Below are answers to some of the most frequently asked questions that the Hypertrophic Cardiomyopathy Center team at Tufts Medical Center in Boston hears from our patients. Please make sure to reach out to our team if you have any questions about your HCM diagnosis, we're here to help you, every step of the way.
1. How did I get HCM? Did I do something wrong to cause it?
Hypertrophic cardiomyopathy is a genetic heart disorder. You were born with an abnormal gene that caused your heart muscle to thicken. Your heart muscle did not thicken due to poor lifestyle habits or anything else you may have done to yourself over the years. However, although you did nothing to cause it, maintaining a healthy lifestyle through weight and diet will absolutely benefit you in the long-run with respect to your symptoms and overall energy levels.
2. What is my life expectancy with HCM?
Most patients with hypertrophic cardiomyopathy are able to maintain an active lifestyle and have a normal lifespan. Mortality rates for HCM alone is only about 0.5% per year—which is no different than the general population for all causes. Most patients have near-normal life expectancies and live highly satisfying and productive lives.
3. Obstruction sounds bad to me, should I worry?
Obstruction refers to impeded blood flow out of the left lower chamber of the heart, which creates higher pressures in the heart. Obstruction is very common in HCM and present in more than two-thirds of patients at rest and with physical activity. While some patients develop symptoms secondary to obstruction and require septal myectomy (or alcohol ablation), there are many patients who never develop symptoms throughout their entire lives.
4. Will my heart muscle continue to grow?
After full physical maturity, right after puberty, your heart muscle thickness usually stops increasing. Therefore, for the vast majority of patients, the thickness of the heart stays the same throughout the remainder of life.
5. My doctor recommends I get a septal myectomy. Will my heart muscle grow back?
No. Heart muscle cells do not regenerate and will not grow back after surgery.
6. Can I exercise?
YES. There are many psychological and physical benefits to a regular exercise routine. Having HCM does not make you immune to developing coronary artery disease or having a heart attack (or other disease related to leading a sedentary lifestyle). However, there are definitely activities to avoid. Intense physical exertion increases your heart rate and releases a rush of adrenaline that can predispose some individuals to heart arrhythmias. This places HCM patients at additional risk for passing out or sudden cardiac death. Exercise counseling should be individualized. Remember to talk to us before starting any exercise program.
7. After my first visit, what signs or symptoms are concerning enough for me notify your team or my referring physician?
It is very important to call a doctor if you have persistent palpitations—heart flutters—that do not resolve with rest or if you have extreme lightheadedness or instances of fainting (syncope). Please also contact a doctor if your symptoms change or worsen, despite rest. This could include increased shortness of breath, new chest discomfort, worsening fatigue or fluid retention. Remember—we are always here. Never hesitate to reach out.