I have a 4.8 cm ascending aorta aneurysm

Posted by pconkin1 @pconkin1, Jan 26 11:10am

I just found this forum and I'm glad I can share with people who are experiencing the same thing. Any guidance on how to live a full life while dealing with the watch and wait approach?

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

I recently had a heart cath that measured mine at 4.3. My cardiologist is sending me to another heart doctor for a second opinion. Because at my age, 75, he thinks I need my aortic valve replaced sooner than later on in life. My aortic is regurigating, back across the inlet valve which does not have any damage but he says it could eventually cause damage. There is no stenosis. Has anyone had aoritc valve replacement?

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I will say you need to pace yourself and mitigate risk. That is different for everyone. The important part is to minimize the risk of dissection but I also had to get affairs in order just in case too.

What that looked like for me as I was waiting for my surgery once it was big enough was monitoring my heart rate when biking to keep it below 120 and no fast spikes, no heavy weight lifting above 20 lbs, lots of walking, etc. Got my estate in order just incase something happened. Changed my diet. Talk to a therapist.

But if none of this rings true for you, it is understand what your risk is and how to mitigate it to your needs and feelings. I had a large morning of the lost of my athletic ability and now 4 months after my surgery I am trying to rebuilt that.

So what are you most worried about while waiting and seeing the AAA?

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Profile picture for pittsburghdad @pittsburghdad

I am in the same situation you, @pconkin1 and have been for a couple of years. For many people, knowing that they have aneurysm can be mentally debilitating because they feel like they have a ticking time bomb. For me, knowing the statistics on dissection rates (i.e., that the likelihood of a dissection if you are below 5.0 is less than 1%) is a comfort, especially when coupled with annual screenings and doing the right things in terms of medication, diet and exercise mentioned above.

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@pittsburghdad Thanks for all the support on this site. You're right, the month after my diagnosis was tough. The "why me", the fear of dissction and depression wouldn't seem to go away. Time passed and it become a fact of life, and I am more comfortable with it now (although I do have my moments). I plan to obtain a second opinion with the Stanford Aortic Disease Center just for clarification on a few things-my cardiologist said this is common but I'm not sure I believe him -he was very low key about it-maybe bedside manner. It's reassuring to know I'm not alone in this, and I really appreciate the support.

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Profile picture for bignelie @bignelie

I will say you need to pace yourself and mitigate risk. That is different for everyone. The important part is to minimize the risk of dissection but I also had to get affairs in order just in case too.

What that looked like for me as I was waiting for my surgery once it was big enough was monitoring my heart rate when biking to keep it below 120 and no fast spikes, no heavy weight lifting above 20 lbs, lots of walking, etc. Got my estate in order just incase something happened. Changed my diet. Talk to a therapist.

But if none of this rings true for you, it is understand what your risk is and how to mitigate it to your needs and feelings. I had a large morning of the lost of my athletic ability and now 4 months after my surgery I am trying to rebuilt that.

So what are you most worried about while waiting and seeing the AAA?

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@bignelie My biggest worry is dissection-my blood pressure is under control but not to the new levels I have read about. My cardiologist is ordering a full echo for my heart to get a better perspective. I think I read too much about this because now I'm doubting my cardiologist because he's not ordering a Gated Ct. I want to be my own advocate, but I don't want to alienate my physicican so I'm getting a second opinion. Glad to hear you're getting back in the saddle after the surgery. Thanks!

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Profile picture for pconkin1 @pconkin1

@bignelie My biggest worry is dissection-my blood pressure is under control but not to the new levels I have read about. My cardiologist is ordering a full echo for my heart to get a better perspective. I think I read too much about this because now I'm doubting my cardiologist because he's not ordering a Gated Ct. I want to be my own advocate, but I don't want to alienate my physicican so I'm getting a second opinion. Glad to hear you're getting back in the saddle after the surgery. Thanks!

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@pconkin1 Stanford Aortic Disease Center was great and it where I had my surgery and cardiology care so can say they did a great job in diagnoses and eventually surgery and post care. Also they have a great cafeteria at the 500 building and can highly recommend for a good meal.

As with any disease, it is not a one size fits all so give yourself grace to wonder what is right or best for you. When in the learning phase, which I think you are in, I took a lot of time to get a baseline between all doctors I felt good with. Every person did offer their best knowledge on what they knew but I had to work up to the experts and even then I had to sit with what they were telling me.

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Profile picture for pconkin1 @pconkin1

@pittsburghdad Thanks for all the support on this site. You're right, the month after my diagnosis was tough. The "why me", the fear of dissction and depression wouldn't seem to go away. Time passed and it become a fact of life, and I am more comfortable with it now (although I do have my moments). I plan to obtain a second opinion with the Stanford Aortic Disease Center just for clarification on a few things-my cardiologist said this is common but I'm not sure I believe him -he was very low key about it-maybe bedside manner. It's reassuring to know I'm not alone in this, and I really appreciate the support.

Jump to this post

@pconkin1
You might check out the "Virtual Second Opinion" from Cleveland Clinic.

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I too just found this and I have a 4.3 ascending aortic aneurysm.

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