Life Expectancy after Valve Replacement

[pellicle]

something else to read:

http://aats.org/valve/presentations/...bio%20AATS.pdf


pages 20, 21 and 22 are of most interest as a summary of the position

(PS: epstns put down your coffee first mate, you'll spray your screen again at page 21 ;-)

 

[Nocturne]

Pellicle, the information you linked to also seemed to be giving roughly 50/50 odds of surviving 15 years after AVR.

 

[dick0236]

I am still waiting to participate in my FIRST interview from any study regarding life expectancy or valve longevity. Pick the valve that best serves your circumstance and live with your decision. If you choose mechanical you'll be on warfarin until some new drug is developed but you probably won't need another surgery. If you are under 60 and choose tissue you probably will need a re-op down the road but you probably won't be on warfarin....altho you may need to take one of the newer anti-coagulants if you develop a-fib or other issue.

 

[Paleowoman]

Pellicle, the information you linked to also seemed to be giving roughly 50/50 odds of surviving 15 years after AVR.

Hi Nocturne - do read the cause of deaths in that study - they very possibly were not related to having AVR - for example you don't get cancer from AVR, nor myocardiac infarction, nor heart failure, nor pneumonia. Yes you might be more likely to get endocarditis or stroke from anticoagulants, but stroke is a pretty common cause of death regardless !

 

[pellicle]

Hi

Pellicle, the information you linked to also seemed to be giving roughly 50/50 odds of surviving 15 years after AVR.

I think you are reading these things the wrong way. The studies are not discussing the odds of surviving they are discussing which valve gives you the better odds of survival. The odds of survival depend on so many things and decrease as you get older. As Paleogirl mentions you could die of cancer, car accident ... all these things which are time/exposure related. The papers do not reflect YOU or me they reflect averages and they hope to be transferable to the broader population (or else they are meaningless).

There will of course be caveats. The chances are that lifestyles of people who have had valve replacement are different to the rest of the community (though they may not be). So when I see the graph on page 22 showing that in their study 15 year survival was 79% for mechanical valves I don't see "50/50". None the less : all that says is that of their group (mechanical heart valves) 79% were still alive 15 years later.

That's all it says. It is an inappropriate correlation to suggest that it means you have a 79:21 ratio of surviving 15 years.

I also immediately think that many of the subjects died because of natural causes. Look at their data sets, do you see "median age" of 20? or do you see median age of 60? That suggests that there are a number of the study population who were 70 at the start of the study (their surgery) .. is it shocking or even unexpected that at 70 some of them didn't make it to 85?

Explore this link:
http://www.worldlifeexpectancy.com/u...age-and-gender

you'll observe that in the 65 - 74 age group after heart disease Lung Cancers followed by Lung Disease (read smoking in the main) followed by Breast Cancer, then Stroke, then Diabetes represented quite a percentage of deaths. All of those would be reasons why there was only 79% around after 15 years.

For Australia it goes like this:

http://www.aihw.gov.au/deaths/age-at-death/

So as you get older the chances of dying increase ... even without considering valve surgery.

Think outside of the box (of valve issues) and think widely and think analytically

 

[pellicle]

Hi

I am still waiting to participate in my FIRST interview from any study regarding life expectancy or valve longevity.

good news doesn't sell well Dick , doom and gloom sells more papers.

 

[epstns]

If I read this guy the way he seems to want me to. . . I should have put my affairs in order the week after surgery.

On the other hand, I still believe that the "absolute" odds/percentages are less important to me than any difference between the percentages for the two cohorts. In other words, I am not comparing my "odds" to 100%, I am comparing them to the odds attributed to the opposing cohort. The differences may be real, but they are less alarming than most study publishers would have you think.

 

[MrsBray]

What a load of hooooooey! It's not a scientific article, and it's published by the person who owns the website. If you want real statistics, pass on webMD and Wikipedia and go straight to medical journals, Cleveland Clinic, or mayo Clinic. You know...REPUTABLE sources of information.

Regardless, none of us caused our own condition, we can't change it, and what will happen is out of our hands (for the most part,

Each day since my surgery has been a gift, a bonus, extra credit. I'll take it!

 

[Nocturne]

Maybe so, but I also wonder what the odds are of the same people living an additional 15 years even absent AVR. I'm sure it is less than 100%, and only the difference in survival rate is really important to me.

IIRC, the current US data for average life expectancies indicates that the average individual aged 65 now can expect to live to be 82. To me, that might mean that half will and half won't. If you look at it this way, the life expectancy isn't much different between the AVR cohort and the average group.

A good point, which might be answered here:

http://circ.ahajournals.org/content/103/11/1535.full

Look at Figure 6, which is a graph representing exactly what you are talking about. According to this, a patient who undergoes AVR at the age of 50 and never suffers any valve related events should have a life expectancy of about 75% of the norm. If average life expectancy is 85 years, he might expect to live to be 63 -- 13 more years.

