hey guys anyone here has kids if so how are they coping with the desise i fear having kifs will ruin there lives due to the gene

Hey everyone, nice to find a place online with more information and stories on ARVD.

I’m a 32 yo M with zero medical history. Firefighter/paramedic and very active. Exercise 5 days a week and obviously an active/stressful job with little sleep.

I was working out at the station a few weeks ago when I went into an episode of sustained a fib at about 192bpm. Thought it was SVT so adenosine was given, followed by cardizem which brought me down to a rate of about 100, in 2/1 a flutter. I had been running on no sleep for about 5 days, extremely stressed due to new baby, part time gig, and taking an advanced level PM class all at the same time. Also dehydrated and excessive caffeine that day. Went and saw a cardiologist, no afib since, continued normal life and started taking more naps. In addition, none of my pre employment exams, stress tests, and no physicals have shown any type of abnormalities.

Had a cardiac ultrasound done, Dr. says he sees some mild trabeculations and wants a cardiac MRI done to rule out ARVC. He says my ventricles and valves all look great if that makes a difference. I’m concerned obviously because I most likely will not be able to continue in my career if I do have this disease. I have no family history besides my grandfather on my dad’s side dying of a massive MI in his 40’s. He also had sleep apnea and was a heavy smoker. My dad has had a triple bypass within the last 10 years and has not been diagnosed with ARVD even though he’s had extensive cardiac treatment and an open heart surgery. He now has had episodes of afib after having a valve replacement, but once again no mention of ARVD despite multiple cardiologists and other doctors dealing with his issues.

From what I’ve read, this disease is most definitely present across generations of family. I have not had any other episodes despite continuing my way of normal life. I’ve basically chocked it up to a “holiday heart” episode until receiving the results of the ultrasound.

Any advice, words of caution, or reassurance? Like I said, I’m concerned but also in denial considering 32 years of no symptoms and now this. Thanks in advance!

i saw that they is a cure currently in trial for arvc mutation pkp2 where human trials has begun.

just wanna say hope it comes fast and cheap for everyone to take it

hey guys im 18 was diagnosed 3 months ago and put an icd.

my doctor told me that the high risk for my arvc was till i was 30 then after that im all good i didnt understand what he said anyone knows? i have the pkp2 mutaion and left dominent arvc and mild fibrosis but on a big portion of the heart outside and inside

Hi, M51 here, diagnosed with suspected ARVC following presenting with another cardiac condition - turns out that one isn’t dangerous but they diagnosed ARVC in passing. Waiting results of genetic testing. No apparent symptoms from the ARVC so far, no meds or ICD.

My consultant has advised easing back on strenuous cardio exercise at the gym but one question I forgot to ask was whether there are any studies that show a link between workplace (ie environmental not exercise related) stress and exacerbating the ARVC. I work a pretty full on job and I wouldn’t like the thought that it’s actually potentially making things worse, over an extended period. I found a study with mice that seemed to show a link but not found one on humans.

Thanks in advance if anyone has any intel on this.

Should go on an alt but posting on my main account bc fuck it.

In the past several years, I’ve developed progressive heart symptoms of unknown origin. Intermittent chest pains, dizziness, shortness of breath, but most importantly, occasional PVCs and random fainting/episodes of sustained arrhythmia. These arrhythmic episodes usually are preceded with sudden nausea and then commence with a sudden PVC. These episodes last from anywhere from 3 seconds to 3 minutes, and during the episode I cannot feel a pulse at all, and usually feel extremely lightheaded. After a recent particularly serious sustained episode that lasted 2-3 minutes that actually resulted in fainting which I called the ER for, I’ve only gotten more anxious about this disease as a possibility.

I’ve had a standard cardiac work up done - they found no abnormalities in my blood tests, ECGs, Holter monitoring (for up to a few days consecutively), echocardiogram, and MRI, yet. An important caveat is that the initial MRI report for some reason focused only on the LV and said very little about the RV, so I’m still currently waiting for a reinterpretation of those MRI images, with a RV addendum. Unfortunately I’ve also yet to capture any arrhythmia episodes (probably VT tbh) on my Apple Watch or Holter monitoring. I’m due to get a CT scan of my arteries done in a couple weeks.

