Aortic valve replacement with thoracic aortic aneurysm

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sleepy

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Joined
Jan 21, 2023
Messages
5
Location
San Francisco
Hi all,

Was told around eight months ago that I was not yet a candidate for surgery, but if my aortic valve regurgitation worsened, I should consider getting the valve replacement and possibly the aneurysm fixed as well.

Fast-forward to my most recent test results, and the regurgitation is now considered moderate. Mild aortic stenosis. The aneurysm might have grown slightly, but not very much if at all over that time.

Now the surgeon is telling me I am a candidate for surgery, and that if it’s going to feel like it’s hanging over my head we should just do it now. Otherwise, we can wait until next fall for another set of tests.

Generally speaking I feel pretty good. I do have some periods where I am very exhausted, but that’s been going on for a while and I’m not convinced it’s linked to my heart. I recently discovered that my hemoglobin a1c is borderline pre-diabetic, and that seems like the more reasonable explanation for the fatigue (increased average glucose levels).

I’m in my early 50’s and concerned about a lot of factors related to surgery.

How will things change after? Will I have any long-term restrictions? Will being somewhat overweight make the surgery more difficult, complications more substantial, etc.?

It’s hard to get time with the cardiologist and cardiothoracic surgeon, which makes it difficult to get questions like this answered as well.

Planning for pushing for more of their time, and some resources to better educate myself.

Anyway, that’s my intro, hoping to hear from other people who had those two surgeries done.
 

thomas999

Well-known member
Joined
Jul 18, 2012
Messages
85
Location
sterling heights, michigan, usa
Hi all,

I’m in my early 50’s and concerned about a lot of factors related to surgery.

How will things change after?
Biological valve or mechanical valve? Blood thinners will be apart of the mechanical valve choice. Taking blood thinners will cause your clotting time to be longer.
Will I have any long-term restrictions?
I've had a St Jude valve for over 35 years now and I don't really have any restrictions. I have participated in activities just as frequently as before the surgery.
Will being somewhat overweight make the surgery more difficult, complications more substantial, etc.?
Being overweight is always a problem, and a difficult situation to overcome for many. Weather having heart surgery or not one should always keep their weight in check. It's great for many different Health aspects, and self-esteem, just feeling better about yourself.
 

sleepy

Member
Joined
Jan 21, 2023
Messages
5
Location
San Francisco
Biological valve or mechanical valve? Blood thinners will be apart of the mechanical valve choice. Taking blood thinners will cause your clotting time to be longer.
The surgeon said he would use a mechanical valve, I believe primarily because of my age and not wanting to need to repeat at some point in the future.

I've read online that sometimes even mechanical valves need replacement, so I was planning on researching that point further and coming back with questions.

Being overweight is always a problem, and a difficult situation to overcome for many. Weather having heart surgery or not one should always keep their weight in check. It's great for many different Health aspects, and self-esteem, just feeling better about yourself.

Agreed. I'm just wondering how problematic it will be for surgery, and recovery. I'm working on dropping pounds, but if for example I had to choose between having surgery soon at my current weight or later with 10-20 pounds removed, it's not clear to me which choice would be better, especially if the surgery is not urgent.
 

sleepy

Member
Joined
Jan 21, 2023
Messages
5
Location
San Francisco
Why? How large is your aneurysm?

4.6cm. Last spring at 4.5cm with mild-to-moderate regurgitation he said we could probably wait until 5.5cm to repair the aneurysm unless the regurgitation worsened.

My docs didn't want to do surgery until my regurgitation was severe.

I am hoping to meet with the surgeon in person rather than video soon, because I think there's been some misunderstanding of the frequency and/or severity of symptoms that I might be having.

For example I am sometimes fatigued, and sometimes feel a little short of breath, but not substantially so, and not during activity. I think the feeling a little short of breath could be more related to the fatigue than the heart per-se. I also mentioned that I sometimes feel a little pain, but when I say "little" I mean for a few seconds every once in a long while, and it feels a bit like a pinch, not something severe. I've also had some chest pain which I believe is referred pain from my lower back. That feels more like a strong hug, and usually goes away pretty quickly. That has been going on for a very long time, probably at least 15 years.
 

sleepy

Member
Joined
Jan 21, 2023
Messages
5
Location
San Francisco
Blood thinners will be apart of the mechanical valve choice. Taking blood thinners will cause your clotting time to be longer.

I've had a St Jude valve for over 35 years now and I don't really have any restrictions. I have participated in activities just as frequently as before the surgery.

