changes in INR within a week.

[sharky7]

Hi



well here's the thing, there is resistance to being up with best practice for so many reasons, not least the time involved for the clinician. Then there is the psychology of clinicians involved in INR, they really are at the bottom of the Hospital Pecking Order. You'll probably notice that even orderlies at the hospital are more powerful.

Basically surgeons shrug off INR to someone else, and nurses too are only involved gathering the information and plugging it into a system which tells them what to do. They literally have no clue. I learned recently in the UK that one such system (called Dawn) has a claimed efficacy of <55% in range. Wow ... I can do about that with my magic 8 ball INR method for dosing management:



Given that nobody in the structure takes accountability for your INR swings, and worse how many people just don't do what they're told we have the situation we are in now.

Another way to look at it is this: the data shows that the biggest problem is patient compliance (taking their drug) and so from the perspective of a bureaucratic and authoritarian institution like a hospital taking control out of your hands and investing it in their hands is the "safest way" (as they see it).



informed is really a vexed question for so many reasons, not least of which is you are in a position of confusion and from what I've read here utter irrational panic in some cases.

I'd say that this persists well after surgery with the stories we tell ourselves to firm up the confidence we've mad in our decision of who to believe.

Ultimately that is what this place really does. Gives a place where you can rub shoulders with actual people, see and observe what they did and why and then make up your own mind about what you learn here.

Best Wishes

Thank you again my friend, I edited that post you just answered to, and added something that I believe needed to be added, read again, if and when you have a moment, HHO [and also, agreed with everything you now just said! what did ya say doc? the bill is in the mail! NP]

 

[pellicle]

Point being, not sure now if there is one there, just felt like I had to tell someone, and right now you are that someone, thank you for the ear, i feel much better now!

I hope that you're not in that trap now (IIRC you're home testing now).

For some reason I'm reminded of an Australian TV commercial series advertising a private health care (back at a time when the government stared subsidising involvement in private health care by giving tax deduction incentives)





Anyway, from my book manuscirpt (its a WIP)

I began this journey as a valve patient who was being managed by a clinic. I was at first simply frustrated with the cycle of blood draws (because back in 2012 there was considerable resistance in Australia to the accuracy of Point of Care devices, perhaps fabricated because they could see a loss of revenue). I was frustrated with the constant weekly responses to what I should do in response to what they found in the blood they drew; not least because I saw that there was a delay between draw and decision. I knew that this decision would be flawed because we didn’t know what the INR was now. So I was kept something like 70% in range by the clinic and was perpetually in a cycle of being sent to a clinic for a blood draw (which I can assure you got old pretty quick) and then waiting a few days to be informed on what the new dose regime would be. Usually it was a bit complex and something like “take 5mg on Tuesday and Thursday, 7mg the remaining days, test again on Monday”. This seemed bonkers to me, worse it meant that I was always late to work on Monday. They seemed oblivious to my concerns and inflexible. I found myself feeling like a guy talking to a machine; nobody listened, nothing changed.​

So yes I've been there too and trust me, I feel better now

 

[sharky7]

Please remember that our members are not doctors and their information is from their research and things that have happened to those they know and themselves.

Any medical advice given and used is for you to choose after discussing with your own doctor/s. We do not endorse any medical information given.

And that is a good as any disclaimer, and people should and need to know that well, most of us if not all, are not doctors, or surgeons and dont claim to be! What we state here is just that, what we all have been thru so that others may know they are not alone in how we all out here are treated by the medical profession! I would be the first here and now to admit I believe that I am alive because of my brand new Saint Jude Mitral Valve, and I have god knows how many more years left because I take my meds, and listen to those that know better then I do or even perhaps ever will!
So to that I claim and say, is it too much to ask those same professionals to not treat me like a child, and give me as much information and in a way I may even understand some or most of it, to assist me in making informed decisions about what I allow to happen with the carbon based unit god gave to me!
Of course I do not expect doctors to spend hours or even minutes trying to explain to a child why this and why that, when this child has no way to even attempt to comprehend what is going on! now that being said.
I rest my case and thank you to everyone here, and a special thanks to the VALVEADMIN for having this place for all the good it has already done, and will do for those that will be going thru what we have!

