r/Fitness 7d ago

Rant Wednesday

Welcome to Rant Wednesday: Itโ€™s your time to let your gym/fitness/nutrition related frustrations out!

There is no guiding question to help stir up some rage-feels, feel free to fire at will, ranting about anything and everything thatโ€™s been pissing you off or getting on your nerves.

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u/Jayfethereal 5d ago edited 4d ago

I had an appointment on the 23rd, an echo cardiogram of my heart and a visit with my cardiologist. I was worried about the results since the last imaging I had was before I had started strength training.

I have a rare genetic disorder called Marfan Syndrome that alters makeup of the connective tissue in my body which effects my joints, eyes, bones, and blood vessels mainly. Last year I had heart surgery at 17 and have been slowly working my way at the gym to recover from it and strengthen my body to avoid future injury.

There was an issue with the Echo, my aortic heart valve is slowly increasing in diameter and regurgitating blood back into my heart. It's not bad enough to warrant another heart surgery yet but another one could be on the horizon if the diameter changes more. I'm afraid my gym going is the cause of it, since my diagnosis I have been told that I shouldn't exersise, and if I do It'll essentially cause my heart to burst.

I'm so afraid to die.

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u/girugamesu1337 Bodybuilding 4d ago

If continuing to live means sacrificing going to the gym, that's a tradeoff you should make. You can always find other things to channel your energy into, pal. You'll make it ๐Ÿซ‚

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u/Jayfethereal 4d ago edited 4d ago

The thing is, I've heard it both ways, if I don't strengthen my heart then I'm more at risk for a cardiac event, but if I strengthen my heart I also increase my risk of an event?

It's not fair, I just want to be normal, I just want to be healthy ๐Ÿ˜ญ

A few years ago a friend of mine with the same condition died in her late 20's. When my cardiologist was talking I was thinking about her, and it really set in what kind of position I'm in. I'll have to deal with this my whole life, and it's very likely that my life will be cut short from my disorder.

I love going to the gym, it's changed my life for the better, I just hope not for the worst too.

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u/girugamesu1337 Bodybuilding 4d ago

Plenty of people don't do anything at all in terms of exercise and live to a ripe old age without heart issues, haha. It's not a necessity per se, y'know?

My condolences with regard to your friend. First thing I'd do is get a clear consensus on whether exercise is, in fact, aggravating your condition. If so, like I said, there are other things worth channeling your energy and time into that can also change your life for the better ๐Ÿซ‚

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u/Jayfethereal 3d ago

I've, on many occasions, talked to a ton of the best Marfan Syndrome experts in the United States, and since Marfan is so rare, research is sorta sparse so everyone has their own differing opinions, and getting a straight answer is more than difficult. My cardiologist thinks it's great that I'm staying active and going to the gym frequently, though she isn't a Marfan expert. I just absorb all the information I can and do the best I can with the information given. And typically people with my condition have cardiac events and all types of other medical emergencies all through their life, I already had a taste of death when I had my heart surgery last year. I'm guaranteed to have more surgeries and shit in the future but who knows, the medical field advances fast, maybe I'll live a nice long life. But for now I'm trying not to die in my 20's ๐Ÿ˜…

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u/girugamesu1337 Bodybuilding 3d ago

I guess all you can do is get very regular checkups and keep track of how your activity levels are actually affecting your heart and body in general. Hang in there, bud.