The Future of Valve Choice?

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Bonbet

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May 4, 2015
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Yes, and then there are people like me. Normal weight, regular exercise and physical activity, no smoking, hardly any drinking, no drugs, and extremely healthy eating my whole life! No co-morbities except life-long asthma, well managed - and some physical injuries. Diagnosed with BAV about 15 years ago. Jury is out on when I will need surgery. Still in the waiting room. The last 5 years have been a roller coaster between different docs recommending different things. But no doubt about it, it is very close. So, even if you do it all right there are still no guarantees. Waste of time to fret about the past. We can still re-create how we cope with the future. That's a pretty optimistic blurb from me! Good luck with your efforts. Bonbet or McBon (the site is confused.)
 

pellicle

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Bonbet;n863736 said:
.... Waste of time to fret about the past. We can still re-create how we cope with the future. That's a pretty optimistic blurb from me! Good luck with your efforts. Bonbet or McBon (the site is confused.)
but optimistic blurbs are great stuff in the waiting room :)

well done
 

Paleowoman

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Life is unfair but I personally don't think about it like that - I developed diabetes even though my weight was normal and my diet fine, never ate any junk food, I developed osteoporosis, goodness knows why, and I developed small airways disease, probably due to pollution, I never smoked. And of course I was born with BAV. At least I wasn't born in Syria or some other god forsaken war torn or underdeveloped part of the world. And at least I wasn't born centuries ago when life truly was more difficult for everyone. I don't even think I'm lucky, I just get on with living and appreciate what I have.
 

Warrick

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Calcium buildup on the valve. With age, heart valves may accumulate deposits of calcium (aortic valve calcification). Calcium is a mineral found in your blood. As blood repeatedly flows over the aortic valve, deposits of calcium can accumulate on the valve's leaflets. These deposits may never cause any problems. These calcium deposits aren't linked to taking calcium tablets or drinking calcium-fortified drinks. However, in some people — particularly those with a congenitally abnormal aortic valve, such as a bicuspid aortic valve — calcium deposits result in stiffening of the leaflets of the valve. This stiffening narrows the aortic valve and can occur at a younger age. However, aortic valve stenosis that is related to increasing age and the buildup of calcium deposits on the aortic valve is most common in men older than 65 and women older than 75.
 

Warrick

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Genetic factors may be important in the development of valve leaflet calcification. In a recent case-control study of 100 patients with aortic stenosis matched for age, gender, and coronary artery disease compared with those without aortic stenosis, there was a significant difference in vitamin D receptor genotypes.[SUP]26[/SUP] In addition, other genetic polymorphisms of interleukin-10, connective tissue growth factor, and chemokine receptor-5 appear to influence the degree of valvular calcification.[SUP]27[/SUP] Other studies of apolipoprotein polymorphisms provide further support for a possible genetic component to valvular calcification and stenosis.[SUP]28[/SUP]
 

pellicle

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Paleogirl;n863755 said:
Life is unfair but I personally don't think about it like that ... I don't even think I'm lucky, I just get on with living and appreciate what I have.
my thoughts go like this:

We are all born for free the cost is in staying alive. Sometimes others pay that, sometimes we pay that.

I consider myself lucky ... because despite all the chances where I could have died I didn't (and there were plenty). I stayed alive to meet my wife. I think that all the good which came from that makes me about the luckiest bastard on the planet.

I hope you all see yourselves that way. There is no contradiction in that for we are all together all alone.
 

Nocturne

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pellicle;n863758 said:
my thoughts go like this:

We are all born for free the cost is in staying alive. Sometimes others pay that, sometimes we pay that.

I consider myself lucky ... because despite all the chances where I could have died I didn't (and there were plenty). I stayed alive to meet my wife. I think that all the good which came from that makes me about the luckiest bastard on the planet.

I hope you all see yourselves that way. There is no contradiction in that for we are all together all alone.

Pellicle, that is a beautiful thought. Makes me think of my own wife. I cannot think of a better partner; strong, beautiful, intelligent, driven, kind, and loving. Trashed heart or no, I am truly blessed to have her in my life.

Thanks for your thoughts, everyone. Still coming to terms with all of this. I still can't believe that less than a year ago, any sort of health problem was the furthest thing from my mind, and now I get hit with three all in one year (though they are probably all related).

Trying to keep strong, positive. Bless you all.
 
Joined
Sep 9, 2007
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Spokane, Washington, USA
Keep a plan in mind! I've been noncomunicato for a while due to successful aortic valve surgery. Guess what? Just got back from the echocardiogram and they found that one of my leaflets has failed in my 9 year old tissue valve (Medtronic Freestyle). So I'm going back for another April 25th, 2016. At 48, I'm hoping to get longer than 9 years on my new one. I loved my last one and look forward to being back and healed up again. Each doctor and surgeon answered the same when asked "What would you choose for yourself or your children?" Each answered "Tissue Valve" without skipping a beat. Same as 9 years ago. God bless all you Valvers out there! 😩😁🤓😊❤🏌
 

epstns

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I'm sorry to see this, too. I guess that your results are not far away from the projections, as you were a "younger" patient at time of implant. You should ask them if you may get a longer valve lifespan this time, as we are usually told that older patients do.

I am just thrilled to see your attitude. You seem to have it all under control. I can only hope that if/when I need another replacement, I can maintain a similar attitude.
 

Nocturne

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Feb 29, 2016
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JulienDu;n863665 said:
Hey Nocturne

I think you should grow some balls. Yes as you said, your shitty lifestyle led to your fucked up valve and you were born with a normal and decent Tricupside Aortic Valve whereas most of the people here were born with either a decent Bicupside Valve or a shitty Bicupside valve ( like me ). Don't you think that I should feel cheated by a guy like you ? You had the luck to be born with a perfect valve and you fucked it up by a shitty life style whereas I was born with a shitty valve and had for most of the time a very healthy lifestyle and I have already been through 2 OHS at 29 and I have 2 kids and s 3rd on the way.

