In October 2014, Paul was at the gym when he suddenly collapsed. His doctors thought the cause was dehydration or stress – until he collapsed again while running just six months later.

Paul was originally diagnosed with CPVT after a panel of heart tests – but during a cardiac ablation three years later, he learned that his diagnosis is actually a form of ARVC. Today, he’s sharing his story to help others going through this diagnosis feel less alone.

After his second collapse, the ER ran a panel of extensive cardiac tests on Paul – including an ECHO, stress test, MRI, and EP study. “The doctors thought I had CPVT because they initially didn’t see any scarring on my heart, which you would see in ARVC,” he says.

Additional tests – which included a heart biopsy, another EP study, and a cardiac ablation – at Johns Hopkins, a top hospital for ARVC, revealed the scarring that led to Paul’s diagnosis. “I never had a symptom besides those two instances where I collapsed,” he says.

At a recent check-up, Paul learned after an MRI that he was experiencing more PVCs – premature ventricular contractions, an unstable heart rhythm. This led his team to recommend an S-ICD (a subcutaneous – or “under the skin” – implantable device that helps protect Paul from these dangerous rhythms).

“It’s been kind of confusing to have my ARVC progress even though I don’t have any symptoms,” he says.

Accepting his S-ICD has been one of the hardest parts of his heart journey. “I always want to jump in and ‘attack’ the ARVC, and keep it from getting worse,” he says, “but it’s really emotionally hard when the disease progresses even when you’re following all the rules.”

For those who are planning to get an S-ICD, Paul recommends asking your doctor what to expect during recovery.

“I didn’t expect the S-ICD to be sore near the leads; so I thought something had broken,” he says. “And make sure to ask about what short-term recovery looks like. A backpack strap isn’t going to push your device around in your chest, but that can be hard to convince yourself.”

Asking questions about the settings on his S-ICD, and working with his doctor to make sure he was comfortable with the settings, has also helped him to adapt to the device.

Paul – like many others in the ARVC community – was very active prior to his diagnosis. Adjusting to the change in his activity level has been another challenge; seeing the stories of others going through a similar journey has helped.

“One of the hardest things about this diagnosis is that it often affects people who are very active – and that’s part of their identity,” he says. “That was true for me. Emotionally, you’re making a lot of life changes. And when every new treatment feels like it encroaches – that can be really hard.”