The Future of Valve Choice?

[Guest]

I'm at the very very start of my aortic stenosis journey, at 42 years of age. My stenosis is "very mild", with a peak velocity of 2.36 m/sec.

I'm hoping that it will be more than 10 years before I need surgery (although -- who knows?)

I'm wondering what sort of valve I'll want, but after reading about the merits and flaws of bioprosthetic vs mechanical, I'm thinking that I can't even consider this right now. So much will depend on how old I am when I need the surgery, and what the technology is like at that point. If I'm unlucky enough to need to surgery in 3 years, things will be very different than if I can manage to go 20 years without needing it.

So I guess I shouldn't think about it at all yet? Does that make sense?

Part of me thinks I'd prefer a bio valve with knowledge that I'll need a new mechanical one at some point in the future, hopefully when mechanical valves and/or blood thinners are less problematic.

Also wondering if this new TAVR surgery would work to replace a mechanical valve, where I suspect it WOULD work to replace a failing bioprosthetic.

I'm just spitballing here and have no real idea of the details. This is all new and bewildering to me.

 

[almost_hectic]

If you're that far away from needing surgery I wouldn't even think about it... AT ALL. The science is rapidly advancing and may be totally different in ten years. However on the filpside of that argument I would tell you that, in my opinion, blood thinners are already very less problematic. I do virtually nothing different than before I was on Coumadin. Likewise nothing is different except that I take a pill every night and stick my finger once a week. Thus far Ive always been in therapeutic range and my lifestyle hasn't changed one bit. If I cut myself I still bleed, and it maybe not stop as quick but I've never actually timed how long I bleed. Its not like it comes gushing out and never stops, just not as quick as it once did... maybe, don't even know.

 

[JulienDu]

I would say, do not worry about it, live your life, be active, eat healthy.

 

[pellicle]

Hi

I'm at the very very start of my aortic stenosis journey, at 42 years of age. My stenosis is "very mild", with a peak velocity of 2.36 m/sec.

I'm hoping that it will be more than 10 years before I need surgery (although -- who knows?)
.

To me its vaguely insane to project decisions on what technology will be the best for a hypothetical 10 years from now. You have just started your journey young padawan, so I recommend you just take a casual approach to information gathering and ram down the stress.

I'm wondering what sort of valve I'll want, but after reading about the merits and flaws of bioprosthetic vs mechanical, I'm thinking that I can't even consider this right now.

agreed ... Cancer appear and could kill you sooner ... you could be texting like young folk do and walk in front of a bus ... 10 years is a long time for the reading and education. You could actually start med school and become a surgeon in that time.

 

[epstns]

OK, I'll be the (mildly) dissenting opinion here. I differ because I, too, had an extended time in The Waiting Room. For me, it was almost 10 years from diagnosis to surgery. What kept me calm through all of that time was to simply develop a "now" plan, such that I was comfortable at the start with what direction I would take should I suddenly need surgery immediately. Then I put that aside and simply reexamined the plan every few years. I was being monitored twice per year by my cardio, and the plan was just one of the things we discussed at each visit. Over time, as I became older and my valve progressed, the plan changed. I never had to totally re-plan everything, I just revised a few aspects of the plan. In general, my plan progressed from knowing which few hospitals I would use for surgery and that initially I would want a mechanical valve. As I got older, eventually passing 60, then 61, 62, and finally opting for surgery at age 63, my cardio, surgeon and I concluded that a tissue valve would be a good choice for me. I did not change my choice of hospitals, surgeons, cardiologists. . . only the valve. You have the option to plan in this manner, too.

I would discuss things with your cardio and decide what you would do if you needed surgery now. I would "note" that on paper, then put it aside for some years, until your regular check-up shows that you may be either getting toward needing surgery or you are crossing one of the age markers (decades). At each decade marker, you can do a bit or reading to see if the common surgical advice has changed for valve patients who are crossing that marker, and plan accordingly. Who knows? You could be one who doesn't need surgery until you are well into advanced age, or not at all.

 

[Nocturne]

Thanks. All good advice, even the seemingly contradictory stuff.

I'm 42. Is it really possible for me to get to "advanced age" before needing surgery? I look around here and most people seem to either have found out they needed surgery right away or (more commonly) had roughly 10 years to wait. Is it ever 20?

