Possible Valve Replacement- aortic valve stenosis and pectus excavatum

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SatoriFround

Well-known member
Joined
Jul 12, 2024
Messages
110
Location
Pearland, TX
I am finding it hard to wait. I have had a heart murmur for my entire life. I am 50 years old. I also have pectus excavatum (sunken chest). I had a traumatic surgery for this when I was 7. I also had high blood pressure for many years. The first time a doctor showed concern about my murmur was about 7 years ago. This is the same doctor I saw while growing up, which is confusing. Why was he not concerned earlier? Anyway, nothing came of it. He was very old and never really suggested doing anything. So a year and a half ago at my physical my doctor put me on new blood pressure meds and cholesterol meds for hbp and high cholesterol and referred me to a cardiologist. They did an echo and couldn't rule out bicuspid valve. They couldn't get visualizations of things like the pulmonic valve leaflets or measure systolic pulmonary artery pressure or right ventricular systolic pressure. There was no valve regurgitation at that echo and my left atrium is mildly dilated. I was diagnosed with moderate aortic valve stenosis and told to come back in a year.

I went to the doctor last month about 18 months later, I know, I know. My diagnosis has moved to severe aortic stenosis. However, my blood pressure and cholesterol levels are now normal. My LV wall measurements went from Septum of 1.1 cm and Posterior of 1.1 cm to Septum of 1.8 cm and Posterior of 1.3 cm. It also states trace tricuspid regurgitation present. Does this mean they ruled out the bicuspid valve? LOL It is very confusing. The dilation of the left atrium is still mild. Oh, and I have asymmetric septal hypertrophy. My ejection fraction has been been over 60% both times, so I guess that is good from what I have read. The doctor has not called me to discuss my results, over a week after the report showed up in MyChart his office called and said the doctor was referring me for a CT.

I am only 50 years old. I am tired all the time. I work out at least 3 days a week though. I was a smoker for many many years and only quit 2 years ago so I really don't know if my breathing is labored. What does regular breathing feel like? I occassionally get dizzy, not often, and sometimes have chest palpitations, but no real pain. That said, we had a power outage here this week and I felt SICK. It was very hot. I had dizziness, palpitations and was icing my chest to feel better. We ended up driving 4 hours away to find a hotel with power where we could have A/C. Thankfully the power is finally back on, it took FOUR days. We live near Houston, so... Thank you Hurricane Beryl. Grrr... Anyway I am just so unsure of what is going on. The info out there is that TAVI is not preferred for those under 65, but with the chest surgery I had as a child and the trauma that caused it is very scary. They broke open my chest and cut all the ligaments before putting the metal bar in there that remained until they removed it 6 months to a year later. A needless surgery since my chest sunk back in. The PE can compress the heart and my heart is not in the normal position due to compression of the chest, which is probably why certain things were hard to visualize on the echo. I also worry about damange inside my chest cavity that could cause problems for a possible operation. Anyway, that is my story in a nutshell, making my CT appointment tomorrow, but still upset the doctor hasn't bothered to speak to me yet. :( The heat and how bad it made me feel compared to everyone else in my household sort of made this much more real.

Anyone have a pep talk? LOL
 
Hello from Australia Satori
(wonders if you're Japanese)

Let me just select a few points from this:
I have had a heart murmur for my entire life. I am 50 years old. I also have pectus excavatum (sunken chest)
noted ...
I had a surgery for this when I was 7.
I had my first OHS at 10, because of a murmur detected when I was 5 (I'm 60 now and have had two more OHS since then).

I also had high blood pressure for many years. The first time a doctor showed concern about my murmur was about 7 years ago. This is the same doctor I saw while growing up, which is confusing. Why was he not concerned earlier?

perhaps he felt there was no need, perhaps he was incompetent?
¯\_(ツ)_/¯

... a year and a half ago at my physical my doctor put me on new blood pressure meds and cholesterol meds for hbp and high cholesterol and referred me to a cardiologist.
sounds like a 'prudent' not atypical thing for a GP to do ...

They did an echo and couldn't rule out bicuspid valve.
weird ... but then I see TX which means USA which means
¯\_(ツ)_/¯


... There was no valve regurgitation at that echo and my left atrium is mildly dilated.
well that's partly good and partly "needs more research" (esp dilated bit)

I was diagnosed with moderate aortic valve stenosis and told to come back in a year.
seems like I'd go get a second opinion right there.