Oh that raises a question I was curious about. Many years ago when I first found out about my bicuspid aortic valve, I was told that if I ever had surgery and got a mechanical valve, one impact could be not being able to drink alcohol anymore due to the blood thinners. But since then I've read that a drink here and there should be fine, and that people actually home-monitor INR. Apparently you also need to be concerned with platelet count as well, which I imagine is something they will monitor for anyone taking blood thinners.

I'm somewhat on the fence about whether I'd even want to take the risk of drinking while taking blood thinners, just to remove/reduce a risk of complications.

But I'm curious about your experience and experience of others in this area.
 

thomas999

Well-known member
Joined
Jul 18, 2012
Messages
85
Location
sterling heights, michigan, usa
Oh that raises a question I was curious about. Many years ago when I first found out about my bicuspid aortic valve, I was told that if I ever had surgery and got a mechanical valve, one impact could be not being able to drink alcohol anymore due to the blood thinners. But since then I've read that a drink here and there should be fine, and that people actually home-monitor INR. Apparently you also need to be concerned with platelet count as well, which I imagine is something they will monitor for anyone taking blood thinners.

I'm somewhat on the fence about whether I'd even want to take the risk of drinking while taking blood thinners, just to remove/reduce a risk of complications.

But I'm curious about your experience and experience of others in this area.
I'm not a big drinker, but when with friends on several locations I have had my share, and really didn't concern myself too much with blood thinners. Maybe I should have but I didn't. In fact this past summer I have met with neighbors on their patio and didn't have any reservations as I drank several drinks, lol. I enjoy sipping tequila those evenings. Probably have four of them, shame on me.
 

Croooser

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Messages
101
I believe that the conventional medical advice for mild stenosis (and mild symptoms) combined with an AA at 4.6cm would not indicate surgery. As I understand it (and I am NOT a medical professional), the risk is not linear - meaning that the risk increases significantly when the stenosis transitions from moderate to severe and/or when the AA goes above 5.0. In my case when my Aortic Valve Area measured <1.0 and my AA measured 5.0, I was then considered a candidate for surgery - not before.

It is possible for an AA to not necessarily grow at a predictable rate - i.e. it may increase by a cm and then stabilize for as long as several years.

Consulting with a knowledgeable Doctor that you have confidence in is the most important thing to do.

Advising you to "get the surgery over with if it worries you" even though your valve condition is moderate and your AA is well below the norm for surgery, does not sound to me like someone I would listen to.

The standard for monitoring these conditions is consistent testing over time - typically 1X/year until approaching severe and then 6 mos interval. CT scan for aneurysm (might not be every year until it gets worse because of radiation) and echo for Aortic Valve (every year since there is no ill effect from the test). I recommend getting a hard copy of your test results and then maintaining a list of the key measures so that you can see at a glance the progression. In my experience there is variation in test results. I actually had my test results get slightly better some years due to the margin for error in testing.

HTH
 

carolinemc

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Joined
May 31, 2010
Messages
1,368
Location
kansas city, mo
Biological valve or mechanical valve? Blood thinners will be apart of the mechanical valve choice. Taking blood thinners will cause your clotting time to be longer.

I've had a St Jude valve for over 35 years now and I don't really have any restrictions. I have participated in activities just as frequently as before the surgery.

Being overweight is always a problem, and a difficult situation to overcome for many. Weather having heart surgery or not one should always keep their weight in check. It's great for many different Health aspects, and self-esteem, just feeling better about yourself.
I was touched about your comment about the weight. I put on the weight due to personal trauma, something that should not have happened. I do the bad, emotional eating.
I am now trying to change that pattern, into positive thinking and with the diabetes, which I have been fighting since 2003.
Have had the St. Jude's aortic valve since 2001. But the weight has been a problem for years. But I have lost 30+ pounds on the last few months, changed my metformin from Fast acting to ER and made a difference. Got on insulin back in October of last year, made some diet changes, and was on Januvia, changes to Trulicity. Has made a difference. And trying to drink more water.
So, in taking care of the heart, edema and diabetes, I feel much better today. Having caring student doctors and Nurse person help make things better. So happy for you, for being positive goes a long way. Depression is a bummer. I will keep positive, for it helps the whole body.
You have a great day. :)
 

carolinemc

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Joined
May 31, 2010
Messages
1,368
Location
kansas city, mo
I believe that the conventional medical advice for mild stenosis (and mild symptoms) combined with an AA at 4.6cm would not indicate surgery. As I understand it (and I am NOT a medical professional), the risk is not linear - meaning that the risk increases significantly when the stenosis transitions from moderate to severe and/or when the AA goes above 5.0. In my case when my Aortic Valve Area measured <1.0 and my AA measured 5.0, I was then considered a candidate for surgery - not before.