 

[Nocturne]

Don't get me wrong -- I know that study was done 15 years ago, and must have used data from operations that were even older. But it's less rosy a picture than some try to paint.

And when we hear from folks who have survived 20, 30, or even 40 years after AVR -- that is fantastic news, and inspirational, but we also have to remember that the ones who died after 5, 8, 16 years -- they don't post much.

 

[Nocturne]

Compare to current longevity rates for HIV positive people, who really do live close to normal lifespans these days. From the looks of it, you'd be better off being HIV positive than having AVS. As I was a kid in the 80s, when HIV was essentially a death sentence, that is a sobering thought to me.

(And yes, if average lifespan can improve dramatically for HIV positive people over the span of a quarter century, surely it can do the same for AVS patients... But hoping for miracles of medicine yet to come is different from drawing conclusions based on facts).

 

[epstns]

As you noted, Nocturne, the data is old enough that it probably relates to second-generation tissue valves. The current (third-generation) valves are projected to have longer service lives than the previous ones. We will not know until the current generation valves are old enough to gather the actual data.

 

[Nocturne]

As you noted, Nocturne, the data is old enough that it probably relates to second-generation tissue valves. The current (third-generation) valves are projected to have longer service lives than the previous ones. We will not know until the current generation valves are old enough to gather the actual data.

Probably, although to what degree can they realistically expected to be better? Also, note that the study I linked to discussed the fact that AVR patients have a lower "background" life expectancy, meaning they have shorter average lifespans even when valve events are not taken into consideration (that would be the top line on the graph -- theoretical AVR patients who were "immune" to experiencing valve-related events).

Again, don't get me wrong -- some of you guys are inspirational, and hearing about men and women who have survived 30 or 40 years after valve replacement is awesome. But I *do* have comorbidity of CAD, or at least I will be very likely to, as my coronary calcium score is in the stratosphere for men my age (156, in the worst 1%). I'm scared. Terrified.

 

[dick0236]

D

And when we hear from folks who have survived 20, 30, or even 40 years after AVR -- that is fantastic news, and inspirational, but we also have to remember that the ones who died after 5, 8, 16 years -- they don't post much.

It all depends if you look at the glass as half full or half empty. The folks who die in their early post op years most likely have more going on rather than valve disease. When I was 30 my docs gave me a 10yr life expectancy without a valve replacement.......I chose the AVR.......and have now reached 80. A few years ago my doc told me I was gonna die.......of something......some day, but it would probably not be valve related. Count your blessings that medical science can now fix your problem. How you choose to live your life afterwards is your call....glass half full or half empty.

 

[pellicle]

Again, don't get me wrong -- some of you guys are inspirational, and hearing about men and women who have survived 30 or 40 years after valve replacement is awesome. But I *do* have comorbidity of CAD, or at least I will be very likely to, as my coronary calcium score is in the stratosphere for men my age (156, in the worst 1%). I'm scared. Terrified.

you are providing an example of "read into the data what you want" not "read the data and critically analyize it". So you are essentially falling victim to those who present a view of the thing and tell you its a circle.

What I have advised you to do it so examine the data from other dimensions and discover "hey, when I look at this differently its actually a cone not a circle, not a triangle". You are sticking to a very two dimensional analysis and thus are just lapping up the conclusion that the writer wanted to present.

You seem to fail to grasp that there are many interpretations of data sets. Agreeing with this study without analysis is the same as if you picked a bunch of sedentary lard arses who don't exersize and eat well, don't report that criteria and then say "look the people of XXX live shorter lives" .

If I just observed statistics as a motorcycle rider I'd be dead 20 years ago. I'm not dead yet because I behave differently. Equally you have failed (even though it has been suggested) to consider the age groups involved, that they are not "norms" because in all likelihood they represent people who are sick, frail and inactive. Dick, Eps and I are neither sick, frail nor inactive (and I think that'll go for GymGuy, SkiGirl and Heretic too). So ask yourself this question: are you sick frail and inactive? If yes then you'll be in that shorter lifespan (with or without valvular disease). Your talk about us being "inspirational" suggests to me you are not pushing your own envelope.

I don't know what CAD actually translates to in your case, but I'm sure that if you alter your lifestyle and incorporate healthy exersize levels you'll extend your life.

If you are a number then become one, but if you put yourself into the equation, examine the criteria then you can make changes to your life and live longer ... or you can just be a stat.

My view is that one has to stop being a patient and start being a person.

 

[pellicle]

also there is the issue of "what do we know" ... control is an illusion (perhaps even a denial).

http://cjeastwd.blogspot.com/2015/09...-delusion.html

I recommend you watch some movies and consider these philosophical concepts:
Blade Runner - wanting more life
Inception - giving up control and recognizing that discovering reality is not the point, its living life

Consider this question: what matters duration or quality?

