INR/Coumadin showdown

[rnff2]

I need to vent...if I may.

I have been on coumadin since January my cardiologists nurses are supposed to be managing my dose. I home test weekly on Mondays.

The first few months I had no problems. Then the nurse I was working with went on medical leave. The past 6-8 weeks the other nurse can't get it straight. They call me when I'm in range they don't call me when I'm not in range. They have no idea what coumadin dose I'm taking or what my INR range is. I can't imagine a lifetime of poor coumadin/INR management.

So here's my plan. I am going to put my INR and coumadin history and all of their mistakes down on paper and show my cardiologist and tell him I am going to self manage my dose from now on unless I really get out of range and need assistance and then I will call him. After that I'm going to request a meeting with the office manager. I'm so frustrated that they can't seem to get things right. If they are so messed up with me what is happening to patients who don't know any better. I believe as a nurse and a patient on coumadin they are putting their patients at risk for brain bleeds and blood clots. I want to make sure that someone takes some accountability for what's happening to me and probably many other patients. I believe that the cardiologists are unaware of what's been happening.

As a side note I'm a nurse and both my cardiologist and family doctor know I do adjust my dose and I'm very involved in my healthcare.

 

[pellicle]

Hi

I need to vent...if I may.

not only may you, but this is the chimney!

The first few months I had no problems. Then the nurse I was working with went on medical leave. The past 6-8 weeks the other nurse can't get it straight. They call me when I'm in range they don't call me when I'm not in range. They have no idea what coumadin dose I'm taking or what my INR range is. I can't imagine a lifetime of poor coumadin/INR management.

well that's hardly "top shelf" is it!

So here's my plan. I am going to put my INR and coumadin history and all of their mistakes down on paper ... I believe as a nurse and a patient on coumadin they are putting their patients at risk for brain bleeds and blood clots. I want to make sure that someone takes some accountability for what's happening to me and probably many other patients. I believe that the cardiologists are unaware of what's been happening..

I think that's an excellent plan!

I personally think that the corollary of all the findings around the world that "selected"*(*) patients do better on self management of INR than through a clinic is that all the harm that comes to patients from INR related injuries is essentially a case of malpractice (which you are about to present evidence on for a single case).

As it happens Saturday am is my INR measuring time so this is perfectly timed reading

Best Wishes on that path and I hope you succeed .... I'm of the view with such presentation of detailed records on your part your cardio will approve you for self management ... dunno how that swings with insurance the way it operates in the USA

(*) = can't be a stupid idiot

 

[LondonAndy]

I agree it's a good plan! To be honest, I self manage my Warfarin/Coumadin dose, based on weekly self-testing, and although I report my INR to my anti-coagulation clinic on the dates they want it, I don't tell them of my dose changes. I am also diabetic, and it is normal to manage your own insulin doses, so whilst Warfarin is a little different it is not rocket science, though I agree with Pellicle's caveat! I did my research online about dose management, how long warfarin takes to take effect, and if a weekly measurement is getting close to either maximum or minimum limits I adjust the dose gently. As a result I have been over 98% in range for the last year.

When, in the early days, my INR dropped fairly significantly out of range (for me that meant a reading of 1.9, confirmed by a blood draw at the local hospital, when my therapeutic range is 2.5 - 3.5), my clinic refused to give me an injection of Fragmin despite the fact that my Surgeon had written this instruction in my Warfarin management/record book. I went to see him at the specialist hospital and he immediately gave me a prescription for the Fragmin, saying that he would write a complaint to my local hospital.

I accept this approach will not suit everyone, and it may be somewhat controversial, but I'd rather take responsibility for my treatment where I can rather than rely on others.

 

[pellicle]

Hey

.. As a result I have been over 98% in range for the last year..

cause for a cheer from the small crowd!

 

[rnff2]

Thanks for letting me vent. Lol.

I have been self managing quite a bit since getting my home monitor. I have been doing really well keeping in range, I eat what I want and I'm pleased with my results.

I think if I leave my results going to the cardiologist office and he orders my coumadin it shouldn't be an issue with my insurance...basically it's what's happening now only I will control my dose and not rely on and unreliable system. If my cardiologist won't do it my primary care doctor has already offered to help me.

Pellicle...a big thanks to you for the Google docs. I have everything I need to prove to my cardiologist what's been happening, or not happening.

LondonAndy...98% is fantastic. Good for you! I only hope I'm that good someday.

 

[Protimenow]

I've been self managing (sort of) since 2009, when I got my first meter. I had a TIA a few years ago because my METER was giving me the wrong results. (It was telling me 2.6, when the hospital lab said 1.6). Since then, I've been self-testing, but using the lab's blood draw for verification of my meter's results.

