Home monitoring ... I'm sure I'm doing it right, but ...

[dick0236]

Sometimes I think we are making this INR stuff a helluva lot more difficult than it really is.....and in the process, are unduly scaring a lot of new people who are weighing valve choices, and people new to warfarin.

I've been on warfarin a long, long time and have never obsessed over INR. For the first 25 years I had vein draws every month. During that time I had one problem....a stroke that was almost certainly due to my own mismanagement....went without Coumadin for 4-5 days(a very bad idea). For the next 20 years, I had monthly finger sticks at an INR clinic with no problems. One year ago, I began routine self-testing. I am currently testing weekly(three weeks with my meter and one week with my docs office meter). I do think that infrequently checking my meter against my docs meter is a smart idea to validate my meter. Proper warfarin management is critical but, normally, is not difficult.

 

[Bina]

Hi All,
Thanks to all who responded. I reckon I feel pretty ok about what I'm doing - testing at about the same time each Sunday, staying within range (2.0 - 3.0), eating a consistent amount of greens each day, keeping a log of results, etc. I'm by no means an expert, but feel home monitoring, and warfarin in general, is not the monster I had concocted it to be. Touch wood, I have settled into a good groove and the stability I am experiencing will continue.

A big thanks to Bina - you response was encouraging and heart felt.


Phil.

Good for you ! Do whatever you feel comfortable with and don't let anyone get you freaked out for nothing.

 

[Protimenow]

I've been taking warfarin for more than 20 years. It's not a drug that freaks me out - but, after a hard lesson, it's one that I respect enough to monitor carefully -- and as accurately as possible.

Being on warfarin shouldn't mess up your life style, but it MUST be respected.

Phil -- I don't recall which valve you have, but the range that you reported is a bit frightening to me. The reason is that, even with the best of meters, all they guarantee is 30% range of accuracy. In my testing with multiple meters, I've found that the CoaguChek XS has always given me results that were higher than those from the lab. Always. I've worked at making sure that my INR is in the 2.5-3.5 range and, depending on my meter, I've been confident that my INR has stayed in that range.

HOWEVER, if I was relying on a CoaguChek XS to keep my INR AT 2.0, there's a possibility (even according to the manufacturer's accuracy claims) that the actual INR would be BELOW 2.0 -- and that it may possibly be as low as 1.6 or 1.7 (and maybe lower). I've had this discussion with a doctor who tried to tell me that the 'new' range for most valves should be 2.0-3.0.

When I had my TIA in April 2012, the hospital lab reported an INR of 1.7 on the day I was admitted, and 1.8 the next day. I doubt that my INR was any lower than that in the days leading up to my TIA -- and the meter that I put so much faith into was reporting an INR above 2.0. In fact, the day of the stroke, it gave me a 2.6. Please consider rethinking the bottom of your range -- especially because a 2.0 on ANY meter may actually be lower, and may put you at risk of stroke. It shouldn't be any more difficult to maintain your INR in the 2.5 - 3.5 range than it is in the 2.0 - 3.0 range, but taking into account the possibility of your meter reporting a HIGHER than accurate value, I think that it would be safer to shoot a bit higher, just in case your meter's results are a bit high.

----

Dick -- I'm glad to see that you're testing weekly. If your doctor is using the same type of meter that you use, I wouldn't be at all surprised if the results of a test at the doctor's office are pretty darned close to the ones that you get at home. You might consider asking the doctor about an occasional blood draw to compare to a lab, or ask if the doctor has made this comparison between his meter and a lab.

OTOH - if you keep your INR around the middle of your range, any bias in the meters that you and the doctor use probably shouldn't matter much.

 

[Phil]

Thanks and will do. My surgeon wants me to be between 2.00 to 3.00, so being fairly consistently mid-range is a good thing.

All the best.


Phil.

 

[pellicle]

Hi

staying within range (2.0 - 3.0),

an easy range to manage ... and you seem to be doing a good job!

I'm by no means an expert, but feel home monitoring, and warfarin in general, is not the monster I had concocted it to be.

it isn't really a monster is it. Its something I try to sell to those who move to a tissue valve instead of a mechanical valve solely on the reason they think warfarin is a monster.

as you say ... its not as all that bad.

