Does anybody out there have any experience of dealing with ARVC (Arrhythmogenic right ventricular cardiomyopathy)? I was diagnosed with this a couple of months ago after a couple of years of experiencing bouts of rapid heart rate which culminated in me being admitted to hospital.
Since then I have had two rounds of catheter ablation to attempt to get rid of it. However the doctors stress that ablation (if it works) will only get rid of the current manifestation of electrical disturbances and that more are likely in the future, and if I keep running it makes them more likely still. I have run since my schooldays (I am now 38) and the 2 months since I was first admitted to hospital is the longest break I have ever had. I was doing about 50 mpw, now I am not doing anything.
As well as no running I am currently on a beta-blocker (Bisoprolol) which fairly effectively stops me from doing much anyway. And aspirin to thin the blood.
Next week I have an exercise test to see if the last round of ablation was effective - if it was then I may be allowed to do some gentle running and they may reduce the dose of betablockers. The consultant is fairly sympathetic to the idea that I want to run but he is adamant that I can never return to the level I was doing before.
They don't seem to be very clear on exactly what sort of exercise causes the problem - I asked whether it depended on the speed or the volume. Would it be ok if I ran very long distances very slowly? Or if I only trained 15-20 mpw but more intensively? They don't seem to really know but weren't very happy with the idea of either. Not very far and not very quickly seemed to be the only option, which is fine but doesn't give me any scope to test myself, to compete. On the other hand I don't want to drop dead.
Until 2 months ago I knew nothing about this and I have been learning quickly. Any advice/information is welcome.