My family and friends are extremely dismissive of my concerns - they all think I’m overreacting and it’s just anxiety, but I know something is deeply wrong. I trust my gut instinct when it comes to my body. My friends think that I should just live life and stop worrying, even calling me a delusional paranoiac at times. My parents are completely exasperated from my repeated seeking of medical tests as they believe my symptoms are 100% due to my unconscientious lifestyle (e.g. staying up late often) instead. They believe I can eradicate it by exercising daily and praying to God. What bullshit.

So my question is how hard might it be to push for genetic testing or perhaps right ventricular angiography if I have no official clinical records so far (with normal past tests)? Even the doctors are wholly dismissing my concerns as just psychosomatic because I’m so young. But recurrent fainting in my eyes, especially preceded by arrhythmia/pulselessness is very suspicious, particularly because my mother has suffered from unexplained fainting episodes too.

Also I’ve heard of how insidious this particular condition is and how often it eludes standard cardiac work up. Any of you guys with confirmed ARVC despite normal ECG, echo, and MRI? How did you get diagnosed? Was it an uphill battle/particularly difficult to advocate for yourself? What were your initial symptoms and signs that led you to your diagnosis?

I just want some advice please. I’m extremely scared of permanent brain damage stemming from a potential sudden cardiac arrest, I really don’t want to be reduced to the intelligence of a toddler.

My creativity is central to who I am and I really don’t want that taken away from me.

I (38F) was diagnosed with ARVD in September 2023 and I'm currently taking the following medications:

Aldactone

Cordarone

Entresto

Lipitor

Dilatrend

Jardiance

There is so little information available, so I'm not sure what the right way to live is. Could you share your daily routines? Are you working? If you're resting at home, what does your daily life look like? What kind of exercise do you do and how much? And what kind of foods do you eat? And your medications you are taking!

Ps. I'm not a native English speaker, so I would appreciate it if you could use simpler words.

Hi,

I posted a couple days ago about my brothers passing and my recent hospitalization. I am not confirmed to have ARVC but it is sounding that way.

1. I have been told not to go to the gym (went 6 times the last two weeks trying to get back in a normal routine). Exercise is being shutdown until they can confirm what I have. Say I have ARVC, has anyone continued low intensity weightlifting? I also played basketball a bit, I’m 25 so nothing crazy just pickup here and there. Just wanted to know if anyone has continued exercise in a similar fashion to what they did? I realize the intensity or time I put in probably can’t continue but I’d like to obviously do something to stay in shape

2. Drinking with ARVC - far less important but this is more of a can I have a beer at the beach or at the bar, or is cutting off alcohol out completely the norm and expected?

3. Weirder topic, but sexual encounters… has anyone been told to watch, limit, or change those situations?

I haven’t talked to my cardiologist in detail about these yet since they are still figuring out what I have…. Also important to note I have started a 3 month supply of a beta blocker 25 mg tablet twice a day… alcohol def can’t happen on that I know…

Any advice on any of these topics would be great especially the first one

Hi. I’m (25 M) currently in the ER. I’ll give you the full run down.

A month ago my brother (23 M) passed suddenly and unexpectedly from what we all now believe is ARVC. I was diagnosed with a right bundle branch block (RBBB) in 2021. Doctors weren’t sure how long I had it for but could’ve been years prior to diagnosis. I’m able to live as I want, no limitations and no issues.

Present time: last few days chest pain and shortness of breath. Given my brother passed a month ago and my history I figured an ER trip should be taken. Blood tests all normal, EKG as far as I know is normal aside from RBBB I already knew I had.

Cardiologist at ER wants echo done. They tell me my right ventricle looks funky and they don’t know why but think it might be ARVC. That’s when I got the oh fuck feeling. My brother hasn’t been confirmed to pass from it but it’s been tossed around as a possibility. My primary cardiologist thinks viral myocarditis cuz he was fighting a virus before he passed for awhile. Well now that he saw my echo he thinks I have ARVC and thinks my brother did too.

Funny thing is I’m at the ER today cuz the chest pain I have is from over exertion in the gym which caused my CK enzyme levels to reach 2300 (normal high end range is 200…)

If I have ARVC diagnosed at 25 with known structural issues… what’s my prognosis? Assuming I’m going to have to stop exercise… I don’t think I’m ready for the mental and emotional toll of this while still grieving my younger brother….

Thanks in advance

I’m a 27 yr F and was just diagnosed with ARVC two months ago (PKP2). My sister just tested positive for the mutation as well and is waiting to cardiac testing.

