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Grateful & Giving Back: Mike Papale’s HCM Story

07/06/2016
Age at Diagnosis: 17
Age Today: 27


My first HCM symptom was dramatic. August 24, 2006, while sitting on the bench, coaching a summer camp basketball game, I slumped over, unresponsive. Within minutes, I had turned blue. I was 17, and had gone into sudden cardiac arrest. Someone gave me CPR—saving my life while the ambulance raced to the scene—before EMTs used an automated external defibrillator (AED) to restore, or “shock” my heart back into rhythm. The longer you go without being shocked, the lower your chance of survival. My chance of survival was one in a million.

I had a second cardiac arrest before arriving at Connecticut Children’s Medical Center in Hartford, where I spent the next 14 days (the first two, unconscious on a ventilator). Tests led to an HCM diagnosis, and because of the cardiac arrests, I was in the highest risk category, so doctors advised permanently implanting a defibrillator (ICD). At the time, I was crushed—coming to terms with the idea of a device living inside my body and the life-altering news I would never be able to play competitive basketball again. But I quickly changed my thinking, realizing I was fortunate to be alive, and would have to make some adjustments.

Today, it’s hard to believe I ever resisted getting an ICD. It hasn’t affected the last 10 years of my life—except to save it. My life is 99% normal. I think every HCM patient should have one. The implantation was really routine; no big deal. I don’t even realize it’s there. 

In Search of The Best

My pediatric cardiologist and electrophysiologist in Hartford were amazing, but as time went on, realizing I was graduating from pediatric needs, my mom and I wanted to find an HCM specialist. Research pointed us to Dr. Barry Maron in Minneapolis, who wrote several books about the disease. My mom called him, and since Minnesota is so far, he told us about his son, Dr. Martin Maron, at Tufts Medical Center. More research revealed how famous he is in the HCM field, and at that point, it was a no-brainer. We were soon driving to Boston—only two hours by car, and we didn’t mind at all. 

Now that I’ve found Dr. Maron, I will never see anybody else; I will never go anywhere else. Tufts MC has been a family atmosphere from moment one. Lead HCM Nurse Practitioner Noreen Dolan is beyond incredible. She and Dr. Maron truly care about me; about my family. They’re the best. Dr. Maron’s obviously a genius, he’s cool, and he’s just a good guy. Any patient would find him instantly relatable, and he’s dedicated his life to all the intricacies of HCM. He wants me to live the most normal life possible, and thanks to his guidance and encouragement, I absolutely do.

Harder, Better, Faster, Stronger
In fact, I’m in the best shape of my life right now—I feel better than I have ever felt. Dr. Maron’s guidance has given me the confidence to work out six days a week, play golf, get myself into top form, and truly live the best life possible. He’s helped me realize where to play it safe, sure—but mostly, he’s taught me that life with HCM is about realizing all the great things you can do. My dreams of playing pro hoops morphed into dreams of coaching—I’ve been a college basketball coach for years now and I absolutely love it.
  
To look at me, you would never know I have a heart condition and an ICD; swallow a beta blocker pill (to control my heart rate and blood pressure) twice a day; see my HCM specialist once a year. Thanks to Dr. Maron, my life is so normal, it’s easy for me to forget, too. But I’ll never forget to give back. 

My cardiac arrests made me realize no one should ever be far from a defibrillator, so in 2015, I started a foundation to buy AEDs for private citizens, institutions, and anyone who needs them. I am so grateful to share my story, whether here or speaking in front of groups of people—if I can help just one person, it’s worth it. I could talk about my experience for hours. Life with HCM may be scary at first, but the reality is, with proper management, you have a whole lot of life to live. 

To learn more about Mike’s non-profit foundation, visit inaheartbeat.org.