Hi all. BAV/stenosis and surgery in the near future!

[kevans1475]

Hi all,

Gulp. 55 yo male and I've been having annual echos since 2017 to monitor by BAV, the stenosis kind. In November of 2022 I was at moderate and as of November 2023 I'm at severe. Talk about non-linear! Anyway, after meeting with my cardiologist and thoracic surgeon last week sealed the deal...it's time. I guess denial isn't just a river in Egypt! I've just started reading some posts here and boy, I'm glad I found this forum. Many questions are being answered, so thanks to you all who have already paid if forward. I'm grateful and will do my best to do the same.

I don't have a time and date yet as the surgeon said it's up to me. But certainly within months, not years. Rats. Are you SURE? Yep.

So now I need to get on my mental game. Physically I can walk/hike and experience some discomfort on inclines. I slow down or stop for a bit and I'm okay again. I've been experiencing some breastbone 'pressure' while at rest, but that comes and goes and I'm not sure the line between unconscious anxiety or progressing symptoms. Psychosomatics at work?? Of course I'm keeping my docs informed, but it's funny how everything seems to become a worsening symptom the moment you find out you need to go under the knife.

So for now I'm planning out a time and date and trying to keep my brain from running amok with worse case scenarios of symptoms. My surgeon said although I'm in the worst case of needing surgery soon, I'm a best case candidate since I've been monitoring it. I've heard many times the anticipation is worse than the operation. And mileage varies on recovery. I'll continue to monitor this site for advice on how to prep for the surgery (nutrition, exercise) and some best experiences for a safe and quality recovery (nutrition, activity).

Final question for now: is getting a second opinion from another cardiologist or surgeon a must-have? I'm going to Mass General in Boston and they have done so many of these they could install a drive through window. ;-) But for now I think I'm more concerned with my health leading up to the surgery than I'm worried about the post.

Any advice welcome! Thanks,
Ken

 

[dick0236]

Welcome Kevin. If you have been followed by cardio and surgeon for 7 years and they now say "It's time"......it's time. It is far better to have the surgery a little too soon rather than a little too late. If you trust your "team" a second opinion might only confuse the issue.

Believe it or not, valve replacement surgery has become a common procedure and has a track record back to the early 1960's. Once you get "fixed" you should be able to return to a normal and long life......I know I did.

This forum is a very good source of information and the folks here have all "been there, done that" and will be willing to try answering any questions or concerns you have.

 

[pellicle]

Hi and welcome

Gulp. 55 yo male and I've been having annual echos since 2017 to monitor by BAV, the stenosis kind. In November of 2022 I was at moderate and as of November 2023 I'm at severe. Talk about non-linear!

that's indeed how it goes, and why they start closing the gap on imaging intervals as they start to see it.

Anyway, after meeting with my cardiologist and thoracic surgeon last week sealed the deal...it's time. I guess denial isn't just a river in Egypt!

agreed, a MEME I used to post on facebook a few years back

it can be re-adapted ;-)

I've just started reading some posts here and boy, I'm glad I found this forum. Many questions are being answered, so thanks to you all who have already paid if forward. I'm grateful ...

its a great community

I don't have a time and date yet as the surgeon said it's up to me. But certainly within months, not years. Rats. Are you SURE? Yep.

that's good, because you don't want to wait longer ... for so many reasons

So now I need to get on my mental game. Physically I can walk/hike and experience some discomfort on inclines. I slow down or stop for a bit and I'm okay again.

consider a HR monitor (like a Garmin or something) and keep your HR below 130

I've been experiencing some breastbone 'pressure' while at rest, but that comes and goes and I'm not sure the line between unconscious anxiety or progressing symptoms. Psychosomatics at work??

could be ... don't discount that one ...

Of course I'm keeping my docs informed, but it's funny how everything seems to become a worsening symptom the moment you find out you need to go under the knife.

good

So for now I'm planning out a time and date and trying to keep my brain from running amok with worse case scenarios of symptoms.

good, such things bring nothing to the table except anxiety.

My surgeon said although I'm in the worst case of needing surgery soon, I'm a best case candidate since I've been monitoring it.

true

Final question for now: is getting a second opinion from another cardiologist or surgeon a must-have?

I wouldn't call it a must have, not unless you feel that "something ain't right". I haven't ever done so.

