There are other things you can do to make sure you’re prepared for HCM symptom changes.
Create an Action Plan
Collaborate with your cardiologist on an action plan that gives you a roadmap for what you should do in different symptom scenarios.
“A personalized plan helps patients understand what can be monitored at home, what should trigger a call to their cardiology team, and what requires emergency care,” Dr. Shah says.
Keep a Journal
Jotting down your symptoms in a notebook or your phone’s Notes app can make it easier to notice when changes occur, Gindi says. He recommends keeping track of things such as your exercise tolerance and instances of chest pain, palpitations, lightheadedness, and dizziness.
Involve Others
Enlist the people you spend time with — such as family, friends, and coworkers — to help you plan for emergency situations.
“Others should know the basics of what to do if the patient collapses, has severe symptoms, or becomes unresponsive,” Shah says. “In some situations, it may also be appropriate to discuss CPR (cardiopulmonary resuscitation) training or AED (automated external defibrillator) availability in the workplace or community.”
A friend who understands your condition can get help for you faster, by informing emergency medical personnel or possibly by using an app or website to locate a nearby AED.
Keep an Updated Medications List
Write down all of the medications and dosages you take, including prescription and over-the-counter drugs and supplements. Keep a few copies in easily accessible places such as on the kitchen refrigerator, in your car’s glove compartment, or at your desk at work so it’s easy to find during an emergency. Bring the list with you to your cardiology appointments, too, so you and your doctor can review it.
[5]
A MedicAlert bracelet or a similar ID can help others know of your health situation in emergencies.
[6]
Decide on a Follow-Up Schedule
Talk with your cardiologist about how often you should come in for follow-up visits — and stick with the plan. Typically, if you have stable symptoms, you will have a heart imaging test called an echocardiogram every one to two years and your heart rhythm checked at least annually.
[7]
Your doctor may request more frequent visits based on your symptoms, age, and how severe your HCM is.
