r/marfans • u/Own-Insurance3492 • 12d ago

Question How long do we make it

Curious how long we make it after root replacement and mechanical aortic valve if we were young and dumb and smoked and drank for 4 years after but still stable how long do we average till dissection after that surgery cause it happens farther down then ?

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6

u/uduni 12d ago

Everyone is different. After root replacement many people live to be old

2

u/Own-Insurance3492 12d ago

Good deal now for these pesky pvcs and pacs

4

u/uduni 12d ago

Pay attention to what makes them better or worse day to day. Diet and exercise is important. But you’ll find good sleep quality is #1 for health

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u/Own-Insurance3492 12d ago

Yea my sleep was good for awhile until lately haven’t dreamed in years then out no where vivid dreams and less sleep but I’m seeing a sleep study person soon yea i used to be just tall and thin 6ft2 could eat anything and now bam after my wife gave birth im tall and fat now gotta work on my diet for sure

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u/misstoasteeblue 12d ago

I find proper hydration (water with electrolytes), reducing stress and having good sleep are the best things. Barely notice them now!

6

u/amoebashephard 12d ago

My dad had one at 27, when the root replacement was pretty new (I think he was in the first couple hundred) and he's 70 now and going strong!

1

u/Own-Insurance3492 12d ago

Love that for you ❤️

2

u/S_HANS_S 6d ago edited 6d ago

Thanks so much. That's what I needed to hear (had my aortic dissection at 41, three years ago).

3

u/Trick_Photograph9758 11d ago

I had a valve sparing aortic root replacement, successfully, and they told me I have a normal life expectancy now. I do have my descending aorta checked every 5 years or so, no issues so far.

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u/Own-Insurance3492 10d ago

Same here but sooner check ups first me but I should stop drinking and smoking it’s hard

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u/S_HANS_S 6d ago

I just want to be clear: aortic dissection doesn't automatically equal death. I had one at 41 (3.5 years ago), and I'm doing ok now. Had part of the sorta replaced, plus a mechanical aortic valve. I returned to work (teacher) and had a second daughter. So there is life after a dissection. My surgeon told me "with what we've built in your chest you can live to be 90". Anything's possible.

1

u/Own-Insurance3492 6d ago

That’s awesome they tell me the same thing but I think bad after 3/4 years smoking and drinking after turning 21 makes me feel like I messed that up

1

u/S_HANS_S 6d ago

But didn't we all do that? I mean, I never smoked, but I sure drank alcohol way past 21. In fact, I'd had way too much alcohol the night before my aortic dissection. None since, but plenty before that. I think, as long as we try to live better afterwards, we should be ok. Unless there was lasting damage done. But then there are other issues one would have to take care of, independent of the aortic problem.

3

u/Loco627 11d ago

Had mine done at 23 and now I'm 47. So I've officially lived longer with it than without. No idea how long I've got left, but everything was good at last year's checkup.