I'm going to Mass General in Boston and they have done so many of these they could install a drive through window. ;-)

probably a good idea, they come to your home in India, set up a sterile tent, do it there, leave you in the tent for ICU, then remove and burn the tent.

But for now I think I'm more concerned with my health leading up to the surgery than I'm worried about the post.

just take it easy .. put it in a holding pattern.

Any advice welcome! Thanks,

take a small tub of kimchi with you for back in the ward. Bowels are notoriously "stubborn to restart" on return to the ward.

Try some first, be aware that it is a fermenting live food, so don't buy it too far in advance ...

Marcus Aurelius wrote

Best Wishes

 

[Chuck C]

Hi Ken and welcome to the forum!

Sorry to hear about your condition, but glad that you found us and joined our little club. It is the club that no one wants to be a member of

I found this site a few months before I headed into surgery and it was a huge blessing for me. It really was helpful hearing about the real life experiences of other patients and gave me comfort in feeling that I was not alone. Also, there is such a wealth of information here and I really encourage you to take advantage of it.

I don't have a time and date yet as the surgeon said it's up to me. But certainly within months, not years.

I don't think that you need to rush to ER or anything, but my advice would be to get it done in weeks rather than months, because:

1) your team has been tracking you since 2017
2) Your cardiologist and surgeon are in agreement that it's time.
3) Nothing is gained by waiting months, but you do incur some risk. Again, not to get you worried, but your heart has already done some structural remodeling to deal with the high pressure needed to get your blood through your narrow aortic valve. As time goes on the remodeling advances and at some point there is irreversible damage. I don't think that you're near that point yet, btw, and even if you wait a few months you will still probably be fine, but I would encourage you to make a pro and con list of waiting months vs weeks. I'd play it on the safe side and choose weeks if it was me.
4) There is more and more published literature that patients have better short and long term outcomes if they get surgery done once they become severe, rather than wait for major symptoms.
5) you said this

Physically I can walk/hike and experience some discomfort on inclines.

experience some discomfort on inclines. I slow down or stop for a bit and I'm okay again. I've been experiencing some breastbone 'pressure' while at rest, but that comes and goes and I'm not sure the line between unconscious anxiety or progressing symptoms.

Regarding whether you are imagining your discomfort and pressure, I would refer you back to your own comment here:

I guess denial isn't just a river in Egypt!

People really fear going under the knife and it is remarkable the lengths that they will go to to convince themselves that what they are experiencing is not really a symptom, but something else- "My sister-inlaw says it's probably just a mineral deficiency and recommends I supplement with iron and colloidal silver." Don't be that guy. The red pill version is that your symptoms are very likely the result of your aortic stenosis. You are at least two months into severe aortic stenosis, being diagnosed in November 2023, discomfort upon exertion is a normal thing for someone at your point of stenosis.

Final question for now: is getting a second opinion from another cardiologist or surgeon a must-have?

I think it depends on your motivation. It is not a bad idea to get a second opinion about valve choice. At age 55 you will have one camp of surgeons and cardiologists pushing tissue and another camp mechanical. It is not a bad idea to hear the case from each camp.
However, if your motivation in getting a second opinion is the hope that you find a surgeon who will tell you that there is no rush and you can put it off another year, I would discourage that. We have one member who has had severe stenosis for 6 months and every time he gets a consult that tells him it's time, he frantically goes all over town getting more echos and consults until he finds someone who tells him that he is fine and does not need to worry about surgery for a long time. While that might relieve one's anxiety at the moment, it could eventually lead to a bad outcome.

But for now I think I'm more concerned with my health leading up to the surgery

I would suggest to go into surgery as healthy as possible. Don't overdo things, but walk a lot and eat healthy between now and then.

Best of luck and please keep us posted on your journey!

 

[kevans1475]

Hi and welcome


that's indeed how it goes, and why they start closing the gap on imaging intervals as they start to see it.


agreed, a MEME I used to post on facebook a few years back
View attachment 889792
it can be re-adapted ;-)



its a great community


that's good, because you don't want to wait longer ... for so many reasons


consider a HR monitor (like a Garmin or something) and keep your HR below 130



could be ... don't discount that one ...


good



good, such things bring nothing to the table except anxiety.


true


I wouldn't call it a must have, not unless you feel that "something ain't right". I haven't ever done so.


probably a good idea, they come to your home in India, set up a sterile tent, do it there, leave you in the tent for ICU, then remove and burn the tent.


just take it easy .. put it in a holding pattern.



take a small tub of kimchi with you for back in the ward. Bowels are notoriously "stubborn to restart" on return to the ward.