It is possible for an AA to not necessarily grow at a predictable rate - i.e. it may increase by a cm and then stabilize for as long as several years.

Consulting with a knowledgeable Doctor that you have confidence in is the most important thing to do.

Advising you to "get the surgery over with if it worries you" even though your valve condition is moderate and your AA is well below the norm for surgery, does not sound to me like someone I would listen to.

The standard for monitoring these conditions is consistent testing over time - typically 1X/year until approaching severe and then 6 mos interval. CT scan for aneurysm (might not be every year until it gets worse because of radiation) and echo for Aortic Valve (every year since there is no ill effect from the test). I recommend getting a hard copy of your test results and then maintaining a list of the key measures so that you can see at a glance the progression. In my experience there is variation in test results. I actually had my test results get slightly better some years due to the margin for error in testing.

HTH
I just found out, since I was a heart patient from being born with a defective aortic valve with murmur, had repair at 8 years old and replacement with St' Jude's at 36 years old, I now have developed Mitral Valve Calcification. They will only monitor it for now. I studied from reliable sources that treatment varies and surgery is last resort. So I will keep being positive about everything. I am type 2 diabetic and have edema in both lower legs. I have echos done with contrast every year. And I have irregular heartbeat. So I just keep on living and let the professionals do what they can.
 

carolinemc

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Joined
May 31, 2010
Messages
1,368
Location
kansas city, mo
I'm not a big drinker, but when with friends on several locations I have had my share, and really didn't concern myself too much with blood thinners. Maybe I should have but I didn't. In fact this past summer I have met with neighbors on their patio and didn't have any reservations as I drank several drinks, lol. I enjoy sipping tequila those evenings. Probably have four of them, shame on me.
I still drink every blue moon. As long as you are a moderate drinker, being on warfarin, the INR or Protime will be fine.
 

carolinemc

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Joined
May 31, 2010
Messages
1,368
Location
kansas city, mo
Oh that raises a question I was curious about. Many years ago when I first found out about my bicuspid aortic valve, I was told that if I ever had surgery and got a mechanical valve, one impact could be not being able to drink alcohol anymore due to the blood thinners. But since then I've read that a drink here and there should be fine, and that people actually home-monitor INR. Apparently you also need to be concerned with platelet count as well, which I imagine is something they will monitor for anyone taking blood thinners.

I'm somewhat on the fence about whether I'd even want to take the risk of drinking while taking blood thinners, just to remove/reduce a risk of complications.

But I'm curious about your experience and experience of others in this area.
You can still occasionally drink in moderation. There is no risk with a can of beer, or glass of wine. Moderation is the key.
 

ChuckM

Member
Joined
Nov 29, 2022
Messages
15
Location
Lafayette, La
Oh that raises a question I was curious about. Many years ago when I first found out about my bicuspid aortic valve, I was told that if I ever had surgery and got a mechanical valve, one impact could be not being able to drink alcohol anymore due to the blood thinners. But since then I've read that a drink here and there should be fine, and that people actually home-monitor INR. Apparently you also need to be concerned with platelet count as well, which I imagine is something they will monitor for anyone taking blood thinners.

I'm somewhat on the fence about whether I'd even want to take the risk of drinking while taking blood thinners, just to remove/reduce a risk of complications.

But I'm curious about your experience and experience of others in this area.
Through a routine calcium score scan ordered by my GP because of a family history of heart attacks, they found my +5cm aortic aneurysm. I returned, they did an actual scan with contrast to confirm, followed by an echo to see flow. We then scheduled with a Thoracic, he was certain for a replacement of the root and a section of the aorta, but didn't mention specifics about the valve. He gave me a general choice and his recommendation: I was 49, a mechanical will last a lifetime but I have to take Warfarin. A non mechanical will likely have be replaced at some point. I did not ask about the specifics of the non mechanical because his recommendation was for the mechanical. The replacement would require open heart surgery (I don't know if a subsequent replacement of a non-mechanical would require the same or if they'd do it through a catheter or not), and since I didn't want that ever again, we went ahead with the mechanical.