Now you are only mild, and you know your lifestyle is garbage. You want to see your kids and grand kids growing up, well you know what to do, change your habits, eat better, move your ass and do not spend hours pitying yourself and you might be surprised by all the good things that will happen to you and I really wish they will, cause unlike many obese people you at least came to realize that being fat fucked you up.

Yes life is unfair, some people have stronger health, some are more idiots and some have bigger dicks but, one thing that a vast majority of human has is their will and a potential to adapt. If you want to move forward, do not jealous your friends but show them that you are less a retard than them. Pellicle was born with a very severe issue and as a young kid and teenager he never gave up and pushed himself to be as normal as anyone else.

As for your obese friends, maybe your are lucky that you only have a mild heart problem cause they could develop other issues like diabetes, cancers, Osteoarthritis, Gallbladder disease and gallstones... all that can be caused by obesity too.

And you are still much more lucky than most of us, you have a normal valve and the risk for your children to have an abnormal valve will be considerably lower than for our children.

I will repeat, Obesity is a waste of your skin, many people try to find excuse or pretext to be that way in Northern America, this is bullshit. I even find funny that they think it is a disease ( a few rare cases are maybe ), then I wonder why in Europe they are not that fat ... Fat people often looks pink and healthy but reaching 50 they seem to keep the medical system very busy...
Ah. YOU'RE the one I've been remembering all of this time.

We don't see you post here anymore. I hope you are well.

I want you to know that I think I have a degree of understanding of why someone who was born with a physical heart defect might feel some animosity towards someone who was not, and developed problems due to lifestyle choices.

But you should know that I was also born with a serious problem, that was completely beyond my control. I have two homozygous alleles for high Lp(a), of the type most associated with calcific degenerative aortic valve stenosis. As a result, my Lp(a) is three times the threshold for "extremely high risk" of heart disease -- 390 nmol/L. This has nothing to do with any choices I made in life and everything to do with genetics.

Now the choices I made in life -- although not the worst (I never smoked) -- were not great. No doubt this contributed to my situation. For sure. But they also weren't much different from the ones made by everyone else I knew and associated with. It was a very reasonable expectation that even with my imperfect lifestyle choices, I would be able to avoid heart disease until my 60s or so -- or at least my late 50s.

Now I hope you can believe me that if I had known, from a very young age, as you did, that I was at extremely high risk of developing heart problems, I would have made some different choices in life.

But I did not have the opportunity to know that, because MY condition was completely invisible. Even if I had gone to the doctor regularly, the incredibly high Lp(a) levels would not have been detected, because they are not tested. My mild familiar hypercholesterolemia would probably have been detected, but even if I had lived reasonably well, my LDL cholesterol would have been above 130 -- which is where it got when I kept a VERY healthy diet and exercised every day -- and my doctor would most likely have told me that my levels were "not the best, but OK" (as he did before learning of my CAC score).

As for me being "more lucky" than you -- well, in some senses, yes. But I would argue that what might be worse than knowing you have a condition that puts your heart health at risk from a very young age, could be NOT knowing about it.

Oh, and because I am homozygous, EVERY ONE of my four children has inherited the allele for high Lp(a) from me.

Maybe, in the future, you might stop and consider that there may be more pieces to someone's puzzle than just the ones you can see, or might assume.
 

ashadds

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Joined
Nov 15, 2016
Messages
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Location
India , Bangalore
Earthsciencerocks;n864347 said:
Keep a plan in mind! I've been noncomunicato for a while due to successful aortic valve surgery. Guess what? Just got back from the echocardiogram and they found that one of my leaflets has failed in my 9 year old tissue valve (Medtronic Freestyle). So I'm going back for another April 25th, 2016. At 48, I'm hoping to get longer than 9 years on my new one. I loved my last one and look forward to being back and healed up again. Each doctor and surgeon answered the same when asked "What would you choose for yourself or your children?" Each answered "Tissue Valve" without skipping a beat. Same as 9 years ago. God bless all you Valvers out there! ❤
this is amazing ! Modern medicine is a blessing , Wishing the best for everyone...the lord bless us all with congenital heart defects!
 

Nocturne

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Feb 29, 2016
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Rhode Island
pellicle;n875908 said:
he is ... he can't reply because he was kicked off ...
Thanks -- I actually noticed that after I posted this, and looked but could not find a post that would have gotten him banned. I assume it was erased, whatever it was.
 

mikeccolella

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Dec 31, 2016
Messages
59
Location
Indiana pa
I would focus on living and enjoying life, but in the meantime I would eat high vegetable, fruit, whole grain diet with a little fish and nuts thrown in. Do not smoke of course but definitely exercise and avoid alchohol and junk food. That should reduce inflammation which is one of the biggest enemies of your valve. I had rheumatic fever at 3 and again at 11. It damaged my aortic valve. Doctors told me all my life I would need surgery someday. My heart valve lasted until I turned 63. Over the years it went from mild to moderate and then a year ago severe. I had it replaced 31/2 months ago and I can tell it is was not a terrible process. The hospital, the surgeon and the nurses were incredible and recovery was relatively quick.
 

David W

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Aug 19, 2015
Messages
102
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London
Don't get too het up about it. Although, like you I persistently view the horizon. I'm encouraged by what I've read and heard from surgeons in London and the US about their optimism for the future not only for valve development but also techniques such as TAVI. Keep your spirits up, do your research when convenient........and relax.
 

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