Life Expectancy after Valve Replacement

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Pellicle, your response illustrates further that you and I simply do not process in the same way.

I linked the most recent study because it made me feel better, and thought it may do the same for others who process as I do.

I expected the responses I got from the people who gave them, and was not disappointed.

If you truly question the value of honesty, openness, and accuracy, then I honestly do not know what to say. When my doc told me that AS was "nothing to worry about", "doesn't impact lifespan", and then, later, "you don't actually have AS", I could smell the ********. When he said that statins and the weight I had already lost would "freeze CAC progression", I KNEW he was bullshitting. I do not appreciate people bullshitting me in an effort to make me feel better. I realize that this is not how everyone thinks or feels, but it is how I feel and I sent along information for others who process as I do.

"It's all perception", "it's unimportant" -- these statements make zero sense to me. You and I do not process in the same way.

And I know damn well that average lifespan is not a box (although it always ends in one). My other grandfather suffered his first heart attack in his fifties, and at least one more before he died of heart failure five years ago at the age of 89, having also survived colon cancer (all of this I learned this week). No doubt his "average lifespan" would have given him far fewer years -- and he was healthy and active into his last decade, in the sense that he was independent and able to care for himself and help others. Likewise I see the folly in spending the last years of a life shortened by health issues crying over the years that were lost. I get it. Can you get that some people might just want -- even NEED -- to know the truth, and not settle for smiles, rainbows, and ********?
 
Nocturne, so what's the right way to respond to your comments?
If you notice, the people you accuse are 'having a go' at you are the ones who have bothered to respond.
I'd tell you you had your head up your arse, even if you were my brother.
 
tommyboy,

Somehow I missed the links you posted a page ago, and only noticed them this evening. Thank you for those. Definitely food for thought.
 
Agian;n868023 said:
Nocturne, so what's the right way to respond to your comments?
If you notice, the people you accuse are 'having a go' at you are the ones who have bothered to respond.
I'd tell you you had your head up your arse, even if you were my brother.

You seriously have no idea of your own how to communicate with someone who doesn't want happy rainbows blown up his ***? I have no idea how to help with that.
 
If there's one guy who understands about life "not being smiles, rainbows, and ********" I would say that is Pellicle. Neither in his life experiences or in his reliable forthrightness and honesty. If he just wanted to make you feel better, he's doing an incredibly inept job of it.

It would frustrate me if my doc refused to be straight with me, I hear that. It seems like that's what's really bothering you and maybe that lack of directness from medical providers is something you feel has hurt you before in life, or your family members. Maybe you need a new doc or to talk to your doc in a different way. "I need you to be 100% straight with me about the worst case, best case and likely scenario, that's what will help me deal with this." That's what I say because I would rather hear the worst upfront, then I actually am more peaceful. Most docs hate doing it because they think you'll worry and dwell on it. But if I explain that's what I need emotionally, most will do it.

I don't think the posters HERE are trying to blow smoke up your ***. Some honestly think you're reading those studies wrong. Others are saying you could get hit by a bus tomorrow, live your life. And some are shaking you, slapping you upside the head and saying you are in a bad place mentally with this. Maybe this helps: you might die younger. Duh. Getting your chest cracked open and having to risk medication side effects and infections and possible re-ops is hard on a guy. Don't stop saving for retirement though. Wear earplugs and sunscreen. You also might live.
 
Nocturne;n868026 said:
You seriously have no idea of your own how to communicate with someone who doesn't want happy rainbows blown up his ***? I have no idea how to help with that.
'Communicating' with you is not the only reason I visit the forum, and I therefore don't need your help with it.
Clearly wasting my time.
 
Nocturne;n868025 said:
tommyboy,

Somehow I missed the links you posted a page ago, and only noticed them this evening. Thank you for those. Definitely food for thought.

