Not Sure How To Feel - But Mostly Fear, Shame, Selfishness And Guilt Right Now

[pellicle]

There is some evidence that ...
... I needed to know something concrete. The truth is,
... And best of luck.

Your above answer provides the core points.
Some evidence (but only some)
Nobody knows anything concrete, we only have greater certainty about one or two of the variables.

the car accident on the way home from the specialist may be what kills you anyway.

Control is an illusion and chance provides the most decisive outcomes.

I agree to inform yourself, but informing yourself means moving towards knowing the following:

... the serenity to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference​

 

[Agian]

Nah, just keep repeating that everything's fine.

https://m.youtube.com/watch?v=g3qkbc28R_I

I try not to infect people with misery, so I don't feel alone.

https://www.youtube.com/watch?v=lQem15Ow6hw

 

[Nocturne]

the car accident on the way home from the specialist may be what kills you anyway.

Yeah, I never got this one. If an ordinary person my age could expect to live another 40 years or so, and I get told that I have a condition that means I can only expect another 25 years or so, "But don't worry -- you could still die in a car accident tomorrow" seems like a pretty bizarre and ineffective condolence. I know that's not how you mean it, but it is how it comes across.

To the OP -- you can see how skittish the people around here get about this topic. They're all scared of it. It makes them uneasy and they often try to "bury" it under chatter about this and that when it comes up. It's OK, it's how they deal. My point stands -- your odds of making it to any given age are going to be less than a normal person's, but they don't seem to be particularly terrible from the information in that study (although there are plenty of other sources and studies with more dismal data, those are typically older studies regarding patients, procedures, and care from longer ago).

And please -- don't just discontinue T treatments before you talk to the guys over at www.peaktestosterone.com -- they're a great source of information, and low T is no joke.

 

[Agian]

I hear they're looking for a moderator on brainreplacement.org

 

[jwinter]

I hear they're looking for a moderator on brainreplacement.org

lol@Agian

I can assure the OP that all here are not airy/fairy feel good crap people. We all have heart valve issues and have stories to share to hopefully help others. As you can tell by reading the posts here, there are a lot of different personalities also.

Use this forum for increasing your knowledge. The search field has a lot of information. Get on board with your doctors and then trust them. If you do not feel comfortable with one, pick another but at some point you have to trust someone as this is too much for you to handle alone. Be proactive.

I wish you the best and hope you continue to post here.

 

[Nocturne]

I hear they're looking for a moderator on brainreplacement.org

What exactly do you mean by that, Agian? Is it just a matter of calling me "stupid" because you disagree with my viewpoint but have no real argument against it?

 

[Agian]

What exactly do you mean by that, Agian? Is it just a matter of calling me "stupid" because you disagree with my viewpoint but have no real argument against it?

1) I don't think you're stupid just because I disagree with you
2) There's no point in 'arguing' with you (see 1)

 

[Agian]

Duplicate.

 

[cldlhd]

Of course all else being equal having a valve issue doesn't increase your odds of hitting 90 but for those born with bav you cant control that. I know it's difficult not to think about it but imagine if you do live to be 90 and look back and realize how much time you wasted worrying about dying young.

 

[dick0236]

.........imagine if you do live to be 90 and look back and realize how much time you wasted worrying about dying young.

Amen to that!! I was one of those who thought life would be short after the surgery. I was much more pessimistic than some on this forum and was sure I'd die after about 20 years from surgery.......didn't happen. The sad thing is that, like cldlhd says, I wasted a lot of time worrying about dying too soon.....didn't happen. Now I'm beginning to think about all the stuff that kills ordinary people in old age, so........"if it's not one thing it's another". I am not a religious man but the Serenity Prayer makes a lot of spiritual sense.....look it up.

 

[Nocturne]

Amen to that!! I was one of those who thought life would be short after the surgery. I was much more pessimistic than some on this forum and was sure I'd die after about 20 years from surgery.......didn't happen. The sad thing is that, like cldlhd says, I wasted a lot of time worrying about dying too soon.....didn't happen. Now I'm beginning to think about all the stuff that kills ordinary people in old age, so........"if it's not one thing it's another". I am not a religious man but the Serenity Prayer makes a lot of spiritual sense.....look it up.

Probably if I make it to 80 I'll feel exactly the same way you do.

 

[dick0236]

Probably if I make it to 80 I'll feel exactly the same way you do.

Nocturne, you just proved my point. I couldn't know and you can't know.....that's the point.

BTW, don't cheat me outa my hard won years.....I'm 81 not 80 LOL.

 

[Nocturne]

Nocturne, you just proved my point. I couldn't know and you can't know.....that's the point.

BTW, don't cheat me outa my hard won years.....I'm 81 not 80 LOL.

Respect -- I forgot you were 81. Congrats!

Your point seems to be that we can't know when we'll die. I never disagreed with that point. BUT...

I'm assuming that you're not expecting to see 200. There is a reason for that.

When you see a 20 year old kid, you probably expect he's got a long life ahead of him. There is a reason for THAT.

When I turned 40, I had a reasonable expectation that I'd see 78, even if I wasn't taking particularly good care of myself. If I was lucky, I might see my nineties.