The protocols that many anticoagulation 'clinics' use is outdated and, technically, potentially very dangerous. My current clinic likes monthly blood draws. Even though they realize that it takes a week or so below range to produce a clot, they're comfortable with monthly blood draws. (In defense of that hospital that refused to give you heparin because your INR was slightly too low, you can safely go a day or two, possibly more, with your INR below 2.0 - they probably should have left you alone, or asked you to take an extra 1/2 dose that night, then test again).

I've gotten bad advice, wrong advice, dangerous advice from various clinics (regular, medical clinics) that mishandled my drawn blood, and from clinics that should know better.

If a doctor or clinic's instructions for minor adjustments seem to make sense, I follow them.

I have tested many different meters -- ruled out InRatio (at least, the version and strips from two years ago) as too wildly inaccurate, the ProTime as mostly accurate but a pain to use - plus the strips must be kept refrigerated, and narrowed my personal choices to the CoaguChek XS and the Coag-Sense. Both are pretty accurate. The CoaguChek XS usually gives a result that it slightly higher than the lab's results. My personal choice, the Coag-Sense gives me a result that is usually slightly lower than the blood draw.

I prefer a meter that gives me a result that is slightly lower than the blood draw because I am comfortable that if it gives me a 2.5, I know that the lab results will be equal to or higher than the lab. Conversely, if the CoaguChek XS gives me a 2.5, I'd be concerned that the lab value may be 2.2 or 2.3 - still safe, but marginally so.

The whole issue of clinical testing is slightly broken (at least, here in the United States). They operate on the old assumption that it's difficult and impractical (and expensive) for people on warfarin to go to the lab for testing and there's no possibility of home testing with an accurate meter, so they're comfortable with the risks that extending the period between tests for people who are 'in range' to as long as two months. Many of us have to rely on our meters, with monthly blood draws used as checks for accuracy.

Sure, there are people who can't self-test. But others should be able to do this for them - or a quick trip to a local clinic or doctor's office for a simple test with a meter should be available for most people. Visiting Nurses or others who are trained in testing procedures can do the testing. Although I don't always take my own advice, testing weekly - or at worst - every other week is important for making sure that the INR doesn't fall or rise into a dangerous range.

 

[pellicle]

Hey Ho

...In defense of that hospital that refused to give you heparin because your INR was slightly too low, you can safely go a day or two, possibly more, with your INR below 2.0 - they probably should have left you alone, or asked you to take an extra 1/2 dose that night, then test again.

Given that I agree with the above it underscores why I advocate strongly towards weekly testing. The assumption that "if you're in every month that your in all the time of that month" is quite flawed. Not least of which is is that the person can start a new medication and not think its a medication (seen that posted here before) and go way high or way low and they're there for weeks.

Then they have a bleed that gets out of control with an INR of 6 or something or stroke and the medical system puts it down the the 'mysteries of warfarin'

only a fool would believe that they are not culpable in that. More so when you consider that self testing is as accruate as a lab and at $6 a test you'd have to be mad to not put that $6 into that weekly. I can't speak for everyone but whenever someone says "Oh I couldn't afford $6 per week" a quick look at their home budgeting reveals quite a lot of non-essentials which could be slashed (smokers being one such group) before health.

The whole issue of clinical testing is slightly broken (at least, here in the United States). They operate on the old assumption that it's difficult and impractical (and expensive) for people on warfarin to go to the lab for testing and there's no possibility of home testing with an accurate meter, so they're comfortable with the risks that extending the period between tests for people who are 'in range' to as long as two months. Many of us have to rely on our meters, with monthly blood draws used as checks for accuracy.

my own INR graph shows I'm > 90% in range (2.2 ~ 3) but the examination of that shows there have been small steering corrections of a mg here or there needed at a few turns. Without my weekly testing and without me spending 10 minutes of time to check and think I'd probably be a statistic too

For the same reasons I wouldn't trust the auto-pilot on a car either (and sit back watching a DVD to pass the time)

 

[Protimenow]

There's the obvious point - and I don't always follow it as well as I should - but it's especially applicable to anticoagulation - WE are responsible for our own personal anticoagulation management. If we KNOW that we should be tested weekly, we should test weekly. If we are comfortable with testing every other week, and don't think that we've changed ANYTHING that could impact INR, then it's a risk that we're taking. If we let some clinic or physician tell us that a test every month, or two, or more, is adequate - and we know better - then we should share the blame when something goes wrong.

It's hard to know WHAT can effect our INR. My activity slowed, and I had some blackberry jam that I made - and my INR dropped, although I didn't expect it. When I get more active, and lose a few pounds, I expect that my dose will probably drop back down from 8 mg/day to 7.5 mg/day - but I won't see the change if I don't test for it.

TAKE CONTROL OF YOUR INR. IF YOU'RE TOLD SOMETHING THAT DOESN'T MAKE SENSE, CHALLENGE IT. GET YOUR OWN METER AND TEST REGULARLY.