Simon making the most of bad luck with heart
Do you happen to have an extra four-leaf clover handy? Maybe a rabbit’s foot you’re not using?
Hey – even a box of Lucky Charms cereal would work for Sam Simon right now, considering the run of bad luck he’s had lately.
His luck is so bad – it almost killed him.
Simon, 23, came to Wayne State College last year as a non-traditional freshman and made the Wildcat football team as a placekicker. The day after the team’s season was over last November, Simon came home and collapsed. After a series of tests, he was diagnosed with arrhythmogenic right ventricular dysplasia (ARVD). The disease would cause his heart rate to soar after exercising to the point where it would beat as fast as 300 beats per minute.
After semester tests, Simon had a defibrillator and pacemaker installed in his heart, which would detect any arrhythmic problems and shock his heart back to a normal rate. He was able to return to a normal lifestyle within a month, and decided to go play some indoor soccer at the Wayne Community Activity Center one Saturday morning.
And that’s when his luck really started running bad.
“I was feeling light-headed and was walking off the court when I got shocked the first time, and it jolted me because it was the first time that I’d been shocked,” he said. “Then it shocked me again, and by the third one I was laying down on the bench and it shocked me so hard it was lifting me off the bench.”
Simon’s pacemaker was hitting him with more than double the energy of an electric fence, his mother, Chele Meisenbach, said.
“He’d never been shocked before, so you thought it would be one time and it would be over, but then it kept going,” she said. “It was so painful to watch him go through it, because it would literally lift him off the bench and throw him back down.”
All Simon could do was focus on anything to keep him from making the situation worse as he was taken to Providence Medical Center and later flown to Mercy Medical Center in Sioux City.
“It was pretty horrible. There are a lot of things going through your head,” he said. “I was just trying to focus on breathing and try to think happy thoughts.”
After 48 hours in the Sioux City hospital, Simon said he was fortunate that the multiple shocks didn’t do any damage to his heart – although it did knock a couple of years off the battery life in his defibrillator.
“Yeah, I’ve only got 10 years to go now instead of 12,” he joked.
After he came back home, Simon’s mother found a Hearts For Athletes support page on Facebook that was started by Amy Cockrell, a mother from Alabama whose son went into cardiac arrest during a triathlon and was later diagnosed with the same disease Simon has.
“I just happened to find it on Facebook, so I contacted her and mentioned Sam, and I found out her son’s name is also Sam,” Meisenbach said. “I asked if she could help, and she immediately texted me and offered to help out. Later on, she called me and told us there’s a doctor waiting to talk to us at Johns Hopkins.”
Meisenbach and Simon talked with Dr. Tandri, who was part of the team of doctors at Johns Hopkins that first diagnosed the disease more than 30 years ago. Before they knew it, they were scheduled to visit Johns Hopkins’ medical facilities in Baltimore, Md.
“We were thinking it was going to be four or five months, and they said ‘Can you be here in three weeks?’ and we were thinking, ‘Oh yeah,’” Meisenbach said.
With the help of his grandpa, who loaned money for the trip, Simon and his mom made their way to Maryland. After a couple of days of sightseeing in the nation’s capitol, Simon went in for a procedure known as cardiac ablation, where adrenaline is pumped into the heart and the misfiring parts of the heart that cause the arrhythmia are burned off.
“The heart doesn’t really need adrenaline, and in Sam’s case it can’t go to his heart because it will kill him, so by burning these spots, it shuts off those areas where the adrenaline goes in,” Meisenbach said.
The procedure went without a hitch, but problems resurfaced when Simon’s body had trouble dealing with some of the pain medication he was taking.
“I had some complications from the narcotics and I got really sick and had some kidney failure,” he said. “I’d wake up just long enough to throw up and then go back to sleep. I just couldn’t catch a break.”
The stress was taking its toll on his mother as well.
One night, she was sitting in the visitors’ waiting room when she heard her phone beep with a message. Through her tears, she saw who the message was from.
“That night, we’d had the worst night and Sam was pretty much comatose the whole day and I’m in the family room bawling, and I see a message from John Dunning,” she said. “He asked what I was doing and where I was at, and I said ‘I’m in the family waiting room, why?’ And then I look up and there he is.”
Dunning was in Washington, D.C. for a conference, and made a special trip to Johns Hopkins to visit Simon – although, Simon admits, he was pretty confused when he saw Dunning walk in his room.
“I was in pretty rough shape at the time, but I see him wearing a Wayne State shirt and I was wondering what was going on,” he said.
Meisenbach said the visit from Dunning was like a gift from God.
“He had talked to Sam before and was encouraging him and telling him he’s been through some of what he’s going through and would always offer encouragement, and he took a taxi all the way from DC to Baltimore just to visit. It was like having a slice of home show up.”
After coming home, Simon had to make a return trip to Sioux City to drain a gallon of fluid that had built up around his heart and lungs after the surgery. He was able to finish his studies for the semester, and now he and his mother are looking to start a non-profit organization that will offer free heart screenings to athletes and younger people.
“Almost every day, we’re seeing stories of young people who are having heart issues,” Meisenbach said. “There was a kid in Iowa who died on a wrestling mat, and another who died during swimming practice . . . we’re starting to see this more now and we wanted to try to do something that would make a difference.”
Simon said the group is looking to do free heart screenings, starting with athletes and moving beyond that to younger people. A group of local residents, including Simon, are being put together to serve as board members for the non-profit group called Northeast Nebraska Sports Screenings.
With any luck – and hopefully it’s all good from here on out – Simon will be able to stay somewhat active and lead a long and healthy life.
“I want to be able to play golf this summer, and maybe shoot hoops and kick a soccer ball around,” he said. “I won’t be able to run like I used to, but hopefully I’ll be able to stretch my limits out a little.”
“It’s a stinky hand for Sam to be dealt,” his mother added. “I’d trade places with him in a heartbeat, but hopefully this experience will help us help others and if we can help one person walk away from it alive because of a heart screening, it will all be worth it.”