After learning about AVS, super-high CAC, and mutant level Lp(a), the expectation shifted to something else. Maybe I'll see my 60s, IF I live for fitness and deny myself a lot of the things I enjoy. If I'm lucky (and very strict about diet and exercise), I might see my seventies, or even kiss the start of my eighties.

Do you see the difference there? It's subtle, but it's a real thing.

Edit: If the only thing that was wrong with me, personally, was AVS, I might be more inclined to expect more (look at the study I linked to earlier). But unfortunately it is not, I have a systemic issue rooted in sky-high Lp(a) that is caused by genetics, and for me the high CAC and AVS (while issues in and of themselves) are really just symptoms of a greater problem. And the medical establishment is still picking its nose and tasting what it pulls out when it comes to recognizing this issue, let alone treating it.

 

[dick0236]

......After learning about AVS, super-high CAC, and mutant level Lp(a), the expectation shifted to something else. Maybe I'll see my 60s, IF I live for fitness and deny myself a lot of the things I enjoy. If I'm lucky (and very strict about diet and exercise), I might see my seventies, or even kiss the start of my eighties......

.

That's a pretty good formula for anybody that wants to see 80.

BTW, always stay in the crosswalk, cross only with the green lite..........and hope some idiot doesn't run over you.

 

[Sheffy1124]

Hugs to you, brother. Completely natural to have these thoughts/feelings. The success rate is like 97/98%...you're going to get through this. I was thankful for the surgery. I take Warfarin once a day like a vitamin. I ride quads (moderately), waterslides, basketball, etc. The only thing you might have to slow down on is the body building. I was told not to lift more than 100lbs, although I've heard of body builders having no restrictions. Stay strong. We're here for you, and anyone on this site that has had the surgery IS responding to you. That should say something.

 

[mikeccolella]

The calcification thing is certainly related to injury. In my own case I had rheumatic fever in childhood which left my aortic valve scarred. Similiar to what happens to a coronary artery the process of calcification began and progressed throughout my life. I knew eventually it, the valve, would get really bad. At the age of 63 it became severe and surgery quickly followed. Allis well now 4 months later. But the point is that a valve or an artery need to be injured in some way for this process to get underway. As paleowoman says her arteries are squeaky clean, and that probably means clean lifestyle or good genes or both. IAC, many people develop aortic stenosis in old age without having had rheumatic fever or a birth defect. So as the OP has stated this stuff can be caused by many things, but arteries that are not injured do not build up plaque. Arteries generally become injured due to inflammatory processes caused by factors like smoking, hbp, trrrible diets, etc. some are much more suceptible to this due to genetic factors. My point is that even though calcification is a bit mystifying my strong hunch is that many factors are involved in increasing it or decreasing it and diet would be one of those factors along with HBP, smoking, lack of fitness and other issues that increase inflammation and injury. Certainly high levels of very bad cholesterol could play a significant role because this could lead to some very intensive inflammation when these particles become oxidized.

 

[rakesh1167]

Yeah, I never got this one. If an ordinary person my age could expect to live another 40 years or so, and I get told that I have a condition that means I can only expect another 25 years or so, "But don't worry -- you could still die in a car accident tomorrow" seems like a pretty bizarre and ineffective condolence. I know that's not how you mean it, but it is how it comes across.

To the OP -- you can see how skittish the people around here get about this topic. They're all scared of it. It makes them uneasy and they often try to "bury" it under chatter about this and that when it comes up. It's OK, it's how they deal. My point stands -- your odds of making it to any given age are going to be less than a normal person's, but they don't seem to be particularly terrible from the information in that study (although there are plenty of other sources and studies with more dismal data, those are typically older studies regarding patients, procedures, and care from longer ago).

And please -- don't just discontinue T treatments before you talk to the guys over at www.peaktestosterone.com -- they're a great source of information, and low T is no joke.

Not everybody is scared of it. I always remember that my life expectancy is around 20-25 years. I had surgery at 32, so that makes it less than 60 years.

There is a old man in my village who had his valve replaced 10 years back. His teeth are horrible, he doesn't know about endocarditis, lpa, dpa, calcium score etc. He is enjoying life to the fullest. I would swap his brain with mine in an instant. Ignorance is truly a bliss.

What you and me are dealing with is a curse in my opinion. We keep doing these calculations and make our current life misery(now don't tell me how much you enjoyed para gliding last week..). In the end we would spend rest of our lives(whatever is left) in misery.

 

[Agian]

There is a old man in my village who had his valve replaced 10 years back. His teeth are horrible, he doesn't know about endocarditis, lpa, dpa, calcium score etc. He is enjoying life to the fullest. I would swap his brain with mine in an instant. Ignorance is truly a bliss.

My brain is in near mint condition. It's hardly ever been used. With my brain, the geezer's teeth and a set of Tarot Cards you could max out on ignorance.

 

[cldlhd]

My brain is in near mint condition. It's hardly ever been used. With my brain, the geezer's teeth and a set of Tarot Cards you could max out on ignorance.

Can't argue there-ha!