Bleeding issue

[carolinemc]

I think that is backwards. (unless everything I thought I knew about INR/warfarin/vitamin K/veggies is wrong)

I thought that the vitamin K in leafy veggies counteracts warfarin and LOWERS your INR, NOT raises it.

So if your INR is too low you would NOT want to be eating more greens (since that would have the opposite effect than what you want), you would either want to REDUCE your veggie intake AND/OR increase your warfarin dosage to raise the INR

It was when it was too high, they want one to eat leafy veggie like lettuce. I have been through all this for 21 years now. I get the information as I am doing INR. Have a nice day.

 

[pellicle]

I think that is backwards. (unless everything I thought I knew about INR/warfarin/vitamin K/veggies is wrong)

I thought that the vitamin K in leafy veggies counteracts warfarin and LOWERS your INR, NOT raises it.

So if your INR is too low you would NOT want to be eating more greens (since that would have the opposite effect than what you want), you would either want to REDUCE your veggie intake AND/OR increase your warfarin dosage to raise the INR

agreed ... and you got the Angry Face of "on the money" from the Queen.

 

[Daniel758]

Set aside his credentials for a moment and just put your thinking cap on. How could he claim that the new tissue valves will last 2x to 3x as long as the previous generation?

Here is the data. 5 years of human data for the Inspiris Resilia in the European arm and 5 years of human data in the US trial, known as The Commence Trial. Oh yeah, and there was 8 months of sheep data from a European trial before each of these trials. None of the above trials establishes that it will last 2x to 3x as long as the previous generation. In fact, they have not even established yet that it will last as long as the previous generation. There is "hope" that the new anti-calcification treatment will allow it to last longer, but at this point it is nothing more than hope.

Edwards, the manufacturer of the Resilia, does not claim that it will last 2x to 3x as long. They would face criminal charges of fraud if they did- and you better believe if there was evidence to support 2x to 3x as long that they would be shouting it from the mountains.

Your surgeon is very experienced. I really hope that he did not tell you that your valve will last 2x to 3x as long. That would be misinformation. I can't know this for sure, but I suspect that you heard him wrong. Perhaps he said the new valves should last 2 or 3 years longer than the previous generation and you heard what you wanted to hear. I sure hope that is the case, because it is very disturbing to me that a surgeon would be spreading such misinformation. Show me an article he has published on the subject that makes such a grand claim and I will believe that it came from him. Until then, maybe he really said it or maybe you just did not understand what he was communicating.

Yes, I am just a random nobody on the internet. But, I have read all the trials mentioned and, setting aside that maybe I am a dunce who can't understand anything, just use common sense please. How can one extrapolate 5 years of human data out 30-60 years? You can't.

But, if you want to talk about your surgeon as the final word because you are convinced that you heard him correct and that he really said 2x to 3x as long, I would challenge his position with the surgeon consultations that I had.

Let's just say for a moment that you are correct and that because you and I are not "doctors" that we really don't know anything, nor can we think critically. I would challenge what your surgeon ostensibly told you with what I was told by two of the top surgeons in the country. I consulted with the head of cardio thoracic surgery at Cedar Sinai and the head of cardio thoracic surgery at UCLA prior to my surgery and I specifically discussed the new generation tissue valves- the Edwards Inspiris Resilia. Both told me about the same thing; at my age of 53, expect to get about 10 years out of the valve and hope for a little longer, because maybe the new treatment will make it last a little longer. Both of these clinics are in the top 5 in the country.

So, if your surgeon really said that the new tissue valves will last 2x to 3x as long as the previous generation, and I am doubtful that he really did, he is wrong to suggest this without evidence. I am just a random internet guy, but the data is the data and I, too, have consulted with surgeons specifically about the valve in question and these surgeons gave me guidance in accordance with the evidence.

This is about making informed choices. I am not suggesting that you second guess your decision to go with a tissue valve, but if you did so with the belief that it will last 2x to 3x as long, so that you will never have to face a reoperation, well, I'd say you did not make an informed choice. But, you have the valve you have, so don't look back. We choose the valve that allows us to sleep at night. If you need to tell yourself that your valve is magic and will last 2x to 3x as long, then tell yourself that. But, if you present that misinformation here, this random internet guy will challenge the reasoning for your statement and ask you to support it with actual data. "My surgeon said so" Are you sure? Did he really say that or did you just hear what you wanted to hear?

And to be crystal clear, I am not advocating to not listen to your cardiologist or your surgeon. I personally had in depth discussions with both about the research and they were there with me at every step of the way in my decision process. But, if your surgeon is telling you something that sounds off- such as, "these new valves will last 2x to 3x as long" please ask him how he knows this and ask that he back it up with evidence. Be your own advocate, seeking a second opinion of what he tells you, if something does not sound right. If you are in your 40s and your "new" tissue valve only lasts 8-12 years, as would be expected, vs 40 years, it will be you facing a reoperation and not your surgeon. So, listen to your doctors, but at the end of the day, be your own advocate.

