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Aortic Aneurysms – Introduce yourself & meet others

Posted by @kanaazpereira, Feb 16, 2018

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. You can get started right away by clicking the +FOLLOW icon on the group landing page.

I’m Kanaaz (@kanaazpereira), and I’m the moderator of this group. When you join, you’ll also likely be welcomed by volunteer patient Mentors and fellow members. Learn more about Moderators and Mentors on Connect.

We’ve got 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?

REPLY

@tazzy

Azzurro1999,
Hello! Just under 6 years ago, I was diagnosed with an ascending aortic aneurysm. I was 48 at the time. I was not aware that I had a problem until I just collapsed one day. I worked full time and was very active. I thought everything was fine! Little did I know….

This surgery is a very serious surgery. If you are happy with the surgeon at Regions, that’s great. I would highly recommend that anybody about to have surgery, especially such a complex surgery, should find the best doctor that their insurance will cover.

The surgery is definitely survivable, as per all the post surgery people conversing on this site. The recovery is painful but will gradually get better. You will be in ICU for several days before you are moved to another wing. The nurses will fuss over you (this is good). You’ll be turned from one side to another to prevent bed sores. Moving around in bed will really hurt. The doctor will want you up and sitting, then walking, within a couple days of surgery. You’ll be thinking “are they kidding me, I hurt” but you’ll do it anyway. While in ICU, you’ll be “eating” a lot of broth and drinking liquids. You will be amazed at the number of drainage tubes sticking out of your chest and abdomen post surgery. Dressing changes will be frequent. You’ll learn to love the catheter and bed pan ( ha ha). Sleeping may be a little challenging due to all people coming in and out, especially while in ICU: nurses, phlebotomists, doctors, janitors, nutritionist, heart monitor people, x ray technicians, physical therapists… to name a few.

You may want to consider bringing a few personal items for your comfort: ex. Phone, tablet, favorite toiletries, underwear, slippers.

Consider what type of help you will need at home as well as who will help you at home when you are finally released from the hospital. You won’t be doing a whole lot. Your sternum, heart, aorta and incisions need time to heal. No driving, no cleaning, no cooking, no lifting etc. You may need help showering. A shower stool was a big help.

It is a big surgery. I had two surgeries three months apart for this. Your situation sounds a little more straight forward than mine was. I had unforeseen complications. But here I am 6 years later.

I wish you all the best.

Natalie
So. California

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Thank you Natalie for your detailed message! It sure helps to know what to expect once the fun begins… especially, the post op and the restrictions in the daily life. I am very very thankful for all of it. I woke up this morning to the notification that my appointment was changed to the morning. At least I will not wait and stress most of the day wondering what it will bring..
The surgeon has been assigned through the ER, seems like an experienced and well regarded specialist but I will know more once I meet him in person.
It all happened so fast, not enough time to gather one’s thoughts and meet and greet with various doctors…I will keep posted once I have a clearer picture after this morning!
Thank you again for your message! I am so happy I found this group!

Liked by judyvv1936

Hello All,
Met with the surgeon today and and the result is the surgery scheduled for the next Wednesday.
Considering my age and the risk of rapture he feels the surgery is the way to go and I agree. Either way I am taking chances and I would rather go with the higher odds of survival.
The aneurysm encroached a bit on the arch and the first artery will need to be repaired as well. Valves look good and tight so hopefully no surprises there.
Going in for a CT tomorrow to check the entire vascular system, will see a cardiologist as well.
I hope to make it through and report once I am over the hurdle…
Thank you and good night to you all…

@azzurro1999

Hello All,
Met with the surgeon today and and the result is the surgery scheduled for the next Wednesday.
Considering my age and the risk of rapture he feels the surgery is the way to go and I agree. Either way I am taking chances and I would rather go with the higher odds of survival.
The aneurysm encroached a bit on the arch and the first artery will need to be repaired as well. Valves look good and tight so hopefully no surprises there.
Going in for a CT tomorrow to check the entire vascular system, will see a cardiologist as well.
I hope to make it through and report once I am over the hurdle…
Thank you and good night to you all…

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Best of luck to you. We are routing for you!

