New diagnosis of ascending aortic aneurysm and I’m terrified

Posted by mjm3 @mjm3, Aug 16 10:27pm

I received the diagnosis of a 4.1 CM ascending aortic aneurysm as an incidental finding after an angiogram was ordered to make sure I had no blockages due to an unexpected spike and blood pressure at work. I normally have low blood pressure so I was surprised when it was 189/111 and they took me to the hospital. that seem to come from acute stress at work, but I had a complete cardiac workout after finding a very low amount of troponin in my bloodstream 0.03. Anyway, the aneurysm was a complete shock and now I’m terrified that it’s going to burst at any time despite my cardiologist rather nonchalant approach. I asked if there’s anything I should be doing or not doing and she said don’t lift anything over 40 pounds . But no other instructions other than they’ll keep an eye on things. How do you get past feeling like your life is almost over. I’m 67 years old and in good health otherwise. I eat healthy, not overweight and thought based on my family longevity that I would live into my late 80s early 90s. Now I’m afraid I won’t make it till the end of the year which is probably ridiculous but this aneurysm has me totally freaked out. How do you all cope? And how do you get the fear so you can just enjoy life?

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

@mikeneverwired

I was diagnosed a little less than a year ago with an ascending aneurysm of 5.4cm and the doc recommended surgery. Yeah, it kind of freaked me out but the option of dropping dead due to a dissection freaked me out worse. I stayed in shape, limited heavy lifting, walked a lot and then had the surgery.

They found two aneurysms and fixed both. I felt pretty good post surgery except for the intense itching at the incision which I know means things are healing. It is now 6 months post surgery and I am back to walking, biking, hiking at altitude (12k'+) and basically doing whatever I did before the diagnosis. So don't freak out, take all this in stride, follow doctors' orders and get to the other side of this. There is plenty of life left to live and not a lot of jello in your future!

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What was the timeframe from when you were diagnosed to having surgery?

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@rphiller

What was the timeframe from when you were diagnosed to having surgery?

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I was diagnosed in November and started the 'process' pretty much immediately. They had to schedule a heart cath procedure late Dec (they wanted to get a better look at the heart) and then start on vitamins and get some Epo shots to boost my RBC (I have thalassemia), etc. The actual procedure was scheduled for Feb 28... so it took about 3 months for the whole process to play out.

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@mikeneverwired

I was diagnosed in November and started the 'process' pretty much immediately. They had to schedule a heart cath procedure late Dec (they wanted to get a better look at the heart) and then start on vitamins and get some Epo shots to boost my RBC (I have thalassemia), etc. The actual procedure was scheduled for Feb 28... so it took about 3 months for the whole process to play out.

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As far as anxiety or nerves, did they go away after the procedure? I'm newly diagnosed at 4.9 and my anxiety is killing me.

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@rphiller

As far as anxiety or nerves, did they go away after the procedure? I'm newly diagnosed at 4.9 and my anxiety is killing me.

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Was diagnosed 20 yrs ago also by accident and still here (84). Have it checked ever Years and so far so good. Take it one day at a time 😍

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The anxiety is overwhelming at first but eventually things settle down to a "new normal." I think cardiologists would be well-advised to take fear into consideration when they discuss aneurysms with their patients. This online support group is a huge help. Huge.

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@mikeneverwired

I was diagnosed a little less than a year ago with an ascending aneurysm of 5.4cm and the doc recommended surgery. Yeah, it kind of freaked me out but the option of dropping dead due to a dissection freaked me out worse. I stayed in shape, limited heavy lifting, walked a lot and then had the surgery.

They found two aneurysms and fixed both. I felt pretty good post surgery except for the intense itching at the incision which I know means things are healing. It is now 6 months post surgery and I am back to walking, biking, hiking at altitude (12k'+) and basically doing whatever I did before the diagnosis. So don't freak out, take all this in stride, follow doctors' orders and get to the other side of this. There is plenty of life left to live and not a lot of jello in your future!

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Thank you so much for posting your story and words of encouragement. I was just now reading about the surgery and all of the potential risks are mind-boggling. You seem to have such a wonderful outlook on the surgery . I’m wondering if they gave you any kind of mental preparation for the enormous task this ascending aortic aneurysm surgery. I’ve been reading about Heart lung bypass, the cutting open of the chest wall, intubation after the surgery… It all just seems overwhelming and terrifying. I would love to know what preparation you might’ve had ahead of the surgery. Congratulations on such a wonderful outcome. It was fantastic to hear you’re back to doing all of the things you could do before. This watchful waiting period is difficult for me.

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@mjm3

Thank you so much for posting your story and words of encouragement. I was just now reading about the surgery and all of the potential risks are mind-boggling. You seem to have such a wonderful outlook on the surgery . I’m wondering if they gave you any kind of mental preparation for the enormous task this ascending aortic aneurysm surgery. I’ve been reading about Heart lung bypass, the cutting open of the chest wall, intubation after the surgery… It all just seems overwhelming and terrifying. I would love to know what preparation you might’ve had ahead of the surgery. Congratulations on such a wonderful outcome. It was fantastic to hear you’re back to doing all of the things you could do before. This watchful waiting period is difficult for me.

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I looked at the surgery this way: If I didn't get the surgery, I was likely to drop dead at some indeterminate point in the future. That sounded like a bad proposition. With the surgery, I have a little more predictability in my life, so this was the right option for me (and probably for you).

Don't fret the surgery... you will sleep through the whole thing! Stay in shape as much as you can prior to surgery as that will help with your recovery... they told me to 'walk, walk, walk'... and I did.

To your question, they did not have any sort of psychological prep. Just maintain a positive outlook prior to surgery and know that the first few days post surgery will be tough... Follow the doc and nurses' orders and once home, things will slowly get better. There are no shortcuts for this kind of operation but these docs do it routinely and the overall risk is low. Allocate 6 months for the entire recovery process... You will do great!

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@nlg

Mine was a 4.8 cm aortic root aneurysm and it was "watched" for over a fourteen years. In the meantime, no one told me to avoid heavy lifting, grunting, and all that jazz. I went about my regular life. I was treated with beta blockers for over a decade for A-fib, so my BP remained in a good range. Imaging showed very slow progression of the size of the aneurysm. My cardiology team remained unconcerned. It was only after the valve began to fail that anyone mentioned surgery and the size of the aneurysm had crept to 5 . The surgery was not as bad as I had expected. The sternal wires are not that painful. One of the risks of both the aortic valve and graph is that you will need a pacemaker afterwards. I had the surgery in 2022 and the pacemaker in 23. I am 79 and doing well. My advice-- don't let it keep you up at night. Get a good team, trust them, and follow their advice. We live in America and have wonderful medical care available to us all!

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I am 97 years old but biologically 77 with a 7 mm aneurysm. My brain works perfectly. The surgeons at my hospital are willing to operate although they have never seen a patient my age. After 97 very good years I am going to tough it out and not go through the ordeal. I am signing up for hospice and watching my bp. Is my plan mistaken ?

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@roxbury2200

I am 97 years old but biologically 77 with a 7 mm aneurysm. My brain works perfectly. The surgeons at my hospital are willing to operate although they have never seen a patient my age. After 97 very good years I am going to tough it out and not go through the ordeal. I am signing up for hospice and watching my bp. Is my plan mistaken ?

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That should be 7. cm and not 7 mm !!

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I think your plan is great.

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