Ats Ap Valve in young adults

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Tryndamere

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Apr 23, 2019
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Hi all, I'm a new member who happened to find this site through googling/researching and have a list of questions that I cant find answers to...
Firstly, I was born with aortic stenosis and had a mechanical valve, ats ap, replaced when I was 18 years old. I just turned 31 and have been on warfarin 8mg daily. inr range roughly 2~3(surgeon said 2~2.5, cardiologist said 2~3, slight contradiction). I also have a history of migraine(not sure if its heart related) and recent mri showed 10 foci of scattered hemosiderin deposits which radiologist claims to be heart valve related, neurologists think its prior to valve replacement that it occurred. I am trying to see if anyone can guess what this might be and is this what people call a mini stroke which reduces life expectancy? neurologists have said these are minor and dont cause problems...my thoughts are, if inr too low, say 2, and if it is a stroke, then clots will form again and shoot up to brain. if one too high, say 3, then cerebral microbleeds. but since we dont know what the cause of these tiny microhamorrhages, what's the best cause of action?
next is I saw that a recent metanalysis on young adults with mechanical valve in which the article first says aortic stenosis life expectancy is halved for young people, then it says life expectancy for a 40 year old is 19 years(normally 34 years) after mechanical valve insertion, is that saying they die or need reoperation? if dying...then doesnt it mean our life expectancy is almost halved...
 

tom in MO

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I can't help with your first question, but you give good logic for staying in range. My INR for St. Jude is in 2-2.5 and I try to stay in range and believe that both high and low is not "good."

For the second question to quote the article: "Thus, a 40-year-old patient undergoing biological valve implantation today has a 20 year reduction in life expectancy, and, after 20 years, only 38% will be alive and without re-operation for valve deterioration. "

So it's after 20 years only 38% didn't need a re-operation or to put it another way; "62% needed a re-operation or were dead." The dead don't need a re-operation :)

Good luck. I saw a neurologist for the first time last month. It was hard to get an appointment.

 

Eva

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Welcome aboard.
I, personally, follow the advice of my surgeon which is 2.5-3.5. He also said I could go up to 4.0 (in my case)!

My INR once went up to 10 due to a new medication! I was fine. But, when it went once to 1.9 I had a TIA that affected my sight in my left eye...a grey curtain fell and I couldn’t see anything. Luckily, it was temporarily and my ophthalmologist said all was ok. When it happened, I checked my INR then and I increased my dose immediately.

As for rate of life expectancy, I don’t worry about it! One can die from any reason other than valves!
 

Tryndamere

New member
Joined
Apr 23, 2019
Messages
3
Hi all, I'm a new member who happened to find this site through googling/researching and have a list of questions that I cant find answers to...
Firstly, I was born with aortic stenosis and had a mechanical valve, ats ap, replaced when I was 18 years old. I just turned 31 and have been on warfarin 8mg daily. inr range roughly 2~3(surgeon said 2~2.5, cardiologist said 2~3, slight contradiction). I also have a history of migraine(not sure if its heart related) and recent mri showed 10 foci of scattered hemosiderin deposits which radiologist claims to be heart valve related, neurologists think its prior to valve replacement that it occurred. I am trying to see if anyone can guess what this might be and is this what people call a mini stroke which reduces life expectancy? neurologists have said these are minor and dont cause problems...my thoughts are, if inr too low, say 2, and if it is a stroke, then clots will form again and shoot up to brain. if one too high, say 3, then cerebral microbleeds. but since we dont know what the cause of these tiny microhamorrhages, what's the best cause of action?
next is I saw that a recent metanalysis on young adults with mechanical valve in which the article first says aortic stenosis life expectancy is halved for young people, then it says life expectancy for a 40 year old is 19 years(normally 34 years) after mechanical valve insertion, is that saying they die or need reoperation? if dying...then doesnt it mean our life expectancy is almost halved...
I can't help with your first question, but you give good logic for staying in range. My INR for St. Jude is in 2-2.5 and I try to stay in range and believe that both high and low is not "good."

