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.

@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!

Jump to this post

Does Medicare cover the costs?

REPLY
@jdsguam

I'm a 69 yr old and for 8 years now, I'm being treated for permanent AFIB and Heart Failure. Last week, I'm told I have a 4.5cm TAA, following a CT Scan. I live on the very Remote Tiny Island of Guam. There are no Heart Surgeons on island. I was doing pretty good with my other issues; but, this TAA has really taken a toll on my mental health. I try to brisk walk up to an hour, 3 times a week, I take my meds and watch my diet, etc; but, I can't get this "ticking time bomb" or "Hour Glass Running Out" image out of my head. I feel like I walking around with a fragile water balloon in my chest that could rupture at any time. If something were to happen, there is no surgical team on standby. I would have to be stabilized somehow, and eventually flown off-island to Hawaii (about 8 hrs away). Seems highly unlikely.

Jump to this post

Oh, dear. This is concerning. No wonder you're feeling anxious. Is there any way you could get to Hawaii to get checked out? So long as you can get CT scans where you are, you can be monitored. Maybe you could contact a surgeon in Hawaii and establish some sort of relationship before actually going there. You could get your test results sent to the surgeon, who might be able to give you more information and some idea of what you should do. Good luck to you. As I understand it, 4.5 is below the threshold for surgery.

REPLY

Good news is that they now know about it and will keep an eye on you. 2nd is your body is amazing and your aorta is tough as hell. Watch your BP and don't strain trying to lift heavy weights etc.

Other good news is your a ways away from needing surgery and you may not even need it if it's slow growing.

Now for reality check... No one knows the future. You could get hit by a bus tomorrow (not recommended). Most of us never saw this coming and bam - emergency life saving surgery.

It's never out of my head because I'm an anxiety ridden basket case but hopefully you can manage to put it in perspective and not worry until it becomes a bigger problem. Best of luck and keep those birthdays coming!!

REPLY
@jdsguam

I'm a 69 yr old and for 8 years now, I'm being treated for permanent AFIB and Heart Failure. Last week, I'm told I have a 4.5cm TAA, following a CT Scan. I live on the very Remote Tiny Island of Guam. There are no Heart Surgeons on island. I was doing pretty good with my other issues; but, this TAA has really taken a toll on my mental health. I try to brisk walk up to an hour, 3 times a week, I take my meds and watch my diet, etc; but, I can't get this "ticking time bomb" or "Hour Glass Running Out" image out of my head. I feel like I walking around with a fragile water balloon in my chest that could rupture at any time. If something were to happen, there is no surgical team on standby. I would have to be stabilized somehow, and eventually flown off-island to Hawaii (about 8 hrs away). Seems highly unlikely.

Jump to this post

I totally relate to your feeling like a ticking time bomb and like a water balloon( I’ve actually used that analogy) ready to burst inside my chest. I just got my second opinion cardiologist visit today and he said to just go live my life but don’t let my heart rate get above 113 or my blood pressure above 120/80. He also said no heavy exercise and no amusement park rides, etc. but traveling is fine as long as I don’t try to lift heavy baggage. I find it fascinating that he had a whole list of dues and don’ts when my first cardiologist said no limitations and then when I push further said well don’t lift anything over 40 pounds. They are both bored certified with many years experience and highly rated. It’s amazing how different cardiologist can have two different responses. I thought I would feel better after seeing this doctor but now I’m anxious just waiting for the six month mark to have it rechecked. I guess if it doesn’t grow then I can rest a little bit easier, but I feel like the goalpost moves and the ticking time bomb is for real. hang in there. At least we do have a support group here that’s extremely helpful.

REPLY

Nice to know I'm not the only one. I'm not completely freaking out; but, this issue is now constantly in the back of my mind 24/7. And knowing this is a progressive problem doesn't help. I suppose I'll eventually get used to it, though I don't know how.
Hang in there as well and thank you for sharing.

REPLY
@jdsguam

Nice to know I'm not the only one. I'm not completely freaking out; but, this issue is now constantly in the back of my mind 24/7. And knowing this is a progressive problem doesn't help. I suppose I'll eventually get used to it, though I don't know how.
Hang in there as well and thank you for sharing.