Hello again everyone!
here I am, 5 weeks after my AVR and the ascending aorta graft. I had it done at the Regions Hospital in Saint Paul, MN – very pleased with my surgeon and the overall care. The recovery was less traumatic than I expected, the first few days being the hardest due to limited range of movement caused by the incision in my sternum.

I was released from the hospital after 6 days. Since I opted for a mechanical valve I was put on warfarin, 2-3 INR level.
It is overwhelming to come home with a bunch of handouts and the loud heartbeat and think that everything will be just fine…
The INR levels took some time to stabilize, I am on my first week long span before another test and do hope that the results will be good. It's tricky with the diet, big learning curve, especially with the family and growing kids around.
I am on 5mg warfarin and 1 baby aspirin daily.

Started to walk outside after I came home, gradually increasing the distance and speed. Thinking of getting a treadmill as the weather is getting nasty here.
Overall I felt that the recovery was going well. I had my intake meeting for cardiac rehab and I am scheduled to start next Wednesday, 3x a week.
Having said that, there is a glitch in my recovery and I find it somewhat discouraging….. the narrative has been how everything will get fixed an ei will slowly return to my new "normal" but there are bumps ahead… I had a couple of episodes when my heartbeat became very rapid or felt very irregular… then I had an episode when my resting rate would feel very slow and I felt like some beats were skipping, every skipped beat made me feel slightly dizzy, they always occurred while I was seated.

So I called the Heart Center, was fitted with a monitor for 48h and was told that it registered some very high beats, in 200s…interestingly enough, I felt and still feel quite fine…

I am supposed to take 25mg of metoprolol, once daily and then we will see….. all stressed about it as the internet is full of negative feedback from patients how it affects the quality of life, energy levels, mood… I had no chance to talk to my cardiologist since she was not in and another doctor made a call based on the Holter's results.

I wish my update be more upbeat, I feel this is a setback in my recovery and another reason to worry….

Thank you for having this wonderful forum to share the ups and downs!

Ilona

@azzurro1999

Hello again everyone!
here I am, 5 weeks after my AVR and the ascending aorta graft. I had it done at the Regions Hospital in Saint Paul, MN – very pleased with my surgeon and the overall care. The recovery was less traumatic than I expected, the first few days being the hardest due to limited range of movement caused by the incision in my sternum.

I was released from the hospital after 6 days. Since I opted for a mechanical valve I was put on warfarin, 2-3 INR level.
It is overwhelming to come home with a bunch of handouts and the loud heartbeat and think that everything will be just fine…
The INR levels took some time to stabilize, I am on my first week long span before another test and do hope that the results will be good. It's tricky with the diet, big learning curve, especially with the family and growing kids around.
I am on 5mg warfarin and 1 baby aspirin daily.

Started to walk outside after I came home, gradually increasing the distance and speed. Thinking of getting a treadmill as the weather is getting nasty here.
Overall I felt that the recovery was going well. I had my intake meeting for cardiac rehab and I am scheduled to start next Wednesday, 3x a week.
Having said that, there is a glitch in my recovery and I find it somewhat discouraging….. the narrative has been how everything will get fixed an ei will slowly return to my new "normal" but there are bumps ahead… I had a couple of episodes when my heartbeat became very rapid or felt very irregular… then I had an episode when my resting rate would feel very slow and I felt like some beats were skipping, every skipped beat made me feel slightly dizzy, they always occurred while I was seated.

So I called the Heart Center, was fitted with a monitor for 48h and was told that it registered some very high beats, in 200s…interestingly enough, I felt and still feel quite fine…

I am supposed to take 25mg of metoprolol, once daily and then we will see….. all stressed about it as the internet is full of negative feedback from patients how it affects the quality of life, energy levels, mood… I had no chance to talk to my cardiologist since she was not in and another doctor made a call based on the Holter's results.

I wish my update be more upbeat, I feel this is a setback in my recovery and another reason to worry….

Thank you for having this wonderful forum to share the ups and downs!

Ilona

Jump to this post

I have been on the metoprolol for years and have not had any problems at all. My dose is 150. It took care of my tachycardia and irregular beats. If I miss it I remember because the beats change. It really made my life much better as I did not have my "funky beats" to worry about. I had heard negative remarks too but none of the side affects happened to me. Yeah! The cardiologist told me it was like a fortress built around my heart to protect it. Even when I do something that raises my heart rate it keeps it from going too high. I hope it works as well for you.

