Hi from Brazil

[Jack Julles Jackson]

I don't know the difference in cost for the tissue valve vs. the mehanical valve in Brazil, but I wonder if the doctor who recommended the tissue valve thought he was saving the health system a few dollars by recommending what is the wrong type of valve for you.

Also - you said at the beginning that you weren't managing your diabetes very well. Perhaps the doctor thought that you wouldn't be compliant in your INR management, either, so he chose a valve that probably won't require that you take warfarin.

Theres a miss understanding here. My diabets is great. I lost 30kg in the last couple of years. My highblood pressure thats was not great. But I month ago I became to regulate my alimentatition thinking on the heart, becouse now I cant do much exercises becouse of the failing natural valve and now my blood pressure is fine. Cardiologist sayd that today.
I think may he told me that becouse of the word "cigarrets" and heavy drinking on weekends. But I dropped all that a month ago.
Man, I was not drinking until faint or something like that, but I was drinking a lot and eating lots of salt. I was avoiding sugar, but dont thinking about salt.
I was smoking like 5 cigarrets a week, tops! Five units, not packeges. I began that frequence this year, before that was very, very less. I know, its stupid to smoke even whit out a bicuspid valve. But stressed people do stupid things.
Ill talk to him again.

 

[Jack Julles Jackson]

Significant point

I agree. The text above explains my theory.

 

[pellicle]

Hi

I agree. The text above explains my theory.

glad to hear that.

Since I've not said this plainly I'll throw in that the negative side to picking a mechanical valve is INR management. You either have to:

1. submit to a clinic who will manage you (and all that implies with being restricted and commanded)
2. manage yourself (with all that implies with your own commitment to the job of avoiding harm and being dilligent)

as well you have to commit to *actually* taking your drug daily as your dose dictates (based on the INR measurements).

If you fail to do that you face strokes (and potentially permanent neurological damage) or ischemic events in muscles (which can have other dire consequences.

https://www.valvereplacement.org/th...-compliance-with-an-on-x-aortic-valve.888128/
so you need to take that part of your decision in a fully honest with yourself way, if you don't then you will be subject to the statistics which push surgeons to recommend tissue valves.

Lastly when reading the literature on heart valves keep in mind the statistics of average patient age and keep this picture in mind when you read "younger patient"

As I've said before, I'm happy to help you with INR management.

 

[Jack Julles Jackson]

Hi

glad to hear that.

Since I've not said this plainly I'll throw in that the negative side to picking a mechanical valve is INR management. You either have to:

1. submit to a clinic who will manage you (and all that implies with being restricted and commanded)
2. manage yourself (with all that implies with your own commitment to the job of avoiding harm and being dilligent)

as well you have to commit to *actually* taking your drug daily as your dose dictates (based on the INR measurements).

If you fail to do that you face strokes (and potentially permanent neurological damage) or ischemic events in muscles (which can have other dire consequences.

https://www.valvereplacement.org/th...-compliance-with-an-on-x-aortic-valve.888128/
so you need to take that part of your decision in a fully honest with yourself way, if you don't then you will be subject to the statistics which push surgeons to recommend tissue valves.

Lastly when reading the literature on heart valves keep in mind the statistics of average patient age and keep this picture in mind when you read "younger patient"

View attachment 889545

As I've said before, I'm happy to help you with INR management.

Thanks

 

[pellicle]

Thanks

welcome

I see that I missed the OR between 1 and 2

Best Wishes

 

[Jack Julles Jackson]

welcome

I see that I missed the OR between 1 and 2

Best Wishes

Cant I do both? Make my all research and care but still in touch with professionals who work everyday with that?

 

[pellicle]

Cant I do both? Make my all research and care but still in touch with professionals who work everyday with that?

You will find that clinics command you in the main, although I have heard of a few that are amenable to receiving input from you.

Normally they want to just tell you what to do.

I suspect that the issue here is that you have never done this, this never dealt with them, and thus have no clear concept of what I'm saying means.

 

[Jack Julles Jackson]

You will find that clinics command you in the main, although I have heard of a few that are amenable to receiving input from you.

Normally they want to just tell you what to do.

I suspect that the issue here is that you have never done this, this never dealt with them, and thus have no clear concept of what I'm saying means.

For clinics you mean doctors or institutions?

The last cardiologist I saw told me, in time, I would test my INR in periods like 6 in 6 months. I do not intend to do that. I surely will test a lot more. Im also studying about the home test. Haha. But I will hear carefully every professionals I get access, but also think my self and research

 

[Jack Julles Jackson]

Also

You will find that clinics command you in the main, although I have heard of a few that are amenable to receiving input from you.

Normally they want to just tell you what to do.

I suspect that the issue here is that you have never done this, this never dealt with them, and thus have no clear concept of what I'm saying means.

Or are you talking about the surgery? Sorry for the bad english understending.

 

[pellicle]

@Jack Julles Jackson

firstly you say : "Research and Care" ... I'll get back to that at the end

I wonder if perhaps a description of an INR clinic is in order here (perhaps it will beenfit others?) and perhaps others can agree or disagree.

So starting with an overview: an INR Clinic may be attached to a hospital or may be part of a Pathology organisation (to whom INR testing is rather akin to the lowest level worker putting sample tubes into a machine which automates the process to make it cost effective and less likely that mistakes occur (not immune).

