Life Expectancy after Valve Replacement

[Paleowoman]

The big thing Noctume is to find the reason why you need aortic valve replacement. I remember you posting when you first joined the forum - you siad you don't have bicuspid aortic valve, you implied that you have some level of heart disease aka athersclerosis and calcification of your aortic valve ? Is that right ?

A person who has a congenital valve problem such as bicuspid aortic valve should be otherwise healthy, and once the valve is replaced there should be no more problems for them unless the valve faiis at which point it is replaced. If, on the other hand, a person develops heart disease or altherosclerosis or degenerative calcification of their aortic valve they have the added burden of the continuing "disease" process even after the valve replacement - hence they may have a shorter life span due to that continuing disease process. That's how I see it. You have to know the reasons for the valve replacement to correctly interpret post AVR mortality.

 

[rakesh1167]

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.

It was hard for me too. This fear of death exist only in our mind, it has no existence outside it. In my opinion you could try mind calming techniques like meditation, it helped me a lot. Our brain can make a mountain out of this thought of death if we don't control it.

Even if we reach 80 years age, we are not gonna be like "Hey i am 80 now(with a smile on my face), let's go and die".
Sooner or later everybody has to face it.

 

[Nocturne]

Paleogirl -- yes, no one indicated bicuspid valve for me, I was told I had aortic valve sclerosis and stenosis. I had been asking for a coronary CT scan, which both of my docs had pooh-poohed the idea of at my age, and the sclerosis/stenosis diagnosis (from an echocardiogram my PD ordered after hearing a heart murmur that he was sure was nothing serious) enabled me to convince one doc to order the CT scan for me, which revealed a calcium score of 156 when a man my age should have a 0 (and a score of 50 is in the worst 10%). My heart is a train wreck and I didn't even know.

I appear to have a genetic predisposition to having shitty lipid levels, which I didn't know about, and on top of that I have not lived with health in mind for the last 16 years or so. My bad for not getting my lipids checked all of those years, but then a lot of guys don't get their lipids checked through their 20s and 30s, because for most people they are relatively fine. For me -- even now that I have lost the weight and exercise every day, I still have crummy numbers with LDL a bit higher than the range and HDL a bit lower than the range (dyslipidemia). If I had known... But I didn't know.

Rakesh -- it's not that I'd necessarily be ready for death by a certain age, but I've gone through life assuming I'd make it to 85 or so, and planning for things like meeting my grandchildren, enjoying my retirement, etc. Perfectly reasonable things for the average guy to plan for. Now, when they come up in conversation or my mind... I have to adjust to the likelihood of my not being around to experience those things. And that hurts. OTOH knowing the likely truth makes me less likely to, for example, bust my hump working a job I'm not sure about for the next 20 years primarily because I like the retirement plan, since I'm not likely to live to enjoy it. Do I really want to be working this job until the day I die? Something to think about, now.

 

[neil]

nobody knows what tomorrow will bring, you can read all the data you like and get knocked over by a bus lol,,we do the best we can make the best choices we think and leave the rest to whoever pulls the strings, we can get bogged down sometimes and miss the whole point, we are here just once so try to enjoy the journey, oh yes and ear plenty of choocy lol

 

[pellicle]

Hi

Pellicle, what I have done is present actual studies and articles featuring actual data on the observed

Indeed , but you have not done much more than just re-present the findings of others. You have not engaged with that research one bit. You have done the most circumspect literature review and if you were doing a masters where you would learn about research then your work would be criticised to better undertake analysis of that which you present.

Your cite things as if they were "the gospel truth" yet the truth is more complex. You are just repeating their conclusions and not in any way questioning them or thinking outside of the box. You seem to be clearly wanting to find that as the truth.

You seem also to forget who you are talking to in here. Sure there are many in the waiting room, but many more of us have gone through the mill and dealt with being ill, severely challenged, suffering and many other things that life throws at us. Your tone seems to reek of "feel sorry for me because I've got "HEART DISEASE". Well that may earn you sympathy with the public but not in here sir.

Further, on that research, you have not engaged in discussion with me on my points (such as asked questions) ... that is not research that is repetition. A parrot can do that. So are not really a researcher just a "seeker of factoids" which you use to justify your position of "I may not live to 85". Like that's horrible?

