Can you tell me a little bit about your ARVC journey – from diagnosis to where you are today?

I was diagnosed with ARVC in May of 2021, but I got my ICD in August of 2017. Given that ARVC is a genetic disease, I guess I had it in 2017- I just went undiagnosed.  I’m a lot better off today than I was when I was first told I had the disease- it hit me like a ton of bricks and I had so many questions that my doctors didn’t seem to be able to answer or didn’t have time to answer.  It took getting referred to a heart failure expert to finally get answers to all my questions.

What challenges did you face after diagnosis?

Initially, when I got my ICD, I’d hoped that my arrhythmia issues would go away and life would get back to normal at some point- I hoped, like many of us, that my heart would somehow heal itself. With my ARVC diagnosis, my hope for healing – and hope for my arrhythmia issues going away – was gone. With this diagnosis, everything changed.  I was now told that I should limit exercise and that stressing my heart would make the disease progress quicker.

How has your ICD impacted your life?

During my first four years with my ICD, it barely impacted my life at all. My doctor said I could go about my life normally, that my activity levels and exercise levels didn’t need to change, and that I had no restrictions. So, I went about my life without changing my exercise regimen- I played baseball in a 50 and over league; I went to the gym regularly; I participated in strength and core building classes; and regularly walked, ran and hiked whenever I wanted.

In February of 2021, I experienced a ventricular tachycardia storm and after trying to pace me out of the storm, my ICD shocked me 5 times within about a minute.  I ended up in the hospital for 5 days while they adjusted my meds and kept me for observation.  I was released from the hospital, but I was immobilized physically and mentally- for some reason this episode had affected me much differently than previous shock episodes.

I had ablation surgery 3-4 weeks after this hospitalization- in April of 2021- and during the surgery they determined that I had ARVC. I came out of surgery with a diagnosis, but not a lot of information about ARVC. My doctor tried to keep up with my questions, but couldn’t find or get the answers I was looking for.

I found the ARVC group on Facebook and then the SADS Foundation. Once I was able to get my questions answered it made things much better for me, although I was still living in mental and physical fear of my device going off again. With time, and through talking with my doctors and others in similar situations, I’m now further down the path of recovery from the mental and physical aspects of this disease.  I don’t think I’ll ever be fully recovered because I know someday my heart is going to act up again and I might have to start all over again- fortunately I have the tools and the people in place now to get back on that path if/when it happens again.

What advice would you give to someone who was newly diagnosed with ARVC?

Based on my experience in the last year and a half, and talking with others who have ARVC and ICDs, everyone’s journey is different, but there are often a lot of similarities in our journeys too.  A lot of the struggle is physical, but there are often some mental issues like anxiety and PTSD that develop as well.  I think talking about and opening up as we’re able to, about all of these struggles bond people together and help make us and those around us stronger.

It’s difficult to talk about our journeys…our conditions…and what we’re going through, but I found that the more I talked about it, the faster I healed.  When I first got diagnosed and went through the shock storm, it was really hard to talk about- it increased my anxiety even more to talk about it. But the more I talked about it, the less anxious I was. It wasn’t a quick fix but talking to other people not only helped me get better but helped those around me as well. 

Talk with family, friends- find a support group (they’re out there!)- ask questions- lots of questions and try to help others as others help you recover and live with this condition.  Time really does heal!

How has the SADS Foundation been helpful for you?

The conferences have been really helpful, as well as meeting more people who have a SADS condition – in particular for me, meeting more people with ARVC. I joined SADS right when they were starting their monthly ICD Support Group, and within a month or two we had our own ARVC group as part of that support group. Talking with others once a month (sometimes more often) who are in a similar situation has been very helpful for me. 

Learn more about the SADS Foundation’s resources for families with ARVC here.