Wow. Now I'm trying to learn more about the Ross procedure. It seems like it isn't talked about as much as bioprosthetic and mechanical valve replacements. Why is that?
 
dornole, thanks, your words help, and I think you see some things that are true.

I'm a science person, I'm a data head, and my wife says I should have been an engineer. I think what I need is what tommyboy actually tried to provide with his links, which I unfortunately missed back when he posted them. Or at least something like that. I get the philosophy stuff and don't think it's unimportant -- but I need the data. It's just how I am.
 
Like the hugest datahead on this forum, Pellicle? But I think he knows from the school of hard knocks that data has limits. You've been searching for data on this life expectancy issue for months now and there have been links to published studies posted five ways to Sunday from many different people and it doesn't seem to be giving you what you need to feel like you know "the truth." Is there anything you think might help you more?
 
Nocturne;n868033 said:
........but I need the data. It's just how I am.

So, if an 8oz glass is filled with 4oz of water.......is it half full or half empty? And by the way, I like what dornole said...."don't stop saving for retirement 'cause you might just live". Cut yourself some slack, valve surgery is NOT the end of the world as you know it.
 
Hi

Nocturne;n868033 said:
I'm a science person, I'm a data head, and my wife says I should have been an engineer. I think what I need is what tommyboy actually tried to provide with his links, which I unfortunately missed back when he posted them. Or at least something like that. I get the philosophy stuff and don't think it's unimportant -- but I need the data. It's just how I am.

I too am a science person. I did my degree in Biochem and microbiol back in the 80s and I'm very data driven on many topics. Equally there is only so much you can generalize ... eventually when you've done enough analysis on your own data sets you see that there are always outliers.

I've said all this before (perhaps from different angles)

I've asked what the analysis brings to the table (and don't say certainty because its by nature not) ... and what it helps you with. You've never answered this question nor engaged with the questions I've asked before. So (as dornole asks) what is it you are actually seeking?

and just for the record if I didn't give a **** I wouldn't be bothered answering. I don't get my rocks of arguing and if I did I'd be able to be much more argumentative and irritating.

PS: there is to me a difference between a science person and a trained researcher ... I did a research masters in environmental science and did analysis of 200 years of weather data for that. One thing that's important in being a researcher is to identify your research objectives and your research premise.

I encourage you to research, but don't just be a Googler, be a researcher and have your goals and premise up front. As a researcher be prepared to properly defend your research objectives ... we are forced to do that doing our degrees ...
 
Nocturne;n868026 said:
You seriously have no idea of your own how to communicate with someone who doesn't want happy rainbows blown up his ***? I have no idea how to help with that.

mate, you have a serious attitude problem when you respond like this to people attempting to provide answers to you out of the goodness of their hearts.

Perhaps its YOU how needs to actually get their head around things and instead of demanding you be spoon fed answers the way you want to hear them, engage with people who are giving you their time.

Try engaging with the answers and seeing how they relate to the problem. Of course we all process things in different ways, but being petulant and dismissive of the help of everyone (like, lets see ... ****, Cldlhd, Agian ...).

Of course you and I process things differently ... we are different people. If you engaged with me instead of dismissing what I say maybe (just maybe) there is the possibility you can see things differently. Frankly the way you are seeing things now is not helping you.

actually mate I'm going to simply wash my hands here ... to me you just don't want any help.

You haven't had surgery yet and you're worried about dying ... get used to the fact that death is the only certainty and get used to the fact that stats and studies are not going to tell you your future. Tarot will do that.

to paraphrase:
learn to accept with serenity the things that cannot be changed,
develop the tourage to change the things which should be changed,
and acquire the Wisdom to distinguish the one from the other.

Living one day at a time,
Enjoying one moment at a time,

you seem to have none of these right now mate
 
Agian;n868028 said:
'Communicating' with you is not the only reason I visit the forum, and I therefore don't need your help with it.

Then why did you ask for it?

