Questions when starting a new treatment for HCM

In medicine, hypertrophy refers to the enlargement or overgrowth of an organ or other part of the body. Cardiomyopathy refers to diseases that affect the heart muscle (cardiac muscle) that make it more difficult for the heart to pump blood.

Hypertrophic cardiomyopathy (HCM) is a disorder where the heart muscle has become abnormally thick. The condition can be grouped into two types, obstructive and nonobstructive. With nonobstructive HCM, the thickening of the heart muscle does not block blood flow. With obstructive HCM, the thickened heart muscle does block blood flow. Most cases of HCM are obstructive.

Symptoms of HCM can vary from mild to very severe. Some people experience no symptoms or very mild symptoms. Others experience chest pain, fatigue, dizziness, lightheadedness, fainting, and irregular or fast heartbeat (arrythmias). HCM can also lead to serious complications, including heart failure, life-threatening arrhythmias, and sudden cardiac death.

Treatment options for hypertrophic cardiomyopathy

There is no cure for HCM. The goals of treatment are to reduce symptoms, slow the progression of the disease, and prevent complications. Treatment choices are based on a person’s symptoms, heart function, age, overall health, the degree of heart muscle thickening, and other factors.

A treatment plan can include monitoring, exercise limitations, lifestyle interventions, medications, procedures, and surgery:

• Medications. Medications are a mainstay of treatment for HCM. Various medications can be prescribed to reduce symptoms and improve heart function.
• Procedures and surgery. In some cases, treatment may require the implantation of a medical device (such as a pacemaker or defibrillator), surgery to remove or destroy thickened heart muscle, or surgery to relieve obstruction.
• Exercise limitations. Mild-to-moderate exercise is recommended for most people with HCM, but some may need to abstain from competitive sports and strenuous exercise. Recommendations are individualized, and a person should discuss limitations with their healthcare provider.
• Lifestyle interventions. These include following a heart healthy diet, reducing stress, healthy sleep habits, and avoiding tobacco, alcohol, and recreational drugs.
• Monitoring. Even people with no symptoms or mild symptoms should have regular checkups with a healthcare provider to monitor for changes.

Questions when changing treatment

Treating HCM is a lifelong process and a person may require different treatments at different times. Changes to treatment may also be recommended if new treatments become available. For example, the first myosin inhibitor, a medication that can reduce heart muscle thickness in people with obstructive HCM, was approved by the FDA in 2022.

If you are living with HCM and discussing a new approach to treatment with a healthcare provider, the following questions may help:

If you are discussing a medication:

• What is the name of the medication and the dosage?
• How does the medication work?
• How is the medication taken?
• How often will the medication be taken?
• What is the goal of taking this medication? How will we know it is working?
• How long will I need to take this medication?
• What are the potential side effects? Is there a risk of serious side effects?
• How will I feel while taking this medication?
• Are there things I will need to avoid while taking this medication, such as certain foods or activities?
• Can this medication interact with other drugs or supplements? Always tell your healthcare provider about all medications you are taking, including medications for other conditions, over-the-counter medications, and supplements.
• What will this medication cost? Who can I talk to if I have concerns about the cost of this medication?

If you are discussing medical procedures or surgery:

• What is the name of the procedure?
• What is the goal of the procedure? What kind of result can I expect?
• What are the potential side effects or risks of this procedure?
• Do I need any tests or exams before this procedure?
• What healthcare provider will perform this procedure?
• Are there alternatives to this approach?
• What will the procedure cost?
• What will the recovery process be like?

Remember, if you have questions, need an explanation, or have concerns, your healthcare provider is your best source of information.