Be an active part of your hypertrophic cardiomyopathy (HCM) care

Kitty,
Diagnosed with HCM in 2024
Actual consented person with HCM.

Understanding HCM Care
Appointments
Physical Impact

UNDERSTANDING HCM CARE

Your care team

You and your cardiologist should discuss a comprehensive plan for your care and how you can work together so you can live a full life with HCM.

Treating HCM means treating all of you. Your care team involves your cardiologist and may include a number of other providers for medical, emotional, and educational support.

HCM can also affect other aspects of your medical care—you and your cardiologist can work with your other providers, including dentists, reproductive health providers, and anesthesiologists, to make sure they have the best understanding of HCM and how it affects you.

Role of the HCM Specialist

Learn about the role of an HCM specialist and how they can work with you and your cardiologist to tailor a treatment plan that works for you.

You are a key part of the care team

No one knows how you feel better than you. By speaking freely with your providers about how you are living with HCM, you help give a fuller picture to guide your care.

Work with your cardiologist to make sure your entire care team is collaborating to optimize your care. It’s important that all members of your care team stay up-to-date on your current condition.

Remember, you are in control of your care.
It is important to find the right cardiologist who listens to you, welcomes your questions, and works together to help you thrive with HCM.

Being an Active Part of Your Care

See how working with your cardiologist and creating a comprehensive plan for your care can help you live a more full life with HCM.

Appointments

Make the most of your HCM appointments

Healthcare appointments can be overwhelming. Being prepared can help.

A journal can help keep track of your symptoms and how HCM has affected your life. You can share:

Any activities you were unable to do or if you skipped any family or social events
An update on your emotional well-being—if you have felt depressed, anxious, or stressed since your diagnosis, your cardiologist may be able to offer help

Your cardiologist may ask you a series of questions to help them learn about how HCM is affecting you in ways you may not have thought about.

Tips for your appointments

Write down questions you want to ask or topics to discuss ahead of time and bring them to your appointment:
- Explanation of test results
- New HCM symptoms or side effects of treatment
- If any treatment changes may be needed
Take notes or record your conversation
- This may help you recall what you discussed
- Tell your cardiologist you’re going to take notes, and ask if it is okay to record as well
If you are comfortable, bring a trusted family member or friend to your appointments to help remember all that was discussed
Share any new health updates or medicine changes with all your other providers

Physical impact

Track the physical impact of HCM

Because physical symptoms of HCM may get worse slowly over time, it may be hard for you to recognize how your symptoms are affecting your everyday life.

Here are some things that can help:

Set goals

What do you want to be able to do and by when?

Keep track of symptoms

How do you feel each day?

What were you able or not able to do?

Share with your cardiologist

Give them a fuller picture of how you are doing.

Your loved ones may notice changes in your HCM symptoms and how they affect you before you do. They can help you keep track and share any changes they see with your cardiologist to help them better manage and personalize your care.

Next: Learn about available HCM treatment options