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.

Profile picture for rlhix @rlhix

@leehorne

Who/where did you consult? Frankly, I think they are pushing the envelope because there can be issues other than age that can come into play. I can't see Mayo Clinic, Cleveland Clinic, Duke, etc. o.k. with that. The 5.5 thing is kind of out dated and usually considered o.k. mostly at low volume centers. The hospital and cardiologists in Tallahassee told me that in Jan 2024 and I ended up at Mayo in Jacksonville in July 22, 2024, unsuccessful angiogram with possible intervention on Aug 6, 2024, Interventional radiology procedure on Dec 4, 2024 to setup open heart surgery on Sep 10, 2024 that went for 14 and a half hours. The local guys missed a lot. I wouldn't have made it to Jan 2025. My mid ascending aorta was at 4.7cm and aortic root was at 4.8cm at that time. However, I had an aneurysm on the CONUS branch of the right coronary artery, complex coronary fistula from the RCA to pulmonary artery which also had connections from the LAD to the pulmonary artery and a 100% chronically blocked mid LAD. This was completely missed by the Tallahassee bunch and even if they had a clue, wouldn't have been able to do anything. The complex fistula was congenital but was undetected until I was 60 which could have killed me as a kid. It had reduced the flow to the LAD during activity which lead to it becoming occluded faster than natural.

Jump to this post

@leehorne Can you tell me what you mean exactly by this? "Frankly, I think they are pushing the envelope because there can be issues other than age that can come into play. I can't see Mayo Clinic, Cleveland Clinic, Duke, etc. o.k. with that. The 5.5 thing is kind of out dated and usually considered o.k. mostly at low volume centers." Are you saying that the removal should be done before the enlargement to 5.5?

That has been our conclusion as my husband's aneurysm is 4.9 and the surgery is coming up this coming Friday.

REPLY

Has anyone had depression with their descending aorta.
I have had 2 years of depression that comes and goes and I get really anxious at times. It started about the same time as my ascending aorta, but it is not big enough to have surgery on yet.

REPLY

Yes. My husband has and me to. Unfortunately he has Affib and CHF now
It is hard. Be positive and take care! Good news is his aneurysm has not grown.

REPLY

I had really tough sadness and anxiety following my open heart surgery to repair my dissected ascending aorta in 2015. It would be hard to explain other than to say that I felt an overwhelming sense of sadness. Sometimes they call it pump head because they believe that something related to the cardiac bypass machine that contributes to depression. I've also heard it referred to as ICU delirium. Either way, I think that you can have depression under the best of circumstances, but the stress of worrying about your aortic health can be a real contributing factor to it.

Here's what I can tell you: you're going to be OK and you've come to the right place for support. None of us know how long we've got. That said, the ability of the medical/surgical community to deal with aortic health is really amazing and you should feel good about that. I am sitting here talking to you almost 11 years after having suffered a catastrophic aortic dissection while on a business trip in California in 2015. Often times we tend to dwell on the traumatic events rather than focusing on the miracle of survival and the body and mind's incredible ability to rise up from that trauma. I am thankful everyday for the time I've had on this earth and I would not trade it for anything.

If you're feeling sad, depressed, lonely, or blue, you've done the right thing by coming here to talk about it. The next step is to reach out to your healthcare providers and your mental health professionals to get the support you need. Dealing with the fear of an aortic dissection is very real and it's something that's difficult for other people to relate to unless they have a tremendous amount of experience in this area. I do and that makes it easy for me to understand why you would feel anxious. All of that said, I'm glad that you're here and I'm glad that you reached out. Your next steps are to talk with your doctor. Peace.

PICTURE: Me, my 14-year old at 8th Grade Graduation last week, and my best friend and wife who saved my life through her loving kindness and endless support. I survived for them and they carried me.

REPLY
Profile picture for dew88 @dew88

Moonboy; Thin ice; great analogy! Eighteen months ago I was diagnosed with 4.2 ATAA and a Root aneurysm 4.5cm. I am 89 and up to that point was in pretty fair shape, gym 3-4 times a week etc. following a good health regimen. There are no cardiologists in my home town in AK. But we have a winter home in Tucson and have tried to make appointments with a major Clinic in Phoenix. After 90 days, I got a text saying that an opening existed for 1 hour which I didn't see until it went to someone else a few hours later. I then went to a Tucson Heart & Vascular medical clinic that suddenly said I needed a vascular surgeon specialist and their vascular department no longer offer that specific service. Now I know that my age on paper (w/o actually observing my physical condition in person) may cause some concern with some medical facilities. Has anyone else experienced this kind of apparent selectivity among older patients? Or am I just experiencing a phase of bad luck?

Jump to this post

@dew88 Dr. Downey, Thoracic surgeon with Mayo Phoenix assured me age was not a barrier and that he had performed an ascending thoracic aortic aneurysm repair on a 95 year old former female wrestler from Mexico which I found a bit surprising.

