In 2016, Andy decided to complete a marathon in all fifty states. He wanted to finish this challenge quickly, and set a goal of running 10-12 marathons each year. In 2020, Andy experienced some concerning symptoms while training – including a high heart rate and feeling lightheaded, despite being in excellent shape and with no prior health issues.

“I explained my symptoms to a cardiologist, who gave me a full battery of tests,” says Andy. “Everything came back clear and he gave me permission to start running again.”

Andy resumed running again in early 2021, and felt totally fine; he even ran a few more marathons. In the summer of 2021, his symptoms returned. “My symptoms progressed quickly to several instances where I passed out, came to, and then felt okay. Each time I would take some time off running and then resume when I felt comfortable. I still was not overly worried because I had always tended to struggle running in hotter summer conditions and the doctor said I was fine.”

By the fall of 2021 Andy had run marathons in 48 states without any further incidents. However, the symptoms returned again during his next marathon in New Hampshire, his 49th state, and he ended up walking the last few miles. “I was getting very close to meeting my goal, but I was also worried about my symptoms,” he says. “I saw another cardiologist who did a full battery of tests – which came back clean again. I was told again that I had nothing to worry about.”

The final, 50th race was in Hawaii. “I had a few doctor friends who were also worried,” he says. “They asked me to get one last EKG before I went – which came back clean. I agreed with them that I would walk most of the race to avoid my heart rate getting too high. At that point despite all the clean tests I knew deep down something was wrong and I probably shouldn’t do the race. But there was also a sense of denial about the seriousness of the issue and I was so close to achieving my goal. In hindsight, that was a terrible decision.”

A physician friend was also planning to run the race, and he agreed to run with Andy – just in case. Andy completed the race through a mix of light jogging and walking. Right after crossing the finish line, Andy collapsed. “I got another EKG in the medical area by the finish line – and it showed PVCs [premature ventricular contractions], which had never come up on a test before.”

Armed with the printout of his abnormal EKG, Andy returned to his cardiologist. “I finally had ammunition to advocate for myself,” he says. “My heart felt terrible and I knew something was wrong.”

“I finally had ammunition to advocate for myself,” he says. “My heart felt terrible and I knew something was wrong.”

Andy’s doctor agreed to give him a Holter – an at-home monitor which would look at Andy’s heart rhythm continuously for two weeks. “By this point, in February 2022, I was not comfortable running or doing cardio,” he says. “I did some light lifting and yoga, plus walking, while wearing the monitor. Any time that I felt something was not right – which was four times during the course of wearing the Holter – I would hit the button to report it. The very worst I felt was during a dog walk with a friend.”

A week after returning the monitor, Andy was at work when a call came through from his cardiologist. Since he was at work, he didn’t pick up. His cardiologist called eight times in a row, and when Andy finally picked up, told Andy that he needed to immediately go to the hospital.

“I wasn’t given any details – I thought maybe my doctor would just do some more testing at the ER,” he says. But the hospital admitted Andy for overnight observation, and in the morning a team of six cardiologists came to talk to him. “They told me they’d looked over my Holter results, discussed them as a team, and wanted me to know they didn’t know how I was still alive,” he says. “I’d had 22 sustained episodes of ventricular tachycardia [VT] – a fast and dangerous heart rhythm. The longest episode was 15 minutes and happened on that dog walk. My heart rate on that walk hit 444 beats per minute. It was only then that the wall of denial that I’d built up over the past 18 months completely collapsed.”

Andy was admitted to the hospital for ten days; during that time, he went through more testing, including an Electrophysiology Study where further VTs were stimulated. As a result, he had an ICD implanted. He still had no concrete diagnosis. “As they discharged me, my cardiologist said, this is just like an episode of House for us – except we still don’t know what’s wrong with you.” Shortly after discharge, his cardiologist also ordered genetic testing, but told Andy that the results weren’t clear and didn’t have any implications for Andy’s diagnosis.

The cardiologist told Andy that he was cleared to ease back into light exercising (no more marathons!). “As I did that, I pretty quickly experienced breakthrough episodes of VT,” he says. In March of 2022, he was hospitalized again, and shocked by his ICD in August of 2022 on a hike. To try and calm down these cyclical patterns of VT, Andy underwent an endocardial ablation.

“It was a very aggressive ablation – they stimulated tons of VTs,” he says.

After the ablation, Andy’s heart just got worse. He had another thirty episodes of VT after his ablation in just three months, and was shocked twice more by his ICD. “In my case, the ablation really inflamed the arrhythmia,” he says. His cardiologist told him the ablation had failed, and referred him to a cardiologist at the University of Pennsylvania who could do an epicardial ablation.

“I had done so many tests, so many procedures, that I was skeptical that anything would be able to help me,” he says. “But when I woke up from surgery, the first thing the cardiologist in Pennsylvania told me was that I had something called ARVC. That was the first definitive answer I’d ever had. He said it so matter-of-factly, but a diagnosis was a huge deal for me. I could finally Google what I had, and read every single medical journal article I wanted to about my condition.”

Through looking up ARVC via YouTube, Andy found the SADS Foundation. “I found the Johns Hopkins ARVC Program through SADS, which is only thirty miles from where I live. I was able to get a confirmed diagnosis. I’m gene elusive, but my VUS mutation actually had shown up on that genetic test many months earlier.”

“I also now treat February 22, the day of my 444 BPM, as my second, unofficial birthday. It’s crazy to think that I survived that day, but I also now think of it as the first day of my new life.”

Up until that point Andy had felt alone – like nobody else could understand his journey. “When I went to the SADS Foundation Family Seminar in Baltimore, I met two other people with ARVC,” he says. “I decided I wanted to get much more involved in the community. Having a community of people who’ve been through the same thing has been very helpful for me.”

Two years have passed since Andy’s heart rate hit 444 BPM during the dog walk. “I think about that day all the time,” he says. “I went through a huge journey – at first I mostly felt anger about why this happened to me, and why I was getting worse and worse. I’ve moved from anger to acceptance, and am able to find some gratitude in still being here and I’m enjoying finding new things to do that aren’t so exercise intensive! I also now treat February 22, the day of my 444 BPM, as my second, unofficial birthday. It’s crazy to think that I survived that day, but I also now think of it as the first day of my new life.”

Six months have passed since Andy’s diagnosis and epicardial ablation. During that time, he has had no VT episodes or ICD shocks. “I’m adapting my life to this condition, and learning that adaptation is a dynamic process, since ARVC changes over time,” he says. Andy recently joined the ARVC Steering Committee at the SADS Foundation to help give back to the ARVC community – and others who’ve had a similar journey.