Reversing Hypertrophic Cardiomyopathy (HCM)
- Unfortunately, hypertrophic cardiomyopathy is not a disease that can be reversed or goes away. However, it is possible to decrease the symptoms that you may experience.
- There are many treatments available and lifestyle modifications that can allow patients to live a normal life expectancy and maintain a good quality of life.
- Diagnosing HCM early using genetic testing and frequent monitoring for disease progression can also help maximize therapeutic options.
While there are no current treatment options available to reverse hypertrophic cardiomyopathy, understanding keys to early diagnosis and treatment to support the heart is key to living a healthy life with the disease. If left untreated, HCM can lead to a variety of serious health conditions including heart failure, stroke, atrial fibrillation, and even sudden cardiac death.
How is Hypertrophic Cardiomyopathy Diagnosed?Read More
- Family history
- Past medical history
- Physical exam
- Cardiac magnetic resonance imaging (MRI)
- Electrocardiogram (ECG) or Echocardiogram (Echo)
- Genetic testing
HCM can sometimes be referred to scientifically as hypertrophic obstructive cardiomyopathy (HOCM) and idiopathic hypertrophic subaortic stenosis (IHSS). These terms may be discussed or used interchangeably during appointments.
The clinical workup looks for physical signs/symptoms and examines family history, due to the majority of cases being linked to genetics. If you have been diagnosed with HCM, your healthcare team will recommend that your family gets tested as well. Since this condition is considered an autosomal dominant disease, there is a 50% chance of you passing it on to your children.
Dr. Aeshita Dwivedi, a cardiologist at Lenox Hill Hospital/Northwell Health, says “If your parents are diagnosed with a gene for hypertrophic cardiomyopathy, there’s a 50% chance that you may inherit the gene as the gene for hypertro cardiomyopathy is a dominant gene.”
Genetic testing looks for variants/mutations (changes) in your genes. According to the American Heart Association, 30-60% of patients with HCM have a genetic variant. Although many genes may be involved in HCM, the MYH7 and MYBPC3 are two of the most common, accounting for 70% of all disease variants.
Does Hypertrophic Cardiomyopathy Go Away?
Unfortunately, hypertrophic cardiomyopathy is not a disease that goes away. However, it is possible to decrease the symptoms that you may experience.
Symptoms of HCM commonly include, but are not limited to, the following:
- Feeling tired (fatigue)
- Dizziness or lightheadedness
- Chest pain or shortness of breath
- Swelling in the abdomen, ankles, feet, and legs
- Irregular heartbeat, typically upon exertion
Additionally, adopting heart-healthy habits can help patients diagnosed with HCM avoid medical or surgical intervention. Incorporating moderate exercise into your daily routine can help keep your heart working at its optimal potential. Before adopting a new exercise routine, it is important to talk to your healthcare team. You will need to create a supervised exercise program that avoids any strenuous activity to prevent the worsening of HCM.
The American College of Cardiology has recommended treatment occurs based on a patient’s clinical profile. After being diagnosed and having a full workup evaluation, your provider may treat you based on one or more of the following profiles:
- Progressive Heart Failure
- Atrial Fibrillation
- Sudden Death Prevention
Reversing Refractory Heart Failure Symptoms in Obstructive HCM
Some patients with HCM may have progressive heart failure (HF). According to the Centers for Disease Control and Prevention, 70% of patients with HCM will develop heart failure symptoms and 5% will progress to refractory heart failure.
Symptoms of progressive heart failure can include the following:
- Trouble breathing,
- Fatigue upon exertion
- Chest pain
These symptoms are generally related to the blood obstruction of the left ventricle of the heart.
For patients who continue to have symptoms while on medications for HCM, a procedure known as a septal myectomy may be recommended. The septum is responsible for separating the left and right ventricles of the heart.
In HCM, the septum may grow so large that it begins to push on the left side of the heart, resulting in heart failure symptoms. A septal myectomy is a surgical procedure that removes part of the septum in the heart.