 

[carolinemc]

Hello ****,

sorry now that i read my message i notice is lacking information and bit all over the place.

My prescribed INR is 2.0 -3.0 (prescribed by cleveland clinic surgeon)
My prescribed dosing is 5 mg every day
ON-X Mechanical valve

yes i also think hold two days was a bit excessive, i am starting to realize that my local cardiologist does not have much experience with warfarin dosing (she says my ideal INR should be 3.0)

If you have a st. Judes valve, it is between 2.0 to 3.0 that way is should be. And to hold two days at 4.0, should have been hold one day and low dose, and check in one to two weeks. Since you have a OnX valve, it would be different.

 

[pellicle]

Hi Caroline

And to hold two days at 4.0, should have been hold one day and low dose, and check in one to two weeks.

This advice is also a little too heavy handed, as holding for one day in itself would bring me to below therapeutic range (or very close to it). I know this to be the case also for some friends of mine here (who also self test). When combined with the low dose following it most certainly would. Not that such is specifically dangerous because its a short excursion, but this is the benefit of self testing. You get to know your own reactions. If you know many, any diabetic who self tests (are there any other types now?) will confirm this is also true for them.

I know you don't self test but also your point about checking in one or two weeks is also insufficient because by two weeks the entire process will be missed. The person will then get the wrong idea about the actual nature of what's going on.

Test and know is my view.

 

[carolinemc]

Hi Caroline



This advice is also a little too heavy handed, as holding for one day in itself would bring me to below therapeutic range (or very close to it). I know this to be the case also for some friends of mine here (who also self test). When combined with the low dose following it most certainly would. Not that such is specifically dangerous because its a short excursion, but this is the benefit of self testing. You get to know your own reactions. If you know many, any diabetic who self tests (are there any other types now?) will confirm this is also true for them.

I know you don't self test but also your point about checking in one or two weeks is also insufficient because by two weeks the entire process will be missed. The person will then get the wrong idea about the actual nature of what's going on.

Test and know is my view.

The testing is accordingly in the USA. So we do things differently in the USA. Nothing wrong after getting an irregular reading on the INR to change dosage and test again one or two weeks later, it give the body time to adjust to the adjusted dosage of warfarin. Experience since 2001. You do what they tell you in your country and we in the USA do it as we are told. Not all self test at home. Have a nice day and this is not opinion, but by experience. Be nice and know things are done differently in every country of planet Earth. Have a nice day and all that.

 

[pellicle]

Good morning Caroline

Not all self test at home. Have a nice day and this is not opinion, but by experience. Be nice and know things are done differently in every country of planet Earth.

yes, you've told us before you don't self test and you've told us before that you don't know anything about the subject

I have no way to do at home testing, no machine and on Medicare in the USA.

also you have said:

https://www.valvereplacement.org/threads/aspirin-in-conjunction-with-warfarin.888875/post-922905

I have no meter, since I use the one at the lab, who are professionals and know how to read the meter and how to dose me if there are changes to be made and when I need to return.

so by your own words you are totally inexperienced and unknowledgeable, so if you were to try to be nice you'd start asking yourself "why do I feel entitled to advise and instruct on a topic I know nothing about and leave to others".

Perhaps you need to reflect on your choice of words too.

So leave it to those who do it, understand it and have experience doing it.

