Is anyone else not getting surgery?

Posted by donnawhite @donnawhite, Mar 5 11:04am

I am 77, woman, 5'3' I have a descending thoracic aneurysm measures 6.3 . I have an ascending thoracic aneurysm measure 5.4. I am not getting surgery. Is anyone else doing this and if yes, what symptoms are you experiencing? I have the chronic cough, back and chest pain, stomach pain, and very raspy voice.

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Profile picture for seasidesandy1 @seasidesandy1

It is upsetting that there are no support groups for individuals who do not want AAA surgery in my area.
Many unanswered questions for me:

How does one know when a rupture is occurring
How painful is it
How to reduce pain and be as comfortable as possible
What happens to the body during a rupture
Does one become unconscious immediately
How long does it take to die during a rupture if “Do not
resuscitate” is in effect
Is there a DNR form that pertains only for an aneurysm
rupture.

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I had a complete Type A-1 aortic dissection at age 50 in 2015. It was the most painful I have ever experienced. It felt like someone was peeling the skin off my back. You will know it. If you have a complete rupture, you will exsanguinate fairly quickly. I don't know what percentage of people die quickly vs. dissect slowly. Untreated, the mortality rate for an aortic dissection is 1% an hour. Peace.

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Profile picture for seasidesandy1 @seasidesandy1

It is upsetting that there are no support groups for individuals who do not want AAA surgery in my area.
Many unanswered questions for me:

How does one know when a rupture is occurring
How painful is it
How to reduce pain and be as comfortable as possible
What happens to the body during a rupture
Does one become unconscious immediately
How long does it take to die during a rupture if “Do not
resuscitate” is in effect
Is there a DNR form that pertains only for an aneurysm
rupture.

Jump to this post

@seasidesandy1

I'm so very sorry to hear about your situation.m and thabk you for your comment to my post. I've never had an aortic rupture but I have had a Type B dissection when I was 54, that went from my aortic arch down to the top of both legs. I spent a week in intensive care until I was stable enough to go home. They couldn't operate on me for 5 months. I wasn't strong enough or stable enough. I had 2 very long surgeries with long recoveries. One at 54 y.o. and the 2nd at 60 y.o. - just perfectly coinciding with the start of Covid! I'm 65 now and still have my original ascending aortic aneurysm that I was diagnosed with at 32 years old. Who would've thought?
It's my understanding that 90% of people who experience a ruptured aorta don't make it into surgery. Sixty to 75% don't make it to the hospital. For me, I don't really think it would be a bad way to meet the afterlife. There are many worse ways in my mind. Like you, quality of life is a priority for me. I've already lived longer than I thought I ever would. I was diagnosed with Marfan Syndrome at 24 years old and the life expectancy was roughly 42 years old, at the time.
I wish you peace of mind, joy of heart and tranquility of spirit.
I experience them daily in varying amounts and I'm content with whatever the future brings to my doorstep.
Take care.
Terry

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