Try some first, be aware that it is a fermenting live food, so don't buy it too far in advance ...

Marcus Aurelius wrote
View attachment 889793
Best Wishes

Thank you, great meme and great advice. I love the Stoics too. Luckily I eat fermented veggies, so I don't mind the taste.

 

[kevans1475]

Hi Ken and welcome to the forum!

Sorry to hear about your condition, but glad that you found us and joined our little club. It is the club that no one wants to be a member of

I found this site a few months before I headed into surgery and it was a huge blessing for me. I really was helpful hearing about the real life experiences of other patients and gave me comfort in feeling that I was not alone. Also, there is such a wealth of information here and I really encourage you to take advantage of it.


I don't think that you need to rush to ER or anything, but my advice would be to get it done in weeks rather than months, because:

1) your team has been tracking you since 2017
2) Your cardiologist and surgeon are in agreement that it's time.
3) Nothing is gained by waiting months, but you do incur some risk. Again, not to get you worried, but your heart has already done some structural remodeling to deal with the high pressure needed to get your blood through your narrow aortic valve. As time goes on the remodeling advances and at some point there is irreversible damage. I don't think that you're near that point yet, btw, and even if you wait a few months you will still probably be fine, but I would encourage you to make a pro and con list of waiting months vs weeks. I'd play it on the safe side and choose weeks if it was me.
4) There is more and more published literature that patients have better short and long term outcomes if they get surgery done once they because severe, rather than wait for major symptoms.
5) you said this


Regarding whether you are imagining your discomfort and pressure, I would refer you back to your own comment here:

People really fear going under the knife and it is remarkable the lengths that they will go to to convince themselves that what they are experiencing is not really a symptom, but something else- "My sister-inlaw says it's probably just a mineral deficiency and recommends I supplement with iron and colloidal silver." Don't be that guy. The red pill version is that your symptoms are very likely the result of your aortic stenosis. You are at least two months into severe aortic stenosis, being diagnosed in November 2023, discomfort upon exertion is a normal thing for someone at your point of stenosis.


I think it depends on your motivation. It is not a bad idea to get a second opinion about valve choice. At age 55 you will have one camp of surgeons and cardiologists pushing tissue and another camp mechanical. It is not a bad idea to hear the case from each camp.
However, if your motivation in getting a second opinion is the hope that you find surgeon tell you that there is no rush and you can put it off another year, I would discourage that. We have one member who has had severe stenosis for 6 months and every time he gets a consult that tells him it's time, he frantically goes all over town getting more echos and consults until he finds someone who tells him that he is fine and does not need to worry about surgery for a long time. While that might relieve one's anxiety at the moment, it could eventually lead to a bad outcome.

I would suggest to go into surgery as healthy as possible. Don't overdo things, but walk a lot and eat healthy between now and then.

But of luck and please keep us posted on your journey!

Thank you Chuck! Great advice. I will keep you posted and likely have additional questions.

 

[kevans1475]

Welcome Kevin. If you have been followed by cardio and surgeon for 7 years and they now say "It's time"......it's time. It is far better to have the surgery a little too soon rather than a little too late. If you trust your "team" a second opinion might only confuse the issue.

Believe it or not, valve replacement surgery has become a common procedure and has a track record back to the early 1960's. Once you get "fixed" you should be able to return to a normal and long life......I know I did.

This forum is a very good source of information and the folks here have all "been there, done that" and will be willing to try answering any questions or concerns you have.

Thank you ****. Yes, it's time. Here we go...

 

[pellicle]

Luckily I eat fermented veggies, so I don't mind the taste.

I have no idea what valve you're likely to choos, but a love of fermeted veges will stand you in good health for a life on anticoagulation therapy if you pick mechanical.

From my manuscript:
People often get advice from their health professionals to avoid eating greens. Green, leafy foods are the major natural source of vitamin K in the diet. The advice to avoid them is not good advice and is a holdover from last century when people just made assumptions (rather than scientifically exploring something).

