New diagnosis today. Trying to figure what to do..

No warning signs and no symptoms The surgical team missed on the blood thinner prescription of the six fenestrated stents It was a clinical trial not approved, 25 percent of the patients lost a kidney

Thanks so much for all the info.
You really seem to have a good understanding of everything and have it under control .
I’m just starting to read about this and take it more seriously .
Besides all that you’ve been through with your surgery do you feel that it has prevented you from enjoying life as much as you would like?
I’m seriously worried that after having the surgery I’ll just be aged and very restricted.
Not sure about when to have the surgery yet.

Surgery has improved my life greatly. Not only am I here to talk to you and help you through this journey, but I’m far healthier now than I was 10 years ago. I’m in Daytona Beach right now with my 12 year-old daughter enjoying spring break. Without surgery, I would not be here. So, yeah, if I had it to do all over again I do it all over again. Put yourself in the hands of a great surgeon and you’re going to be fine. Peace.

I am 7 months out and feel 1000x better than I did a year ago. Plus, without surgery, I wouldn't have made it to this past Christmas, so there's that.

I really appreciate your sharing !
You have a beautiful daughter!
So happy for you both.
I’m going to give this a lot of thought 😉

Thanks for sharing !
What kind of symptoms were you having.
I’m short of breathe and can’t seem to get enough of rest.
So happy for you feeling better - where did you get your surgery?
How long did you research to find the right doctor?

If I squatted or bent down, I would nearly black even if I got up slowly. I would be insanely tired by 3pm every day. I also had angina when I was sitting. I had a persisting dry cough that was getting worse. I figured out I needed to get a 2nd opinion between Oct 2023 and Feb 1st of 2024. Following a 2nd Echo by my primary care doctor in May, it gave me grounds to go outside of Tallahassee to Mayo in Jacksonville. I met with the cardiologist on Jul 22nd. By Aug 6th I was getting an angiogram with intervention but it wasn't feasible and met with the Chair of Cardiovascular Surgery on Aug 12. I had a procedure to block the fistula from the bronchial artery to pulmonary artery via 12 platinum coils on Sep 6th which fixed the cough. Open heart surgery was done on Sep 10th to deal with the other 4 things which were mostly congenital and/or genetic.

I’m so sorry you had to experience this.
Are you doing well today?

I can’t even explain how helpful your explanation has been to me.
I’m in Hershey pa and the drs keep telling me that there are no symptoms.
I have symptoms that I have been trying to gauge the severity of the situation by.
And I hear the same “no symptom “ banter.
It really causes a sense of distrust which is why I’ve been so reluctant to do anything at all.
Hoping this finds you having a great day ☀️
This blog and all of your posts are a blessing!
Ty so much !

My symptoms weren't necessarily from the ascending aortic aneurysm or the root. When I went to Mayo for a 2nd opinion on the aorta. Four other things were found that could have been contributing to the symptoms. All were critical at the time including ultimately the aorta. I had issues with the RCA and the LAD due to a complex coronary fistula from the RCA and LAD to the pulmonary artery as well as the fistula I mentioned in the previous post. There was an aneurysm at the RCA where it met the aortic root. The LAD was chronically occluded due to reduced flow from the fistula as well as a function of aging. That could have been contributing to the angina along with the fistula. My point is, you could have something else going on and these things can interact synergistically. That's why a cardiologist and surgeon that specializes in these things is paramount. The local cardiologist was clueless and didn't find anything and was dismissive of the aortic aneurysm. The reason I initially went to my primary care DR in August of 2023 was serious symptoms. Since the cardiologist told me in January of 2024 that the LAD was fine etc., I figured it was the aortic aneurysm.

Thank you for asking. I am feeling so much better than this time last year. While I'm not feeling perfect at times, I don't feel like I am literally slowly dying.

My husband has an 4.9 aortic root aneurysm and moderate to severe aortic valve regurgitation. He doesn’t really have symptoms specific to the heart. He does have significant fatigue, but he is being treated with Androgen Deprivation Therapy for aggressive prostate cancer.
Two surgeons said he could have open heart surgery now to within 6 months. They both were concerned about heart damage leading to heart failure due to the severe regurgitation.( both felt it was more severe than moderate.)

He has an echo scheduled at the end of this month … we will see how stable his heart is then, and then make a decision about when to schedule .