Jump to this post

This condition certainly does put things in a different perspective. It's scary certainly but it's also an opportunity to really pare life down to the important things and people, think about how to manage the rest of your life, and be grateful for modern medicine.

REPLY

This is a fairly small aneurysm. It may never grow. An aneurysm of 4.3 was discovered incidentally on a CT scan for ny husband in 2007 it is now 2024 - his aneurysm is 4.8. It has not grown at all since discovered and noted in Jan 2021 by a new physician (previous one retired) he is measured only once a yesr; in 2021, it was three times a year to see if it was progressive. Yours may not be progressive also. I would like to add that between 2007 and 2021, he lifted incredibly heavy tbings overhrad and did many things that caused it to increase.
A PET scan to assess the strength and identify any issues in the walls of your aortic might be useful.

REPLY

After two years since the initial discovery of my aortic aneurysm of 4.5 cm, a second CT-scan this past July revealed it has grown a few millimeters. The doctor at the CT-scan hospital facility deemed it was at 5.0 cm now. I got second and third opinions from well-known thoracic surgeons here in Arizona and they both stated 4.7 and possibly 4.9. Close enough to 5 cm for me! I am worried too. The last surgeon said (who I have selected) we'll watch it another six months. However, I have a treadmill stress test coming up on Sept. 30th. The surgeon said if there are any other heart issues that are revealed (like coronary artery and valve issues), I might as well elect surgery asap and fix everything. I've been mulling that over for a week now. Not freaking out but my anxiety about it has increased. I would never have known about this if it wasn't for my younger brother dying from a sudden aortic dissection two years ago. Both my sister and I discovered we had thoracic aortic aneurysms after that family disaster. Speaking of family, our father, an uncle, and a cousin -- all on my dad's side -- have had serious heart issues. It has a genetic component and although we don't have any of the the 70+ known genetic markers, they're are more out there waiting to be discovered. My sister's is less severe than mine at 4.4. I am soon to be 72 and she is 70. My brother was only 59.

This truly is a silent killer along with high blood pressure.

REPLY

I am sorry to hear about your brother. I survived a complete dissection in 2015 at 50 years old. If I had known then what I know now, I would elect for surgery 100 times out of 100. The odds of surviving a sudden complete dissection are abysmal. My unknown, sudden and unplanned dissection was a personal, medical, and financial disaster. Be sure to join the Ritter Aortic Study at the University of Texas - Houston. They will gather your DNA as well as any willing family members to help understand what genetic predispositions there are. I would not wait for surgery. It is always better to have planned surgery: first thing in the morning, all the docs and nurses ready to go, all the supplies at hand, plenty of blood product, your financial affairs in order, your family properly briefed, in a great cardiac surgical center, and most of all--with a clear a plan for exactly what's wrong and how to fix it. It's the difference between filling up with gasoline before you set out into the desert vs. just hoping to find a gas station that may never appear. Again, I am sorry to hear about your brother. Peace.

REPLY
@moonboy

I am sorry to hear about your brother. I survived a complete dissection in 2015 at 50 years old. If I had known then what I know now, I would elect for surgery 100 times out of 100. The odds of surviving a sudden complete dissection are abysmal. My unknown, sudden and unplanned dissection was a personal, medical, and financial disaster. Be sure to join the Ritter Aortic Study at the University of Texas - Houston. They will gather your DNA as well as any willing family members to help understand what genetic predispositions there are. I would not wait for surgery. It is always better to have planned surgery: first thing in the morning, all the docs and nurses ready to go, all the supplies at hand, plenty of blood product, your financial affairs in order, your family properly briefed, in a great cardiac surgical center, and most of all--with a clear a plan for exactly what's wrong and how to fix it. It's the difference between filling up with gasoline before you set out into the desert vs. just hoping to find a gas station that may never appear. Again, I am sorry to hear about your brother. Peace.

Jump to this post

I'm 70 years old and the last remaining member of my immediate family. My Mom & Dad, 3 brothers and 1 sister have already left this earth and I have no idea what their medical history was. No DNA was ever taken and since I live overseas, the conversation was never brought up.

REPLY
Please sign in or register to post a reply.