The source of this advice is probably because the “mechanism of operation of warfarin” being a vitamin K antagonist (VKA) leads people to think we should avoid vitamin K. It’s true that the method for reversing the anti-coagulation effects of warfarin is simply to administer (by injection) vitamin K. However, it's a matter of “scale” and the facts remain that you do still need to eat a healthy diet and greens are part of that.

The current state of the literature is best presented in this systematic review published in 2016 [18]:

In conclusion, the available evidence does not support current advice to modify dietary habits when starting therapy with VKAs. Restriction of dietary vitamin K intake does not seem to be a valid strategy to improve anticoagulation quality with VKAs. It would be, perhaps, more relevant to maintain stable dietary habit, thus avoiding wide changes in the intake of vitamin K. Based on this, until controlled prospective studies provide firm evidence that dietary vitamin K intake interferes with anticoagulation by VKAs, the putative interaction between food and VKAs should be eliminated from international guidelines.​

I’ve added some emphasis in the above quote to make the message clearer. Just in case the word putative is not familiar to you, it means “generally considered to be or reputed to be”.

 

[pellicle]

People really fear going under the knife and it is remarkable the lengths that they will go to to convince themselves that what they are experiencing is not really a symptom, ... Don't be that guy.

thinks of someone who's shopping for bargain basement valves from the equivalent of Costco in the cuntree he lives in.

So yeah @kevans1475 , don't be 'that guy'

Best Wishes

 

[kevans1475]

thinks of someone who's shopping for bargain basement valves from the equivalent of Costco in the cuntree he lives in.

So yeah @kevans1475 , don't be 'that guy'

Yeah, I've already inquired on the next available dates. My sister in law is a doctor and recommends waiting until the flu and covid season subsides and do it in April or May (mostly for better chances of available staff and postop exposure risk). I was thinking March or April anyway, so we'll see what the hospital has open.

Valves is my next research project. I'm leaning mechanical but I'm about to dive into the forum to learn more.

Thanks again!

 

[kevans1475]

I have no idea what valve you're likely to choos, but a love of fermeted veges will stand you in good health for a life on anticoagulation therapy if you pick mechanical.

From my manuscript:
People often get advice from their health professionals to avoid eating greens. Green, leafy foods are the major natural source of vitamin K in the diet. The advice to avoid them is not good advice and is a holdover from last century when people just made assumptions (rather than scientifically exploring something).

The source of this advice is probably because the “mechanism of operation of warfarin” being a vitamin K antagonist (VKA) leads people to think we should avoid vitamin K. It’s true that the method for reversing the anti-coagulation effects of warfarin is simply to administer (by injection) vitamin K. However, it's a matter of “scale” and the facts remain that you do still need to eat a healthy diet and greens are part of that.

The current state of the literature is best presented in this systematic review published in 2016 [18]:

In conclusion, the available evidence does not support current advice to modify dietary habits when starting therapy with VKAs. Restriction of dietary vitamin K intake does not seem to be a valid strategy to improve anticoagulation quality with VKAs. It would be, perhaps, more relevant to maintain stable dietary habit, thus avoiding wide changes in the intake of vitamin K. Based on this, until controlled prospective studies provide firm evidence that dietary vitamin K intake interferes with anticoagulation by VKAs, the putative interaction between food and VKAs should be eliminated from international guidelines.​

I’ve added some emphasis in the above quote to make the message clearer. Just in case the word putative is not familiar to you, it means “generally considered to be or reputed to be”.

See, I had not idea this was a thing. I didn't know there was a history of whether vitamin K with warfarin was good or bad. Thanks for the literature.

My first google hits reveal the two sides. The Mayo Clinic advises a daily dietary levels (consistency) versus avoidance. I believe Western medicine in general is weak on nutrition knowledge. Years ago I went to an annual, general check up and my doctor was perplexed why I would take a vitamin D with vitamin K2. After that I stopped telling them about some other things I try. For example, I switched from coffee to green tea that is also steeped with whole cloves. You get your caffeine, maganese, a smidge of K, and it's great for gut health. And it tastes good. I have a cup of coffee every once in a while.

I've seen Chinese herbs help with many things. And acupuncture is a great technique for chronic pain, stress, and relieving other ailments. These are not cures, they help the body in healing. At least in my experience.