 

[Paleowoman]

I'm 42. Is it really possible for me to get to "advanced age" before needing surgery? I look around here and most people seem to either have found out they needed surgery right away or (more commonly) had roughly 10 years to wait. Is it ever 20?

I found out I had bicuspid aortic valvewhen I was 25 but no one ever said anything about surgery at the time and nothing was done, not even follow ups. If a doctor hadn't been listening to my chest one day when I was 53 I would have carried on regardless until maybe I'd have needed surgery straight away - so it was seven years from when I was told I'd need surgery till I had surgery, but 35 years from when I first knew I had BAV ! In theory it therefore could have been 35 years from knowing I'd need surgery till having it, but bear in mind that when I was 25 echocardiograms and other diagnostic equipment wasn't nearly as good as nowadays and that's partly the reason why. Plus not everyone needs surgery so the docs can't tell too far in advance if someone will need surgery.

 

[Paleowoman]

The other thing is that most people don't know they've got bicuspid aortic valve until they get symptoms in which case it's nearer the time for surgery. When mine was first discovered it was becasue I'd been to the GP because I had bronchitis and he just happened to hear the murmur and so referred me to a cardiologist. If I hadn't had bronchitis I would never have known. Again when I was re-referred to a cardiologist seven years before surgery, it was a gastorenterologist I was consulting about a gastro problem - when he listened to my abdomen he heard the murmur radiating from my heart - if iI hadn't been at the gastrodoc I wouldn't have known. And I wouldn't have known therefore even when I got to the stage for surgery because I didn't have any symptoms at the point so would never have gone to a doc ! It wouldn't have been till it was dangerously critical that the BAV would have been discovered and operated on straight away !

 

[Nocturne]

Yeah... My problem is that I don't think I have a BAV. I think I had abominably bad lipids (never had them checked until I turned 40, and then they were 235 total, 185 LDL, 35 HDL). 150 LDL and above is considered "very high". I lost a lot of weight and got the lipids down (they're still pretty crappy for a guy close to his ideal weight) but I'm afraid it was too little, too late. Still waiting on the results of that calcium score test to see how trashed the rest of my heart is.

In other words, unless the tech just forgot to write otherwise on the lab report, I have a normal aortic valve with three leaflets -- I just have calcific sclerosis/stenosis at the age of 42.

That does NOT speak well for the future. My hope now is that the calcium score test comes back halfway decent. But I don't have terribly high hopes.

 

[Nocturne]

So I got my calcium score test back. 136.

That is NOT good. Not at 42 years of age.

I'm still trying to process this. I definitely have heart disease now. I feel guilty -- I let myself get obese and didn't exercise, and didn't see a doctor for checkups. But I also feel cheated -- LOTS of men do that, and worse, and don't have heart disease by 42. My docs pooh-poohed the idea of a calcium score test prior to my stenosis diagnosis.

Now I really fear for the future. Will I see my kids grow up? Will I see my grandkids? What condition will I be in if I do?

 

[Paleowoman]

Hi Nocturne - do some searches on the internet about vitamin K2. I first heard about that some five years ago on Dr William Davis' website - Dr Davis is a cardiologist who recommends vitamin K2 to help keep calcium out of the coronary arteries. There are clinical trials going on regarding reversal of coronary calcification using vitamin K2. Vitamin K2 is not the same as vitamin K1 - they're practically different vitamins. Vitamin K1 is the coagulant vitamin and vitamin K2 affects calcium, keeping it out of the coronary arteries and putting it in bones where it should be. I started K2 in the hopes that it would slow down the progression of the calcification of my bicuspid aortic valve and to help my bones as I have osteoporosis. I don't know if it helps as there isn't a double of me not taking it LOL but I take 300 mcg of vitamin K2 as MK-7 per day. My cardiologist knows this as do all my doctors. Anyway, see what you can find out about it for yourself, Dr Davis swears by it for his patients who have high calcium scores - also low carb as carbs can lead to inflammation of the coronary arteries which can lead to plaque formation and then calcification.

 

[Nocturne]

Thanks. I meet with a preventative cardiologist soon, so I will ask her about that.

This year has been one thing after another. Now I am really worried about the chest/arm pain I have been having for the last few days. I had assumed it was just nerves from the stenosis diagnosis, now I have to wonder.

 

[JulienDu]

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.