Yours sincerely Being Nice

Pellicle

 

[sharky7]

I have blocked this person, although I clicked and seen the statement that they made to all here, and felt that I needed to make a correction before someone got hurt by what they claimed to be true.
The claim was that here and in the U.S.A. "those with a SAINT JUDEs VALVE the INR should be 2.0-3.0", and this is not true. I am the owner of a SAINT JUDE VALVE and was informed by my Doctors to have and retain an INR of 2.5-3.5!
Those that do not know, need to stop making claims that are not true. And I looked everywhere for this person, and when that statement was made, there were no documents to back it up, and this person does not have the credentials to make a statement like that!
There are a few variables that would indicate a patient needs to have an INR that is not the same as another patient, and this does not matter what country you are in, this is in deed true and a fact! The only ones to decide what the INR needs to be are those medical professionals that are presently attending that patient!
I did not nor do I intend to call anyone out on this, and unless that person draws attention to themselves, this will remain civil!
[I did though notice that I did at first indicate gender, And I did go back and fix that little oversight!]

 

[jeffp]

The claim was that here and in the U.S.A. "those with a SAINT JUDEs VALVE the INR should be 2.0-3.0", and this is not true. I am the owner of a SAINT JUDE VALVE and was informed by my Doctors to have and retain an INR of 2.5-3.5!

St. Jude, as well as the other valve manufacturers, document an INR range that works for their valves. There’s a race for marketing purposes to claim acceptable results at the lowest INR. Like 1.8 vs. 2.0 makes that big a difference in risk of complications per person per year. But marketing often drives product selection.
I get where Sharky7 is coming from, but please remember that recommended INR range varies depending on valve position. Most here seem to have aortic valves. What’s in range for those may be out of range for, say, mitral placements, which usually have a higher recommended range.
[edit - added re: Pellicle’s chart below]: note (a) for column for risk factors increases the target INR. Mitral or tricuspid valve placement or low EF count as risk factors.]
And as he says above, the physician’s recommendation may skew the range target a bit as well.

 

[pellicle]

Hi Sharkey

...The claim was that here and in the U.S.A. "those with a SAINT JUDEs VALVE the INR should be 2.0-3.0", and this is not true. I am the owner of a SAINT JUDE VALVE and was informed by my Doctors to have and retain an INR of 2.5-3.5!

this is to my understanding how it works. There are guidelines and then there are specifics from patient to patient. The patient instructions should supersede the general guidelines by the maker or by the literature. For instance this is a table from the

2021 ESC/EACTS Guidelines for the management of valvular heart disease
Developed by the Task Force for the management of valvular heart disease of the European Society of Cardiology (ESC) and the European Association for Cardio-Thoracic Surgery (EACTS)

doi: 10.1093/eurheartj/ehab395

11.3.1.2 Target international normalized ratio​

Target INR should be based upon prosthesis thrombogenicity and​

patient-related risk factors (Table10)​

note there are prosthesis and patient factors. Its common that there are no patient factors without a prior history of a secondary (post surgery history). The US regulations and guidelines are pretty much that word for word (I would encoaurge the curious to look them up.

Those that do not know, need to stop making claims that are not true.

good luck with that my friend.

The only ones to decide what the INR needs to be are those medical professionals that are presently attending that patient!

agreed

I did not nor do I intend to call anyone out on this, and unless that person draws attention to themselves, this will remain civil!

its my observation that in the last decade of being here while words are often used to express strongly held views, name calling and slurs are rare here. Usually used for deliberate provocation on the part of the caller when they are for the purposes of incitement.

Best Wishes

 

[MdaPA]

Nothing wrong after getting an irregular reading on the INR to change dosage and test again one or two weeks later, it give the body time to adjust to the adjusted dosage of warfarin.

How long does it take your body to adjust to a dosage change? The half-life of warfarin generally ranges from around 20-60 hours depending so if you don't self-test, how would you know ?

we in the USA do it as we are told

The OP did as he/she was told by the Cardiologist but was questioning here if the dosage change was a little excessive. OP was merely seeking "some knowledge from those of you with more experience with warfarin and INR".

Note you are speaking for yourself here.

Not all self test at home.

The OP does self-test.