For the second question to quote the article: "Thus, a 40-year-old patient undergoing biological valve implantation today has a 20 year reduction in life expectancy, and, after 20 years, only 38% will be alive and without re-operation for valve deterioration. "

So it's after 20 years only 38% didn't need a re-operation or to put it another way; "62% needed a re-operation or were dead." The dead don't need a re-operation :)

Good luck. I saw a neurologist for the first time last month. It was hard to get an appointment.

thanks for the reply, but I think you were reading the biological valve section. I was quoting the mechanical valve section which reads:
'they estimated that a 45-year-old undergoing mechanical valve replacement has a life expectancy of 19 years (compared with 34 years in the general population), and lifetime risk of thrombo-embolism, bleeding, and re-intervention of 18, 15, and 10%, respectively.
 

leadville

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they estimated that a 45-year-old undergoing mechanical valve replacement has a life expectancy of 19 years (compared with 34 years in the general population

@Tryndamere
Hi,

Is this the part of the report that worries you ?

This is an estimation of the findings, with well controlled INR you can find studies with better prognosis.

Hopefully someone will come along soon and address your questions in more detail
 

Tryndamere

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Joined
Apr 23, 2019
Messages
3
they estimated that a 45-year-old undergoing mechanical valve replacement has a life expectancy of 19 years (compared with 34 years in the general population

@Tryndamere
Hi,

Is this the part of the report that worries you ?

This is an estimation of the findings, with well controlled INR you can find studies with better prognosis.

Hopefully someone will come along soon and address your questions in more detail
Yeah this is the part, which studies have better prognosis? i have been searching for a while...especially focused on young patients though
 

Warrick

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Dec 27, 2015
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New Zealand
I can’t answer your first part but did read that report (mostly🤓) and it does say the results need to be interpreted cautiously, clearly youv had your valve for many years now so know the drill. Im 3 yrs in but I had my valve at 39yrs so near enough at the 19yr vs 34 yr life span group.
My father had AVR at 42 from childhood rhematic fever and he got put off work not long after due to doom and gloom with his health and hes managed to last 35 yrs unscathed with poor warfarin management, paravalvular leakage and an enlarged heart, so I think my future outlook is streets ahead of his situation.

As for the warfarin piece from that report-
“Randomized trials have demonstrated that the quality of vitamin K antagonist therapy can be optimized by self-monitoring and management by specialist clinics, but these approaches are resource-intensive, and even in the best of hands rarely achieve a time in therapeutic range >75%.”

Im running 84% in range at the moment and for me thats poor (cold meds, bit too much alcohol , and perhaps just not quite trying to micro-manage it as Iv done in the past because I dont feel I need to all mitigating factors),
I had migraine weekly before warfarin, which I now put down to a PFO causing mini clots as they are all but non-existant now.
 

leadville

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Messages
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Location
Wigan, England
In fact, there is some excellent data about life expectancy after heart valve replacement surgery from St. Jude Medical, one of the leading heart valve manufacturers. According to its research,
“the mean age of patients presenting for valve surgery is increasing, as is the life expectancy following valve surgery.”



Chart Showing Patient Lifespan After Heart Valve Surgery




If you look at the graph above, you can see that life expectancy ranges from 29.9 years to 14.3 years for patients experiencing heart valve surgery between the age range of 50 to 70.

While the graph above shares encouraging lifespan data for valve surgery patients, I have had the pleasure of meeting several patients that significantly stretched their life as a result of heart valve repair and/or heart valve replacement operations. Though this website and my book, I have spoke with many patients that had their surgeries 10-, 20-, 30- or even 40-years ago. Yes, you read that right! 40 years ago!!!
------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
You need to be careful, a lot of the studies are biased and include data from years ago.
50 is classed as young in this topic and this graph shows a 50 year old may live to 80

Its all ifs buts and maybes

We have @dick0236 here who has had his Mech valve for 51 years

A redo is more likely the younger you are
 
Last edited:

leadville

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Aug 28, 2017
Messages
182
Location
Wigan, England
the reason i mention old data is that an implant today can't truly be compared with old
methods.

the bias isn't me being suspicious just logical.
I have a st jude, the info i posted is from st jude.

i like what is says about my valve, i should make 80 ish
however i take that with caution as it's their own study.

You're obviously worried about dying young but the data suggests you're probably going to have
a redo at some point , not that you will die young.

Control your BP, manage your INR well, research and enjoy life
There are too many variables out of our control.

If you self manage INR already that's great, if not then seriously consider it.
( this may help mitigate against the TIAs you referred to )

we can only control what we can control...

best wishes
 

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