This page perplexes me.
So I recently joined this page within the year after finding out about my condition. I have a burden of over 20% and climbing even on meds, despite these recent changes I still live a pretty darn normal life, aside from the meds and cardio appointments my life itself isn’t all that affected much. For anyone concerned about me/my health it’s not really the point of this post, my health is being monitored by professionals from all angles.
My view of this page has been slowly souring as I thought this would be a place to get information about and hear about others experiences with high burdens and ablation experiences. Yet I have been more than let down with this page and am curious if there are any lurkers out there who feel the same.
I seem to come across an abundance of posts of people that seem to “want” to have PVC’s?? It sounds confusing worded that way but seriously, I’ve seen an alarming amount of posts from individuals whose cardiologist has assured them their “1% burden” is not of concern. Yet they post to this page explaining their Dr is clearly wrong and the PVCs are effecting their entire life and well being. While that *may* be the case, as someone with 20% perspectively, one out of every four of my beats is a PVC. I’m on a heavy anti-arrhythmic medication and it’s still climbing, ablation is the next step. All that said and I still wouldn’t freak out and tell my Dr he’s wrong, nor would I say even at this high of a burden does it “ruin” my life.
All that to say, I personally believe either medical anxiety is running rampant on this page and spreading like wild fire or the misinformation regarding PVCs and related conditions is spreading just as fast. A lot of the days on this page feel like I’m reading the same story of someone freaking out about their less than 5% burden and criticizing their Drs for not treating it, when it would be extremely irresponsible to disregard the risk vs reward of the medication side effects vs the risk of having a burden so low.
That’s my rant. I apologize in advance of it feels as if I’m targeting a specific person, I assure you this is not a targeted post as it’s the majority of the posts on this page. Nor is this post created to belittle anyone, or their experience. I’m just genuinely perplexed and a little saddened that I haven’t found much relatable content of people in similar situations to mine.
Side note: Any other peeps over 20% who’ve also been on/currently on Amiodarone or similar meds. And/or those who have had ablation or are awaiting ablation please do share your experiences, either on this post, to me directly, or please please make your own post and use my post as a push to share your experiences.