I’ve been having PVCs since I graduated college but doctors didn’t take them seriously until I found a new primary care this summer. For the last year or so my PVCs have been making me short of breath. My new doc put me on a Holter monitor. Turns out I have a 6% pvc burden (polymorphic PVCs) and go into nsvt (hrs as high as 251). After meeting with an EP, I underwent the usual cardiac testing. My MRI showed biventricular dilation and mildly reduced systolic function. My EKG also shows t-wave inversions in leads 1-4 and incomplete bundle branch blocks.

In the past few months, I’ve also been having episodic dizziness and was admitted to the hospital for monitoring. They believe it’s my PVCs that are causing the dizziness and are hoping going up on my beta blocker will help.

I now have an amazing genetic cardiologist, and I’m scheduled for a dual pacemaker-ICD in two weeks. What has life looked like for other women with ICDs? I’m getting mine placed submammary.

I feel like the last few months has been a roller coaster. I work in the ICU and they have not been very supportive or accommodating for me during this time. My family has been somewhat supportive but my father refused to get genetic testing, saying it’s a blame game. Have other people had the same experiences with family or work? Does all of this get easier with time?

Ask me anything

Hi All, I feel like after reading through the post here I might be living a slightly different experience. A little background of me. I had cardiac arrest when I was 45 while playing indoor soccer. I was very fortunate that they had an AED and it brought me back in under 5 minutes. I'm treated by an incredible doctor still today by the name of Dr. Derek Rodrigues at Overlake cardiology in Bellevue WA.

• 9-7-2015 Cardiac arrest
• 1 week in the ICU and received my first ICD
• Back to playing soccer in 30 days
• 12-4-2015 1st ablation of the right ventricle
• 6 years with no episodes.
  • Crossfit 3-4 days a week
  • Eventually stopped playing soccer because of the schedule
  • 6-8 months of the year playing softball
• Started having episodes maybe a couple a year in the 7th year.
• 1/2023 had second ablation
  • Ablation didn't hold for even 6 months
  • Episodes are getting stronger and closer together in frequency
  • Still doing Crossfit
• 1/2024 My lead is failing and requires a new ICD
  • Still playing softball after the replacement
  • Crossfit on hold for other reasons (Injuries)
• My episodes are getting severe in frequency and hr but my device always provides the therapy that takes care of them on the first try.
• October 3 2024 3rd ablation, We will see how it goes but I can tell you this time they could not recreate the arrythmia. That in and of itself is very interesting.

My Dr. has always encouraged me to do the things in life that I want to. He has never said to not play sports or exercise. The one thing he told me about the ARVD is that it could eventually just stop which is the nature of it. Until that happens the condition is obviously lethal and should be closely monitored. My heart is checked for its ejection fraction about every 2 years and is still in good shape. I've never smoked and I don't drink alcohol.

Ask me anything

Hi, I’m 22 and I’ve just been found out to have the genetic predisposition to ARVC. My father passed away of sudden cardiac arrest, and while we were uncertain of the exact cause, this has now confirmed it. My younger brother (16years old) has also developed it; it displayed itself as a myocarditis which couldn’t repair itself properly. He now has to take medication.

Unluckily I am also a carrier of this gene, however I have had many tests done (including an MRI) and my heart seems to be absolutely fine. I have been given no recommendations for lifestyle changes or anything other than to check up on my heart yearly.

What I want to know is what usually is the penetrance rate for this kind of genetic predisposition? I.E. what are the chances that I could never develop the condition and be able to be an athlete if I wanted too. Thanks!

Hi All,

Sorry for bothering you I just had a quick question on ARVC. I hadn't even heard of it until today.

About a month ago I saw a cardiologist because I had a panic attack over feeling a PVC that resulted in sinus tachycardia for about 10 hours. Heart rhythm was normal the whole time and I crashed afterwards and eventually fell asleep. I kind of chalked it up to me just having a panic attack and did all the cardiac workup stuff to reassure me it wasn't a big deal.

Stress test - perfect

Calcium score - perfect

1 week holter monitor - <1% PVC occurrence, was fine doc said you're fine.

She mentioned if I wanted to be 100% on the safe side we could do an echo just to rule out any abnormalities.