@azzurro1999

Hello again everyone!
here I am, 5 weeks after my AVR and the ascending aorta graft. I had it done at the Regions Hospital in Saint Paul, MN – very pleased with my surgeon and the overall care. The recovery was less traumatic than I expected, the first few days being the hardest due to limited range of movement caused by the incision in my sternum.

I was released from the hospital after 6 days. Since I opted for a mechanical valve I was put on warfarin, 2-3 INR level.
It is overwhelming to come home with a bunch of handouts and the loud heartbeat and think that everything will be just fine…
The INR levels took some time to stabilize, I am on my first week long span before another test and do hope that the results will be good. It's tricky with the diet, big learning curve, especially with the family and growing kids around.
I am on 5mg warfarin and 1 baby aspirin daily.

Started to walk outside after I came home, gradually increasing the distance and speed. Thinking of getting a treadmill as the weather is getting nasty here.
Overall I felt that the recovery was going well. I had my intake meeting for cardiac rehab and I am scheduled to start next Wednesday, 3x a week.
Having said that, there is a glitch in my recovery and I find it somewhat discouraging….. the narrative has been how everything will get fixed an ei will slowly return to my new "normal" but there are bumps ahead… I had a couple of episodes when my heartbeat became very rapid or felt very irregular… then I had an episode when my resting rate would feel very slow and I felt like some beats were skipping, every skipped beat made me feel slightly dizzy, they always occurred while I was seated.

So I called the Heart Center, was fitted with a monitor for 48h and was told that it registered some very high beats, in 200s…interestingly enough, I felt and still feel quite fine…

I am supposed to take 25mg of metoprolol, once daily and then we will see….. all stressed about it as the internet is full of negative feedback from patients how it affects the quality of life, energy levels, mood… I had no chance to talk to my cardiologist since she was not in and another doctor made a call based on the Holter's results.

I wish my update be more upbeat, I feel this is a setback in my recovery and another reason to worry….

Thank you for having this wonderful forum to share the ups and downs!

Ilona

Jump to this post

I also have had no problems with metoprolol. I have taken it since 2016-25mg twice a day. After open heart surgery, it was given to me right away. I don’t notice any problems with my quality of life. The dosage has stayed the same and heart seems to work well with no blips or anything unusual. Good luck to you! Carol

@lynnw

I have been on the metoprolol for years and have not had any problems at all. My dose is 150. It took care of my tachycardia and irregular beats. If I miss it I remember because the beats change. It really made my life much better as I did not have my "funky beats" to worry about. I had heard negative remarks too but none of the side affects happened to me. Yeah! The cardiologist told me it was like a fortress built around my heart to protect it. Even when I do something that raises my heart rate it keeps it from going too high. I hope it works as well for you.

Jump to this post

Thank you! I sure hope to avoid any side effects! And it would be lovely indeed for the meds to work and make my heart to cooperate! It’s great to hear firsthand feedback!

@crhp194

I also have had no problems with metoprolol. I have taken it since 2016-25mg twice a day. After open heart surgery, it was given to me right away. I don’t notice any problems with my quality of life. The dosage has stayed the same and heart seems to work well with no blips or anything unusual. Good luck to you! Carol

Jump to this post

Carol, thank you for your response! Again, it gives me much hope that things will work out. It’s been pretty good sailing until now…Taking my first dose tonight and keeping my fingers crossed.
Thanks again for taking time to share your experience with me! It helped ease my worries…

@azzurro1999

Hello again everyone!
here I am, 5 weeks after my AVR and the ascending aorta graft. I had it done at the Regions Hospital in Saint Paul, MN – very pleased with my surgeon and the overall care. The recovery was less traumatic than I expected, the first few days being the hardest due to limited range of movement caused by the incision in my sternum.

I was released from the hospital after 6 days. Since I opted for a mechanical valve I was put on warfarin, 2-3 INR level.
It is overwhelming to come home with a bunch of handouts and the loud heartbeat and think that everything will be just fine…
The INR levels took some time to stabilize, I am on my first week long span before another test and do hope that the results will be good. It's tricky with the diet, big learning curve, especially with the family and growing kids around.
I am on 5mg warfarin and 1 baby aspirin daily.

