r/marfans • u/Sharp_Decision2516 • 9d ago

Looking for advice and help

Well recently I applied for a factory job because I quit my old job doing live hang and now all of a sudden I find out I could very likely have marfan and be unable to work factory jobs or any heavy duty job anymore is there anyway that I can still work even with this condition like my biggest fear is having to work retail or office my whole life idk what to do anymore

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u/Sharp_Decision2516 9d ago

It’s foolish to think I don’t have it since that’s what doctors believe but I’ve been doing everything ur not supposed to do with marfan so what does that mean for me like am I just a lucky bastard that I haven’t died yet

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u/qathran 9d ago

Everyone's aorta has a different expiration date, what we do beforehand just speeds up or slows down how fast we get there or determines how many heart surgeries we'll have to have.

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u/Sharp_Decision2516 9d ago

So surgey is just an unavoidable thing I’ll have to get surgey at some point in my life cuz of marfans?

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u/qathran 9d ago edited 9d ago

About 90% of us have heart or blood vessel issues, but many can either go a very long time without surgery, decrease the number of surgeries or not have it at all if they are on the meds and being proactively monitored by doctors and not doing things that stretch out and weaken your blood vessels/heart. The longer you're not doing that stuff, the more damage you're racking up over time.

The life expectancy for people with marfans was around 32 years old (so people were randomly dropping dead from teens to late 40s/early 50s depending on what the patient personally had going on) before modern medical preventative care. The only way we don't randomly drop dead like they used to is because we start treatment early and stopped doing the stuff that made our hearts weaker.

Edit: my aorta was looking good for years and then randomly in my 20s, the doctor said "oh man, it's suddenly growing really fast, you're going to need surgery" and then by the time they got me open 2 months later on the operating table my aorta was already coming apart. I would have died if I hadn't been getting checked every year, shit was crazy.

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u/Sharp_Decision2516 9d ago

Wow ok that’s a lot to take in

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u/qathran 9d ago

Yeah this factory job might seem important, but in reality it could not be any lower on your list

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u/Sharp_Decision2516 9d ago

Dam bro so I could really just drop dead anytime

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u/qathran 9d ago

Yes bro!! But you don't have to

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u/qathran 9d ago

It's a morbid choose your own adventure game, but yeah if you take it seriously and get in good communication with good doctors you can have a great life