As many have said, the Warfarin regimen isn't terrible. You do bleed when you cut yourself (I bit my tongue and couldn't get it to stop, thats how I found this site, I wish I'd found it BEFORE surgery!!), but I live in Louisiana, snow skiing isn't on my radar (and I haven't water skied in years), but we DO party. I've never been a HUGE drinker but I have had my share from time to time (football, mardi gras, summer beach trips), and that hasn't really changed. I currently do not monitor my own INR, my insurance covers it nicely and I don't mind the 5 minute visit once a month with my nurse. My diet is pretty routine, I eat some greens but its not hard to stay away from the nasty ones that I'm not supposed to eat anyway. On the other hand, sometimes I drink which of course will swing it the other way, but all of it in moderation. This is Louisiana, we DO drink.

Overall, I do occasionally have a why me moment, not why me, I had surgery, but why me did I have this condition. I was born with it and it is what it is, but having a really good friend in really good shape suddenly pass after allegedly hearing a "pop", makes me thankful that they found it when they did.

My suggestion: Listen to your doctors, do your research and trust the information. To me, the longevity of the mechanical and the higher percentage of never going back in for me, outweighed my (unnecessary) fear of the warfarin.
 

carolinemc

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Messages
1,368
Location
kansas city, mo
4.6cm. Last spring at 4.5cm with mild-to-moderate regurgitation he said we could probably wait until 5.5cm to repair the aneurysm unless the regurgitation worsened.



I am hoping to meet with the surgeon in person rather than video soon, because I think there's been some misunderstanding of the frequency and/or severity of symptoms that I might be having.

For example I am sometimes fatigued, and sometimes feel a little short of breath, but not substantially so, and not during activity. I think the feeling a little short of breath could be more related to the fatigue than the heart per-se. I also mentioned that I sometimes feel a little pain, but when I say "little" I mean for a few seconds every once in a long while, and it feels a bit like a pinch, not something severe. I've also had some chest pain which I believe is referred pain from my lower back. That feels more like a strong hug, and usually goes away pretty quickly. That has been going on for a very long time, probably at least 15 years.
Not diagnosing, just personal experience. When you are having a heart issue, it will affect the lungs and you will easily tire. Always mention this to all doctors. And he backpain should be talked about also.
 

thomas999

Well-known member
Joined
Jul 18, 2012
Messages
85
Location
sterling heights, michigan, usa
I was touched about your comment about the weight. I put on the weight due to personal trauma, something that should not have happened. I do the bad, emotional eating.
I am now trying to change that pattern, into positive thinking and with the diabetes, which I have been fighting since 2003.
Have had the St. Jude's aortic valve since 2001. But the weight has been a problem for years. But I have lost 30+ pounds on the last few months, changed my metformin from Fast acting to ER and made a difference. Got on insulin back in October of last year, made some diet changes, and was on Januvia, changes to Trulicity. Has made a difference. And trying to drink more water.
So, in taking care of the heart, edema and diabetes, I feel much better today. Having caring student doctors and Nurse person help make things better. So happy for you, for being positive goes a long way. Depression is a bummer. I will keep positive, for it helps the whole body.
You have a great day. :)
I surely didn't mean it as a jab, I definitely realize people have tendencies that are hard to break. I have my own that I struggle with. I hope things work out for you!
 

pellicle

Professional Dingbat, Guru and Merkintologist
Joined
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Messages
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do your research and trust the information.
I just wanted to add: don't trust the information from a sales pitch from a company, only trust the information from peer reviewed journals not shills advertising a (medical) product (which you do get a lot of in the USA, but is illegal in other countries).

Sure, journals disagree on points, but that's still not contradictory because if you dig into the details on "wait, how can this article claim one thing, and that article claim another" you'll find one of them omits something (usually time, so duration of study).

HTH
 

tom in MO

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Jan 17, 2012
Messages
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MO USA
In my opinion, the decision on surgery should first come from your cardiologist and then be confirmed by the surgeon. That's how it was done in my situation. Surgeons are predisposed to fix things with the knife, where to a cardiologist surgery is option. In my case, I didn't even see a surgeon until my cardio decided it looked like the BAV stenosis needed repair. I had echoes every 5 years, then 2, 1, 6-m until it was time.

From the little I know a change in aneurysm from 4.5 to 4.6 cm is essentially no change. If 5.5cm is the tipping point, you may have a while to go.

I am fat, and it had no effect on my surgery. Being overweight can be a blessing if there are major complications and you need to refrain from eating for a significant time. Been there done that, lost 40lbs once due to a colon infection and surgery...only time I was ever at my "correct" BMI.

