At a Glance:
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 in December 2013. 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.
In May 2016, 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.
While enjoying life at home using the Freedom® Portable Driver, Tom was able to send his 16-year-old daughter to her junior prom.
Tom woke up two days later in the ICU at University of Rochester’s Strong Memorial Hospital. Doctors told him he wouldn’t survive more than another day unless he received the SynCardia TAH. Tom and his family said OK, and doctors performed the implant surgery the next day.
“When I woke up from the surgery, I felt better right off the bat,” said Tom. “I could feel my feet, they weren’t numb anymore. My color was better. I walked 80 yards from the ICU to the stepdown unit two days later. I felt really good.”
Less than a month after the implant surgery, Tom was stable enough to be switched to the Freedom® Portable Driver, a lighter, smaller pump for the TAH that allows stable patients to go home. About a week later, he was discharged from the hospital to enjoy life at home while he waited for a matching donor heart.
“It was really great to go home and just live normally — to go back to work and see everybody that I love,” said Tom. “The trees, the wind, having grass under your feet. Driving down the road in your car. Going to a restaurant and ordering something that you want. All the little things. You’re kind of a spectacle when you go out, people look at you, but a lot of people are interested in it, and I spread the word. I told them it was my heart clicking away.”
Among the many things Tom was able to enjoy while at home was sending his 16-year-old daughter to her junior prom and returning to work running his marina. He’s also had the opportunity to speak with other heart failure patients considering the SynCardia TAH.
“I really want to pay this whole experience forward,” said Tom. “I really enjoy meeting other people who are awaiting transplant, or contemplating the artificial heart, and uplifting their spirits like people did for me. That’s my new goal, my new life.”
After more than 500 days of life with the TAH, Tom’s doctors finally found the perfect heart in October 2017. Tom hopes to meet his donor’s family someday and plans to write them a letter once the required year has passed.
Since his transplant, Tom has had eight biopsies to test for rejection and they’ve all come back perfect. This June, he is looking forward to watching his daughter graduate from high school and turn 18. Beyond that, he just plans to enjoy life as much as he can.
“I’m looking forward to doing things that I never really did, and maybe travel a little more and take more time off during the summer,” said Tom. “I have two guys who work for me, and they did a great job in the fall for me, and I have to know that I can let go and let those guys do their thing and take off for a few days. I want to take more time for myself and my family. I’m just happy to do anything now to be honest with you.”