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Living Life & Loving It: Jon Mills’ HCM Story

08/23/2017

Age at Diagnosis: 19
Age Today 37 

At a routine physical just after high school, my doctor heard a heart murmur and soon shocked me with an HCM diagnosis. I felt fine. How could I have a heart condition? I sat there listening to him rattle off a list of restrictions: no heavy lifting, no intense exercise… For a 19-year-old kid supposedly in the physical prime of life, this felt all wrong. 

As a result, I didn’t take my HCM as seriously as I should have. It felt like it wasn’t a big deal because my symptoms were rarely painful. In the years that passed—even after developing chronic lightheadedness and shortness of breath—I wasn’t diligent with medications, staying well hydrated, eating healthily, etc. 

And then…I died. 

Out jogging with my wife and daughter one hot day in the fall of 2015, I suffered a cardiac arrest—collapsing with no pulse, consciousness, or breathing. While my wife called 911, a stranger running by stopped and administered CPR, buying time for paramedics to arrive and fully resuscitate me—even after I “died” a second time. 

The crazy part is—until the cardiac arrest—I had felt healthier than I had in years, thanks to a recent fitness kick intended to improve my heart. The ambulance raced me to the local hospital, where a cardiology team stabilized me and surgically implanted a defibrillator (ICD) with pacemaker to control my heart arrhythmia and prevent future cardiac arrests.    

New Care for a New Life
The hospital referred me to Tufts MC’s HCM Center upon recovery. I started seeing Dr. Ethan Rowin, HCM Center Co-Director, who advocated surgical septal myectomy to decrease the thickness of my septum, thereby improving blood flow and alleviating my symptoms. 

The surgery, performed by Dr. Hassan Rastegar, Tufts MC’s Senior Cardiothoracic Surgeon, in February 2016, was a perfect success. Start to finish, the care at Tufts MC was impeccable and made my recovery a breeze. Every single person involved—whether doctor, nurse, aide, or administrative staff—treated me and my wife (at my side from moment one) with the greatest kindness. 

Without a doubt, the surgery singularly restored a quality of life I didn’t realize I was missing. Before, I huffed and puffed up steps and couldn’t keep up with my fast-walking, purpose-driven wife. Today, I feel great! I can play with my kids again, I climb stairs with ease, and my wife jokingly laments the surgery, because I’m the one pushing her to walk faster. 

My health has completely turned around since finding Tufts MC’s HCM Center and Dr. Rowin. I’m doing so well now, I see him just once annually, along with my local New Hampshire cardiologist. I’m otherwise managing my condition by staying well-hydrated, exercising appropriately, and taking metropolol. Because HCM is hereditary, I now have my two biological children (ages 14 and 11) screened annually to protect them—so far, they’re in the clear. We don’t have to test our other two children, as they are biologically my wife’s from a previous marriage. We’re a little like The Brady Bunch—one big happy family together. 

Honestly, I owe my life to Dr. Rowin and the whole HCM team at Tufts MC. Because of these incredible people, I don’t just live life, I love every minute of it. They empowered me to never settle for just feeling ok—that there are always ways to feel even better—and they’ve inspired me to give back and help others. If, by sharing my story, I can help someone else just a fraction of how much Dr. Rowin and Tufts MC have helped me, I’ll consider it a great success.