Hypertrophic Cardiomyopathy: An interview with the 27 year old who’s heart stopped for 4 minutes

What is Hypertrophic Cardiomyopathy?

It is a genetic disease caused by mutations in the MYBPC3 gene. The MYBPC3 gene provides instructions for making cardiac myosin binding protein C (cardiac MyBP-C), which is found in heart (cardiac) muscle cells.

In Hypertrophic Cardiomyopathy, there is an abnormal thickening of the heart muscle with the potential blockage of blood flow and sudden cardiac arrest. Found in 1 in 500 people, common in young athletes and caused initially from a genetic predisposition. One of the leading causes of sudden death in young adults, only approximately 10% survive a cardiac event.

I had the pleasure of speaking with Austin McAnena, who is a part of the 10% of people to survive sudden cardiac arrest brought on by this genetic heart disease. Austin’s goal is to raise awareness about this silent condition and encourage people to have their hearts screened.

Here is Austin’s story:

“On January 17, 2018, I went running with a friend to train for an upcoming Spartan Race. About 5 minutes in, I told her my chest felt tight and went into sudden cardiac arrest without warning. She immediately called 911 and about a minute later, a good Samaritan driving by pulled over to start CPR. The firefighters arrived about 4 minutes after the 911 call, reviving me after the second attempt with the AED. I was rushed to the hospital where my body rejected sedation and any IVs, so they were forced to put me in a medically induced coma for 24 hours.

After waking up, you could imagine I was in shock about everything because I have no recollection of the event (which is a good thing). I was diagnosed with a genetic heart disease called hypertrophic cardiomyopathy, which is prevalent in young athletes and one of the leading causes of death for people under 30. A thickened left heart ventricle, and something that is extremely dangerous because there are usually no symptoms until it’s too late. I never experienced any issues my entire soccer career, and I never had my heart screened when I played at Ohio State. Currently there is no known treatment or preventative measures to take. I was told I need to have a defibrillator installed in my chest to prevent any future events. I will most likely need an ICD for the rest of my life and have surgery every 6-8 years to install a new device.

A week later I had a subcutaneous ICD installed under my left arm with a wire attached to my heart. It definitely took some getting used to, but I’ve fully recovered and am back to my normal workouts and routine. Throughout this process, I have definitely learned a lot and had much time to reflect.

I’ve learned we can’t control how much time we have here on Earth, so I want to focus on doing things that make me happy and those around me. I am part of the 10% of people who survive cardiac arrest, and I am so grateful. I want to encourage all of us to start living the life we want. I’ve decided to look at the positives in everything. It may sound weird, but this is one of the best things that has ever happened to me. It’s allowed me to wake up, allowed me to choose happiness, allowed me to live in the present. The positive news is I have a cool story to share, girls dig scars, and I never need to walk through metal detectors again.

Stop putting off goals and ambitions in life because “we will eventually get to them.” I told myself for years I wanted to learn how to dance, yet always made excuses and said “I’ll get to it someday.” So I signed up for salsa lessons and am having an awesome time. I share my story to encourage you to live the life you want. And to spread awareness about silent heart diseases that are more common than we think. Take preventative measures by having your heart screened, especially for any children.

There is a charity in San Diego called EP Save a Life (epsavealife.org) who do amazing work and offer free heart screenings for kids 12-25. I encourage everyone to get checked because I was always the person who thought it would never be me.”

 

Thank you Austin for sharing your story with us!