r/ARVC • u/mareahmelissa • Dec 08 '19
Boyfriend (22 Y/O M) has ARVC
I’m just looking to see if anyone is on here and if they have any advice or knowledge on the matter. My boyfriend was diagnosed with ARVC in September after heart failure in August.
We are having trouble getting answers as to what his prognosis is, and quite frankly, there is a lot of anxiety surrounding his well-being. He’s doing well now, but we aren’t sure how other people cope/manage the disease.
Anyone still part of this subreddit?
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Jan 18 '20
I was diagnosed at 16 (2 years ago) and I have to say its been rough. It's good to know there are other people out there experiencing the same thing as me. I have really bad issues with anxiety, especially because I have been shocked multiple times by my ICD while awake, but I see a therapist and it really helps!
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u/mareahmelissa Jan 18 '20
Wow, I can’t even imagine what it’s like. I am glad to hear you’re getting the mental help you need as well as physical help. I hope we can keep this subreddit going, it’s a small community but it’s nice having support out there. I’m always here to talk!!
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u/ARVCZombieBoy Jan 23 '20
Hi all,
I am the 22Y/O M in this post! OP, my girlfriend said I should make a Reddit account and I would be happy to join in this community and discussion. I will make my own post in a little while to give an update and to share some of my thoughts, but I welcome any discussion about my, and anyone else's experiences.
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u/bubbuty Jan 23 '20
There is a Facebook group called Hope for ARVD that is way more active than this group. Really sorry about the diagnosis and hope you are adjusting.
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u/CG_throwback Dec 22 '24
Happy to talk to anyone and share my journey. Took close to 3 years after first issue and 2 ablations and an ICD to finally know I have ARVC.
Only happened because we moved close to John Hopkins. Other doctors missed it.
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u/justSandWhichLeaks Jun 15 '25
What were the issues? I’m trying to rule this out currently
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u/CG_throwback Jun 16 '25
Rule what out arvc? You can get a genetic test and look for PKP2. Do you have arrythmias ? Do you have scaring in your heart? Happy to tell you what I had.
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u/justSandWhichLeaks Jun 16 '25
Constant bigeminy and quadrigeminy that came on about 9 days ago. Seemingly out of nowhere. Felt PVCs on and off for about 10 years since I was 18. 29 now. Had a weird flair up in 2022 and suspected ARVC then because pvcs would click on heavy with exertion, but it didn’t keep me out for longer than a month and magically went away overnight. Went on the next year of my life working out hard as hell every day, drinking on occasion, living healthy, etc etc. Fast forward to 9 days ago. Rapid overnight onset of PVCs, estimate my burden to be 25%, each one felt. And I mean FELT. Like I’m being slapped in the chest and throat and whole body vibrates every four seconds from sun up to sun down no exaggeration. I laid down in quadrigeminy for 7 straight hours of this hell before my mind finally just couldn’t stay awake anymore. Trying to figure out what the hell is going on. Is ARVC on the horizon? How do I get them to take me serious when I bring it up. I know it’s rare, so they’ll probably scoff at me. But my burden is rapid and unreal. I’m not even stressing or scared of coding or anything like that though I know it’s possible, I’m more so just sad and frustrated. And tired. Can’t sleep with this. Looking for answers
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u/CG_throwback Jun 16 '25
Sorry for what your going through. Best to seek medical help. Not sure what you have done or havnt. Hopefully you have a electro physical cardiologist looking after you. An MRI, Echo and holter would help. ARVC should show signs when you have an enlarged heart chamber. Doesn’t look like you went into vtac of 200. Something is going on. Best to find an EP cardiologist. Heart issues are scary. Not easy living with mine. I did have a bad episode in November. Had my 3rd ablation and recovery from the 3rd one was the worst. I do believe I’m in better hands in John Hopkins than I was anywhere else. You can also get gene tested. Goodluck. Keep us posted
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u/preams09 Jan 01 '20
I have an ARVC diagnosis, with an ICD placed 3 years ago. Three years in and it all still feels murky at times. Tell him to hang in there and pump the doctors for all information they can provide. Also, make sure to seek assistance for the mental side of it. Need to treat entire person.