Agian;n868023 said:
Nocturne, so what's the right way to respond to your comments?
 
pellicle;n868043 said:
mate, you have a serious attitude problem when you respond like this to people attempting to provide answers to you out of the goodness of their hearts.

So my saying that I don't want happy rainbows blown up my *** is offensive enough to provoke comment, but his telling me that my head was up there -- twice -- is not? LOL!

It's OK. I know what is happening here.

I have a good friend who recently had his cancer relapse (he had been in remission for several years). We've been talking a bit about our health issues. He told me that he told his doctor that he didn't want to know what his odds of surviving to remission a second time were.

I live with an oncologist, and I know what sort of cancer he has, and I asked her what she thought, because *I* wanted to know. She told me -- in very general terms, of course, as she doesn't really know his particular case -- what his odds likely were.

Now I have an idea what his chances of survival are. I haven't told him -- I haven't even told him that I had a discussion with an oncologist about it -- because I respect his decision to not learn what his odds are. It likely isn't the decision I would make, but it's a personal thing, and I don't think he's "wrong" -- just different than me, and he certainly has the right to process this the way he wishes to.

Clearly, some people on this forum are like my friend. They know, of course, that their survival odds are worse than the average Joe's -- but, for whatever reason (and there are good ones), they don't want to delve into exactly what those odds are. And there is nothing wrong with that.

But there is nothing inherently wrong with wanting to know, either.

And that's where this conflict is coming from. Because in this forum, there is no way for me or anyone else to respect the wishes of those who don't want to see this matter discussed, while still discussing it, as is our wish.

I was pretty sure that this is what was going on before the latest link I posted, but now I'm certain. Because the latest link was not about me fretting and stressing about dying -- it was about sharing some good news that things were maybe not as bad as I had originally thought. A survival rate of 90% of the norm at 13 years for the 15-59 crowd! An 80% chance of living at least another 20 years! That's not as good as the general population, but a lot better that what I had read previously -- and this is a newer study. The 60-67 group at 90% of normal at 10 years post surgery -- a 50% chance of living at least another 16 years! Again, relatively good news!

But that good news wasn't seen by the people who didn't want to see it. Again, the same admonishments, which were out of place here. Responses borne more from emotion than reason. And that's OK -- death is a very private and emotional matter.

The thing is, I didn't post that link for those people. Given the number of people following this thread (far more than the 5-8 who have actually commented in it), I figured at least some of the readers might be people who wanted to know. I posted for them.

It is no more wrong for me to want to know with some accuracy exactly how this condition impacts my lifespan than it is for others to intentionally avoid the same. What is wrong is for me to force the conversation on those who don't want to have it -- but it's also wrong for those same people to coerce me into NOT having it. So we are at an impasse.

I wish it were different. But it is what it is.

Here is the best we can do: I will post this sort of information in clearly labelled threads, like this one. If you are a person who does not wish to see the matter of longevity and survival discussed, then do not read it. No one is forcing you.

You will not stop me from researching or discussing the matter. You will not. The best you can do is dogpile me every time I post something, perhaps in the hope of drowning the discussion. But you will not be able to stop it. I would ask that you please refrain from commenting if your only purpose is to bury the conversation in argument about whether or not it should be had.

I am sorry. If there was a way for me to discuss it without you seeing, I would do so. But I cannot.

For those people who might be curious, and might not have seen the linked study with more positive news because it got buried under all of these comments, here it is again:

http://icfjournal.org/index.php/icfj...load/138/pdf-2
 
Well from what I read it mostly looks like good news but as I didn't have my valve replaced but I did have my ascending aorta it probably doesn't apply to me. Also the study was based on the work of one surgeon in Malta.
I feel it's standard reasoning that in the whole having your chest opened doesn't make you likely to live longer than similar people ( age, weight diet, exercise etc..) all else being equal. However if you need the surgery it'll make you live longer than if you don't get it done. It's not like changing a light bulb or one of those nice, neat illustrations of the surgery.
 
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