 

[Nocturne]

Julien, I actually believe you meant well by writing what you wrote. I'll just say that while my lifestyle wasn't great, there are lots of people who live that way and do not have serious heart disease at 42. My real regret isn't so much my lifestyle as my failure to get a GP doc earlier in life (like a lot of guys, I waited until I turned 40 to get one). A simple lipid check in my early 30s probably would have turned up a problem, and I do know I would have done something about it. It was ignorance of the problem's existence that led to this.

Edit: By the way, I had already changed my lifestyle in the year prior to the stenosis diagnosis -- exercise every day for 30-45 minutes, much better eating habits, lost 55 pounds (25% of my body weight). Once I saw what shape my lipids were in, I knew I had to do something. It looks like it was just too little, too late.

Peace. Again, I believe your harsh words were genuinely coming from a good place.

 

[Paleowoman]

Hi Nocturne - I know this may sound controversial to some, but high lipids are not always the cause of atherosclerosis (mine are higher than yours but I have no atherosclerosis, results from last week's total is 374, though a better profile), unless the person has familial hypercholesterolemia, and even then it is controversial ! Don't just focus on your lipids ! Focus on other health giving lifestyle factors and choices too !

 

[pellicle]

Hi

Julien, I actually believe you meant well by writing what you wrote..

I'm not sure that is a valid interpretation of things. I think I would have phrased things differently to Julien but I can say that as I was growing up I looked with anger and disgust at people who were "wasting their life".

I was frustrated that I'd had to struggle hard from my earliest memories. I was doing well till about 5 years old then had my first OHS at about 10, then I struggled hard to attain something of fitness and strength, but it was not till my late teen's that I was really on a level paying field.

At university I found it something disgusting that people would be self abusing with booze and drugs and eating rubbish. Just wasting the gifts of that perfect body that they had been given in their dice roll of birth.

Fortunately for me I was always quite a philosopher as well as a student of science, so I developed understandings which allowed me to no longer be angry at this.

What I see now is that people gifted with plenty do not value it. It is rare that someone does. So it usually requires the removal of that gift to shake them up into valuing it. Accordingly I have slowly come to feel blessed by what others see as misfortune - for it forces me to see things as they really are.

I hope moving forward you value the gift of life and do your best to respect, strengthen and build upon the body you have, for as you now see, you will not get another.

Best wishes.

PS some of the strongest smartest and most promising people I went to Uni with in my BiochemDaze are now dead. Some from substance abuse, some from lifestyle. One in his work contracted lerposy ... he's doing well but shows the scars.

 

[Nocturne]

I'm not sure that is a valid interpretation of things.

Julien wished me well in there, and I believe that was genuine.

And while I haven't lived it, I think I can understand the anger. As it stands I already find myself getting cheesed off at obese friends who talk about having great lipids while sucking down a second cheeseburger. I know at least two of them are being honest. Even with my weight off, and eating well, and exercising, my lipids are still pretty meh. HDL still hasn't gotten to 40.

 

[pellicle]

Julien wished me well in there, and I believe that was genuine.

I think you misunderstand ... his wishing you well was genuine. But if you've ever had kids you know that while you wish them well you occasionally need to speak sternly when you seeing them do stupid stuff which is ultimately harmful to them.

If you didn't wish them well you would sit back with the popcorn and watch the show (and maybe laugh now and then at the injuries).



That I'm writing to you like I am is also a reflection that I wish you well ... but I will call a spade a spade while doing so.

 

[Nocturne]

I think I understand, which is why I initially said that I believed he meant well by writing what he wrote. I may have misunderstood you, because I thought you were trying to say that he was speaking out of anger only without any intent to be productive.

You don't know the entirety of the lifestyle changes I've already made -- before being aware of any heart problems -- but trust me, the lesson you are trying to teach has already been learned.

Believe me, I am wrestling with guilt over my heart's condition, but I am also fully aware that while my lifestyle wasn't good, the vast majority of people who live that way (or worse) do not have heart disease at 42. I'm pretty sure there was more at work here than just obesity and sedentary lifestyle.

 

[JulienDu]

Believe me, I am wrestling with guilt over my heart's condition, but I am also fully aware that while my lifestyle wasn't good, the vast majority of people who live that way (or worse) do not have heart disease at 42. I'm pretty sure there was more at work here than just obesity and sedentary lifestyle.

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...