 

[Chuck C]

My first google hits reveal the two sides. The Mayo Clinic advises a daily dietary levels (consistency) versus avoidance

It won't do any harm to try to take in about the same amount of vitamin k foods daily, but no need to get carried away with this. I eat more greens than a lowland gorilla, and have very stable INR, in range well over 90% of the time. Some days I have 2 big salads and a green smoothie, other days I might have just one salad and no smoothie. I see no swings in my INR from this. On the other hand, I don't recommend the carnivore diet at all, but let's say that a person just watched his favorite Youtube influencer, a chiropractor who pretends to understand medicine, preach about the carnivore diet and decides to give it a try for 2 months. Then, after 2 months, they decide to do a one week clense with 6 spinach/arugula smoothies per day, along with half a kilo of natto- yeah, I would say that is a real bad idea and would avoid that type of scenario with extreme shifts in vitamin k intake. But, if I have my big lunch salad and then my wife is serving salad with dinner, I don't push the dinner salad away with the idea that I have already had my vitamin k quota for the day. I have found, from consistently testing myself, that such variances don't really have an impact on my INR. If you read the threads on this topic you will find that others on warfarin basically eat what they want. The important thing is to test INR regularly, preferable with weekly home testing, and make micro adjustments when needed. In any case, if you do go this route, you can self test and see if modest alterations in vitamin k foods have any impact on your INR. As we like to say: 'know thyself'.

 

[V__]

I've seen Chinese herbs help with many things.

FWIW, I was helped by TCM in a serious way in the past. However, a family friend, who is a physician, complained once about some patients taking herbal formulae. It was completely unprompted, and his point was that the interactions with the western drugs are frequently/usually unknown. (Ginseng and some other herbs do have blood-thinner warning.) This raises the specter of unknown risks. So now that I take pills daily, I stay away from the TCM medicines. Certainly prefer known/controlled risks with the stuff that works This could've been different if I were to have a disease with no cure. But with the heart valve problems the modern medicine works amazingly well.

 

[pellicle]

Hi

See, I had not idea this was a thing. I didn't know there was a history of whether vitamin K with warfarin was good or bad. Thanks for the literature.

you're welcome.

Let me introduce you to a concept: expertise by association. Just because an institution or an individual has great stature in specific areas does not mean they have it across other domains. This is where discussion and directed further reading helps. Don't just believe the first thing an expert says, not least because it may have been a simplification to fit a specific circumstance (and is not generalisable). Informing a patient can be a long task (many confess its almost impossible in practice and we should just adivse).

My first google hits reveal the two sides. The Mayo Clinic advises a daily dietary levels (consistency) versus avoidance.

this is a key problem in research, you can't ask questions of google, its purpose is not to give you veracity, its purpose is to direct advertising to you based on what you are interested in.
To do research you need to have a question in mind and carefully examine the literature (which may seem contradictory) and apply honest critical thinking to what you read. I say "honest" because it should be unbiased.
If your research is "can I prove to myself that A is better than B you can always prove that to yourself with google

I put this together to try to assist people (who aren't like QAnon and fixed in a thinking) to understand what is research and some links on how to undertake it

https://cjeastwd.blogspot.com/2021/07/done-my-research.html
https://cjeastwd.blogspot.com/2017/01/division-engines.htmlfrom that last one:

To quote from Marcus Aurelius :
“Everything we hear is an opinion, not a fact.
Everything we see is a perspective, not the truth.”

Twitter and Facebook simply encourage people to pitch battle and stick more strongly with their respective camps, I would encourage you to seek, to discuss, and inform yourself in an iterative cycle.

I mean, if you want the best answers available today, not just confirm "what you already know".

I believe Western medicine in general is weak on nutrition knowledge. Years ago

I strongly believe the exact opposite and was stunned during my biochemistry degree years (back in the 80's) just how pervasive this view was in the public. Mysterious and Romantic views of China seems to ignore the fact that they have a horrible system (CCP is just getting worse), deep systemic corruption, and an attitude of "cheat or be cheated". This is why at a population level they have dreadful health and nutrition. Its a sham.

I went to an annual, general check up and my doctor was perplexed why I would take a vitamin D with vitamin K2.

This doesn't surprise me because Doctors are far from experts, they are overworked underpaid generalists who are often more about understanding how to claim this, or which loophole will get you access to that. They have a huge system to navigate and usually only 15 minutes in an allotted 20 minutes consultation time. Further they were the least informed in biochemistry, pharmacology and microbiology of the whole cohort of allied areas when I studied Biochem.

