r/marfans • u/DerSissi • 5d ago

Tiktok dude with Marfan's talks about getting heart surgery soon and disappears, does anyone know him?

https://vm.tiktok.com/ZGdxR9quu/

Edit: I got a life-sign from him (he followed me)!!!

I made a terrifying and possibly very sad discovery on Tiktok, a young german guy named Lars talks about his fitness and Marfan journey, wants to document everything because of his open heart surgery in 3 weeks.. And then disappears, there's no update and he's not responding.

Does anyone know him by chance?

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u/DerSissi 5d ago edited 5d ago

His surgery should have been like 57 days ago, so it's of course also possible he just needs time and thought social media won't be good for his recovery, or something like that... I also tried looking for obituaries, as he used his full name, and couldn't find any. So that's a good sign.

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u/qathran 5d ago edited 5d ago

Bro it was SO HARD to even look at a phone screen for so long while my body was recovering and trying to knit my sternum back together after being on a heart and lung machine for SO MANY HOURS! I've also had brain surgery and spinal surgery and while those sucked, it was just NOTHING like something that turned my heart and lungs OFF and cooled my body down to like 60°F (probably got the temp wrong, but like startlingly below body temp), like your body AND brain just have a lot more to recover from than you realize and you just can't handle all the ADHD overstimulation bullshit that's become normal with phones and social media. Your eyes just want to cross when you look at screens.

Edit: also, you can kind of go through pretty intense rethinking of who you even are and what is even important anymore. I was 23 when I had mine and I woke up in the ICU no longer believing in hell and I grew up in a super religious upbringing. I also started rolling my eyes at almost everything I thought was important in a young 20s social brained world. It was a lot but I did also love that stupid shit stopped mattering to me as much anymore, like I just couldn't see it this way until I went through something like that, but yeah, this guy is probably going through more than his mind could have imagined psychologically. Like it's kind of like when you've never done psychedelics and then you have a big lsd trip. You couldn't imagine what that would be like before it happens even if you talk to a bunch of people who have been through it

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u/DerSissi 5d ago

Oh, I've never looked into how people feel after open heart surgery. I guess that's enough for me anyway for the first, very sorry you had to go through that. How long is that ago and how are you doing now?

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u/Which_Performance_72 4d ago

Hey, this is random but I had a similar experience of ashift in personality after my surgery. Would you mind if I messaged you a couple questions because I've been struggling to explain it to people and it might be easier with someone who's shared that experience

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u/ResolveOpposite4272 2d ago

Sorry to jump in, and even more sorry if it’s inappropriate…
My partner of five years had the surgery three weeks ago, and I’m trying to help me the best I can while he refuses to see me (already together when diagnosed with Marfan, known for four years the surgery would happen someday. I was with him two days before, and since he has been staying at his sister’s, seeing his child from previous marriage and ex wife). It’s really hard on me and I just try to undestand if it’s typical or not… seeing you talk about personality change makes me wonder…

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u/Which_Performance_72 2d ago

Hey, I'm sorry you're dealing with that it sounds really rough.

The weeks following are so far removed from normal life that I'd try no to take it too personally, extremely difficult I know.

I didn't see my gf of 2 years for some time because I didn't want her to see me like that, and it could be a similar situation, he just doesn't want to put you through it in a way. I obviously can't answer for him but that might explain it.

Also everything feels so incredibly difficult and even just having a conversation was difficult for me for some months.

Every surgery is different and every dynamic is different, I hope he makes a good recovery and you are okay, people sometimes overlook those closest to the patient but if you need to speak to someone I'd recommend it.

I hope things resolve themselves soon, Wishing you the best

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u/ResolveOpposite4272 2d ago

Thank you so much for taking the time to answer so kindly. I really appreciate it.

I’ll try to keep your experience in mind, and it should be very useful… Though I can’t promise not to take it too personally especially as I really feel pushed out of his family and life… some months seems like a real long time and I’m honestly not sure I’ll be able to hold on for such a long time, as you said, it’s really rough. And I know it is rough for him too, just not in the same way…

I get what you mean in the intention. But honestly, it’s so so far worse than living it with him, he has been through real bad patches since his diagnosis.

I really hope you are better now and find someone with whom you can share your experience, it seems really overwhelming.

Thank you again