Survival and Prognosis of Those Living with Hypertrophic Cardiomyopathy

Some people with hypertrophic cardiomyopathy may not experience any symptoms (asymptomatic), while others may only experience symptoms when exercising or during exertion. Furthermore, some people may only develop symptoms at a later stage of disease progression. Symptom onset and manifestation vary greatly amongst patients living with the disease.

Signs and symptoms that might manifest and result in an early diagnosis of HCM include the following:

• Shortness of breath, especially during exercise
• Chest pain
• Fluttering, fast or pounding heartbeats (palpitations)
• Fainting, during or just after exertion
• Heart murmur

Although a number of different conditions can cause fast pounding heartbeats or shortness of breath, it is important to seek out medical care to confirm a diagnosis and start the appropriate treatment. If you know of anyone in your family with HCM or have any symptoms such as chest pain, difficulty breathing, or irregular or rapid heartbeat, it may be advisable to see your healthcare provider as soon as possible. 

Treatment Guidelines for HCM

There are many different approaches that may be recommended by your doctor in treating hypertrophic cardiomyopathy. For some people, certain drugs, surgical approaches, and a combination of methods may be needed, whilst others may be able to control their symptoms with lifestyle changes. 

The American College of Cardiology and American Heart Association has released updated (2020) hypertrophic cardiomyopathy treatment guidelines aimed at providing recommendations that are applicable to those with HCM or who are at risk of developing cardiovascular disease. 

Can You Live a Normal Life with Hypertrophic Cardiomyopathy?

"HCM must be looked at as a lifestyle changer,"  Dr. Philip Weintraub, a cardiologist at NYU Langone Health, advises avoiding any illicit drugs, such as cocaine, and cutting back on alcohol, and says "You don't want to invite other agents that might be toxic to the heart muscle. You do not want to use illicit drugs, especially cocaine. You don't want to use alcohol because alcohol itself could act as a depressant."

Dr. Weintraub suggests adopting a series of healthy habits to keep yourself on track to better health while living with HCM, which include the following:

• Moderate exercise
• Avoid isometrics exercises (like weight lifting)
• Maintain healthy weight
• Maintain a healthy sleep schedule
• Discuss/manage stress
• Avoid substances that put a strain on the heart (illicit drugs or alcohol)
• Eat healthily and maintain a healthy weight
• Keep up with heart tests and follow-up appointments

"You want to keep your weight at a healthy weight," he adds. "You don't want to put more strain on an overstrained system by allowing obesity to settle in. Sleep is [also] very important. Sleep must be obtained because people who don't sleep well and develop sleep apnea compromise their general health."

Diet and Exercise for HCM

When it comes to maintaining an overall healthy diet, there are a few changes people with HCM should consider implementinglike limiting sodium intake and choosing heart-healthy foods.

"Try to minimize the intake of salt, because salt itself leads to fluid [retention]," Dr. Weintraub explains. "Retention can work against somebody who is hypertrophic in that if they have [an] increased volume of fluid in their bloodstream, they're more likely to congest in their lungs."

A heart-healthy diet includes a variety of fruits, vegetables, whole grains, lean meats, and fish. A diet low in animal fat may also be helpful since it may reduce cholesterol.

Alcohol intake should also be reduced or avoided as alcoholic drinks are known to worsen the condition and can further reduce blood flow. The consumption of alcohol can also promote weight gain, which can exacerbate symptoms experienced with HCM. 

Dr. Aeshita Dwivedi, a cardiologist at Lenox Hill Hospital, tells SurvivorNet that finding the right exercise routine is important when taking care of heart health.

"It's also important that you remain active, which means moderate activity," Dr. Dwivedi adds. "A lot of patients with hypertrophic cardiomyopathy are restricted from doing strenuous activity because it can actually make their condition worse, but it's important to still stay active and [patients] can consider a supervised exercise program to remain active as well.

"The other important thing is to have healthy habits," she adds. "Excessive alcohol intake or excessive stress on the body in terms of physical or emotional stress can also worsen the condition, so it's important to maintain an overall healthy lifestyle, including diet and [remaining] moderately active."

Stress Management for HCM

Excessive stress can lead to spikes in blood pressure, which can increase the risk of cardiomyopathy (heart disease). Those with HCM should consider implementing lifestyle changes to help manage stress, such as:

• Maintaining a regular sleep schedule
• Adopting an exercise routine
• Practicing relaxation techniques (deep breathing, journaling, listening to music, etc.)
• Finding a support group and/or system

Dr. Weintraub urges those dealing with HCM to find a support system that works for them, as being honest and open about their health struggles can help a lot when it comes to handling stress. "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.

A support system may look different for every patient; some may find solace in groups or online communities of people who have gone through similar struggles, while others may be able to confide in a close friend or family member.

"You can create support group systems out there in which there are people who are willing and who care about you [who can help] extract what your fears are from you," he says. "So, therefore, when they get to express it, [any problems] can be dealt with directly."

Moving Forward – Questions to Ask Your Doctor

• Will I need to make significant changes to my diet? 
• Should I be on a supervised workout routine? 
• What foods and activities should I avoid?
• Will I have to quit my job if it involves physical labor? 
• How can I identify and manage my stress safely?

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