You can drink alcohol on warfarin. Just don't drink so much you fall and cut yourself or crash your car and do a header because the warfarin will result in more blood flow before coagulation.
 

Cormac_1989

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Joined
Jan 28, 2023
Messages
2
Location
Kildare, Ireland
Hi all,

Was told around eight months ago that I was not yet a candidate for surgery, but if my aortic valve regurgitation worsened, I should consider getting the valve replacement and possibly the aneurysm fixed as well.

Fast-forward to my most recent test results, and the regurgitation is now considered moderate. Mild aortic stenosis. The aneurysm might have grown slightly, but not very much if at all over that time.

Now the surgeon is telling me I am a candidate for surgery, and that if it’s going to feel like it’s hanging over my head we should just do it now. Otherwise, we can wait until next fall for another set of tests.

Generally speaking I feel pretty good. I do have some periods where I am very exhausted, but that’s been going on for a while and I’m not convinced it’s linked to my heart. I recently discovered that my hemoglobin a1c is borderline pre-diabetic, and that seems like the more reasonable explanation for the fatigue (increased average glucose levels).

I’m in my early 50’s and concerned about a lot of factors related to surgery.

How will things change after? Will I have any long-term restrictions? Will being somewhat overweight make the surgery more difficult, complications more substantial, etc.?

It’s hard to get time with the cardiologist and cardiothoracic surgeon, which makes it difficult to get questions like this answered as well.

Planning for pushing for more of their time, and some resources to better educate myself.

Anyway, that’s my intro, hoping to hear from other people who had those two surgeries done.
Hey Buddy, I hope your surgery goes well. I would not worry too much about weight or warfarin. I was overweight before my AVR surgery in Dec 2022. Not by much, I was 106 Kilo / 16.5 Stone / 231.5 Lbs and 6ft 4 tall. I did drop down from 127 Kilo / 20 Stone / 280lbs the year before so that was good. But i wanted to tell you each time i met my surgeon or cardio they never seemed to concerned about my weight and even the cardio said it was good to have some additional weight going into the surgery as there is long spells where you might not be eating much.

I am on warfarin 7 weeks now and it is not that bad, I have had a drink once or twice the last 2 weeks , like 1 or 1.5 beers and no issues at all. My INR is stable now thankfully. The mechanical valves can last a lifetime, the valve i went for On-x valve which can apparently last a lifetime (I am 33). I have seen posters here with mechanical valves for over 50 years.
 

Survived03

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Messages
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California
Now the surgeon is telling me I am a candidate for surgery, and that if it’s going to feel like it’s hanging over my head we should just do it now. Otherwise, we can wait until next fall for another set of tests.
Sleepy, perhaps this presentation will help guide you along with your surgeon only as it relates to the AAA and timing of surgery. This would imply an earlier (smaller aneurysm size than before) shows better outcomes and fewer dissections.


I had AAA surgical repair and the surgeon used the valve sparing technique. I was 43 at the time and pretty active. Even knowing that the data only went out to 7 years at the time, I do not regret our decision to spare the valve. Today, closing in on 20 years post, I am in the need for an aortic valve replacement.

The surgery was no walk in the park but comparing it to a vertebrae fusion surgery, the pain was less. The length of recovery was longer than I cared for but it was my first surgery of any kind. It was a different type of recovery that slowly improves. Some days you fell like you are not getting better but one day you look back and realize that you felt much better than two weeks ago, then another two weeks. I was back at work full time in two months. I wish you luck. If you have any other questions, please feel free to ask. There is also a string on this forum that covers many patient's experiences. Its called "After your surgery, what are some of the things that you found out that surprised you" This too may be helpful for you or perhaps you have already found it.

I wish you luck with your decisions and future surgery.
 

pellicle

Professional Dingbat, Guru and Merkintologist
Joined
Nov 4, 2012
Messages
11,024
Location
Queensland, OzTrayLeeYa
The surgery was no walk in the park but comparing it to a vertebrae fusion surgery, the pain was less. The length of recovery was longer than I cared for but it was my first surgery of any kind.
this could be way off base, but my personal experience is (when I get to drill down) that the people who are the most stressed have typically never had any surgery, never had any injury (other than a skinned knee as a kid), never been in a car accident or been exposed to any trauma (other than the worry of being diagnosed with an issue which they can't actually directly perceive as having an influence in their lives yet).

Its a situation which I can't say I have any experience with (IE I've had lots of various injuries over my life) so have trouble relating to the problem.
 
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