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Chuck C

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Now -- if whoever sold these hung on to the battery covers and the blue strip guides, they can probably make some fair money - one meter at a time.
I emailed Roche about ordering replacements for the covers and they got back to me:


"Please contact technical support at 800-428-4674 for further assistance."

I'll probably give them a call tomorrow.
 

Protimenow

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Pellicle: There will be a market for the battery covers and blue plastic strip guides.
.
The meters on eBay - probably many hundreds, if not thousands, are sold without the battery covers or the blue plastic strip guides.
These parts will make the meters 'whole' again.

(I'm suspecting that whoever sold the meters to the dealers on eBay removed those two parts to a) make them unusable or b) to make it obvious that they weren't new.
 
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Protimenow

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I'm betting that the price is like: "whAt!"
And I bet that they'll probably want a meter's serial number before giving you a price - and if it's a meter that they dumped onto a reseller, those pieces won't be available.

One thought - there's a vendor who is selling a group of meters 'as is' - but they may be cheap enough that one of us can buy them, remove the two missing parts, and sell them to others here who have bought the meters.
 

Chuck C

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And I bet that they'll probably want a meter's serial number before giving you a price - and if it's a meter that they dumped onto a reseller, those pieces won't be available.

One thought - there's a vendor who is selling a group of meters 'as is' - but they may be cheap enough that one of us can buy them, remove the two missing parts, and sell them to others here who have bought the meters.
I've been in contact with Roche. I should have an update to share in a day or two.
 

MartinF

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I have an HMO and get my warfarin at Walmart pharmacy. 45 3-mg pills costs me $3.51. That's 30 days for me. I don't self test and if I'm in range I get tested every 5 weeks, no co-pay for that. Will be going on Medicare next year and hope that doesn't change. I have a tissue valve and on warfarin for another reason than those with a mechanical valve. My INR is not as critical short term.
I hope you find a good solution that's cost effective and meets your needs.
 

pellicle

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Hi Martin

My INR is not as critical short term.
I appreciate that you are on warfarin for another reason than a mech valve, however if that's thrombosis related (say, AF) then you are perhaps more inclined to a clot than a mech valver. Also you are no less susceptible to a bleed related event if your INR goes high. Say, it was (and you didn't know because it had been 3 weeks) that your INR was 5 and you tripped over and got a light whack on the head. You'd have a significantly higher chance of a life threatening IC bleed.

I wear a seatbelt every time I drive, not just when I think it might be dangerous.

Did you know this for instance?

weekly testing would alert you to things you don't know about.

Its been nearly 30 years of home testing with reliable machines.

...the CoaguChek system, was the first model and has been FDA approved since 1993 for patient self-testing in the U.S.

don't you think its time to stop being told how long is appropriate by labs?

If you're on warfarin your on it because it mitigates a risk.
 

MartinF

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My body was reacting to something on the new valve and started putting blood on the leaflets causing them to thicken. It took about 6 weeks for the leaflets to stop moving from when I stopped warfarin post-OHS. It's a slow process. I would know valve function changes on one of my almost daily walk/runs.
My range is 2-3 and highest it's ever been in 9 years is 3.2. I'm not worried since I'm fairly stable and mostly below 2.5. I'm consistent with my diet with relation to greens etc. that can affect INR.
I did have a change in INR after losing 15 lbs last year. It was lower. They added 1.5 mg a week to my dose. Total dose per week is 28.5 mg.
My biggest problem is when I have a surgical procedure. I can't seem to get a doctor to tell me when to stop warfarin. I had some fatty lumps removed and couldn't get anyone to tell me what to do. I finally followed what my gastro doc had me do before a colonoscopy.
No AF or DVT problems here.
Thanks for the input.
 

Protimenow

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MartinF:
Upped the dosage 1.5 mg a WEEK? Are they dosing you based on weekly total? Are you taking .5 mg every other day, and skipping a day?
Depending on WHEN you take your INR, it may vary from day to day, just because of the different doses.

As far as reducing your INR before surgery or procedures, INRs below about 1.5 or so should be no problem. This usually means skipping warfarin for a day or two before the procedure.

I've found that few doctors understand the way Warfarin works. I've had doctors want to 'bridge' my before or after a procedure. "Bridging' involves injections of a low molecular weight heparin - a painful, unnecessary procedure.

The reason that this is unnecessary is that you can go a week or more (usually days more than this) without any clotting risk - it takes the leafllets in your valve to form clots that are dangerous - and if you start you warfarin after your surgery or procedure, within 3 days or so, your INR will be back to where it was before you stopped taking it.
 