REPLY
Profile picture for Mary @marytabor

@leehorne Can you tell me what you mean exactly by this? "Frankly, I think they are pushing the envelope because there can be issues other than age that can come into play. I can't see Mayo Clinic, Cleveland Clinic, Duke, etc. o.k. with that. The 5.5 thing is kind of out dated and usually considered o.k. mostly at low volume centers." Are you saying that the removal should be done before the enlargement to 5.5?

That has been our conclusion as my husband's aneurysm is 4.9 and the surgery is coming up this coming Friday.

Jump to this post

@marytabor Just wondering the age of your husband and if he has any co-mormidities? Wishing him all the very best for a rapid recovery!

REPLY
Profile picture for aznative @aznative

@dew88 Dr. Downey, Thoracic surgeon with Mayo Phoenix assured me age was not a barrier and that he had performed an ascending thoracic aortic aneurysm repair on a 95 year old former female wrestler from Mexico which I found a bit surprising.

Jump to this post

@aznative A late great Aunt of mine who was in a retired Chief Nurse at a Boston -area VA facility had a successful AAA repair at age 88 at Brigham and Women's. Post operatively, she continued to live independently in her home on Cape Cod. In fact, just a week prior to her death at age 92 due to colon cancer, she drove herself to the beauty parlor to get her hair done.

REPLY
Profile picture for moonboy @moonboy

I had really tough sadness and anxiety following my open heart surgery to repair my dissected ascending aorta in 2015. It would be hard to explain other than to say that I felt an overwhelming sense of sadness. Sometimes they call it pump head because they believe that something related to the cardiac bypass machine that contributes to depression. I've also heard it referred to as ICU delirium. Either way, I think that you can have depression under the best of circumstances, but the stress of worrying about your aortic health can be a real contributing factor to it.

Here's what I can tell you: you're going to be OK and you've come to the right place for support. None of us know how long we've got. That said, the ability of the medical/surgical community to deal with aortic health is really amazing and you should feel good about that. I am sitting here talking to you almost 11 years after having suffered a catastrophic aortic dissection while on a business trip in California in 2015. Often times we tend to dwell on the traumatic events rather than focusing on the miracle of survival and the body and mind's incredible ability to rise up from that trauma. I am thankful everyday for the time I've had on this earth and I would not trade it for anything.

If you're feeling sad, depressed, lonely, or blue, you've done the right thing by coming here to talk about it. The next step is to reach out to your healthcare providers and your mental health professionals to get the support you need. Dealing with the fear of an aortic dissection is very real and it's something that's difficult for other people to relate to unless they have a tremendous amount of experience in this area. I do and that makes it easy for me to understand why you would feel anxious. All of that said, I'm glad that you're here and I'm glad that you reached out. Your next steps are to talk with your doctor. Peace.

PICTURE: Me, my 14-year old at 8th Grade Graduation last week, and my best friend and wife who saved my life through her loving kindness and endless support. I survived for them and they carried me.

Jump to this post

@moonboy Thanks so much for sharing your story & for posting this lovely photo! What you describe in terms of post operative delerium and/or depression is a very common & well studied phenomenon. Retired RN here- back in the day, we used to refer to delirium as "ICU psychosis". Much of this was due to the environment of care which was not conducive to rest, sleep & recovery, ie constant noise, lack of natural light, alarms, bright lights, treatments, etc. Fortunately, the old way of caring for critically ill patients has changed, but can still be improved. In terms of depression postoperatively, this is also very common for many conditions - there's a school of thought that it's PTSD- related, or for patients who've been on the heart/lung bypass machine, perhaps it's physiological in nature.

REPLY

So what I want to say is that I understand the whole idea of PTSD and ICU delirium, but I will tell you that the use of deep hypothermic complete circulatory arrest at the profound temperatures they put me at are life changing. The fact of the matter is that we are operating at the very distant margins of what it means to be alive and dead. Along with that comes some very life-changing phenomena. I did not come back the same person that went into surgery. I had 46 pints of transfused, blood, plasma, packed red blood cells and other blood products. I am not a particularly spiritual person, but I can tell you that the experience of undergoing this particular open heart surgery and being put into suspended animation changes you after you come back. I was in DHCA for 46 minutes according to my medical records, and I can tell you that it was an extraordinary experience. Coming back was the hardest thing I ever did. But I will say that I am happy for the second chance. I don’t know if I’ve done any better the second time around, but I certainly have tried. I do want to say to someone like you who is from the medical profession thank you. The nurses in my cardiac ICU at UCSD La Jolla saved my life. Peace.

REPLY
Profile picture for retiredrn @retiredrn

@marytabor Just wondering the age of your husband and if he has any co-mormidities? Wishing him all the very best for a rapid recovery!

Jump to this post

@retiredrn 77. No abnormalities except for aneurysm. Surgery was the19th. Recovery in progress in cardiac icu. All best.

REPLY
Please sign in or register to post a reply.