You deflected my message from my first post (which was that people will be better off listening to medical advice from their doctors than from people here on this forum who believe that they are qualified to give medical advice) into a "whatabout you" argument about me.

Whether or not you believe my doctor did or did not discuss something in a consultation, I'm uninformed, etc., etc. is irrelevant to the point of my original post which was, again, that people, especially new, vulnerable people in the middle of their heart valve ordeal, would be much better off listening to their doctors, etc. than to forum posters here that, for some reason (Ego? Arrogance? Ignorance? Who knows what else?), believe they are as qualified to give medical advice as actual doctors, medical professionals, etc.

My second "long winded" post was meant to show the obvious and vast contrast between who our medical professionals are and the depths of their qualifications, experience, knowledge, expertise, etc. vs who the random internet forum posters here are and highlighting their obvious lack of qualifications, etc., to dole out medical advice, using yourself as just one example.

Even the most "informed" of your group, Pellicle, no matter how many internet rabbit holes he goes down or how many studies he believes he understands, he's never going to even remotely come close to the expertise of my doctor/surgeon above (or any doctor/surgeon/etc. for that matter).

It's just reality.

Dunning-Kruger may tell you guys differently but it's the truth.

You yourself consulted with two world class doctors from two world class facilities who, I'm sure, are just as accomplished, experienced, knowledgable, etc., as my surgeon.

Can you honestly look at these doctors' experience, qualifications, etc. and actually believe that it would be better for anyone here on this forum, especially newbies, to disregard advice from them in favor of any advice from any poster here?


Again, to anyone else here reading this:

Please give yourselves the best chance at the best life and get your medical advice from your actual doctors, not from random posters here on this forum.

 

[Chuck C]

You deflected my message from my first post (which was that people will be better off listening to medical advice from their doctors than from people here on this forum

Actually, I agree that people should listen to their doctors, rather than random internet people. But, when you said this:
"there is a group of posters here that pose a risk of disinformation"

In that you have spread what I would rank as one of the most egregious points of disinformation that I have ever come across on the forum, I could not help but see the irony in your caution. And, I would suggest that when a random internet person claims that the new tissue valves will last 2x to 3x as long as the previous generation, as you did, that they consult with their cardiologist and surgeon about that before accepting it as fact. Also, if something a physician says sounds too good to be true, ask for support for the claim and second opinions are generally a good idea, especially in such circumstances and with so much at stake in the decision.

My second "long winded" post was meant to show the obvious and vast contrast between who our medical professionals are and the depths of their qualifications, experience, knowledge, expertise, etc. vs who the random internet forum posters here are and highlighting their obvious lack of qualifications, etc.,

Yes, there is a big gap in qualifications. But, us little folks still should ask questions of our professionals and not accept everything that they say as perfect. There can be risk in putting medical professionals on too high of a pedestal. We have seen plenty of examples here in which a physician told someone something that flies in the face of evidence. You have claimed that your surgeon told you the new tissue valves last 2x to 3x as long as the previous generation. I expect that you probably misunderstood him, as this would be a completely unsupported claim, and I would not expect someone of your surgeon's qualifications to make such a wild claim. If he did really make the claim, it is the first time that I have heard of anyone make such a claim. Perhaps you can ask him if you understood him correctly and if you did, perhaps he would be willing to share the evidence he is basing this on, which seems to have eluded the entire world of medical science except for you and him. I've read all the studies on the valve in question and there is only 5 years of human data, so we are embarking into a fantasy world of new math it would seem to me to make such a claim. So, please ask him to share how he knows this.

Can you honestly look at these doctors' experience, qualifications, etc. and actually believe that it would be better for anyone here on this forum, especially newbies, to disregard advice from them in favor of any advice from any poster here?

Is this a trick question? It really depends on what the physician said to the person. Folks on this forum, including myself, have been told some very interesting things by medical professionals. I was told that I must never shave again now that I am on warfarin. Dick0236 has over 50 years on warfarin, and I'd rank his experience in this area, along with the many other members who have been on warfarin for decades, higher than this medical professional when it comes to whether a person can safely shave on warfarin. Many folks have been told by their doctors that anyone on warfarin must no longer eat greens. Are we playing doctor when we share from our experience that this has not been our experience, or when we direct folks to studies which demonstrate that people on warfarin can eat greens? Or if the doctor said it, it must be true, end of story?

So, yes, there can be trouble if someone believes random internet people against everything that their physician tells them. I think this is happening a lot these days, for example, regarding vaccines and covid. But, I'm not seeing this as a major issue here on this forum. From my observations, thankfully, this board respects science based views backed by evidence, with a few exceptions from time to time, such as the claim that you made about valve life expectancy. People usually tell folks to get a second opinion if something seems off about something their doctor is telling them or runs counter to their own experience. On the other hand, there can also be danger in accepting everything that a physician says as the gospel truth, without asking follow up questions. Even surgeons should be asked to support wild claims, most especially when they run counter to the body of medical evidence out there.