After that I stopped telling them about some other things I try. For example, I switched from coffee to ...

I can understand that view, however it can be dangerous. For instance I help people manage their INR, and I ask them to tell me what they are eating right from the start, because some things are fine, but other things are not. For instance, with no real knowledge of anything people will tell you grapefruit is good for you; and by extension drinking glasses of grapefruit juice is better than eating one?

https://cjeastwd.blogspot.com/2021/05/grapefruit-and-warfarin.html
"But I thought I was being healthy"

I've seen Chinese herbs help with many things. And acupuncture is a great technique for chronic pain, stress, and relieving other ailments. These are not cures, they help the body in healing. At least in my experience.

I've seen mostly the opposite and people misunderstand "placebo effect".

Anyway ... sorry about the detailed core dump, but I hope you can sift through it and get something out of it.

Best Wishes

 

[pellicle]

, and his point was that the interactions with the western drugs are frequently/usually unknown.

indeed as are the actual levels of the active ingredients ....

The difference between western medicine and TCM is that Western Medicine is based on Science (like biochemistry and pharmacology) which have

1. taken the time to understand what is the ingredient (lets use Salicylic acid) present in naturally occurring sources (plants) and working out what they were
2. then understanding that purify it and then learn about dosage (or the important zone where it goes from doing nothing through helping through again to being harmful

Triggeirng some I'll post from the Wikipedia page on salicylic acid

This shows thousands of years of iterative development which to be honest has gone ballistic since science got involved. TCM is stuck in a dogmatic and mystical past. Thanks to a structured and truth seeking path, we (for example) know now about therapeutic windows ... TCM doesn't seem to. Interestingly you don't even see the CCP promoting TCM instead building hospitals to treat diseases using modern science.

This is just ONE drug in the vast repertoire of drugs that are critical to treating human ailments. I would encourage anyone to look through this list:
https://list.essentialmeds.org/

When you visit China and walk around the provinces you begin to ask yourself lots of question.

Best Wishes

 

[pellicle]

Thanks to a structured and truth seeking path, we (for example) know now about therapeutic windows .

just thought about this (while doing something else) and thought to expand on it with respect to Warfarin (another compound isolated from rotting hay which was observed causing problems for cattle, moved from rat poision to important therapeutic drug.

Managing warfarin turned a corner when we understood how to manage; NB it by managing the dose based on a measurement of the effect (not just in simple terms like the dose in milligrams). The therapeutic "window" or range can be expressed like this:

Where the INR itself wasn't even a system available when some living members here were first put on the drug.

We know that it is not how many mg you take (and we know why its not that) based on

• having access to precise amounts being administered in a dose (TCM does not have that)
• having a way of measuring the therapeutic effect (which is amount of thrombosis as indicated by measuring INR)
• exhaustive and multiple studies undertaken to examine this from an empirical standpoint (what we observe)

I'll take science any day over some semi superstitious quackery.

I have come to the view (after living in share houses while doing my biochem degree with a bunch of natural therapies people) that people can't think, so they judge, frequently simply emotionally.

Best Wishes

 

[kevans1475]

It won't do any harm to try to take in about the same amount of vitamin k foods daily, but no need to get carried away with this. I eat more greens than a lowland gorilla, and have very stable INR, in range well over 90% of the time. Some days I have 2 big salads and a green smoothie, other days I might have just one salad and no smoothie. I see no swings in my INR from this. On the other hand, I don't recommend the carnivore diet at all, but let's say that a person just watched his favorite Youtube influencer, a chiropractor who pretends to understand medicine, preach about the carnivore diet and decides to give it a try for 2 months. Then, after 2 months, they decide to do a one week clense with 6 spinach/arugula smoothies per day, along with half a kilo of natto- yeah, I would say that is a real bad idea and would avoid that type of scenario with extreme shifts in vitamin k intake. But, if I have my big lunch salad and then my wife is serving salad with dinner, I don't push the dinner salad away with the idea that I have already had my vitamin k quota for the day. I have found, from consistently testing myself, that such variances don't really have an impact on my INR. If you read the threads on this topic you will find that others on warfarin basically eat what they want. The important thing is to test INR regularly, preferable with weekly home testing, and make micro adjustments when needed. In any case, if you do go this route, you can self test and see if modest alterations in vitamin k foods have any impact on your INR. As we like to say: 'know thyself'.