If you were to live confined to a bed and exersized carefully and would live 150 years in a temperature controlled environment, would you risk losing 40 years of that to live life and smell the grass?

I have reflected on these ideas all my life (being a 5yo diagnosed HV patient, and having had the "blessings" of losing friends and loved ones to cancers early in their lives) throughout my life.

Myself I don't care if my bacteria are still in my chest (an unknown) because I live every day I have as if I will not live another. Every day is a gift, as yourself if you are making the most of that gift every day....

 

[epstns]

Oh, and lest we forget. . . IF (or when) our initial valve replacements start to fail, we still have the same treatments potentially available that we had in the first place. Do any of the studies consider serial valve replacements? If they do, how do they portray life expectancy for those patients?

My opinion (and it is just an opinion), is that whenever my replacement valve begins to show signs of deterioration, as long as I am strong enough to survive another valve surgery, I will have that option. Maybe TAVI, probably not. Nonetheless, there is a good chance that whenever my replacement valve begins to fail, it will give me warning in enough time to decide whether I want another replacement or not.

 

[Nocturne]

Pellicle, what I have done is present actual studies and articles featuring actual data on the observed longevity of AVR patients. Some of you have raised some important points, like looking at the age of the patients, or comparing their projected lifespans with those of people who have not needed AVR. And I've found other studies that do those things, and they all seem to be saying the same bleak thing.

I get that it's possible to misread the data, but if that is the case here, then actually telling me how I am misreading the data is much more useful than giving me an airy line about "look at a circle or triangle a different way and it's a cone!" You're saying that I'm misreading the data -- OK, how am I doing that? Or is that just something that people would like to believe?

I'd like to believe that I've got a normal lifespan ahead of me too! But I'd rather get the facts and make realistic assessments about my future than try to blow a rainbow up my butt. If I'm not likely to see my seventies, that sucks, but let me have that information instead of handing me a rosy illusion (which I believe my primary doc has tried to do).

I've seen articles and such online insinuating that AVR patients have normal lifespans, and all of them -- without exception -- either lack actual data or use weasel words like "comparable to a normal lifespan" or "approaches a normal lifespan". I can COMPARE myself to Michael Jordan by pointing out that we're both humans without ovarian cancer, but that doesn't mean that I'm Black, tall, or good at basketball. I can take two steps to the left and rightly claim that I have APPROACHED New York City -- doesn't mean I'm anywhere near the place.

If it's true that AVR survivors have normal lifespans, then there must be some studies revealing that information. Anyone here know of any? Anyone? Because I've found study after study and article after article indicating the opposite. If I'm wrong, there must be SOME data out there contradicting what I've found.

I can see why people might get riled up about this, because many people don't want to see the reality of their own impending deaths. And I can see -- concretely -- that at least SOME people here have made it 30, 40 years after AVR, which is great for them and great for me (because there is the possibility of a normal lifespan for me). On the other hand, if -- as you insinuate -- it's required for an AVR patient to become a health nut and engage in rigorous training in order to have a hope of living a normal lifespan -- remember that MOST people do NOT have to do that in order to make it to their eighties! Insinuating that rigorous training is needed for an AVR patient to make it to their seventies and eighties is a tacit admission that AVR patients have significantly reduced lifespans.

As I have shown:

http://www.acc.org/latest-in-cardiol...-young-patient

"Aortic stenosis, its cardiac sequalae, and its treatment all result in reduced life expectancy, regardless of therapy. The life expectancy after valve replacement varies with age, but life-table analyses of large datasets suggest the average life-expectancy of a 60 year old after aortic valve replacement is about 12 years."

Wish it were not so, but wishing won't make it so.

 

[rakesh1167]

Nocturne I agree with you here. So many research papers can't be wrong. I had AVR at 32 (couple of months back). I have accepted that my expected life is around 50-55 years. Would be great if i make it to 60. And i have made peace with it.
Some people have survived for 40-50 years after AVR, it doesn't mean everyone will. They could very well be exceptional cases. It is like a 110 year old saying "i lived till 110, you are also gonna make it to 110". I mean we are talking about averages here and not exceptional cases.
PS: I am grateful to this surgery. It has most probably extended my life span.

 

[Nocturne]

Thanks.

And it's not like there's no place for hope. If I'd contracted HIV in the mid nineties while I was in college, I'd have no doubt assumed that my life would be over before I made it another decade. But the truth is that new treatments that came out soon after would have been likely to keep me alive until now, with a full lifespan to look forward to. So we never know.

But for me, having had no health problems or warnings for the first forty years of my life -- learning all of this has been pretty hard. Pretty damn hard.