Patient Stories

Tom's Story

Tom was diagnosed with dilated cardiomyopathy caused by a rare disease called cardiac sarcoidosis. One day, Tom received 11 shocks in five minutes from his defibrillator. He was experiencing what is known as a “v-tach storm.” He woke up two days later in the ICU, where doctors told him he wouldn’t survive more than another day unless they took action.

The wait for a heart transplant can be fraught with uncertainty and fear due to poor or deteriorating health, but not for Tom. The 49-year-old marina owner, who was supported by the SynCardia temporary Total Artificial Heart (TAH) for more than 500 days, felt confident and optimistic knowing his medical team could wait for the perfect match because he was healthy and stable.

“I felt better on the Total Artificial Heart than I did with my real heart,” said Tom. “I couldn’t walk 15 steps with my real heart without being completely winded at the end. When I got the Total Artificial Heart, I went to work every day. It’s the best decision I’ve ever made because I’m still alive and now I have my transplant. I was confident that they were going to get me a good heart and they did.”

Tom was first diagnosed with dilated cardiomyopathy. A year later, a PET scan showed that his condition was caused by cardiac sarcoidosis, a rare disease in which clusters of white blood cells, called granulomas, form in the tissue of the heart.

Several years later, Tom received 11 shocks in five minutes from his defibrillator. He was experiencing a “v-tach storm,” which is when the lower chambers of the heart start beating very quickly, triggering the defibrillator to try to shock the heart back into a normal rhythm multiple times.

“The defibrillator shocks you from the top of your head to the bottom of your toes,” said Tom. “If you had flip flops on, it would probably knock them off your feet. The first time I ever got shocked, it knocked me off a stool, and my eyes were watering, and my hair was tingling, and then five seconds later I got shocked again. I wouldn’t wish it on my worst enemy.