Somewhere good, somewhere thorough ...
I went to the doctor last month about 18 months later, I know, I know. My diagnosis has moved to severe aortic stenosis.
ok ... so that above point about "told to come back" was more than a year ago?

However, my blood pressure and cholesterol levels are now normal.

BP isn't really a significant indicator in this IMO

My LV wall measurements went from Septum of 1.1 cm and Posterior of 1.1 cm to Septum of 1.8 cm and Posterior of 1.3 cm.
I'm no specialist in understanding these measurements so I'll leave that to those who are.

It also states trace tricuspid regurgitation present. Does this mean they ruled out the bicuspid valve?
not as I read it, it suggests just what it says. I don't see enough to know they are suggesting anything about the aortic valve

The dilation of the left atrium is still mild.
not a good thing as mentioned

...The doctor has not called me to discuss my results,
General Practitioner (GP = Doctor) or your Cardiologist?

Such delays usually suggest
  1. over subscribed with patients
  2. not a high priority in his/her eyes

over a week after the report showed up in MyChart his office called and said the doctor was referring me for a CT.
CT seems like a good idea ... get more measurements and better data.

II am tired all the time. I work out at least 3 days a week though.
are you over training? But not a good sign
I was a smoker for many many years and only quit 2 years ago
bad, but glad you've stopped.

I really don't know if my breathing is labored.

probably related to smoking history and this decline in valve performance

What does regular breathing feel like?
you breathe in, you breath out ... like "you lift your arm, you lower it"

to get more info we need to go quantative (with measurements like lung capacity tests)

I occassionally get dizzy, not often, and sometimes have chest palpitations, but no real pain.

suggests the valves are causing lowered efficiency of managing your needs

That said, we had a power outage here this week and I felt SICK. It was very hot. I had dizziness, palpitations and was icing my chest to feel better. We ended up driving 4 hours away to find a hotel with power where we could have A/C.
you definitely need to get evaluations soon.

What's your BMI?

The info out there is that TAVI is not preferred for those under 65,
the only people who TAVI is preferred for is people so close to falling off the perch (either age or dreadful health) that they would not benefit from Standard OHS. Standard is the "Gold Standard" if you ask me. TAVI is the printing money solution.

but with the chest surgery I had as a child and the trauma that caused it is very scary.
you probably should have worked [through / that out] earlier but now you need to either see a psychologist or just work through it yourself. Its irrational and unhelpful. Just pushing it down will probably just result in other symptoms (like high blood pressure).

They broke open my chest and cut all the ligaments before putting the metal bar in there that remained until they removed it 6 months to a year later.
That's a rugged surgery, no two ways about that ... Like all trauma though you need to confront it and work through it. The longer you leave it stuck the more it "calcifies" and becomes hard to approach.

I suggest you'll need help with that but you'll also need to accept you want to put it behind you (not pretend it didn't happen, but not be dominated by it).

I speak as one who's had a few traumas.

A needless surgery since my chest sunk back in.
indeed, sounds more like some butchery to me ... sadly I've seen a lot of bad stuff from other places (than where I come from).

https://en.wikipedia.org/wiki/Dr._Death_(2021_TV_series)
Season 1 dramatizes the story of Christopher Duntsch, an American neurosurgeon convicted after permanently mutilating his patients, killing two of them.


Anyway, that is my story in a nutshell, making my CT appointment tomorrow
I hope you get some fruitful results ...

, but still upset the doctor hasn't bothered to speak to me yet. :(
they can be like that ...

Anyone have a pep talk? LOL

Not really ... all I can say is "keep focused on a goal" and work towards it

Some viewing






Not a bad start 頑張ってください

Best Wishes
 
Hello from Australia Satori
(wonders if you're Japanese)
Nah, it is actually my wife's choice, her first daughter's name is Satori.
Not Japanese. it is actually my wife's user name, it is one of her daughter's name from her previous marriage.

