Dilated aortic root: What's safe for us to do?

Posted by politelykooky @politelykooky, 1 day ago

I'm 50. My aneurysm measures at 4.5cm currently but we all know how unreliable the measurements are. That diagnosis has frozen my life with fear.
Both of my children are autistic, I'm their primary caregiver, and when/if I'm gone - they're alone. I've tried to explain this to surgeons many times over and they're not willing to work on me until it reaches 5cm despite the fact that I have Ehlers-Danlos Syndrome. They're afraid to work on me due to my lymphedema and other conditions. They're not willing to consider a less invasive option or a preventive approach.
I don't know what to do with myself anymore. I'm so afraid of dying that I'm afraid to live. Travel, even leaving the house, means bringing someone along in case I drop because I can't put the kids in the situation of caring for me if my heart dissects. Can anyone else relate? Any suggestions or words of wisdom? (Thank you for reading this if you got this far.)

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JT1959 | @jefftalley | 15 hours ago

There is a lot that is safe for us to do, but we need to show some extra care. I am 67 years old, 4.7 cm aneurysm at the root, no other conditions. I assume you are on a beta blocker as I am. I quit softball due to the sprinting, and no more heavy weight lifting due to the spike in blood pressure. But I still mow the lawn, jog, play with the dog (as well as my wife), and live my life. I figure if I take my meds and use good judgment I should be in good shape, and that has so far shown to be true. The aneurysm is a pain in the butt but doesn’t have to stop one from living an essentially normal life, with normal life expectancy.

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