 

[Justmadi]

The testing is accordingly in the USA. So we do things differently in the USA. Nothing wrong after getting an irregular reading on the INR to change dosage and test again one or two weeks later, it give the body time to adjust to the adjusted dosage of warfarin. Experience since 2001. You do what they tell you in your country and we in the USA do it as we are told. Not all self test at home. Have a nice day and this is not opinion, but by experience. Be nice and know things are done differently in every country of planet Earth. Have a nice day and all that.

I have a St Jude AND I self test with guidance from my PC if I need. Holding a dose, even ONE dose and not testing For a week is, IMO, stupid. LOL..go ahead and report me too!
oh, yeah,,, this is based on experience AND the advice of my Dr . In the USA.
geeeze Louise.

 

[sharky7]

St. Jude, as well as the other valve manufacturers, document an INR range that works for their valves. There’s a race for marketing purposes to claim acceptable results at the lowest INR. Like 1.8 vs. 2.0 makes that big a difference in risk of complications per person per year. But marketing often drives product selection.
I get where Sharky7 is coming from, but please remember that recommended INR range varies depending on valve position. Most here seem to have aortic valves. What’s in range for those may be out of range for, say, mitral placements, which usually have a higher recommended range.
[edit - added re: Pellicle’s chart below]: note (a) for column for risk factors increases the target INR. Mitral or tricuspid valve placement or low EF count as risk factors.]
And as he says above, the physician’s recommendation may skew the range target a bit as well.

I say this to my wife to try and perhaps explain it better to her, and to those of us that are still fairly new to all of this, what the INR is, and why even consider it when taking WARFARIN, etc. INR is the number they go by for the clotting time before it takes for the blood to clot, or begin to clot, after that "blood clot" SIGNAL is sent to the brain!
Why do I have an INR range of 2.5-3.5. Since nothing made by man will ever be perfect, there are odds to getting a blot clot where it causes a stroke or heart attack! When taking WARFARIN and getting your INR within a certain range, it give you a better chance/odds to avoid those blood clots even though with having heart decease, etc., raises that chance! Is this about right, or, how far off am I? So when all of those attending to me, and my health well being balance all of my personal issues and variable's, the INR they have for me is, what it is! Will that stop everyone from having clotting issues, of cause not!
What it does do, I hope, is gives us all a better then just average chance to avoid BLOOD CLOTS that would do nothing but harm, or even end our already short time on this here, globe earth!

 

[tom in MO]

I have blocked this person, although I clicked and seen the statement that they made to all here, and felt that I needed to make a correction before someone got hurt by what they claimed to be true.
The claim was that here and in the U.S.A. "those with a SAINT JUDEs VALVE the INR should be 2.0-3.0", and this is not true. I am the owner of a SAINT JUDE VALVE and was informed by my Doctors to have and retain an INR of 2.5-3.5!
Those that do not know, need to stop making claims that are not true. And I looked everywhere for this person, and when that statement was made, there were no documents to back it up, and this person does not have the credentials to make a statement like that!
There are a few variables that would indicate a patient needs to have an INR that is not the same as another patient, and this does not matter what country you are in, this is in deed true and a fact! The only ones to decide what the INR needs to be are those medical professionals that are presently attending that patient!
I did not nor do I intend to call anyone out on this, and unless that person draws attention to themselves, this will remain civil!
[I did though notice that I did at first indicate gender, And I did go back and fix that little oversight!]

My St. Jude valve originally required an INR of 2-3 which was then changed by the manufacturer to 2-2.5 based upon additional data collected by the manufacturer. My St. Jude valve is in the aortic position, unlike yours in the mitral position, which most likely is why your range is 2.5 to 3.5. My cardiologist says my valve is "robust" and has allowed me to have procedures (e.g. TURP and spinal injection) w/o bridging but just dropping down my INR by stopping warfarin for a couple of days. My cardiologist has me call whenever I start a new medication to assess its effect on my INR.

So my range is prescribed by my cardiologist based upon the manufacturer's recommendation, which is also dependent upon where the valve is positioned. Due to my valve's history bridging is not needed for certain procedures were your INR needs to be higher due to complications with bleeding....these are all a good reasons to allow a professional set your INR range and partner with you when things change.