I had my first OHS at 10, because of a murmur detected when I was 5 (I'm 60 now and have had two more OHS since then).
That must've been tough
That must've been tough

perhaps he felt there was no need, perhaps he was incompetent?
¯\_(ツ)_/¯
I'm going with incompetent.
sounds like a 'prudent' not atypical thing for a GP to do ...
Yep
weird ... but then I see TX which means USA which means
¯\_(ツ)_/¯
Our medical system is amazing and yet not amazing at the same time.
well that's partly good and partly "needs more research" (esp dilated bit)
Fingers are crossed.
ok ... so that above point about "told to come back" was more than a year ago?
Yes. I couldn't figure out the online appointmaker, for some reason the verification texts weren't coming through on my text app, so had to switch to a different one to be able to login, my wife found and fixed this problem. Then found out the cardiologist I had used left, then had to wait another month of so for an opening....
BP isn't really a significant indicator in this IMO
I mentioned BP more because I read having high BP for an extended period can damage the heart, so perhaps some of what they are seeing is caused by that. The doctor believes some of this is due to congenital issues since the heart murmur has been there my whole life. My parents never talked about this stuff with me. The PE was far more concerning to them than my heart murmur.
I'm no specialist in understanding these measurements so I'll leave that to those who are.
The 1.3 number is barely above normal and went from 1.1 to the 1.3 in the time between appointments. The 1.8 measurement was a bigger increase (from 1.1) and so farther above normal range
not as I read it, it suggests just what it says. I don't see enough to know they are suggesting anything about the aortic valve
Yeah, I read through the two reports again and it sort of seems to be just boiler plate language. Also, there are two sets of valves, correct? Ventricular and aorta?
not a good thing as mentioned


General Practitioner (GP = Doctor) or your Cardiologist?
Cardiologist
Such delays usually suggest
  1. over subscribed with patients
  2. not a high priority in his/her eyes
It did take a month to get the initial appointment. The network we use has a lot of doctors, but they are at many different locations and I wanted to the closest one. I probably could have gotten an earlier one if I drove to a different campus. I am hoping it is not a high priority because maybe it isn't as bad as I am catastrophizing.
CT seems like a good idea ... get more measurements and better data.
Agreed. I am hoping it gives us better views of the areas they couldn't see. Due to the angle of my heart they werer unable to even calculate systolic pulmonary artery pressure or right ventricular systolic pressure.
are you over training? But not a good sign
No. I do some weights and light cardio. Rotate between legs, back/abdomen and arms. My cardio is always just get my heart rate up a little, I don't have sweat dripping off me or anything.
bad, but glad you've stopped.



probably related to smoking history and this decline in valve performance


you breathe in, you breath out ... like "you lift your arm, you lower it"

to get more info we need to go quantative (with measurements like lung capacity tests)
Neither of the cardiologists even did a stress test. Well, I told the first one I didn't think I needed one since I worked out and was able to do so comfortably.
suggests the valves are causing lowered efficiency of managing your needs


you definitely need to get evaluations soon.

What's your BMI?
My BMI is 26.6. The doctor did say I needed to lose weight. I am not big though. Well, I am tall, 6'4".
the only people who TAVI is preferred for is people so close to falling off the perch (either age or dreadful health) that they would not benefit from Standard OHS. Standard is the "Gold Standard" if you ask me. TAVI is the printing money solution.
Wow. My wife spent hours being Dr. Google last night and did tell me it is for those 65 and up. But she was reading studies about using it in younger people. The nice thing about it is there is no need for anti-coagulants and it is minimallly invasive. Much simpler than open heart surgery. The internet said lifespan of the device is about 10 years, so if I live a long time that is a lot of TAVI-in-TAVI procedures. The CT will tell me more. Hopefully it will give information on the hard to see areas and a bigger picture of my current heart health. It would be nice to have an answer to the bicuspid valve question. Apparently it is quite comman for those who have Pectus Excavatum to also have bicuspid valves.
you probably should have worked [through / that out] earlier but now you need to either see a psychologist or just work through it yourself. Its irrational and unhelpful. Just pushing it down will probably just result in other symptoms (like high blood pressure).
I will deal with it. The trauma isn't so great that I would refuse surgery. Plus my heart is very close to the surface, they don't have to dig around in my chest cavity like they did in the previous surgery.
That's a rugged surgery, no two ways about that ... Like all trauma though you need to confront it and work through it. The longer you leave it stuck the more it "calcifies" and becomes hard to approach.
Yes, I am making the CT appointment today. It is a CT with contrast. Do you have to drink something for that? Today's PE surgeries are much different. They have modified it and figured out ways to reduce the pain afterwards. It is still painful, but some of the new technologies have nerve blocks, etc and that's helps a lot from what I have read.
I suggest you'll need help with that but you'll also need to accept you want to put it behind you (not pretend it didn't happen, but not be dominated by it).