 

[pellicle]

Hi

So, I really can't say that I'm just looking at testing variability, the day-to-day variability is there also (confounded - as the statisticians would say).

well the results look like the meter and the labs are coming up with the same result ... which is something I wished to assure myself of when I started

best wishes

 

[Protimenow]

Nope. Not all that bad.

I wonder if many medical professionals discourage the mechanical valves in their patients (even when these are a better choice) because the doctors just don't understand anticoagulation. To me, a lifetime of warfarin (a really inexpensive drug), regular (in my case, weekly) testing, and intelligent management are a lot easier and, over a lifetime, a lot less expensive or stressful on a body than another surgery or two to replace/repair a failing tissue valve.

 

[Bina]

Thanks and will do. My surgeon wants me to be between 2.00 to 3.00, so being fairly consistently mid-range is a good thing.

All the best.


Phil.

Phil, let me repeat that you are doing great. Don't let the ramblings and errors of one particular member rain on your parade

 

[Protimenow]

Phil:

For some unknown reason, there's bad blood between one person and me. I assure you that my only concern is the well being of all people who take warfarin -- even HER. I also assure you that if you review the literature, that my concern about staying ABOVE 2.0 is justified, and that my belief that the only way to keep a person from the risk of having an INR below 2.0 for a week or more (a definite risk factor for stroke) is to test weekly, to be certain that the INR IS in range.

These are NOT 'ramblings and errors' despite what she thinks.

And 'rain on your parade' is a cliche that I wouldn't ever use.

 

[pellicle]

Sometimes I think we are making this INR stuff a helluva lot more difficult than it really is.....and in the process, are unduly scaring a lot of new people who are weighing valve choices, and people new to warfarin.

on this point - a couple of months ago I was at a cafe chatting with the mate who's a pathologist and he brought up that he was doing a presentation on Warfarin Management to the younger doctors at his hospital. We went through it and at the end I said to him "so you're trying to convey the impression that this is a deadly drug which kills you or worse?"

He was a bit shocked and asked what I meant.

I pointed out that he'd covered pretty much all the text book cases of horror stories without even talking about those patients other co-morbidities and despite them being less than 0.1% of the people on warfarin spoke little about the 99.9% of healthy people who have not problems.

He scratched his head and said that he hadn't thought of it that way, and had just thought it was prudent to give these intern doctors a full picture in a succinct way. So we chatted more about this and he changed his presentation.

Certainly he does not think warfarin management is a big issue. My point here is that I see that the medical profession may inadvertently give its own memebers the "heebie-jeebies" about this stuff from early in their careers. This can set the stage for a life long (mistaken) 'impression' in those interns that this is truly dangerous stuff.

We discussed that too ....

For the VAST majority of us its not a problem. We shouldn't make it out worse than it is, but need to keep the experts aware of what the potentials are and give them guidelines as to who is likely or not to be in the group who may have problems.

Its important to note, that the problems that do occur mainly occur in the first days or weeks of warfarin. Once we have been on it for a while then all is much more simple to manage.

So here's hoping that I've not made this sound worse than it is like my mate did ;-)

 

[Ola Thoresen]

I agree that home monitoring is pretty straight forward, and also that doctors probably don't know too much about it.
When I suggested it I got quite a few confused looks, and most of the nurses had not even heard about it. So it took some work to get it organised. But when I first got through to the right people, they were really excited, because they had so few patients that could do it.

We must remember that most of the people with these conditions are quite old, and that for them, the assurance that they take the dose prescribed by the physician, is probably important. Also, quite a few of them would probably not manage to do it themselves.

But for us who are more than capable, I think they should suggest and encourage home monitoring in a more active way.

 

[Protimenow]

Ole and Pellicle -- you've raised some great points.

As far as home monitoring are concerned, it's only recently that home testing meters became available and somewhat 'affordable', and only the past four or so years when these meters began appearing on eBay for those who couldn't buy the meters 'new.'

