Importance of self-management

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QuincyRunner

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Similar stories abound on this site but here is another story that demonstrates why we as heart valve patients taking warfarin should take pause before automatically following the instructions of our medical providers: Last Sunday I took my weekly home blood test which showed my INR to be 3.8, slightly above my range of 2.5-3.5. I reported this on-line as I do every week and proceeded to enjoy a little extra broccoli that night to remedy the situation. Since I am in range 90% of the time and since this reading was all but insignificant, I thought nothing about it again until today (5 days later) when I received a call from my doctor's office directing me to take 1/2 of my regular 7.5 milligram dose tonight to correct my high reading of 5 days ago. Well of course that was ridiculous but nevertheless I dutifully acknowledged their instructions before hanging up and proceeding to take my full regular dose. My PCP's instructions erroneously assumed that my elevated INR from last Sunday stayed the same until today and also assumed that I ignored the reading without taking any action and just sat around all week waiting to be told what to do about it. It also assumed that taking 3.75 milligrams of warfarin (which would be almost impossible to do) was the correct course of action in the first place. I actually considered taking 5 milligrams rather than 7.5 milligrams last Sunday, which would have made more sense, but decided instead that eating the broccoli would be much more enjoyable. Finally, since I am testing again in 2 days it makes more sense to wait until then to see if I need to make a dosage adjustment. Although most of us, at least in the U.S., are not permitted to self- manage our warfarin even when self-testing at home, in reality that is exactly what we should be doing. You know best how certain foods and various warfarin dosages affect your INR, and if you don't, you should.
 

Protimenow

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3.8 compared to 3.5 is pretty insignificant. The extra brocolli would have brought it down.

I've found that few doctors understand ANYTHING about INR management -- other than telling you to stop for a day if your INR is above, say, 5.0; or telling you to increase your dosage if it's below 1.8 or so. They don't even have the sense to order a repeat test if the INR is inconsistent with previous trends.

Your assumption that, in the U.S. we're not permitted to self-manage is incorrect. In the past, I've had a clinic that 'managed' my dose - and I was always 'Mr. Consistent' when I went in for a blood test because I had my own meter, and followed a clear course of dosing. This had little or nothing to do with their 'management' (aside from the fact that they prescribed the warfarin).

some medical plans, and, I think, Medicare, use services that charge the insurer a lot of money for supplying you with a monitor and strips, report your INR to your doctor, or have a nurse prescribe the adjustment

I've owned many meters since I started testing in 2009. My doctor prescribes my warfarin. He trusts me to manage my INR - and when I occasionally get a blood test at his offices, it's always within range.

You CAN self-tst and self-manage in the U.S. You can buy a mater on eBay without a prescription, or from some medical suppliers WITH a doctor's prescription. You may need to find a doctor who will prescribe the warfarin. And, if your doctor or a clinic knows what the hell they're doing, you can follow their advice and confirm, through self-testing, that the advice is good.

As far as it being hard to get a 3.75 dose - it sure is. A 3.5 is easier. 3.75 vs 3.5 may not have as much impact on your INR to be worth the trouble of trying to quarter a 1 mg in order to get .25 mg.
 

Keithl

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My new cardiologist and her nurse seem to be trusting me already. We will see what happened, as I put in the comments on the app that I had already tweaked my does and wanted update pills to get me the 5.5 and I got back an email that said they callled in my prescription to the pharmacy. Hopefully they will stay this accommodating.
 

arkiebelle

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I'm pretty new to warfarin and my INR has been all over the place at times. I am so thankful that the heart hospital in my city has a coagulation clinic staffed by RNs who are trained in this area.
 

pellicle

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Hi
Similar stories abound on this site but here is another story that demonstrates why we as heart valve patients taking warfarin should take pause before automatically following the instructions of our medical providers:
glad to hear it went well.

Indeed as I often say, if you don't have money on the race you don't have the same interest. When its your life and your health (and such vast information abounds) then I'm sure you'll have more interest in a good outcome than the clinic manager or your PCP (we call them just GP in Australia)

BTW, if you want to look it up you'll find that the amounts of broccoli or spinach needed to make a significant effect to INR are rather large. There's posts here on that but if you can't find them let me know.

Oh, and to address the other comments: yes a prescription will be needed almost everywhere in the civilised world, but (for instance) my Dr just gives me the prescription when I visit and I go off and use it as I see fit.

Seeing my cardio today and we'll probably glance over my data although after this long he's more interested in discussing espresso making techniques with me now ;-)
 

Keithl

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I believe this goes further than self management of INR. People (particularly in US) are lazy and just do whatever their doc says. My father was one of those and while he lived to be 80 I am sure he would have lived longer had he questioned some of his doctors. No one, repeat no one has a more vested interest in your health than you do. I do all my homework and have found doctors that actually enjoy a patient that is well informed. Even my surgeon for OHS once he realized I was informed started asking me if I knew about some different procedures and what my thoughts were. I am sure that helped guide him on recommendation and knowing what my acceptance was for various treatments.
 

Protimenow

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Prescriptions for warfarin are definitely required in the United States. What was said earlier was a question about whether patient self-testing was allowed in the U.S. Warfarin is dangerous if not well managed - it's correctly tightly controlled.
However, if you convince your doctors (through the use of a solid record of testing and minimal dosage adjustments), they will probably willingly prescribe warfarin for you. If not, you may need another doctor.