MartinF

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Upped the dose by 1.5 mg per week. I take 3 mg on 2 days and 4.5 mg on the other 5 days. It was 3 and 4 before that. So dose went from 27 to 28.5 mg per week.
I think I stopped warfarin 3 days before procedure and then went back on after it. Would have to look up my notes to be sure.
Most of my INR variations are due to testing after a 3 mg dose day vs. 4.5 mg dose day.
 

pellicle

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Good morning Martin
I see your valve was done in 2012 (about when mine was) and you joined back in 2016. So I know you're not a newbie

I'll assume that this was sort of a reply to my question
My body was reacting to something on the new valve and started putting blood on the leaflets causing them to thicken.
this sounds like thrombosis was forming ...which is a bad thing and one or both of these may happen
  • the valve will clag up and not operate properly (I understand its a tissue prosthesis and in the mitral position right?)
  • lumps of thrombosis can break off and lodge where they shouldn't be blocking blood. This is similar to what DVT does (a clot lodges in a place) or a stroke does.

It took about 6 weeks for the leaflets to stop moving from when I stopped warfarin post-OHS. It's a slow process.
err ... I hope you mean thickening ... the leaflets should still be moving

My range is 2-3 and highest it's ever been in 9 years is 3.2. I'm not worried since I'm fairly stable and mostly below 2.5. I'm consistent with my diet with relation to greens etc. that can affect INR.
well I guess that's good ... but even the veterans here who have stable INR's (and test weekly) will tell you that occasionally there will be a spike for no explanation whatsoever. They adjust and move on.

I did have a change in INR after losing 15 lbs last year. It was lower. They added 1.5 mg a week to my dose. Total dose per week is 28.5 mg.
I see you're dealing with a very old school clinic that still thinks in your total weekly dose. That's actually pretty meaningless not least because you don't take that dose once per week. You take your dose once per day. The decimal in there is even funnier because that means a difference day to day of 0.07mg on a tablet which typically comes in 1mg being the smallest dose, and half a tablet is 0.5 ... something like ten times more than 0.07mg

I'm sure these nutbags think that by talking precision numbers like this to you that you will unconsciously get the impression that they have a clue. Usually they don't.

So your daily dose is 4mg (lets come back to that)

My biggest problem is when I have a surgical procedure. I can't seem to get a doctor to tell me when to stop warfarin.
this is not uncommon and while we all graciously endow the priests in the doctors seat with a presumption of knowledge its often entirely absent (or worse, misinformed). The best way to be entirely sure is "Test and Know Thyself"

Off the top of my head I would say that if you cease warfarin for 4 days that by the time surgery is ready you'll be able to be operated on with an INR of about 1.4 (more or less depends on your particulars which can only be known by measureing).

Here is my last two responses to procedures written up, on the colonoscopy I was more concerned about potentials for bleeds because a friend nearly died from a major bleed just months before mine AND he wasn't on warfarin


and on a toe surgery:

which was less concerning because on limb extremities they block blood flow with a pneumatic pressure device (aka a fat tourniquet sleve)

I had some fatty lumps removed and couldn't get anyone to tell me what to do. I finally followed what my gastro doc had me do before a colonoscopy.

No AF or DVT problems here.
Excellent, but that thrombosis on the leaflets is still a concern. An old view here is that blood cells can be replaced more simply than brain cells. Strokes are permanent and not to be messed with. Meaning that your dose of warfarin is every bit as important as anyone elses.

The stats are what they are for risk, and we know that they are improved to nearly zero (actually the general poulation age related risk) by increasing time inside the therapeutic range to 100%

I have not had a car or motorcycle accident of any nature for many years now (over 30), I've put 40,000km on my motorcycle in the last 3 years and my car (that I've had since 2003) over 300,000km, but I still put on a seatbelt and wear a helmet.

Upped the dose by 1.5 mg per week. I take 3 mg on 2 days and 4.5 mg on the other 5 days. It was 3 and 4 before that. So dose went from 27 to 28.5 mg per week.
I love these quaint quasi formula that they give you. Firstly the dose of 4.5 is 50% higher than 3 ... what the actual F?

Secondly the half life of warfarin is (around) 48 hours ... so the dose you took at the beginning of the week is all but nothing within 5 days.

I think I stopped warfarin 3 days before procedure and then went back on after it. Would have to look up my notes to be sure.
that's close to what I said above

Most of my INR variations are due to testing after a 3 mg dose day vs. 4.5 mg dose day.
that's an assumption and really you have nothing to back it up, but if you already know that why the hell do you continue having a ZigZag dose?
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Anyway, if you are interested (I write as if you are, but I know most aren't) in better managing your INR I'd start with my blog here (which is quite detailed):

and an interesting publication by a medically recognised INR expert here (link).

I guess it varies on the personality type, but if you are interested in the best health outcomes for yourself then you need to be active in doing and aware of what to do. Beware of fluff and nonsense in the advice you receive and always ask "why".

Best Wishes
 

tom in MO

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Sometimes you have to take two different doses. I take 4 mg T, Th, Sat and 4.5 the other days. When I tried a steady dose of 4 or 4.5, I crept up or crept down and out of my 2-2.5 range. Each person is different, I've held my "sweet spot" for over a year.