I speak as one who's had a few traumas.


indeed, sounds more like some butchery to me ... sadly I've seen a lot of bad stuff from other places (than where I come from).

https://en.wikipedia.org/wiki/Dr._Death_(2021_TV_series)
Season 1 dramatizes the story of Christopher Duntsch, an American neurosurgeon convicted after permanently mutilating his patients, killing two of them.
My wife and I watched this episode I believe.... That show is absolutely horrific in the failures of the medical system to root out these doctors and get rid of them. *sigh* It is horribly sad.

I hope you get some fruitful results ...


they can be like that ...



Not really ... all I can say is "keep focused on a goal" and work towards it

Some viewing






Not a bad start 頑張ってください

Best Wishes


I just want to say thank you for the response. Sometimes it is good to just talk about it and my wife always ends up in a google spiral. She loves PubMed. ;)
 
Good morning
But she was reading studies about using it in younger people. The nice thing about it is there is no need for anti-coagulants and it is minimallly invasive.
to my mind (as an Australian not an American) I want to emphasise the following points
  • I believe that guiding younger people to TAVI is unethical and using them as "meat on the slab" for data gathering
  • having had 3 OHS I can say minimally invasive is not shaping up as having any benefits in the long term, makes no less scar tissue where it counts (meaning around the heart) and you REALLY want to avoid multiple reoperations.
you should really seriously look at the validity of the view of avoiding anticoagulants. Warfarin is actually not what the mainstream opinion makes it out to be, and in the main is related to incompetent handling of management of INR.

Also you should actually read the details of reports (not just what the choose to put into Abstracts. An analysis here:
https://www.valvereplacement.org/th...tudy-published-may-22-2024.889599/post-933535

The findings are striking:​
"ViV-TAVR was associated with higher rates of late mortality and heart failure hospitalization."​
Not slightly higher, but much higher:​
"no difference in mortality was observed up to 2 years (hazard ratio, 1.03; 95% CI, 0.59-1.78), but after 2 years, ViV-TAVR was associated with higher mortality (hazard ratio, 2.97; 95% CI, 1.18-7.47) as well as with a higher incidence of heart failure hospitalization (hazard ratio, 3.81; 95% CI, 1.57-9.22)."​
That is correct. 2.97 hazard ratio for valve in valve TAVR vs SAVR after year 2 for all cause mortality. That represents a 2.97x greater rate of mortality. Incidence of heart failure hospitalization was also striking at hazard ratio of 3.81 for TAVR= 3.81x the risk as compared to SAVR.​

the only way I'd have a TAVR is if the only reasonable alternative was bad or death in OHS by SAVR. Of course for me with 3 OHS and a mechanical now TAVR is off the table.

Oh, and FAR more people than you'd like to think report "I was told TAVR would be my next" and believed it, then post here saying they had SAVR again because their anatomy wasn't suitable. Bait and switch in my view.

be VERY particular with words when reading

The internet said lifespan of the device is about 10 years

look for "up to" ... or as much ... its done deliberately. Just like supermarkets sell things at $9.99 because that's read as 9 bucks by most people, but yet its functionally 10. Wording matters a lot. Read all studies like a contract.

Here is an example of how I read in what is called "critical analysis" method. One more here on another topic.

Do you have to drink something for that?
in my experience its always an injection of dye or nothing. They ask about kidney function first. I guess I've had about 10 or 20 of them over the years.

I just want to say thank you for the response. Sometimes it is good to just talk about it and my wife always ends up in a google spiral. She loves PubMed
Totally welcome ... and tell your wife to restrict her searching to google scholar:

https://scholar.google.com/

door is always open here.