You had me at lowland gorilla. Great info and it makes sense each person will be different. I'll be digging into more threads during my nightly study!

If you self-test INR weekly, are you still going to a clinic every month?

 

[kevans1475]

FWIW, I was helped by TCM in a serious way in the past. However, a family friend, who is a physician, complained once about some patients taking herbal formulae. It was completely unprompted, and his point was that the interactions with the western drugs are frequently/usually unknown. (Ginseng and some other herbs do have blood-thinner warning.) This raises the specter of unknown risks. So now that I take pills daily, I stay away from the TCM medicines. Certainly prefer known/controlled risks with the stuff that works This could've been different if I were to have a disease with no cure. But with the heart valve problems the modern medicine works amazingly well.

Thanks for this. Noted. Although curious about these alternatives, I'm not messing around with whatever my protocol is going to be. I'm not going to mess up a perfectly good operation.

 

[kevans1475]

Hi

you're welcome.

Let me introduce you to a concept: expertise by association. Just because an institution or an individual has great stature in specific areas does not mean they have it across other domains. This is where discussion and directed further reading helps. Don't just believe the first thing an expert says, not least because it may have been a simplification to fit a specific circumstance (and is not generalisable). Informing a patient can be a long task (many confess its almost impossible in practice and we should just adivse).


this is a key problem in research, you can't ask questions of google, its purpose is not to give you veracity, its purpose is to direct advertising to you based on what you are interested in.
To do research you need to have a question in mind and carefully examine the literature (which may seem contradictory) and apply honest critical thinking to what you read. I say "honest" because it should be unbiased.
If your research is "can I prove to myself that A is better than B you can always prove that to yourself with google

I put this together to try to assist people (who aren't like QAnon and fixed in a thinking) to understand what is research and some links on how to undertake it

https://cjeastwd.blogspot.com/2021/07/done-my-research.html
https://cjeastwd.blogspot.com/2017/01/division-engines.htmlfrom that last one:

To quote from Marcus Aurelius :
“Everything we hear is an opinion, not a fact.
Everything we see is a perspective, not the truth.”

Twitter and Facebook simply encourage people to pitch battle and stick more strongly with their respective camps, I would encourage you to seek, to discuss, and inform yourself in an iterative cycle.

I mean, if you want the best answers available today, not just confirm "what you already know".




I strongly believe the exact opposite and was stunned during my biochemistry degree years (back in the 80's) just how pervasive this view was in the public. Mysterious and Romantic views of China seems to ignore the fact that they have a horrible system (CCP is just getting worse), deep systemic corruption, and an attitude of "cheat or be cheated". This is why at a population level they have dreadful health and nutrition. Its a sham.



This doesn't surprise me because Doctors are far from experts, they are overworked underpaid generalists who are often more about understanding how to claim this, or which loophole will get you access to that. They have a huge system to navigate and usually only 15 minutes in an allotted 20 minutes consultation time. Further they were the least informed in biochemistry, pharmacology and microbiology of the whole cohort of allied areas when I studied Biochem.




I can understand that view, however it can be dangerous. For instance I help people manage their INR, and I ask them to tell me what they are eating right from the start, because some things are fine, but other things are not. For instance, with no real knowledge of anything people will tell you grapefruit is good for you; and by extension drinking glasses of grapefruit juice is better than eating one?

https://cjeastwd.blogspot.com/2021/05/grapefruit-and-warfarin.html
"But I thought I was being healthy"



I've seen mostly the opposite and people misunderstand "placebo effect".

Anyway ... sorry about the detailed core dump, but I hope you can sift through it and get something out of it.

Best Wishes

Great core dump. Thanks. Sobering. Based on that research video, I'm now much more open to being advised by the experts. I will continue my learning journey. Onto pros and cons of organic vs. mechanical valves.

 

[Chuck C]

If you self-test INR weekly, are you still going to a clinic every month?

Although that is certainly an option if I wanted to, in my view it would be overkill to go to the lab monthly. I try to test against the lab about once a year to make sure that I am getting about the same reading and that my meter is accurate. I ask my cardiologist to put the INR test in the system at Quest typically when I happen to be getting other bloodwork done, so that it does not make an extra trip for me. The Coaguchek has good self testing and are known for their reliability.