with cardiomyopathy can take a toll not just on your physical health but also on your mental health. The constant fatigue can hinder your motivation, the physical limitations can make it difficult to enjoy the same activities you once did, and the uncertainty of your condition can be an ever-present source of anxiety.

Despite these challenges, it is possible to continue living a rich, fulfilling life.

  • Make time for physical activity—whatever you can handle. One review of 40 studies analyzed patients with chronic heart failure and found that exercise, 2 to 5 times per week, was associated with a significant improvement in both physical function and quality of life.
  • Manage your stress. Stress is inevitable when you have a chronic condition, but there are ways to keep it from consuming you. Get plenty of sleep, avoid unnecessary stress triggers, and consider adding an activity like low-impact yoga or meditation to your daily routine. If necessary, work regularly with a counselor or therapist.
  • Maintain an active social life. Don’t allow yourself to become isolated. Stay close to your friends and loved ones, continue doing the daily activities that you love (within reason), and don’t let your hobbies fall by the wayside. Just know your limitations and take things slowly when you need to.

Life Expectancy With Cardiomyopathy

A cardiomyopathy patient’s life expectancy can vary significantly based on the type and severity of the condition. If it’s caught early and managed with the help of a doctor, a patient can live for many years. Consider that the annual mortality rate for hypertrophic cardiomyopathy in the U.S. is less than 1%. Doctors will use risk stratification measures to cater the treatment to the patient, starting with the least invasive treatment methods and employing more aggressive measures only as needed.

The most important thing is to keep the condition under control and prevent it from advancing into heart failure, a progressive disease where the heart is unable to pump enough blood to meet the body’s demands. Only about half of heart failure sufferers survive more than five years, and end-stage heart failure sufferers often survive less than one year. That’s why you should always follow your doctor’s recommendations and maintain a heart-healthy lifestyle.

Don’t Fall Prey to the Dangers of Uncontrolled Cardiomyopathy

Don’t neglect your cardiomyopathy symptoms. The potential for heart failure is real, but cardiomyopathy can have other consequences as well, including:

  • Increased risk of blood clots. If the heart is unable to pump blood efficiently, there is an increased risk of blood clots forming in the heart and creating blockages in the bloodstream. This can increase your risk of heart attack and stroke.
  • Heart valve disease. Cardiomyopathy can enlarge the heart, making it more difficult for the heart valves to close properly. This may cause blood to flow backward into valves, leading to symptoms like shortness of breath, swelling, dizziness, chest pain, and even dangerous heart arrhythmias.
  • Sudden cardiac arrest. Damage to the heart muscle is one of the primary causes of cardiac arrest. The risk is especially high if you have cardiomyopathy coupled with congestive heart failure.

For these reasons, it’s absolutely critical that you visit your cardiologist regularly, take all prescribed medications, and live a heart-healthy lifestyle. With proper care, you can live a long and fulfilling life with cardiomyopathy, but you can’t take your heart health for granted. Now is the time to make a renewed and complete commitment to your well-being.

Disclaimer for information purposes only:

Our website provides information for general knowledge and informational purposes only. We do not offer medical advice, diagnosis, or treatment. Readers should consult with qualified healthcare professionals for personalized medical advice.

While we endeavor to ensure the accuracy and reliability of the information provided, we do not guarantee its completeness or suitability for any specific purpose. The use of this website is at the reader’s own risk.

By accessing and using this website, you agree to indemnify and hold harmless the website owners, authors, contributors, and affiliates from any claims, damages, liabilities, losses, or expenses resulting from your use of the information presented herein.

Picture of Michelle Clark, RN ICU/CCU
Michelle Clark, RN ICU/CCU
As a seasoned Nurse (RN) in Critical Care, CCU (Cardiac Care Unit), and ICU (Intensive Care Unit) with nearly three decades of experience, specializing in Cardiopulmonary care, I've embarked on a new path as a trusted figure in the realm of sudden cardiac arrest and first aid. With a profound dedication to patient well-being honed throughout my nursing career, I now utilize my expertise to enlighten and empower others in life-saving methods. Leveraging my comprehensive understanding and proficiency in critical care, I endeavor to leave a lasting imprint in healthcare by promoting awareness and offering practical guidance.

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