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.

@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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@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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Just found out yesterday TAA 4.4 cm and will be monitoring..
Appreciate all the good information as I am still in shock..
Just started low dose beta blocker and already on 2.5 lisinopril for bp.. Doc said to get off the lisinopril if the bp goes to low…
Good to hear your stories….

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@kkohl

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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Having survived the same in 2015, I agree with absolutely everything you’ve said. Your doctors want what’s best for you and the ICU people are there to save your life. I cannot say enough good things UCSD La Jolla and it’s heart care center in San Diego. Make sure that you go back and visit them a year out five years out, 10 years out. Nothing brings them greater joy than knowing that they added to your life and saved you.

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@lawless

Just found out yesterday TAA 4.4 cm and will be monitoring..
Appreciate all the good information as I am still in shock..
Just started low dose beta blocker and already on 2.5 lisinopril for bp.. Doc said to get off the lisinopril if the bp goes to low…
Good to hear your stories….

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You’re safe and you’re going to be OK. Your doctors are on top of this and you are on top of it. That’s what matters. You know you have an issue and you know you have a great team behind you that will help you solve it. You are ahead of 99% of other patients who have no idea that they have this condition until the aneurysm bursts, and then it’s too late. It’s scary, but it’s going to be OK and the fact that you are aware of it and ready, willing, and able to do something about it means that you’re gonna be a survivor with all the rest of us. There is life after an aortic dissection. I have a wonderful life and I am wonderfully healthy. I am much healthier than I was before. It happened in 2015, even though I did not know why I didn’t feel so well. An aneurysm in aorta changes the how hard your heart has to work to circulate blood and affects the way the blood flows through your body. It’s bad for your heart and shortens your life. So doing a Repair, while initially painful following surgery, is going to make you feel like a new person because now your heart will be working correctly. Your surgeons will also have a chance to repair or replace your aortic valve in the event that is compromised or damaged. You’re going to be fine. I’ve been alive and well for nine years following emergency surgery to replace my dissected order in 2015. I survived this whole time so I could help give you good information and bring you peace. Peace.

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@moonboy

You’re safe and you’re going to be OK. Your doctors are on top of this and you are on top of it. That’s what matters. You know you have an issue and you know you have a great team behind you that will help you solve it. You are ahead of 99% of other patients who have no idea that they have this condition until the aneurysm bursts, and then it’s too late. It’s scary, but it’s going to be OK and the fact that you are aware of it and ready, willing, and able to do something about it means that you’re gonna be a survivor with all the rest of us. There is life after an aortic dissection. I have a wonderful life and I am wonderfully healthy. I am much healthier than I was before. It happened in 2015, even though I did not know why I didn’t feel so well. An aneurysm in aorta changes the how hard your heart has to work to circulate blood and affects the way the blood flows through your body. It’s bad for your heart and shortens your life. So doing a Repair, while initially painful following surgery, is going to make you feel like a new person because now your heart will be working correctly. Your surgeons will also have a chance to repair or replace your aortic valve in the event that is compromised or damaged. You’re going to be fine. I’ve been alive and well for nine years following emergency surgery to replace my dissected order in 2015. I survived this whole time so I could help give you good information and bring you peace. Peace.

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Thank you so much.. can I still do things now..?
I’m reading many things about not straining to hard..
Things around the house..?
Thanks for the positive comments…
Kevin

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@lawless

Thank you so much.. can I still do things now..?
I’m reading many things about not straining to hard..
Things around the house..?
Thanks for the positive comments…
Kevin

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No power lifting. No planking. Keep your blood pressure low. Cut out sugar altogether and reduce salt. Take your BP Meds as directed. Walks. No running. Stay within 30 minutes of a cardiac ICU. If you feel chest pain (tearing pain) call 911. Post-surgery I golf, walk, play with dogs, litigate in federal court. Thankful for every single day. No running or weightlifting for me. Use a cart and take it easy. Learn to relax. You’re going to be fine. I had 42 minutes between the start of my dissection and being cracked open. I never had time to fret. Don’t fret. You know you have an issue and you’re taking care of yourself. Peace.

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@moonboy

Having survived the same in 2015, I agree with absolutely everything you’ve said. Your doctors want what’s best for you and the ICU people are there to save your life. I cannot say enough good things UCSD La Jolla and it’s heart care center in San Diego. Make sure that you go back and visit them a year out five years out, 10 years out. Nothing brings them greater joy than knowing that they added to your life and saved you.

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Seconded. I make it a point to follow up at every opportunity. I am sure they added my card to their wall of thank you cards. I know "you saved my life" seems uncomfortable for them to hear it but it's something I have to say... every time. I wouldn't be here writing this if it wasn't for the teams of teams that got me through my ordeal.
The least I can do is thank them.

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@lawless

Just found out yesterday TAA 4.4 cm and will be monitoring..
Appreciate all the good information as I am still in shock..
Just started low dose beta blocker and already on 2.5 lisinopril for bp.. Doc said to get off the lisinopril if the bp goes to low…
Good to hear your stories….

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Mine was 5.5 and I have aortic dissection. I don't know which caused what but they replaced the AAA (TAA) TYPE A and removed the aneurysm. The remaining TYPE B they can't fix because it's my entire aorta.
I am on perindopril and a statin and another thing. I am meant not to strain or lift. Just nothing that needs to clench and lift. The type B is a concern sure. But I am fortunate to know that I have it and it can be monitored.

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