Aortic Aneurysms – Introduce yourself & meet others

Welcome to the Aortic Aneurysms group on Mayo Clinic Connect.

An aortic aneurysm is a bulge in the wall of the aorta. The aorta begins deep in the heart as it emerges from the powerful left ventricle, gently arching over the heart, descending into the chest, and finally into the abdomen. Some aortic aneurysms can be harmless; others can lead to catastrophic problems. I invite you to follow this group and connect with others, share experiences, exchange useful information, and learn about aortic aneurysms.

Get started rby clicking the +FOLLOW icon on the group page here: https://connect.mayoclinic.org/group/aneurysms/

There are some great conversations going on right now that I think you’ll like. Grab a cup of tea, or beverage of your choice, and lets chat. Why not start by introducing yourself?

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

@ginnycake

Please share here.

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It's been a while since I've been on this forum. My June 5th surgery was for the repair and replacement of most of the ascending aorta due to an enlarged Aortic Aneurysm. While it didn't show up on any imaging, they also did a valve replacement at the aortic root. I hope to be starting cardiac rehab any day now.
We live in the greater Seattle area, and the surgery was performed at the University of Washington Medical Center by Dr. Christopher Burke and his amazing cardiac surgery team. The operation took almost six hours. I don't remember much about the ICU, but the nursing staff on the Telemetry floor where I spent 10 days, was amazing, brilliant, compassionate, and always looking for ways to make me more comfortable. I owe them a personal and sincere thank you.
I was extremely anxious for weeks prior to the surgery, over the top day of. While there was some post-surgical discomfort, it was nothing like I had imagined. My only advice is to try to relax, have confidence in your surgical team and hospital staff, and lean into coming out the other end confident that your life has been saved and it was worth every second of anxiety and fear.
Quick recommendation: Get started making arrangements for cardiac rehabilitation as soon as you know your discharge date. These facilities seem to be rather full and extremely busy in our area.

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@martinkennot

Hi there
I don't know what to do here. I am in a few categories so let me know if I should join one or four.
Can I post a link to my website? I made a site that explains in detail what happened to me.
I am almost 10 months on from a trip to the emergency of a major hospital, a 10 hours open heart surgery, short stay in ICU, a replacement of about 4 or 5 different things, and a grease and oil change while I was there.
I had type-A aortic dissection, and still have type-B dissection through my entire aorta (heart to legs), a busted aortic valve, busted aortic root, a 55mm aneurysm, hermiarch replacement, aortic valve replacement, aneurysm removal, aortic root repair,... and they also found a partridge in a pear tree.
I was/am in average health, 55y, no obesity, no smoking, healthy cholesterol, no diabetes, no recreational drugs, no pharmacy drugs, very infrequent alcohol consumption, no high BP, heart rate normal, and around 160lbs - everything as vanilla as it can get. And all of that is not by choice either - I am just a normal line-straight human. Then one night at 1am, pains in the chest. Three days later I woke up in the ICU. No one explained anything before, or after the OHS, except to choose what type of valve.
I have no advice to anyone about "preparing for surgery" or "what to do about your (body part)..." because I was very much straight into surgery from the street. But I can give some comments on my post-surgery care and hospital stay - and comment on what I shold have done before all that because now I know.

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You are a hero! What an ordeal and you kept your sense of humor. By all means share your experience and be part of this group.

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Hi there
I don't know what to do here. I am in a few categories so let me know if I should join one or four.
Can I post a link to my website? I made a site that explains in detail what happened to me.
I am almost 10 months on from a trip to the emergency of a major hospital, a 10 hours open heart surgery, short stay in ICU, a replacement of about 4 or 5 different things, and a grease and oil change while I was there.
I had type-A aortic dissection, and still have type-B dissection through my entire aorta (heart to legs), a busted aortic valve, busted aortic root, a 55mm aneurysm, hermiarch replacement, aortic valve replacement, aneurysm removal, aortic root repair,... and they also found a partridge in a pear tree.
I was/am in average health, 55y, no obesity, no smoking, healthy cholesterol, no diabetes, no recreational drugs, no pharmacy drugs, very infrequent alcohol consumption, no high BP, heart rate normal, and around 160lbs - everything as vanilla as it can get. And all of that is not by choice either - I am just a normal line-straight human. Then one night at 1am, pains in the chest. Three days later I woke up in the ICU. No one explained anything before, or after the OHS, except to choose what type of valve.
I have no advice to anyone about "preparing for surgery" or "what to do about your (body part)..." because I was very much straight into surgery from the street. But I can give some comments on my post-surgery care and hospital stay - and comment on what I shold have done before all that because now I know.

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Thanks for good wishes - am seeing a vascular surgeon next week so will have a better understanding of the situation. All the very best to you too.