Best Wishes
 
Last edited:
Good morning

to my mind (as an Australian not an American) I want to emphasise the following points
  • I believe that guiding younger people to TAVI is unethical and using them as "meat on the slab" for data gathering
  • having had 3 OHS I can say minimally invasive is not shaping up as having any benefits in the long term, makes no less scar tissue where it counts (meaning around the heart) and you REALLY want to avoid multiple reoperations.
Yes, they make TAVR sound harmless. I didn't even realize there was scarring around the heart from it. I am glad I found this forum and people who have been there and know the actualities of it.
you should really seriously look at the validity of the view of avoiding anticoagulants. Warfarin is actually not what the mainstream opinion makes it out to be, and in the main is related to incompetent handling of management of INR.
Good to know about Warfarin. I mean I'm already taking a couple, what is one more. LOL
Also you should actually read the details of reports (not just what the choose to put into Abstracts. An analysis here:
https://www.valvereplacement.org/th...tudy-published-may-22-2024.889599/post-933535

The findings are striking:​
"ViV-TAVR was associated with higher rates of late mortality and heart failure hospitalization."​
Not slightly higher, but much higher:​
"no difference in mortality was observed up to 2 years (hazard ratio, 1.03; 95% CI, 0.59-1.78), but after 2 years, ViV-TAVR was associated with higher mortality (hazard ratio, 2.97; 95% CI, 1.18-7.47) as well as with a higher incidence of heart failure hospitalization (hazard ratio, 3.81; 95% CI, 1.57-9.22)."​
I get it, the studies were VERY limited also, and only had follow up of ONE year. They did state that in the abstract. ;)
That is correct. 2.97 hazard ratio for valve in valve TAVR vs SAVR after year 2 for all cause mortality. That represents a 2.97x greater rate of mortality. Incidence of heart failure hospitalization was also striking at hazard ratio of 3.81 for TAVR= 3.81x the risk as compared to SAVR.​

the only way I'd have a TAVR is if the only reasonable alternative was bad or death in OHS by SAVR. Of course for me with 3 OHS and a mechanical now TAVR is off the table.

Oh, and FAR more people than you'd like to think report "I was told TAVR would be my next" and believed it, then post here saying they had SAVR again because their anatomy wasn't suitable. Bait and switch in my view.

be VERY particular with words when reading



look for "up to" ... or as much ... its done deliberately. Just like supermarkets sell things at $9.99 because that's read as 9 bucks by most people, but yet its functionally 10. Wording matters a lot. Read all studies like a contract.

Here is an example of how I read in what is called "critical analysis" method. One more here on another topic.


in my experience its always an injection of dye or nothing. They ask about kidney function first. I guess I've had about 10 or 20 of them over the years.


Totally welcome ... and tell your wife to restrict her searching to google scholar:

https://scholar.google.com/https://scholar.google.com/
To be fair she does do scholarly articles, but yes, in the abstract form. Thank you for the analysis information, I think she will really enjoy that. She knows she isn't a doctor and a lot of what comes through in the studies is beyond her, no matter how smart she is. HAHA

I forgot, today is Saturday, no one there to make an appointment with. *shaking my head*
 
Hi

Yes, they make TAVR sound harmless. I didn't even realize there was scarring around the heart from it.
just a quick point, please re-read what I said because you've conflated two distinct and unrelated points. I did not say TAVR causes scaring around the heart, I said SAVR does and in particular I was talking about minimally invasive.

I'm saying this not to be a prick, but to emphasise the high importance of reading whats is actually written and not just an impression of it all. This is a very common problem and something that in education we focus on.



Good to know about Warfarin. I mean I'm already taking a couple, what is one more. LOL
yeah, and perhaps warfarin (or some other ACT) will be in your future as you age anyway.

A worthy listen

1720909694957.png

click the image or click this link to play that

https://bi.medscape.com/pi/editorial/studio/audio/2015/core/838221.mp3

I get it, the studies were VERY limited also, and only had follow up of ONE year. They did state that in the abstract. ;)
if only it was limited to that ... as chuck said; they say "no differences" but yet they show differences ... its like the cop saying "nothing to see here, move on".

There is a LOT (a huge amount) to learn to properly read and interpret studies. I've done a blog post on that
https://cjeastwd.blogspot.com/2021/07/done-my-research.html

but in particular if you do nothing else watch the Sabine video linked in there.

...Thank you for the analysis information, I think she will really enjoy that.

the devil is always in the details. The salesman for the insurance contract says whatever he needs to say to get the sale, but the contract it what happens and what is covered.