 

[Superman]

It is rather humorous watching Daniel758 repeatedly do exactly what he claims others do here. I believe the logical fallacy he leans on most is the Appeal to Authority. But it’s still second hand info from him claiming what he thinks his surgeon told him.

However when others post links to actual peer reviewed data and suggest folks read it and make informed decisions or ask their doctors about it, well, that is somehow spreading misinformation on the inter webs. Or when others share their real world 30 plus years experience living with the outcome of a choice made - that can’t be trusted.

The mind boggles.

 

[Eva]

Hello All, I think we all have shifted from Paul’s original post and concern!! Hijacking is not fair To any post/poster!

 

[Superman]

Hello All, I think we all have shifted from Paul’s original post and concern!!

Who’s Paul?

 

[Eva]

Who’s Paul?

Exactly!! My point.

 

[Chuck C]

The good news is that Paul got all better and has long since moved on from the thread.

At this point, the thread has sort of become this:

 

[Eva]

@Chuck C, Good news! Do we know what caused the bleeding!

 

[Chuck C]

@Chuck C, Good news! Do we know what caused the bleeding!

Kidney stones.

If you look about a dozen posts up you will find Paul's post:

" Thanks for all your replies guys , I am now doing well thanks and the 6 days of urinating blood was diagnosed as kidney stones which has now been resolved , but I must admit was a extremely painful experience . Regards Paul "

 

[pellicle]

Hello All, I think we all have shifted from Paul’s original post and concern!! Hijacking is not fair To any post/poster!

Firstly we went back to it the instant Paul clarified his problem was kidney stones

https://www.valvereplacement.org/threads/bleeding-issue.888328/post-914394
Indeed if you go to that point and start scrolling down you'll see the responses. So the actual question was answered (by doctors and time) and everyone involved was informed as to the outcome eventually.

Secondly its surprising how often within a thread someone asks a question tangential to a thread and gets a valuable answer. The first pages were devoted to this but as it was clear that many questions were asked about anxieties people have that were triggered by the title they were addressed.
How is this not fair and to whom should we be fair to??

This is a discussion forum, and discussions often segue all over the place. Sometimes they even come back.

 

[carolinemc]

You deflected my message from my first post (which was that people will be better off listening to medical advice from their doctors than from people here on this forum who believe that they are qualified to give medical advice) into a "whatabout you" argument about me.

Whether or not you believe my doctor did or did not discuss something in a consultation, I'm uninformed, etc., etc. is irrelevant to the point of my original post which was, again, that people, especially new, vulnerable people in the middle of their heart valve ordeal, would be much better off listening to their doctors, etc. than to forum posters here that, for some reason (Ego? Arrogance? Ignorance? Who knows what else?), believe they are as qualified to give medical advice as actual doctors, medical professionals, etc.

My second "long winded" post was meant to show the obvious and vast contrast between who our medical professionals are and the depths of their qualifications, experience, knowledge, expertise, etc. vs who the random internet forum posters here are and highlighting their obvious lack of qualifications, etc., to dole out medical advice, using yourself as just one example.

Even the most "informed" of your group, Pellicle, no matter how many internet rabbit holes he goes down or how many studies he believes he understands, he's never going to even remotely come close to the expertise of my doctor/surgeon above (or any doctor/surgeon/etc. for that matter).

It's just reality.

Dunning-Kruger may tell you guys differently but it's the truth.

You yourself consulted with two world class doctors from two world class facilities who, I'm sure, are just as accomplished, experienced, knowledgable, etc., as my surgeon.

Can you honestly look at these doctors' experience, qualifications, etc. and actually believe that it would be better for anyone here on this forum, especially newbies, to disregard advice from them in favor of any advice from any poster here?


Again, to anyone else here reading this:

Please give yourselves the best chance at the best life and get your medical advice from your actual doctors, not from random posters here on this forum.

We do get our information from actual doctors, that we share that information as well as personal experience and advise others to seek medical treatment and advise. No one here is saying they are the ultimate medical experts or professionals. We share years of experience and knowledge. Not sorry we are not whom you think we should be. But no one here has ever said take this information as is and ignore medial expert. Many of us was born with our heart issues and have to deal with it the rest of our lives. Many have valve replacements and have had many bypass surgeries and we just share the experiences and advise of going to medical professional. If you want better information, go to a Cardiologist, a medical professional that has a medical degree. But here we share the first-hand experience that a medical professional lack and the time to explain certain procedure, for a lot of Cardiologists are overloaded with patients and not enough time to explain everything. Have a nice day.