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@jennifer28

Just diagnosed with AA - told dr that both my parents and brother had AA but she did not mention it possibly being genetic. Interesting, thank you. Sorry, can't offer any suggestions re pain. Am waiting to see specialist.

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For seven years, I was told I had an aortic aneurysm. Was monitored each year. Remains stable. When I saw a new doctor, he didn’t think I have one, but still having it monitored. Best wishes to you.

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@jennylpz140

thanks to this group .Sharing and reading others going through the same health issues has been so helpful. Just knowing im not alone,i have AAA its small 2.4 i keeping my appointments for tracking it but i felt really alone so down and depressed because they said i have an aortic regurgitation and doctors are afraid because other illness
Lupus SLE and thats a monster of its own > my pcp suggested going to mayo clinic for a new procedure ( Tavr) smaller procedure versus open heart surgery to deal with mayo clinic i will be having my first visit in aug 2024

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You're going to be fine. You're all over it and that's all that matters. Listen to your docs and take lots of walks.

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@jennylpz140

thanks to this group .Sharing and reading others going through the same health issues has been so helpful. Just knowing im not alone,i have AAA its small 2.4 i keeping my appointments for tracking it but i felt really alone so down and depressed because they said i have an aortic regurgitation and doctors are afraid because other illness
Lupus SLE and thats a monster of its own > my pcp suggested going to mayo clinic for a new procedure ( Tavr) smaller procedure versus open heart surgery to deal with mayo clinic i will be having my first visit in aug 2024

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@jennylpz140 Hi Jenny, Good luck with your visit to Mayo. I am assuming you are going to the hospital in Jacksonville (?). I live in St. Pete, I am from the area, I lived in Tampa after college and just moved back over to St.Pete within the last few years. Quick question for you, who is your cardiologist and do you like him/her? I am newly diagnosed and have an appointment at Mount Sinai in Miami on Thursday to see a cardiologist (they have an aorta center there). I was unsuccessful in finding an available cardio in town and really had a hard time navigating who to see. Your help would be very much appreciated.
Since I am local, please reach out if you need any support. It is life-changing to be in this situation, but you will be in really great hands at Mayo. I am not a candidate for the less invasive type of surgery since I have an ascending aortic aneurysm, but the fact that you are a candidate for it is awesome. I have been a little down myself since the diagnosis, but I am trying hard every day to keep a normal schedule, get to the gym (it really helps with my mood/anxiety), and find some time to meditate and reduce my stress. It has helped tremendously. Just take one day or moment at a time. If you are doing everything you can in the moment, that's all you can do. Sending you love and peace, message me if you need support. xoxo ~Sabrina

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thanks to this group .Sharing and reading others going through the same health issues has been so helpful. Just knowing im not alone,i have AAA its small 2.4 i keeping my appointments for tracking it but i felt really alone so down and depressed because they said i have an aortic regurgitation and doctors are afraid because other illness
Lupus SLE and thats a monster of its own > my pcp suggested going to mayo clinic for a new procedure ( Tavr) smaller procedure versus open heart surgery to deal with mayo clinic i will be having my first visit in aug 2024

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@ginnycake

Based on everything I have read, the trick to travel is as long as you’re in a pressurized plane (and most commercial jets are), don’t hoist your luggage, don’t carry luggage over 30 pounds, and don’t do anything that would make you grunt or hold your breath; you should be okay. Holding breath while lifting something heavy is a natural reaction and it spikes the blood pressure. It’s called the Valsalva maneuver. it raises your blood pressure sometimes as much as 200/100 or higher (in the moment). Do everything you can to keep your blood pressure down and your stress levels down. I would talk with your cardiologist or cardiovascular surgeon regarding any other concerns you have about travel. sometimes high elevations raise blood pressure and heart rate. I’ve been told to keep my heart rate below 130 when exercising and 70 at rest. The lower the better. Some folks go on beta blockers to make sure it stays low. Because of the mechanical nature of 60 beats a minute ( plus) against the weakness in the aorta the lowest heart rate you can have is best. also, if you’re traveling, you might want to get a piece of medical jewelry that says you have an ascending aortic aneurysm because that way if something did happen, they wouldn’t treat you for a heart attack and maybe Realize too late, that your aneurysm was the issue……What a cool monitoring system you have. I like that. We don’t have anything like that in Hawaii ( that I know of).

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Hi, my wife is very diligent in making sure I don't lift anything too heavy. My B/P is typically 115/65 in the morning. My only real exercise is walking and. at a vigorous pace my heart rate may get into the 90s. I am taking 25mg of Metoprolol Tartrate twice a day.

I just got the results of blood tests that my cardiologist ordered and all the numbers are good. My concern about travel was that my Doctor may have concerns but that may not be an issue.

The hospital here has about 350 people in the monitoring program.

Medical jewelry is a good idea. I'll look into that. Thanks

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