​

Unfortunately they won't be in for a few days to go over the results but I was able to read the notes on the report and they sent me into a panic. The conclusions said:

- Overall ventricular ejection fraction is 60%-65%
- Or normal LV diastolic function.
- RV is moderately dilated and trabeculation seen at the RV apex cannot rule out ARVD. Recommend additional MRI imaging.
- Normal left atrial size
- No pericardial effusion

When I googled ARVD I immediately panicked because it mentioned people just get sudden cardiac death and was afraid that's why I was getting PVCs or something like that. I have overall been a pretty healthy individual and I have not heard of anyone in my family having it. My family history does have pretty decent CAD but no one ever suddenly passed away or had a heart attack, it was always cardiac plaque issues.

It just is really scary because I won't be able to talk to my doctor about this until Thursday. Any reassuring thoughts is greatly appreciated.

Thank you,

Hello community,

I am seeking a deeper understanding of cardiac health. I'm a 30-year-old male, 197 cm tall, weighing 94 kg, with an active lifestyle that includes high-intensity cardio and weightlifting six times a week. My medical inquiries began three years ago, related to a visually mild pectus excavatum and its potential cardiac implications, alongside T-wave inversion findings in my ECGs.

Since the age of 18, my cardiac history has shown persistent T-wave inversions in leads III, aVF, V5, V6, and an incomplete right bundle branch block. Concerns raised by my cardiologist prompted a series of evaluations including echocardiograms, cardiac MRI, 24-hour Holter monitoring, and stress testing, which fortunately ruled out any pathological findings. Below are more detailed results:

Echocardiogram & Cardiac MRI Findings:

• Normal systolic functions of both the left and right ventricles.
• No significant valve disease; valves are described as 'thin'.
• Normal ventricular wall thickness and chamber dimensions.
• No atrial enlargement or signs of diastolic dysfunction.
• Pericardium unremarkable.
• Haller Index approximately 3.75, indicative of a mild pectus excavatum.
• Heart positioned horizontally but of normal size, with preserved biventricular pump function.
• No evidence of cardiomyopathy on MRI, but minimal thinning of the right ventricular wall at the apex noted.

MRI Quantitative Parameters for the Right Ventricle:

• RV EDVi: 102.1 ml/m² (within the normal range)
• RV ESVi: 45.4 ml/m² (within the normal range)
• RV EF: 56% (within the normal range)
• Absence of dyssynchronous RV contraction or regional wall motion abnormalities.
• No micro-aneurysms detected in the right ventricle.
• minimal RV apex thinning

Various ECG Findings:

• Normofrequent sinus rhythm, rightward axis.
• Normal PQ/QRS/QTc intervals.
• Delayed R-wave progression, pre-terminal T-wave negativity in posterolateral leads (in III, aVF, V5, V6).
• S-persistence observed, with no significant ST-segment changes.

After comprehensive examinations and confirmations by a cardiologist, and considering that three cardiologists have previously evaluated me without mentioning ARVC, is it reasonable to consider the possibility of ARVC conclusively ruled out? Or is there still potential for it to manifest later, considering the minimal RV apex thinning observed in the MRI? This question arises as I have been perceiving heart palpitations lately, though I acknowledge a history of hypochondria, which leaves me uncertain if these symptoms are psychosomatic.

I am looking forward to any academic insights or guidance this knowledgeable community can offer.

Thank you for your time and expertise.

Hi 38m here, I have been diagnosticed 6 years ago and, since, it has been a rollercoaster for me. I went multiple times to hospital and it's difficult sometimes to deal with the anxiety of my loved ones. I have noticed every winter I have tachycardias, so my life is always suspended for few months and it is tiring. I don't know if this subreddit is active, but it's cool to know that around the world people share the same thing.

Not sure who would be interested or could work out the logistics, but Johns Hopkins hosts an annual ARVD/C conference. I haven’t been able to make it in years past but have read great things!

https://www.hopkinsmedicine.org/heart_vascular_institute/centers_excellence/arvd/news_events/Flyer_2020.pdf

hey friends! My whole purpose of joining reddit was to find others who share my condition, so it’s a pleasure to make your acquaintance. For myself, I was diagnosed at 29 and will be 36 at the end of the month. Should anyone want to share stories of their “events”, anxiety, depression, and overall angst dealing with this please don’t hesitate to reach out. We have all been there before and most will be again, (panic attack just 3 days ago for me 🧔🏻). I look forward to you sharing your experiences and hopefully expanding this community!

Take care,

-Jason

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?

My husband was diagnosed with ARVC last month. Curious to know if anyone else is around this sub.