If you look for a bleak outcome then please by all means wallow in that. I have attempted to show you that its not bleak and that you have not only life now, but real possibility to be outside those stats. How do you repdond? You side step every point an focus on the darkness. Look into Neil's response posted again below for a different way of saying my same thing I am saying.

nobody knows what tomorrow will bring ...we can get bogged down sometimes and miss the whole point, we are here just once so try to enjoy the journey

My focus is on living my life as best I can, not on how long it is. You seem obsessed with counting the years you have left rather than focusing on how to enrich yourself and make your life happier and more meaningful. Perhaps you are so shaken by the discovery that you are mortal that you are somehow in shock.

You are welcome to your bleak view, I will no longer attempt to dissuade you from it as you seem enchanted with it. But I do hope you come around to see the sunrise and stop looking up dark places.

Death comes for us all, of that there is no doubt or certainty of when .. what will you do in the mean time? Bitch about it not being 85 years and whine about the dud hand you got dealt?

My friend is 34 and dying from MS ... I've already had two of my best friends die of cancer ... so to me quit whining and realise you got a better hand than you could have.

 

[neil]

spot on pellicle

 

[JulienDu]

As long as I can die with a heart attack in bed having sex, I would be fine dying sooner than average.

 

[Nocturne]

Pellicle, I think that you are probably right that it isn't worth going around and around on this with each other.

I posted what I did initially because I had hoped that someone could refute what I was seeing with hard evidence to the contrary. To date, no one has been able to.

I think that if I ever find myself looking back on my life from the age of 80 or so, I will probably have a very different perspective on this issue, too.

I am sincerely happy for you for your long life post-AVR. May everyone here enjoy as much.

I will leave with one more study, that has a bit more in the way of positive conclusions (although still revealing a lower life expectancy for AVR recipients as compared the their like cohorts in the general population:

http://www.sciencedirect.com/science/article/pii/S0735109799005847?via=ihub

"Early mortality after AVR (death within 30 days) was 5.6%. Relative survival rates (excluding early deaths) after 5, 10 and 15 years were 94.6%, 84.7% and 74.9%, respectively. There was an excess risk of dying during the entire follow-up period."

The two most important factors contributing to relative mortality were age at time of first AVR (the older the patient, the closer to a normal lifespan they could expect to have), and the presence of atrial fibrillation (which of course made things worse).

This is based on a smallish cohort (about 2000 AVR recipients), and the operations were done between 1980 and 1995 -- so you might say it was ancient history, medically speaking.

 

[Nocturne]

Note that "relative survival rates" are survival rates in relation to the survival rates of the general population (matched for age). These relative survival rates go down the younger you are when you have the surgery, and up the older you are when you have the surgery (for the first time).

So a relative survival rate of 75% doesn't mean an observed survival rate of 75% -- it means a survival rate that is 75% of that of the age-matched cohort in the general population.

 

[Paleowoman]

Hi Noctume - I wonder if you do read properly any of our posts and any of these studies you post links to. This latest one appears to be mainly focused on elderly patients with AVR which would imply, though it doesn't say in this study, that they had degenerative calcification of their aortic valve which is the most common reason to do AVR in the older age group. A good study would have listed the pre-operative characteristics of the patient and that relation to mortality, whether they had degenerative heart valve disease or congenital defect, the only thing they implied contributed to early mortaliy was AF pre surgery and CABG.

 

[Nocturne]

I would concede that an analysis of the data comparing bicuspid vs calcific stenosis would have been informative, and that that was not done here. Given the ages involved it would seem that most of the recipients in the study had calcific stenosis; but for me, that is more relevant, as that appears to be the type I have.

(And yes, calcific aortic stenosis at the age of 42 is exceedingly rare, most likely brought on by an unfortunate combination of lifestyle and genetic factors. I did have a nasty bout of scarlet fever as a child, too, which might not have helped matters.)

 

[pellicle]

Hi

Pellicle, I think that you are probably right that it isn't worth going around and around on this with each other.

agreed ... especially when you aren't interested in listening / evaluating / thinking / discussing.

I posted what I did initially because I had hoped that someone could refute what I was seeing with hard evidence to the contrary. To date, no one has been able to.

given that you've not provided any HARD evidence and given that you have ignored the discussion on the flaws with those studies and given you seem to accept that problematic and unclear study as HARD EVIDENCE then I would conjecture that you are not interested and prefer to be concluded that you've been cheated some years.

you will likely dismiss this as being too small a cohort, but here is one bit of "HARD" evidence

http://levantineheritage.com/pdf/Robert_Baker_info.pdf
or
http://www.valvereplacement.org/for...-world’s-longest-living-heart-valve-recipient

as I said earlier, the studies you mention fail to correctly stratify the quality of health that each person had to begin with. So as a result those studies are only useful when viewing things from a narrow manner of thinking. You need to step outside the studies and examine the premises (which I see no evidence that you have done, certinly not in any conversation with me).