People seldom read those, but because a heart operation is important (life critical) they (late in life) have their first go at it. I believe quite a lot of "over confidence" in assessing their ability to read and understand goes into the misunderstandings which we see.

She knows she isn't a doctor and a lot of what comes through in the studies is beyond her, no matter how smart she is. HAHA
I'm not a doctor either ... I just take my time and do my best. I have the advantage of having done some degrees and written a thesis for my Masters (Environmental Science). Here's the thing, if you ask a doctor about
  • anticoagulation management
  • dose titration
  • handling exceptions
you'll see a gaping fish impersonation.

I forgot, today is Saturday, no one there to make an appointment with. *shaking my head*

well its Sunday here, so even fewer ;-)

Best Wishes
 
Hi


just a quick point, please re-read what I said because you've conflated two distinct and unrelated points. I did not say TAVR causes scaring around the heart, I said SAVR does and in particular I was talking about minimally invasive.

OK. I have to read more to understand the differences between the procedures. I was thinking that pushing the device up through the femoral artery somehow scarring was caused when manuevering it into place. There would of course be normal scarring in any procedure. The scarring I am currently concerned with is the existing scarring from my childhood surgery. They cut through so much inside my chest cavity.

I'm saying this not to be a prick, but to emphasise the high importance of reading whats is actually written and not just an impression of it all. This is a very common problem and something that in education we focus on.

I know I need to slow down and digest what I am seeing more. The US only focuses on creating governmental slaves of its people in our education.

yeah, and perhaps warfarin (or some other ACT) will be in your future as you age anyway.

A worthy listen

View attachment 890375

click the image or click this link to play that

https://bi.medscape.com/pi/editorial/studio/audio/2015/core/838221.mp3


if only it was limited to that ... as chuck said; they say "no differences" but yet they show differences ... its like the cop saying "nothing to see here, move on".

There is a LOT (a huge amount) to learn to properly read and interpret studies. I've done a blog post on that
https://cjeastwd.blogspot.com/2021/07/done-my-research.html

but in particular if you do nothing else watch the Sabine video linked in there.



the devil is always in the details. The salesman for the insurance contract says whatever he needs to say to get the sale, but the contract it what happens and what is covered.

People seldom read those, but because a heart operation is important (life critical) they (late in life) have their first go at it. I believe quite a lot of "over confidence" in assessing their ability to read and understand goes into the misunderstandings which we see.


I'm not a doctor either ... I just take my time and do my best. I have the advantage of having done some degrees and written a thesis for my Masters (Environmental Science). Here's the thing, if you ask a doctor about
  • anticoagulation management
  • dose titration
  • handling exceptions
you'll see a gaping fish impersonation.



well its Sunday here, so even fewer ;-)

Best Wishes
I will make sure I check out the information you posted. I appreciate it.
 
The scarring I am currently concerned with is the existing scarring from my childhood surgery. They cut through so much inside my chest cavity.
Iterative surgeries from my childhood made my third surgery at 48 challenging. Advances in medical imaging helped plan that. I was cautioned to be cavalier about planning a fourth and so it was pretty obvious to me that a mechanical was my best choice.

Out doing a few things at the moment. Always take some time out to enjoy a motorcycle ride when the weather has been crap for a week.

Best wishes
 
Last edited:
Iterative surgeries from my childhood made my third surgery at 48 challenging. Advances in medical imaging helped plan that. I was cautioned to be cavalier about planning a fourth and so it was pretty obvious to me that a mechanical was my best choice.

Out doingbanfew things at the moment. Always take some time out to enjoy a motorcycle ride when the weather has been crap for a week.

Best wishes
I spent much of yesterday cleaning up hurricane debris. I usually feel normal besides my extreme fatigue, but not having A/C due to the power being out was tough. It was a little scary, how badly I felt. My wife's employer came through for us though. They sent her to the back up control center 4 hours away where they still had power and got our whole family a hotel room. Before that when she told them what was going on they told her to bring me and the kids to the control center here since the building has very good back up power and good air conditioning. (It houses many data centers and sensitive equipment.) Most businesses here could care less about their employees. There were no hotel rooms available within two hours of us, we live in the Houston area so there are MANY hotels. LOL We've only been in Texas a couple of years, but now a generator to at least power a window unit to keep one room cool (and the refrigerator) is a priority. We can't get a whole home generator because we are currently renting.
 
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