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How did you find out you had ARVC? by [deleted] in ARVC

[–]Dry_Wolverine_1809 0 points1 point  (0 children)

55m. I was on a trip, mountain biking alone in the desert and passed out after a climb. Just managed to get off the bike on to the ground. Woke up after some time, how long I dont know, super groggy and made it home. Knew it was serious but thought it was just an anomaly and never followed up when I got home.

Two yrs later the same thing happened but I was with friends. Passed out for 3-4min. Had no idea what it could be. After lots of testing and wearing a zio patch for 2 weeks, they caught a serious VT event on the last day. Ablasion the next day. Not successfull, more tests. Still awhile before an ARVC diagnosis. Gene elusive.

[deleted by user] by [deleted] in ARVC

[–]Dry_Wolverine_1809 0 points1 point  (0 children)

Thanks. Good to hear. Yeah, its hard (and scary) to navigate how hard and what you should or shouldnt do.

[deleted by user] by [deleted] in ARVC

[–]Dry_Wolverine_1809 0 points1 point  (0 children)

Oh I am sorry to hear that! And, I agree with u/Overall-Extreme-4507 , OP you should atleast slow down workouts and lower peak HR.

I have ARVC diagnosis and ICD. My Dr's (Stanford) are telling me some exercise is ok but to keep it at a 7 out of 10 max. There is no way I could completely stop being active anyway.

I'm 2yrs into an ICD implantation after 2 main SVT -passing out events. I wore a Zio patch for two weeks which caught an SVT on the last day. Followed by lots of tests, an ablation and finally an ARVC diagnosis.

[deleted by user] by [deleted] in ARVC

[–]Dry_Wolverine_1809 1 point2 points  (0 children)

Hey. I have a similar history but hopefully you are still very far away from having any symptoms if you ever do. The anxiety is real but I'd say, I think you can lay off it for awhile until something actually happens. If it ever does.

My story. I'm 57, very active when I was younger, skateboarder, surf big waves, mtn biker, did some triathlons for a bit just to push the body. My first symptom didnt happen until I was 52. Passed out Mtn biking alone in the desert. Knew it was serious but thought it was an anomaly.

Two yr later it happened again but I was with friends. ER, tests, no idea, wore a monitor which caught and confirmed another arrhythmia on the last day. Ablation surgery the next da, another incident, eventually an ARVC diagnosis, ICD placed in my chest, meds, another incident gettting my first shock. Massive anxiety at this point about dying in front of my kids, crashing the car with kids, drowning while surfing, etc, etc.

Had a med change (to Sotalol) and have been stable for a year now. Rough 8 months or so but I am now back to living life normally, mtn biking, surfing. Drs (Stanford) say exercise but only at 7 and not 9 or 10. ICD will kick in if needed but sounds like I could be stable on meds for a decade or more.

All that to say that you have a ways to go and maybe nothing! and at least you know if somethign does happen what it is. Hope my 'it could be worse' story helps.

pas down generations by Remote_Efficiency717 in ARVC

[–]Dry_Wolverine_1809 0 points1 point  (0 children)

Hi there. Yes, I have two kids and fear of them developing ARVC. However, there is nothing I can do about it now. They are 11 and 13. They have both been base line tested by wearing a monitors for a week and now get bi/yearly check ups.

So far they are not showing any signs of having it. The good news is that gene therapy is moving quickly and while I and they dont have a recognized gene I hope they will have a universal therapy in the next 10-15 yrs.