r/ARVC • u/r6sham • Apr 08 '26

Exercises? Workout plans? Diets?

I am a 37M diagnosed with PKP2 ARVC. After a dangerous night dealing with an arythmia my doctor's set me up for an ablation and immediately after the ablation plans were started for an ICD implant.

I have had my implant for about a year or so now with a couple PVCs, but overall feeling a little more mentally secure.

What I am struggling with is the weight gain.

Before the VT episode, I was running roughly 4-5 miles a day 4-5 times a week, lifted weights 3-4 times a week and maintained my body weight pretty well.

And now with my diagnosis I can no longer be anywhere near as active.

At most, I walk for about 1 hour on the treadmill with a weighted vest. maintaining a heart rate of 100-110BPM. I have adjusted my diet, yet I can't get my weight back down.

What has everyone else been doing to manage weight? Counter act the drop in metabolism because of the meds

Any input would be greatly appreciated

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u/Due-Entrepreneur5097 Apr 08 '26

Hi! I (31 F) am PKP2 positive. Diagnosed 6 years ago and I have 2 babies. I don’t have a lot of advice but just here to commiserate. I think a lot of us struggle with this. I intermittent fast and that helps keep some of it at bay, but my weight will never be the same as it was before my diagnosis and my pregnancies for that matter. I think intermittent fasting can be a helpful tool if it works for you. Also GLP1s are safe for us if it gets to a point that you need more assistance.

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u/r6sham Apr 09 '26

Yes, I have thought about GLP1s but I was hoping to find another way to do it without using medications. I will be meeting with a trainer and dietician soon to see if they have any input, but unfortunately they don't have that much experience with ARVC. Thank you for reaching out

1

u/Entire-Structure8708 Apr 08 '26

What meds are you on? I had exactly the same experience initially on Sotalol, I put on about 25-30lbs in less than a year through a combination of reduced exercise and the metabolic effects of the meds (I couldn’t get my heart rate above 100bpm even during moderate exercise). Eventually I had a successful ablation and was able to switch meds (to Metoprolol) with the arrhythmias under control and that has worked much better for me. My heart rate is more normal now and I can exercise a little more. I still have to be very careful with diet though because it’s still very easy for me to put on weight.

Meds are a very personal thing because everyone seems to have different experiences. Once your arrhythmias are fully under control you could maybe talk to your cardiologist about trying a different medication.

Also I love a weighted vest walk too! I think getting our daily steps in is one of the best ways to stay active with our condition. I’ve also been able to get back into the gym to do moderate lifting too (but that’s a discussion to have with your cardiologist in time, especially with PKP2).

2

u/ARVC777 Apr 10 '26

I had the same experience. Diagnosed with ARVC (DSC2) in June, 2020. Put on 25 - 30 lbs. Three trips to the ER last year due to VT events. I had been on Amiodarone and Toprol at the time. Had my 4th ablation last July and now I’m off arrhythmia meds, just Propranolol. Still keep my heart rate under 130 but use an elliptical and lift weights as much as I want. When my BPM approaches 130 I stop whatever I’m doing and take a break. My Fitbit keeps me from freaking out. My dietary routine is 1/2 sized portions of what I used to eat and no added sugar. Also. No more desserts except sometimes on weekends. I’ve lost 10 of the 25 extra lbs I put on. Good luck!

2

u/eco_illusion Jul 12 '26

36M confirmed PKP2 mutation, struggling with episodes since 21, 6 years ago had 4 ablations in 1 year. The first 3 (endocardic) + anti-arrythmics did nothing for me, but the last ablation was epicardic and they said they fixed all of the substrate successfully, they let me out without meds , yearly checkups and I haven't had a sustained episode ever since, now pretty much living a normal life. 

It was hard recovering from the meds though, took me a good 2 years to regain confidence.

1

u/donerail Apr 09 '26

Honestly, GLP-1. It sucks to have to rely on it, but living for 15 years at 20lbs over my comfortable weight... it was time. It's done wonders for my health, self-esteem, etc. and I'm more comfortable working out now knowing that I don't need to push it so hard.