Dick would also be a good person to provide evidenence although I expect he would be discounted by you as not having had bicuspid valve.


Your comment:

I am sincerely happy for you for your long life post-AVR. May everyone here enjoy as much.

smacks of mocking irony especially given that I'm only 52 ... and somehow fits with your highly inappropriate comparison earlier:

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.

which entirely discounts the human suffering that those poor bastards went though to just amorally look at their quantity of years. Seldom do bicuspid valve patients suffer as they did.

You are seemingly obsessed with "how long will I live" .. you seem to have not read and disgested any of my points or my blog post on this.

Its quality of life that matters to me and having watched my mum live to 77 with the last 10 years as a husk with ahlzimers I can't really say I value quantity over quality.

Frankly I don't care if I die tommorrow (or even on the way to work this morning). I will defend my life and battle for my health, but I'm not begging God for more life, I'm living my life best as I can (which isn't always good after my wife died) every fucking day I have.

I have already told you how to examine the reports, I have already told you the flaws (as has Eps and others) ... discussing this with you is like discussing with a Muslim that he wants Hard Evidence that Mohammad didn't write the **** he did. Science doesn't work that way: religion does.

Best Wishes

 

[avr8913]

I struggled with the studies and mortality rates at first, too. The reality is, there is simply not enough data to truly understand what it means for each person. There are simply too many variables not taken into consideration.

The truth is, without the surgery, you die. With it, you live longer, but there is too small a sampling with too few variables to know with any certainty how much longer.

Some folks get through surgery, have no other heart disease, no side effects from having their heart cut on, and live quite normally. Others have differing issues, their heart reacts to the surgery in different ways, and simply do not live as long.

I have either pre or type 2 diabetes, a mechanical heart valve, and I have come to realize a lot of how much longer I live is up to me. I wound up with pretty bad pnemonia for the first time ever, last year. Due to my age or my heart, I simply need to sleep more or get more rest than I did before. I monitor what I eat and make sure I walk some every day. If I do not, I know I will wind up with some type of complication that will finish me off.

I am 47, had the surgery at 44, and never knew I had a functionally bicuspid valve. While the data can be depressing, like most things, a lot of it depends on the effort you expend to understand your own personal variables and then use that info to beat the statistics.

 

[Nocturne]

Pellicle, your presented story of one man who beat the odds is interesting and uplifting. It doesn't say much about general outcomes, though, as I'm sure you already know.

I had thought that you were 80 years old, and had had your AVR done close to 40 years ago. My mistake. Perhaps I was confusing you with someone else here.

Your comment that the studies I have presented do not account for heart health and age at time of surgery leads me to believe that you did not actually look at the most recent one I posted, which does in fact do both of those things.

You are free to ignore the uncontested findings of study after study after study. It is your right.

 

[neil]

nocturne maybe its just that people have different views etc , me and pellicle go away back and as he and a few on here can confirm we had a fair few run ins , but I now consider him a good guy who supplies a lot of help and info for lots of people, even though we don't always see eye to eye lol, I now consider him a valve buddy,

 

[Nocturne]

I don't have a problem with Pellicle, I think he's basically a good guy who is trying to help people too. But we don't see eye to eye on this issue. No problem, that's life.

I read the last study I sent along in this threat more carefully today, paying special attention to the heart health/functionality angle. In that study, AVR recipients with high functioning hearts (according to the scale used, the New York something-something, which I read about further -- basically, the top functioning hearts could actually have some heart disease but no or only very mild symptoms -- I would currently qualify) had survival rates that were 90% of the norm at 15 years. That's actually not too shabby. Granted, this ignores the age issue (where younger recipients stand less of a chance of living an average lifespan than older ones do), but it's not too shabby.

The two biggest impediments to living a long life with AVR I could see in that study were having the operation done at a young age and having atrial fibrillation. If you look at the chart they have given for recipients with A-Fib, it is pretty clear that you do NOT want to be dealing with A-Fib while having a prosthetic aortic valve.