 

[Eva]

Firstly we went back to it the instant Paul clarified his problem was kidney stones

Indeed if you go to that point and start scrolling down you'll see the responses. So the actual question was answered (by doctors and time) and everyone involved was informed as to the outcome eventually.

Secondly its surprising how often within a thread someone asks a question tangential to a thread and gets a valuable answer. The first pages were devoted to this but as it was clear that many questions were asked about anxieties people have that were triggered by the title they were addressed.
How is this not fair and to whom should we be fair to??

This is a discussion forum, and discussions often segue all over the place. Sometimes they even come back.

Pellicle, I always value your “good” responses and researches and appreciate your genuine help and shared experiences as well as of many other genuinely caring members.

I agree this is a discussion forum, but my opinion is:

1- It is fair to the Poster that all posts are related to his main question, as well as to someone who’s searching for “blood in urine” to get quicker to the answer. I, for example, got lost with all other bleeding issues/fights, etc. and missed Paul’s response and the cause of the bleeding. (Maybe I should blame it on my age )!
2- The “bleeding gum” is different from “blood in urine” though both are about bleeding! It’s a different question and not from the original poster. so, it felt like the original post was “hijacked”!
A separate new thread may have received more responses/attention which is fairer to the poster.

When anyone is going through new posts’ titles and does not care for “urine in blood” would miss answering to a “bleeding gum” post!

I’m a big admirer/believer that it is wise to learn from others’ experiences and wiser for anyone to verify the information on their own.

Many doctors unfortunately disregard their patients’ intelligence or experiences, as it’s something they were not taught about at their universities. And here’s when experience is important for the doctor to learn from real life that is not in the books. !

I, personally, appreciate and have benefitted from all the advice I received here from members spending time to genuinely help!

 

[Eva]

Kidney stones.

If you look about a dozen posts up you will find Paul's post:

" Thanks for all your replies guys , I am now doing well thanks and the 6 days of urinating blood was diagnosed as kidney stones which has now been resolved , but I must admit was a extremely painful experience . Regards Paul "

Thanks for pointing it out. I got dizzy and lost with all the others

 

[slipkid]

Please give yourselves the best chance at the best life and get your medical advice from your actual doctors, not from random posters here on this forum.

Sadly I've gotten more BAD, WRONG, and totally MISINFORMED "advice" from my Drs than anyone has posted on this forum (or some others I had to consult when what the Drs were saying didn't add up). Not even counting all the screwups Drs have inflicted on my friends & family members, who blindly trusted them and suffered needlessly (or even died) as a result.

Patients need (if they have the time, capacity, and brainpower) to try to digest and understand what their Drs tell them and ask intelligent questions not just to the Dr but at forums like this with other people who have gone through similar medical situations then make up their own minds as to what is really going on. There are some VERY BAD DRs out there, and even the "good" ones make mistakes all the time.

My PCP at the time totally misdiagnosed my heart condition and almost killed me. It is a miracle that I am even "alive". In hindsight I should have trusted my sister who made the right diagnosis but I wrongly chose to listen to my Dr. Painful lesson learned (for about the 100th time btw).

 

[Warrick]

Sadly I agree with @slipkid
A friend of mine had his bicuspid valve replacement and aneurym repair go horribly wrong due to a mistake by the surgeon (who I’m sure has a list of accolades as long as your arm) which eventually resulted in him having to have a heart transplant.
Then theres this doctor who considers himself an anticoagulation expert-
https://i.stuff.co.nz/timaru-herald/news/67608838/sons-say-doctors-sloppy-attitude-caused-dads-death

 

[Chuck C]

Sadly I agree with @slipkid
A friend of mine had his bicuspid valve replacement and aneurym repair go horribly wrong due to a mistake by the surgeon (who I’m sure has a list of accolades as long as your arm) which eventually resulted in him having to have a heart transplant.
Then theres this doctor who considers himself an anticoagulation expert-
https://i.stuff.co.nz/timaru-herald/news/67608838/sons-say-doctors-sloppy-attitude-caused-dads-death

Such a sad article you linked. Makes a statement about those who say over and over again to ignore everything you read on this forum by "random posters" and just listen to your doctor.

"... I know the doctor is human .."

Yes. That.

 

[Warrick]

My father knew Ian Hole, and knew he had a mechanical valve.

 

[carolinemc]

Such a sad article you linked. Makes a statement about those who say over and over again to ignore everything you read on this forum by "random posters" and just listen to your doctor.

"... I know the doctor is human .."

Yes. That.

What we are doing here is to listen to the doctor and advise here, to walk hand in hand. I advise those who are having problems with those kind of doctors, who also do not listen to the patient, to get another cardio who will listen. If you cannot talk to the doctor and he/she only listens to themselves, they make the worst kind of doctors who are in it for the money, although in America, they are not making money like they used to.