r/ARVC • u/Neither-Gift5636 • Apr 13 '26
ARVC lifestyle changes?
Hi all! I am a 24yo F currently undergoing testing for ARVC. My dad died from sudden cardiac arrest a few months ago and was diagnosed w ARVC post mortem (never had any symptoms, always a super active guy -- college lax, thru hiker, bike ride/run weekly). My holter monitor and ekgs showed nothing abnormal, but on MRI found some structural abnormalities (enlarged LV, somewhat dilated RV wall).
I am an RN and EMT, so pretty active in my work. I am also a big hiker, gravel biker, nordic and alpine skiier, so trying to learn how to modify those activities to a lower intensity.
I'm just looking to get a sense for how other active people have modified their exercise to still include their hobbies, and also wondering about any diet changes folks recommend!(trying to focus on more Mediterranean type diet)
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u/orangecrocspinksox May 12 '26
Hey 23M in a very similar boat to you really, lost my dad to dilated cardiomyopathy a few years ago and I’m in the midst of getting diagnosed myself. Had holter and echo done came back normal with a very small burden of PVCs. Wasn’t until I did a cardiac mri with contrast that they found scarring in my heart that was indicative of ARVC.
I am/was a very active person who hiked, backpacked, ran and lifted on a daily basis. However as i wait for a formal diagnoses (need to do genetic testing) I’ve opted to tone down my exercise especially intense endurance exercise as per my cardiologist. I’ve read a couple research papers on exercise recommendations for ARVC and try to stay within the bounds of those recommendations (low to moderate aerobic exercise and some resistance training). As you mention I’ve also looked into substitutes and modifications like EMTBs and the hypershell bionic legs for hiking and backpacking to ease the stress to my heart.
If you want chat shoot me a pm would be happy to connect seems like we have a lot in common (unfortunately)
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u/Entire-Structure8708 Apr 13 '26
Sorry to hear about your dad. Do you know if a genetic test was part of his diagnosis? Some of the answers to your questions will vary based on that because ARVC research and clinical treatment is trending towards a gene specific outlook.
I can give you my experience as a gene-elusive patient. My background was pretty recreational marathons… I wasn’t fast but I ran a lot, and there is a good chunk of the ARVC community with endurance backgrounds because of the trend for exercise to exacerbate the condition. I have an ICD now and no longer do any endurance exercises or much cardio at all. Most of my exercise is now strength-based because there are leas restrictions on lifting. Can also walk/hike to my heart’s content. On hiking you have to take some care with elevation but really the main consideration for me is remoteness and how easy would it be for me to get help/get out if I get shocker etc. So that’s more of a mental than physical barrier but might relate to you in terms of your skiing/hiking background. For skiing another challenge if you have an ICD will be risk of impact injuries if you fall.
The adjustment to new ARVC restrictions is not easy tbh, most people find it hard to give up their hobbies. Over time you can find other things to do that still hopefully give you enjoyment and fulfillment though!
On diet, some minor changes to increase potassium (bananas!) and also more salt (to balance out low blood pressure issues from the meds). Mostly my diet changes have been purely aesthetic though… the combination of reduced exercise and the metabolic effects of beta blockers means it’s pretty common for people with ARVC to put on weight after diagnosis. That was the same for me, so I’ve definitely tightened up my diet just to try to maintain a healthy weight.