As keithl said, it is good to sometimes question doctors and labs (I did this a few weeks ago, and relieved my doctor's worry about ANOTHER patient's incorrect results), and good to do research. It also doesn't hurt to educate (carefully) doctors who are willing to learn from your experience. Some are open to patient input, some see patients as slightly above rabbits in intelligence.

You can pretty quickly figure out how your doctor sees you as a patient.

Self-testing can be a life saver - if you don't get too hung up on the slightest variations and don't try to micromanage dosing. Aside from a slight prick in the finger every week or so, testing can almost seem like fun (to me, at least).
 

carolinemc

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Does that mean it's possible in the U.S. to get warfarin without a prescription? Not possible in CAN. but would save a lot of hassle.
Not possible to go to a pharmacy in the USA and just get warafarin without a prescription . You must have a prescription to get coumadin/warafarin in the USA.
 

carolinemc

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I'm pretty new to warfarin and my INR has been all over the place at times. I am so thankful that the heart hospital in my city has a coagulation clinic staffed by RNs who are trained in this area.
Mine does also, since it is a charity hospital, and a teaching school rolled up into one for me. I do INR in the same place as people who gets treatments and blood work done for cancer. It is with the Block, as in H R Block foundation. Mrs. Block died of cancer years ago and Mr. Block created a cancer treatment and research foundation. And with my hospital, they work together for the patients. They treat me very well on my INR.
 

Protimenow

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Hey, LondonAndy -- this is useful for me.

Of course, those who can't self test or self manage will get services from others.

In the United States, it seems that money for 'professional' testing and management - or for 'services' that do little but report a person's INR to a doctor -- seems to be the norm. It seems to be more about making money than assuring that people get the 'gold standard' of care for INR management.
 

LondonAndy

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Ironically I wrote that comment whilst I am in Las Vegas on holiday. I have brought my Coaguchek XS with me in my hand luggage and continuing to do weekly testing, or will test more frequently if the change of diet affects my INR, but so far I have been stable.

As others have said: we need to be strong advocates for our own health care. It is our lives at risk. I would urge any American to push their doctor to be allowed to self test at least. Bugger their self-interest!
 

mina

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In the United States, it seems that money for 'professional' testing and management - or for 'services' that do little but report a person's INR to a doctor -- seems to be the norm. It seems to be more about making money than assuring that people get the 'gold standard' of care for INR management.
I complain of this to my spouse all.the.time. It's such a waste for a health plan to pay someone to call the coag clinic to report a person's INR when the person can just do it him or herself. I bought a meter and buy the supplies on my own (even though that's a higher out-of-pocket expense for me than allowing insurance to cover the costs) because I refuse to accept this ridiculous system. And I'm also a privacy nut so giving my personal information to some 'service' is unacceptable. I asked my coag clinic and I'm the only one who calls in my results on my own - everyone else who home tests uses a 'service.'
 

Keithl

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Fully agree. I think the issue is finding a DR that will let you do that. I may wind up having to find a smaller cardiologist as many of them in Atlanta are associated with larger hospital medical chains that force them to only deal with a service. My cardiologist would not write me a prescription for an INR machine as it was not allowed by the larger hospital/medical practice she was part of. I am sure this has to do with kick backs as well since they would only call the prescription into their service that partner with even though I could find other services. US Healthcare is a mess.
 

Superman

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It’s this kind of thing that has me waiting for just one politician with the nerve to say, “It’s the cost, stupid!”

All this yammering about single payer vs private’s insurance, etc, but nobody with the nerve to challenge the exponentially rising cost of healthcare in the US.

It’s added layers like this with no tangible benefit. Or everyone NEEDING and MRI machine then realizing they don’t pay for themselves unless they book tests and have billable hours. Doesn’t matter how we shuffle the deck chairs if the boats still sinking.

I could go on. Who put this soapbox here?
 

Protimenow

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Hey, Superman - this soapbox wouldn't be here if there weren't people who really feel the need to use it.

A few general points:

You can buy INR meters without a prescription on eBay. I've seen a lot of CoaguChek XS and a handful of the older (classic?) Coag-Sense meters. Unfortunately, there are ignorant or greedy vendors trying to sell things like the InRatio, CoaguChek S, and old CoaguChek meters -- all of which are either discontinued (with no supplies available) and, in the case of InRatio - dangerous.

You can also get test strips on eBay without a prescription. You can probably do your testing without enriching the testing services or 'anticoagulation clinics.' Perhaps the biggest challenge is a) correctly managing your INR (not that big a challenge - there are many resources here, and once you've hit the sweet spot for your dosing, it should only take minor changes to make adjustments) and b) getting prescriptions for warfarin. If your cardio won't prescribe it, perhaps a PCP WILL. If you demonstrate that you can accurately run a self-test, and effectively self-manage (by showing a spreadsheet with date, dose, results) you should be able to convince a doctor to prescribe warfarin. It's also a good idea to get a lab test monthly (or, perhaps, every other month) to confirm that the lab's results are close to the meter (re-read this last part -- it's now saying that the meter is probably more accurate than the lab).

Getting on the same soapbox as others -- it would be good, if at all possible, to get the insurance and health care provider's lobbies out of the wallets of Congress (putting money into their pockets, NOT taking it out), and stopping the services from the gifts to doctors, and enabling a health care system that benefits the people, rather than the companies supporting Congress and medical professionals.

(Enough soap in this post to clean your hands before you test your INR).
 
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