By removing part of the septum, it decreases the size and burden that causes the associated heart failure symptoms.
Treating Atrial Fibrillation
Atrial fibrillation (A-fib) is a type of arrhythmia that is described as an irregular heartbeat. In patients with hypertrophic cardiomyopathy, enlargement and fibrosis of the left atrium can cause cardiac dysfunction, which ultimately results in the heart not beating correctly.
The American Journal of Cardiovascular Disease explains approximately 25% of patients with HCM experience atrial fibrillation. If left untreated, A-fib can cause blood clots and stroke. If you experience A-fib, your provider may recommend an anticoagulant to prevent future blood clots.
Examples of anticoagulants include, but are not limited to, the following:
Your healthcare team may also recommend other medications that can be used to control either the rhythm or the rate of your heart. If frequent episodes continue to occur despite medication, a procedure known as a cardiac ablation may be recommended to block the irregular electrical signals within the heart.
Sudden Death Prevention
Sudden cardiac death is a serious manifestation of HCM that can occur in a small percentage of patients diagnosed with HCM. The peer-reviewed journal, European Cardiology Review, explains hypertrophic cardiomyopathy is the most common cause of sudden cardiac death in athletes 35 years of age and younger.
As a result, your healthcare team will try to quantify your risk of experiencing sudden cardiac death. Common risk factors include the following:
- Family history of sudden death
- Unexplained recent loss of consciousness (syncope)
- Fibrosis within the left ventricle
- Apical aneurysm within left ventricle
- End-stage (advanced) disease
If you are considered high risk, your healthcare team may discuss implanting a device known as an implantable cardiac defibrillator (more commonly referred to as an ICD). ICDs work by monitoring heart rate and if an irregular beat is identified, the ICD will shock the heart back into a regular rhythm.
The American College of Cardiology recommends reviewing risk on an annual basis. ICDs are also recommended for secondary prevention in patients that have a history of cardiac arrest or sustained ventricular tachycardia.
Can Hypertrophic Cardiomyopathy be Cured?
Hypertrophic cardiomyopathy is considered a lifelong condition. Currently, there is no cure for the disease. However, there are many treatments available and lifestyle modifications that can allow patients to live a normal life expectancy and maintain a good quality of life. Diagnosing HCM early using genetic testing and frequent monitoring for disease progression can also help maximize therapeutic options.
Dr. Dwivedi says “Your doctor will typically prescribe you medications that enable the heart to pump more easily and decrease the workload on the heart.”
The treatment for HCM is dependent on each person’s unique clinical portrait. Some people may be diagnosed but do not experience any symptoms (asymptomatic). For patients that are asymptomatic, physicians and other healthcare professionals will often encourage initiating and maintaining a heart-healthy lifestyle. “HCM must be looked at as a lifestyle changer,” Dr. Philip Weintraub, a cardiologist at NYU Langone Health, tells SurvivorNet. Adapting heart-healthy habits can help to strengthen your heart and minimize risk of further strain.
Common examples of heart-healthy habits include the following:
- Losing weight or preventing weight gain
- Eating a balanced diet
- Quitting smoking
- Staying active
- Participating in routine low to moderate exercise
Dr. Weintraub also urges those dealing with HCM to find a support system that works for them. “You need to live in an environment where you can share what’s going on with you, because we see many patients who are afraid of what’s wrong with them, [so they] withdraw, isolate, and develop certain types of depression,” he says.
It is also important to keep any other chronic conditions managed, as well. Talk to your healthcare team about any other conditions you may be diagnosed with. Many conditions, such as diabetes, can cause additional burden and stress to your heart if not under control.
Moving Forward – Questions to Ask Your Doctor
- Do any of my family members need to be tested for hypertrophic cardiomyopathy?
- What can I do to prevent worsening my HCM?
- How do I know if I need to take medication?
- What type of physical activity and exercise is right for me?