For me, this means taking the best care of my heart that I can, and exploring more about possible methods of slowing down the progression of the AS. Mine is "very mild", a smidgen below the official criteria for diagnosis, with (for example) a peak aortic velocity of 2.3 m/sec. There have been studies showing that statins don't help slow the progression down for people with calcific AS, but all of the ones I have seen have noted that they didn't include patients in the very early stages of the disease, so it might be worth it for me to try to suppress my LDL cholesterol as much as possible, by any means possible, in hopes of slowing things down (because, if nothing else, it is apparent that staving off the need for surgery for as long as possible is going to give me the greatest chance of living a more normal lifespan).

 

[dick0236]

........For me, this means taking the best care of my heart that I can, and exploring more about possible methods of slowing down the progression of the AS. Mine is "very mild", a smidgen below the official criteria for diagnosis, with (for example) a peak aortic velocity of 2.3 m/sec. There have been studies showing that statins don't help slow the progression down for people with calcific AS, but all of the ones I have seen have noted that they didn't include patients in the very early stages of the disease, so it might be worth it for me to try to suppress my LDL cholesterol as much as possible, by any means possible, in hopes of slowing things down (because, if nothing else, it is apparent that staving off the need for surgery for as long as possible is going to give me the greatest chance of living a more normal lifespan).

Good advice to yourself. I am a hospital volunteer that visits heart surgery patients after they have gone thru the surgery. Five of every six patients I talk with are bypass surgeries.....not valve surgeries.....altho you can't tell it by looking. Almost all have the "zipper", tubes and the "heart pillow" for holding your chest together when you cough. Plus they have scarring of the legs where the surgeon "harvests" the vein(s) used in the bypass. Frankly, that surgery would scare me more that valve surgery. Keeping your plumbing clean will probably keep you off the operating table longer than worrying about the valve issue.....which your cardio told you might be twenty years down the road.

 

[Midpack]

Both Pellicle and Nocturne have made valid points, IMO. But i have to admit that i come to this forum looking for some relief and support, so I clearly prefer optimistic views. As patients, we should avoid negative feelings as much as possible. They do not only harm our mental condition, leading to anxiety and depression, but also our pshysical one.

 

[pellicle]

Nocturne

You are free to ignore the uncontested findings of study after study after study. It is your right.

why, thank you (although I did read them I just found ZERO engagement from you on the points I raised so I didn't see the point in wasting more and more of my time).

Equally you should feel free to ignore my messages of encouragement to you of

• "we know nothing of our futures" and
• "live your life as best you can" and
• "focus you time on how to improve your life rather than focus on studies which may not apply to YOU"
• quality not qantity

...it is your right. I was trying to turn you head away from "woe is me" and you seem to stubbornly focus on "how soon you may die, this study proves it" .

Feel free also to ignore and make nothing of the examples you have (and I have given) of those who are already in their late 70's have had more surgeries than you and are healthy and happy. It is your right to call them "outliers" and ignore them from your analysis.

You deserve to make of your life what you want. happy or morose. How you live your life is a choice, not a study outcome, it requires effort not just reading or being a patient. That effort brings rewards in life that sullen depression does not. I've helped a few of the people I know battle depression and its not always done best with medicine, its done best with a positive view and getting out and doing stuff.

Soon I will be leaving my job and wandering. Why? Because staying in my job is not affording me time to exersize and stay healthy. Staying in my job (at a desk) is slowly killing me. When I do get old will I be able to buy the health I can build between now and then?

From where I sit, you're not appearing to make positive choices. They are there, you are just ignoring them ... which is your right.

Ball is in your court brother and only you benefit or suffer. We are here to help, but if you don't want it, then we can't give it.

 

[pellicle]

Nocturne what was even your point in posting?

You claim you were hoping others to find studies to "prove" your study wrong. You have been given hope, you have been given concrete examples , you have been given encouragement, you have been given guidance as to how to avoid being a stat.

As I said about my motorcycle riding (although you probably didn't read that) I could be a stat if I didn't make an effort. If I didn't undertake training and rider awareness I'd probably be dead or maimed by now.

You write as if the studies are "the word of god" yet they are just one researchers views on a data set - nothing more. You write as one who has not the slightest grasp of how to read scientific studies, I suggest you either learn how to or stop reading them. Nobody does studies into "how do valvers live longer" ... that's not what medical people focus on. They focus on the sick who are before them.

I have identified issues with all the data sets and albeit obliquely, identified methods of getting yourself out of the median of that data set. The data sets that form those studies have ranges, those on the longer end of the ranges will likely be those who were not sick or frail , but were healthy active people. You claim (I feel facetiously) that me and others here inspire you. Well be inspired - get up and change your life. You have the power ... indeed ONLY you have that power.

pick up the ball man...