Started to walk outside after I came home, gradually increasing the distance and speed. Thinking of getting a treadmill as the weather is getting nasty here.
Overall I felt that the recovery was going well. I had my intake meeting for cardiac rehab and I am scheduled to start next Wednesday, 3x a week.
Having said that, there is a glitch in my recovery and I find it somewhat discouraging….. the narrative has been how everything will get fixed an ei will slowly return to my new "normal" but there are bumps ahead… I had a couple of episodes when my heartbeat became very rapid or felt very irregular… then I had an episode when my resting rate would feel very slow and I felt like some beats were skipping, every skipped beat made me feel slightly dizzy, they always occurred while I was seated.

So I called the Heart Center, was fitted with a monitor for 48h and was told that it registered some very high beats, in 200s…interestingly enough, I felt and still feel quite fine…

I am supposed to take 25mg of metoprolol, once daily and then we will see….. all stressed about it as the internet is full of negative feedback from patients how it affects the quality of life, energy levels, mood… I had no chance to talk to my cardiologist since she was not in and another doctor made a call based on the Holter's results.

I wish my update be more upbeat, I feel this is a setback in my recovery and another reason to worry….

Thank you for having this wonderful forum to share the ups and downs!

Ilona

Jump to this post

Good to hear you are home and healing from the surgery. Home in 6 days is real good! It took 3 months for my thinners to get in range. I also take the 5 mg of Warfarin like you, but on 2 days(Sunday & Wednesday) I take 7.5. Keeps me in range. I think it takes time for your body to be used to the thinners being there. It's funny you mentioned hearing your valve when your heart beats. I didn't hear mine until I got home from the hospital. Probably too loud of an environment at the hospital to hear it. Get your heart rate stabilized and do the cardiac rehab. It will help your body fully recover.
We are all rooting for you.

All the best to you!
Bruce
Texas

@ch246cf10

Good to hear you are home and healing from the surgery. Home in 6 days is real good! It took 3 months for my thinners to get in range. I also take the 5 mg of Warfarin like you, but on 2 days(Sunday & Wednesday) I take 7.5. Keeps me in range. I think it takes time for your body to be used to the thinners being there. It's funny you mentioned hearing your valve when your heart beats. I didn't hear mine until I got home from the hospital. Probably too loud of an environment at the hospital to hear it. Get your heart rate stabilized and do the cardiac rehab. It will help your body fully recover.
We are all rooting for you.

All the best to you!
Bruce
Texas

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Hi Bruce!
I hope you don’t mind me saying that you feel like an old friend now since you were the very first person to reply to my initial post and your message uplifted me greatly in those dark and scary moments after the diagnosis! And I am equally happy to hear from you now! Thank you for your optimistic vibe, it helps a lot!

Yes, heartbeat is quite loud, the clicking of the valve kind of comes and goes now… could hear it more at the beginning. I am not bothered by it anymore… my kids are still amazed by the sound! I have read somewhere that the noise gets more subdued for some as the pericardium heals and our own tissue grows over the valve and the graft.

As long as the heart stays steady I am good, it’s the irregularity that’s somewhat unpleasant ( or mostly freaking me out) when it happens. I only had two episodes of a irregular heartbeat, the cardiologist was not too concerned with the first one but decided on monitoring when it happened again a few days ago. Enter Metoprolol.

I am seeing the cardiologist on Monday morning and I guess it will be decided then whether I can start the rehab as planned. I have been looking forward to it, being more active and having some schedule again.

Really nice to hear from you and thank you again for all your support!
Ilona

@pamm

Can you tell me please if a AAA is in anyway associated with Pneumatosis Cystoides Intestinalis, and if so, would repairing the AAA help with the PCI? Thank you.
Pam

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Luky06 İ am sorry.i did’nt understand.

@luky2girls

Luky06 İ am sorry.i did’nt understand.

Jump to this post

I have Pneumatosis Cystoides Intestinalis. I was wondering if the AAA is repaired would it help the PCI in anyway, i.e. would it stop the gaseous cysts from reoccurring, etc. I hope this helps, and thank you for asking.
Sincerely,
Pam

Can you tell me please if a AAA is in anyway associated with Pneumatosis Cystoides Intestinalis, and if so, would repairing the AAA help with the PCI? Thank you.
Pam

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