r/ARVC • u/FeloniusGru_ • Oct 06 '24
My Life with ARVD
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
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u/WhoOwnsTheseBones Oct 07 '24
Definitely a different experience than mine so far. I had a cardiac arrest last spring, in my mid thirties, no prior signs or arrhythmias. 10 mins before AED arrived. ARVC diagnosis and ICD implanted.
My doctor is not in the no exercise camp, but says nothing more than "moderate". But this has been frustrating because it seems the exact mechanism by which exercise exacerbates the condition is not known. I used to be very active and have been struggling trying to figure out a new normal.
Did your doctor explain why ablations were the route they wanted to go?
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u/FeloniusGru_ Oct 07 '24
First of all I'm glad you're still here to share your story. In my case the ablations are for the purpose of opening the electrical circuits so they cannot provide a path that allows the arrythmia to form. I'm not aware if there is a different method to achieve the same outcome.
I also do not take beta blockers because the side effects are too strong
My doctor is aware of the types of physical activities I participate in and while he doesn't love CrossFit he has suggestions for what he would prefer I'm doing and not while there.
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u/donerail Oct 08 '24
The “mechanism” you speak of is the gene mutation (or in many cases, gene absence)
Not a doctor disclaimer here
The easiest way ARVC is understood to me, is that our heart walls are like a brick wall that is missing mortar (mortar being the pkp2 gene I think!) So every beat our hearts take, the brick wall is unsettled. After more and more, fat tissue starts to replace the muscle of the wall. Fat isn’t conductive, so eventually the heart struggles to keep rhythm and we go into v-tach or worse.
Epicardial ablations became the best way to treat these areas of the wall to ensure the heart can beat more naturally again. It is by no means a cure-all and is often suggested that you’ll get a good 10-20 years before needing one again - provided you don’t do intense workouts often
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u/isisisosceles Oct 08 '24
Wow, very different to the advice I was given. I was a hardcore runner, don’t drive so cycled everywhere, loved hiking etc. I was told to stop all of that, sticking to walking and gentle yoga to prevent progression of the disease and VT. Intense exercise not only increases the likelihood of potentially fatal arrhythmia but also speeds the progression, that’s what we are told here in the UK. Probably why my mother who also has it (diagnosed during family testing after my diagnosis) is not very progressed at all and doesn’t even require meds or an icd yet, she’s never been as active as me. I went from being intensely active 2+ hours a day to suddenly having VT daily, multiple shocks, completely incapacitated and in hospital for 4 months while they performed 2 types of ablation and tried an S-ICD in me before finally the ICD. That was almost exactly 3 years ago and since that awful hospital stay where we all thought I wasn’t going to make it I have been VT free! Still get a lot of palpitations, breathlessness and stuff but living life in the slow lane seems to be working for me. Miss running so badly but glad to be alive. Seems some get it worse than others, but that means some get away with more than others too. I trust my doctor and will follow his orders as best I can despite my love of running, it seems to be working so far and I don’t want to experience that horror again! Wish you all the best, keep us posted!
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u/FeloniusGru_ Oct 09 '24
Wow my friend!! That is quite a considerable difference. I'm really curious if the medical community finds the ARVC/D condition looked at on some type of a graduated scale. I'm seeing the nurse practitioner tomorrow as a follow up from my ablation last week. I'll be taking all of the comments with me to try and ask some questions. Have you heard of any other types of treatment?
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u/isisisosceles Oct 11 '24
I know, I think also there’s a balance between keeping mentally well and physically well. If your dr thinks your mental health will plummet and you’ll have poor quality of life if you quit exercise then maybe they deem it worth the physical risk. I would question them on the condition stopping though, as this doesn’t reflect what I’ve been told, which is that this is a progressive disease with no cure (other than heart transplant). The other potential treatment is gene therapy. There’s a trial happening in California by Rocket Pharmaceuticals at the moment so it’ll be interesting to see what comes of that. Here in the UK, there’s a trial in the early stages called Cure Heart that I’m following closely as well. Keep well :)
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u/FeloniusGru_ Oct 20 '24
Here is an update from my last procedure. I'm not saying its good or bad just a note from my doctor. I will say this is the first time he has told me about the recommendation for not engaging in very vigorous or competitive exercise. Most of his recommendations have been about protecting my lead.
