INTRODUCTION

If you've landed here, you are probably looking for information. Maybe you are an endurance athlete whose heart is freaking out. Maybe you've been diagnosed with ARVC - Arrhythmogenic Right Ventricular Cardiomyopathy - or the diagnosis is one of several possibilities. This blog is about my experiences and outcomes, starting when my heart freaked out enough that I decided to have it checked out.

I'm now a long way down this road. In March of 2008 I began treatment for a potentially fatal heart arrhythmia whose cause was unknown. I was fit and healthy, having spent a good part of my adult life as an elite cyclist, much of it racing in Europe. 

At the time Exercised-Induced Arrhythmogenic Right Ventricular Cardiomyopathy (EI-ARVC) was not a diagnosis. ARVC (without the Exercise Induced bit) was the only game in town: a predominantly genetic disease, involving the progressive dysfunction of the heart's right ventricle. If you were an endurance athlete presenting with possible ARVC, you were put in the same bucket as those with genetic ARVC. You would be told to cease all exercise of any intensity, and you'd probably be given a lifelong prescription for beta blockers or stronger stuff. 

This is still the case today, despite a growing body of research pointing to a different diagnosis and progression for genetically-negative ARVC cases found in people with life-long athletic histories, especially in high intensity endurance sports: running, triathlon, cross-country skiing, and cycling. As of 2021, doctors, clinicians and researchers worldwide are furthering research and treatment of EI-ARVC. Still, the medical world is conservative, and the conventional wisdom for all anyone within the spectrum of ARVC presentation is to cease intense exercise.

My experiences (thus far) run counter to this. As of 2021 - 13 years after multiple ablations and implantation of an ICD - my heart dysfunction has not progressed in any meaningful way. This despite riding my bike on average 5 to 6,000 miles a year, and dabbling in competition occasionally. To be clear, after my diagnosis I quit racing at a high level and significantly reduced my training load. And I recognize that I might be an outlier, or that things might take a turn for the worse in the future. Progressive diseases can be idiosyncratic, and I may just be incredibly lucky so far. But the fact that I have been able to continue to live an active life, do the sport I love, and enjoy the benefits of cardiovascular exercise 13 years after the medical establishment would have had me forevermore on a couch is worth some reflection.

I also feel I have some responsibility to provide updates on my condition as I age and adjust my activities. For 13 years I've used myself as an experiment, it would be a shame not to share my findings. It certainly has not all been straight-forward or easy. I've had setbacks, crises, and loss of confidence along the way. I've moved homes, changed jobs, and had a child,  all with accompanying changes in priorities. Through it all I've tried to remain consistent in my active life; exercise - especially cycling - keeps me grounded.  Through this I've become a kind of advance guard for those with EI-AVRC.

I started this blog to help me process what was happening to me back in 2008, when my heart was at its worst.  I did not yet know about ARVC, and I was lucky enough to find myself in the care of one of the few electrophysiologists who was skeptical about the exercise moratorium on ARVC patients, and had the experience and expertise to back up his skepticism. He was also an innovator in the novel epicardial ablation technique and was able to rid me of recurrent ventricular tachycardia, and put my life back on track. 

From 2008 to 2013 I provide sporadic updates, but there is a good deal of information in those entries, and if you are looking for wisdom about ablation, ICD implantation, medication and recovery, that's a good place to start. Restarting this blog now, in 2021, I hope to provide regular updates as I age, as well as back-write a bit of what I've encountered and experienced since my last entry in 2013. 

 ARVC is a relatively new disease, and treatment for it continues to advance. Nothing is black and white with this condition, everything exists on a spectrum. I share my experiences only to provide perspective, not to provide guidance. Thank you for reading!

Craig