That sounds really good, it's great you got an hour to yourself with Dr Elliott.
As you know ARVC diagnosis is not black and white, I spent several hours being MRI'ed which showed no real indication of ARVC, and other tests were also not clear. So my diagnosis was primarily based on the EP study during which they induced ventricular tachycardia (VT) quite easily. Whilst they were at it they also did an angiogram and it was those two that my electrophysiologist, Dr. Rowland, found the most convincing for ARVC. As of yesterday I have an appointment in a few weeks for genetic testing with Prof. McKenna which will confirm the diagnosis if it turns up a positive result for one of the known causative genes.
I've not had an ablation and there are no plans for me to have one. Whilst that might stop the VT for a while in the case of ARVC it does nothing to stop further damage occuring, so the symptoms will come back. Also it will cause damage to surrounding healthy heart cells and I suppose in ARVC the aim is to keep as many of them healthy for as long as possible.
An ICD was mentioned as a possibility for the future but they are not without their own issues and to be honest it's something I'd ike to avoid for as long as possible. I seem to tolerate the VT well so my risk of cardiac arrest is deemed relatively low. That said my doc said they should be viewed as a guardian angel.
Exercise-wise the B-blocker generally kept my heart rate and rhythm in check, in fact they kept it about 20 bpm lower than usual, thus restricting my running ability. So I could run (albeit slower than I used to) at a normal-ish heart rate. I used to try and average around 140, peaking about 150 and could do that for 7km okay - not run regularly for almost a year though so who knows now. Recent cycling I have tried to do the same but have had some VT attacks. However my HR does not regularly go up every time I exercise; and I cannot recognise a pattern in when I get VT and when I don't.
Anyway, that's about all for now. Should do some work!
Hope you had a good time at the meeting and took advantage of that nice weather. No rush to post anything here for me but a few key points would be nice.
I've swapped a few emails with the CMA this week and apparently the London meeting may have a specific ARVC session and normally gets 10-15 people with ARVC attending. So I'll definitely go along to that one.
Yeah I'm fine thanks, just a "normal" desk jockey now, rather than a desk jockey with cycle helmet and running shoes under desk and various bits of damp lycra smelling on radiators!
I did a little bit of hill walking last week but have been away at the weekends so my recent rides didn't happen. Glad the 5k was fun.
Thanks for the details, that starts to sound more interesting. I need to check if I can have Saturday off from family duties but if that's okay I think I'll come up. Will let you know if you can expect to see me there.
I haven't been to any of the CMA meetings so thanks for pointing out the one in Manchester on Saturday I wasn't aware of it. I was planning to go to an Arrythmia Alliance one last autumn but it was cancelled at short notice. I might try to get up there on Sat but suspect that will be tricky now. It would be interesting to hear about their latest research, but you can't say much in a 30 min talk.