Newly diagnosed and/or living with ascending aortic aneurysm…anxiety

My son died suddenly 1.5 years ago on his 50th birthday with ruptured aeortic dissection. He had untreated high BP because he didn’t “have time” to go to Dr. Take the medication! It’s a deadly condition and not much time once it ruptures😢

Just to share my experience. I found out 2 years ago when it was at 4 cm during a routine heart ultrasound. I was extremely concerned when I found out about it and the potential consequences and I immediately visited a major university hospital heart specialists out of state where they did a full scan of the aorta chest to pelvis. I now send them my scans for review and also have a local heart specialist at my local hospital heart unit monitor my condition. As of December at 4.2 cm. Next scan end of May.
Specialists advise:
- keep blood pressure normal, heart rate under 120, no straining when lifting and no lifting over 100 lb. At this point, at least annual scans. No more road cycling up steep hills for me. Doing walking instead.
- surgery at 5 to 5.5 cm. Takes about 6 hours, valve is also inspected and if needed replaced.
- There is always a possibility of a tear but was told if I get sudden sharp pain in the chest to immediately rush to my local hospital whose heart unit can operate or send me to a larger hospital via helicopter.

Everyone is different but close monitoring by a specialist and a plan to know where to go if/when surgery is needed is important, from when I am told.

I begin by saying that I'm relaying my experience and the following is my opinion--nothing more. I had moved into semi retirement (65, I'm now 66) and while overweight (222 at the time, now 208 but shooting for 190) and borderline high cholesteral. I was active with outside activities literally to my physical limit each day with no symptoms. A regular trip to my family doctor showed an issue on ultrasound. Referral to first a cat scan and subsequently a heart Dr. showed an ascending aortic aneurysm @ 4.1. Similar to other stories here, the Drs. didn't seem to exhibit much concern other than, restrict my activities or you could rupture and die immediately. Don't do anything, have a nice day and see you in six months. I was devastated and frightened. I immediately drafted my will, wrote "in case" letters to my kids and decided to seek a second opinion. Curiously with Cleveland Clinic, I was told in November that a certain Dr. was "the best". I watched some of his videos, called to make an appointment, left a message. Much more detail which I won't go into here but NEVER any follow up from them at all and of course its now April. To your point though, my observation after study and many other appointments:
1) lose weight/stop eating fatty foods/sugar/alcohol and eat more "Mediterranean". 2) walk as often as you can only to the point where you feel comfortable and can carry on a conversation 3) try to avoid both longer strenuous exercise or ones that even short term put pressure on your heart/blood 4) monitor your blood pressure and do what is necessary to keep it 120/80 or below. 5) no smoking at all. In other words, do what is within your power to minimize your risk. Your doctor is not going to bless or sanction your whims because of liability--if they tell you it's ok to lift heavy weights and you do and suffer consequences, they are liable! So, do what you can, don't do what you feel you should not do and that's literally all you can do! Keep monitoring and enjoy life within the parameters you now live under and don't let anxiety or worry either contribute to the problem or ruin whatever time you have left.

Wow! I mean that is truly an insensitive Cardiologist. If that happened to me I would walk out the door and head back to the surgeon at the trauma center for a referral to someone who will take it seriously and is experienced with aortic aneurysms. I mean, for goodness sake it is a tear!

I would need my PCP’s referral to go anywhere else and I’ll check my portal notes because I don't remember his name. I advised my PCP over a week ago and he hasn’t responded at all. Usually one of his nurses would contact me back but that hasn’t happened. He’s another doctor that works in a clinic and he’s a nice guy but he’s aloof too.

I have a regular cardiovascular doctor but he has 8 offices and it’s tough to get Al hold of.

Oh gosh, I'm so sorry. That's just awful. I don't know how you do it. My oldest brother died at 39 years old (unrelated to aneurysm) and my Mother was never the same again.

My Father died of a second AA, because he disliked the doctors so much that once he got cleared after his first surgery, he never went back for checkups. Ever. 15 years later, the second one got him. My plan is to be smarter.

So very sorry again for your loss

Thank you, Bill, for your insights, extra time to respond and breathing recommendations to lower blood pressure🌺

Luckily I am in a city with excellent medical and surgical care for aortic aneurysms and don't need to travel for care. It makes it easier for me to get checked every 6 months 😁.

A couple more things I remembered that you might find helpful.

My cardiac surgeon sent me for genetic testing to see if my aneurysm was inherited as it affects type of care and standard for when to do surgery.

You may want to keep up with the latest guidelines for care. There were new guidelines that came out last Fall that make 5cm the new recommendation for surgery. https://www.jacc.org/doi/10.1016/j.jacc.2022.10.001?_ga=2.203056277.584368302.1681477286-927612621.1681477286

I have had a 4cm fusiform aneurysm of the ascending aorta for 5 years with no change.

Thank you hoping my 4.2 will remain stable too🤗