 

[Eva]

There are guidelines and then there are specifics from patient to patient. The patient instructions should supersede the general guidelines by the maker or by the literature. For instance this is a table from the

Absolutely true re “specifics from patient to another”.
Before I was discharged from the hospital, my surgeon told me my INR should be between 2.5-3.5; YET, in my personal case, not to be alarmed if it goes up to 4…4 is still ok (for me)!

 

[pellicle]

Hi

after that "blood clot" SIGNAL is sent to the brain!

just so that you know, there are many things in the body which the brain is not involved in (I often think reproduction and mate selection is one, but I digress).

Many (nay, the vast majority of) processes are pure chemical cascades, just like falling dominos

I chose this image because it represents amplification also, which occurs in the blood clotting (and many other cascades ones too). The biochemistry of the body is an amazing system (look up the endocrine system).

There is a built in amplification and then "stop" chemistry built into the process.

You can read that article here.

I mention this because its both the how and why of warfarin and what happens in the body as a response to warfarin. Because warfarin is not part of the original mechanism we need to "tune" the system ourselves (with INR and dosing). Just like we do if a mechanism breaks (such as the insulin response can and does break).

Happily INR is much easier to manage than Blood Glucose is, where hourly readings are needed to keep in the ideal range (and strict adherence to diet too).

With Warfarin its just a weekly check and usually nothing triggers it to go awry.

What it does do, I hope, is gives us all a better then just average chance to avoid BLOOD CLOTS that would do nothing but harm, or even end our already short time

this is a point I often make in these discussions, over time people (as we age) find ourselves getting a stroke. We often don't know why until one happens. This risk is expressed in terms of age related risk, and so goes up with age. By us taking warfarin to stop the clots forming as a result of our prosthetic heart valves (or say, a post surgical free gift of AF instead of steak knives) we get the side prophylactic protection of preventing clots. Like wearing a condom to prevent pregnancy and finding out that it also stopped you from getting the clap.

Best Wishes

 

[jeffp]

I’m just going to see where this goes….

 

[ValveAdmin]

personally @ValveAdmin I vote its time to take away the anger button ..

View attachment 889159
we could instead just feel the love (or the likes, or the care ... or STFU)

I honestly don't know what value the angry response brings.

Actually the angry button is a neutral reaction and does not increase the count on your reactions.

And I am seeing how there is great disagreement between some Aussie and USA members on how things are done.

With my Dad, USA VA clinic he had usually 2 weeks between INR testing. But when it went up to abo9ut 7, he was getting tested everyday until it went down. He was on Warfin. And this was before and after a natural heart valve replacement. (not mechanical) So, I would say not everything done in one city or state or country is done throughout the whole city or state the country in the same manner.

 

[ValveAdmin]

Deleted post was quoted here.

I think using the ignore feature to block seeing the posts of those you don't like or don't agree with would make some member's blood pressure lower.
You do not have to see a post from someone you don't like. You have control of this.

 

[pellicle]

With my Dad, USA VA clinic he had usually 2 weeks between INR testing. But when it went up to abo9ut 7, he was getting tested everyday until it went down. He was on Warfin.

sorry to hear about your Dad.

was he drinking grapefruit juice?

https://www.valvereplacement.org/threads/my-monty-python-moment.42094/
worth keeping in mind and its actually backed by science (meaning causal not just correlational)

https://en.wikipedia.org/wiki/Furanocoumarin#Medication_interactions

Medication interactions​

Furanocoumarins have other biological effects as well. For example, in humans, bergamottin and 6',7'-dihydroxybergamottin are responsible for the "grapefruit juice effect", in which these furanocoumarins affect certain P450 liver and gut enzymes, such as the inhibition of CYP3A4 which either activates or deactivates many drugs, thus leading to higher or lower levels in the bloodstream​

None the less, being on warfarin is something which happens to bio-prostheses recipients too, its just that with a mech valve its a certainty you'll need it.

Best Wishes