I'd be real surprised if a cardiologist who prescribes INR and manages patients INRs "knows nothing much about INR management." My cardio knows a lot. I'd expect them to know a lot more than those who play Doctor on the internet and who have at best 1 patient...themselves.
 

Protimenow

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In my experience, most cardiologists know NOTHING about INR management. They're not trained in it, have little concern about INR management, and often leave it to nurses in the office (who also don't have a clue) or Coagulation Clinics (which use often outdated protocols).

Those of use who self manage have our lives in our hands. We HAVE to get it right. It's not playing doctor - it's using recognized tools to manage our INR. We self test, many of us use accurate tables to calculate dosage or dosage changes. When our INRs are in range, it's usually easy to get back into range if the INR changes (which it sometimes does) by making small changes to our dosages.

My cardiologist insisted that I bridge before and after an attempted ablation. He insisted that I get Lovenox - $100 out of pocket for nothing. He didn't have a clue that all it took to get my INR back into range was to resume my usual dosing - within three days, my INR was back where it was supposed to be.

Again - most cardiologists are clueless about INR management.

And - FWIW - how does a cardiologist 'prescribe' INR? (Your cardiologist may be an extremely rare exception and knows a bit about anticoagulation. Most don't)

And, really, there's no harm in maintaining an INR around 3, rather than in the tight 2.0 - 2.5 range. We've gone through this before, but the On-X marketing convinced you and your doctor to aim for that small window. I know that I can't convince you, but using 3.0 as a target provides better protection against clots (and secondary problems like stroke and pulmonary emboli) than keeping your INR closer to 2. I KNOW others WILL agree about this, though.
 
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tom in MO

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Per my cardiologist, whether you bridge or not depends upon the type of valve and the type of surgery. I'd say $100 is a small price to pay to avoid a stroke. My mother in law had to go off warfarin and bridge to get her valve replaced. Guess what...she had a stroke despite bridging. Luckily it was a mild one. She had a bovine valve installed but needed warfarin and a higher INR for other reasons.
 
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MartinF

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I just want to clarify. My cardiologist doesn't manage my anticoag. I was just going to talk to him about my concerns. He probably knows the anticoag Dr since they're in the same small medical group. I've never met or talked to the Dr. in charge of my anticoag in the 9 years I've been on it. Pretty sad.
Anyway, I'll be on Medicare soon and moving to another state so all my doctors will change next year. I hope I find better healthcare.
 

Protimenow

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Gee, if your Mother-In-Law had a stroke, even while she was bridging, then I guess everyone should bridge - even if it didn't help your Mother-In-Law.

$100 is a WASTE OF MONEY if it is for something that is unnecessary.

Clots don't form on the valves for a week or more (according to a Duke Clinic study, it takes a minimum of 10 days for clots to form). After a procedure, taking your normal dose of Warfarin would return your INR to prior levels.

If you are having a procedure, and have stopped taking Warfarin, dropping your INR below 2, and possibly closer to 1, restarting dosing shouldn't cause any risk of stroke. OTOH - if you stay un-anticoagulated for a week or more, there WOULD be a risk.

What happened to your Mother-In-Law was probably unrelated to her state of anticoagulation - she may have had other plaques or blockages that probably would have caused a stroke, anyway. And, as you said, she had the stroke despite bridging.
 

RAS

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Per my cardiologist, whether you bridge or not depends upon the type of valve and the type of surgery.
Agree! In addition consideration should be given to...
  • Whether the valve is in the aortic or mitral position (or both)
  • Patient history with thromboembolic events
  • Other patient conditions and demographic characteristics that may be material to the their risk
Clots don't form on the valves for a week or more (according to a Duke Clinic study,
I'm not familiar with this study and did not find it with a quick search. I would be interested in reading it if you can supply the link. I would be cautious making a blanket assumption that every individual will be fine going a week without bridging when discontinuing Warfarin prior to surgical procedures.

There is not a one size fits all recommendation for these type of decisions. While population studies are a starting point, there is always individual variation. Individual response to Warfarin therapy is highly variable. Likewise our clot and bleeding risk is variable. It's a competing risks analysis, weighing the risks (and consequences) of alternatives for a given individual faced with a surgical procedure. A person with specific bleeding or clotting history will need to weigh that history in addition to considering the population level risks indicated by studies.
 

tom in MO

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I just want to clarify. My cardiologist doesn't manage my anticoag. I was just going to talk to him about my concerns. He probably knows the anticoag Dr since they're in the same small medical group. I've never met or talked to the Dr. in charge of my anticoag in the 9 years I've been on it. Pretty sad.
Anyway, I'll be on Medicare soon and moving to another state so all my doctors will change next year. I hope I find better healthcare.
My cardio group has a team for the coagulation clinic led by a doctor who specializes in anticoagulation. Prescriptions come from him. However, each cardio talks to the individual patient about anticoagulation. In 7 years I used the clinic, I saw no need to spend a copay to visit with the coagulation specialist.
 
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