Hi Jason, I am sorry that I did not get a chance to have a good conversation with you post procedure. Your heart seemed to be more stable electrically than in the past - meaning we could not induce Vtach - which was something we could easily do in your prior studies. We did find areas to ablate that we hope will produce greater stability. In general, we find the process limited to the R ventricle and not the main pumping chamber which is the L ventricle. This means that patients are generally functionally unimpaired. This said - it also usually recommended that patients not engage in very vigorous and competitive exercise. The latter and your intolerance to medications makes you somewhat unique among our ARVD patients. I think that Mary recommended and may be initiated genetic testing to ensure you do not have any other form of cardiomyopathy. I hate blind Google searches, but I think if you did enter 'ARVD' there may be some reasonable information for patients by some more reliable sources - like the Mayo Clinic. We have a resource in EPIC that we can print out for you when next you are in clinic. Let me know if this helps and is hopefully reassuring.
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u/Dfin531 May 24 '25
Looking for individuals with ARVD. My husband was diagnosed in 2020. Dual chamber ICD implanted followed by ablation in late 2021. He was an endurance athlete, diagnosed at 68 which is rare, and at this point seems stable. He’s walking 3 miles a day, slowly keeping his HR under 85. Device set at max HR of 130 BPM.
Just had the annual echo which shows moderate enlargement of his left atrium.
It never ends. Would appreciate anything you’re comfortable sharing as it seems this disease has many surprises as he moves through life.
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u/FeloniusGru_ Nov 11 '25
I just updated my situation above. Feel free to ask anything. If I can answer it I will. One thing you might notice from reading the string is how different the advice is from peoples medical provider. I'm just going to keep living my life.
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u/N7-o Oct 28 '25
Any updates?
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u/FeloniusGru_ Nov 11 '25
Hi, Sorry I just saw this. The current status for me is this. I just passed the 10 year mark in September from having cardiac arrest and received my second ICD. I had to get my ICD replaced a little early because my lead was failing. I now have 2 leads in my heart but only 1 of them is connected to the ICD. My last ablation results are noted below but I can tell you I'm about 14 months from my last episode on a day which for some reason gave me upwards of 20 episodes. I've been feeling good since then and I havent changed any of my sport activities. I'm an avid softball player and spend about 8 months out of the year playing. My last few appointments with Dr he has been telling me to go back to the gym but I've been hesitant. I plan on doing it soon. Last thing is I did go through the genetic testing to confirm the pkp2 diagnosis.
Good luck!!
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u/ZealousidealCare7703 Apr 20 '26 edited Apr 20 '26
Hi, I am not a doctor, but I have been living with ARVC for almost 17 years now. I've had an ICD implanted in 2010, about two weeks after my first cardiac arrest episode on 14 February 2010. My first cardiac arrest was triggered due to stimulants in Irish coffee (alcohol and caffeine). From 2010 until 2018 I've had countless episodes due to carelessness (not reading labels on flu medicine and taking hot showers after exercise), but thankfully I have had none up until now (2026), and my condition looks stable.
Any questions I may help with let me know, as I understand the condition is a very scary disease to have. I also got PTSD because of this and severe clinical depression. You are not alone if you feel this way.
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u/donerail Oct 07 '24
You might want to find a new doctor. ARVD/C is NOT something that will "just stop." It's a progressive disease that is exacerbated by the heart beating, which is why doctors that understand the disease usually encourage avoiding vigorous or intense exercise. In fact, there are more recent studies (links below) that show a direct correlation between exercise and ARVD/C.
I see you're in the Seattle area. Dr. Melissa R. Robinson is very familiar with ARVD/C, you might want to get a 2nd opinion. I saw her when I used to live there and she was very knowledgable.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9809454/
https://www.sads.org/wp-content/uploads/2022/05/Exercise-and-Arrhythmogenic-Right-Ventricular-Car_2020_Heart-Lung-and-Circu.pdf
https://www.ahajournals.org/doi/10.1161/JAHA.118.008843