Somebody else gets that INR number (most likely on a computer, and probably nowhere near where the measurement was made) and looks at that number and compares that with "the range".

Probably this has even got a large Corporate Software Systems involved which is designed to make it simple for the person (who will likely be a woman with no actual medical training, or at best a nurse who has done a course). The systems that I've read of "brag" about enabling the Clinic to achieve 67% of your time inside your designated theraputic range (this is a key indicator and is often called TTR). [aside, personally with my method I'm > 95% TTR year on year.

Logically a clinic can't be getting paid much per patient and per patient contact and so they basically make sure that everyone works like an assembly line process.

If you've ever been a process worker you'll know that this means

• no time to talk things over
• no time to think
• no encouragement to waste time
• personnel Key Performance Indicators (KPI) set to maximise throughput

They will read the screen and do what the screen says they should do. They won't ring you up and have a conversation, ask how you are, what did you eat ... it will just be instructions (and if you are out of range probably stupid and confusing ones like "take 5mg tonight, then 7 on Wed, Fri and Sunday and 7.5 on Mon and Tues and test again Wednesday).

I know of a few people here who have good relationships with their INR clinic, but this will require that the clinic is even amenable to that (and not a bureaucratic machine) and that its personal level enough for them to build a trust relationship with you (and trust will be needed because if your INR does not return properly they know their arse will get kicked and you will just be angry).

So, please let me know what you meant by research and how you'll validate that to them and convince them to take a risk ...

Best Wishes

 

[pellicle]

For clinics you mean doctors or institutions?

see my following post, doctors don't manage INR ... they literally don't have a clue about how to.

 

[pellicle]

Or are you talking about the surgery?

bingo ... I'm talking about INR management (which I thought was the topic ) because you won't be doing your own surgery on yourself, but you will be managing your INR which was the thing under discussion.

for reference:

Since I've not said this plainly I'll throw in that the negative side to picking a mechanical valve is INR management. You either have to:

1. submit to a clinic who will manage you (and all that implies with being restricted and commanded)
2. manage yourself (with all that implies with your own commitment to the job of avoiding harm and being dilligent)

as well you have to commit to *actually* taking your drug daily as your dose dictates (based on the INR measurements).

 

[pellicle]

I would test my INR in periods like 6 in 6 months. I do not intend to do that

this is so old school its like pouring boiling oil on bullet wounds as done until modern times. That treatment (boiling oil) resulted in gangrene onset, which let to amputations which led to new gangrene onset, more amputations and 60% death rates from the treatment for bullet wounds

 

[carolinemc]

Thanks

And in choosing St. Jude's mechanical valve and having to do INR and being a type 2 diabetic here, I have no problems with my INR and diabetes management. And I have the lab manage the dosage. As ling as you manage taking your meds everyday, should be no problems. Been at the dosing since 2001, bypass and St., Jude's valve. Type 2 diabetic since 2003.

 

[Jack Julles Jackson]

@Jack Julles Jackson

firstly you say : "Research and Care" ... I'll get back to that at the end

I wonder if perhaps a description of an INR clinic is in order here (perhaps it will beenfit others?) and perhaps others can agree or disagree.

So starting with an overview: an INR Clinic may be attached to a hospital or may be part of a Pathology organisation (to whom INR testing is rather akin to the lowest level worker putting sample tubes into a machine which automates the process to make it cost effective and less likely that mistakes occur (not immune).

Somebody else gets that INR number (most likely on a computer, and probably nowhere near where the measurement was made) and looks at that number and compares that with "the range".

Probably this has even got a large Corporate Software Systems involved which is designed to make it simple for the person (who will likely be a woman with no actual medical training, or at best a nurse who has done a course). The systems that I've read of "brag" about enabling the Clinic to achieve 67% of your time inside your designated theraputic range (this is a key indicator and is often called TTR). [aside, personally with my method I'm > 95% TTR year on year.

Logically a clinic can't be getting paid much per patient and per patient contact and so they basically make sure that everyone works like an assembly line process.

If you've ever been a process worker you'll know that this means

• no time to talk things over
• no time to think
• no encouragement to waste time
• personnel Key Performance Indicators (KPI) set to maximise throughput

They will read the screen and do what the screen says they should do. They won't ring you up and have a conversation, ask how you are, what did you eat ... it will just be instructions (and if you are out of range probably stupid and confusing ones like "take 5mg tonight, then 7 on Wed, Fri and Sunday and 7.5 on Mon and Tues and test again Wednesday).

I know of a few people here who have good relationships with their INR clinic, but this will require that the clinic is even amenable to that (and not a bureaucratic machine) and that its personal level enough for them to build a trust relationship with you (and trust will be needed because if your INR does not return properly they know their arse will get kicked and you will just be angry).

So, please let me know what you meant by research and how you'll validate that to them and convince them to take a risk ...

Best Wishes

I will search more, but I dont think that kind of clinic exist here in Brazil

 

[Jack Julles Jackson]

And in choosing St. Jude's mechanical valve and having to do INR and being a type 2 diabetic here, I have no problems with my INR and diabetes management. And I have the lab manage the dosage. As ling as you manage taking your meds everyday, should be no problems. Been at the dosing since 2001, bypass and St., Jude's valve. Type 2 diabetic since 2003.

Nice. Good to know.