If doctors change their presentations, like the one who Pellicle spoke to, the nightmare stories about warfarin management might be reduced a bit -- and warfarin may not be presented to patients as a 'lifetime sentence' that should be avoided at all costs - even if the cost of avoidance is a repeat surgery in 10-20 years.

I'll stop rambling here.

 

[dick0236]

we must remember that most of the people with these conditions are quite old, and that for them, the assurance that they take the dose prescribed by the physician, is probably important. Also, quite a few of them would probably not manage to do it themselves.

But for us who are more than capable, i think they should suggest and encourage home monitoring in a more active way.

great post!!!

 

[Freddie]

Hi All,
I have been home monitoring for about 6 weeks. Since this time my INR has been 2.4, 2.5, 2.8 and 2.5 and I have been taking 5 mgs of warfarin each day. Before this time I was lab testing and really struggled to get my levels to stay within range. (I think the lab was under prescribing warfarin as the doses generally ranged between 3.5 and 4). I feel really pleased my levels are now consistently within range and stable, but I have a slight fear that perhaps I'm not doing this right. To put this to the test on two occasions on the day I lab tested, I home monitored tested, and the difference between the two readings was point 1 (eg - 2.6 versus 2.5). I think I just need to relax and not over work this - what do others think?

Phil.

Getting back to the original post/thread...........

Phil your doing just fine and carry on what your doing and do what's right for you.

Just remember, people will have their own opinions on different matters. Some can have the tendency to almost brian wash you to believe in their way because it's the right or safe way to do it, which may be true for them but may not be true for you or other people.
Believe in yourself.

I can't believe this simple post became so dang complicated and in depth.

 

[Protimenow]

These posts often do take on lives of their own.

I believe that Pellicle and I (and others) are only stating what clinical research has revealed. Restating interpretations of clinical studies isn't brain (or brian, for that matter, whoever he is) washing - it's stating clinical fact. Reporting that research shows that a week or more (and in Dick's unfortunate case, just a few days) underanticoagulated can increase risk of stroke isn't brainwashing -- it's fact. Stating that meters have an inherent degree of accuracy that, at the low end, can cause a 2.0 on the meter to actually represent an INR that is substantially below 2.0 isn't brainwashing - it's fact. Stating that the half-life for Warfarin is about 3 days may not be quite fact - because our bodies may metabolize it at different rates.

Yes,. do what you want. However, rather than believing in yourself, you may believe in actual clinical research and the real life experiences of others, too.

 

[dick0236]

These posts often do take on lives of their own.

. Reporting that research shows that a week or more (and in Dick's unfortunate case, just a few days) underanticoagulated can increase risk of stroke .

I'd prefer that you leave me out of this. Mine was not an "unfortunate case"....it was a STUPID case of playing "Russian Roulette" and I lost. The simple fact is.....if I take warfarin as prescribed and test routinely(weekly, bi-weekly or monthly), I probably will have no problems....but no guarantees. But, then, even people not on warfarin have no guarantees against stroke or internal bleeding.....or getting hit by a truck. You just use good sense.

 

[Agian]

Protimenow, how many days was your INR less than 2 when you had the TIA?

 

[Protimenow]

That's my point. According to my METER, it was never below 2.0. I trusted the meter to be accurate, and believed that a 2.0 (or higher) on my meter was actually 2.0. On the day that I had my TIA, my meter told me that my INR was 2.6 -- the next day, the hospital lab told me that it was 1.7.

My point, regarding being comfortable with a 2.0 on a meter, was that a 2.0 on a meter could - even within the accuracy assured by the meter's manufacturer - be dangerously below 2.0. That's why I suggested shooting for a higher number on the meter (to avoid the possibility of actually having an INR that was below 2.0), and for weekly testing (so that the INR doesn't STAY in that danger zone for more than a week).

 

[Agian]

And fair enough. Are you 100% it was a TIA though? You said it was confirmed by CT scan. I read somewhere that as TIAs resolve spontaneously, there's usually nothing to see on the CT. Strokes tend to affect the whole half of your body and not just one leg.

 

[Protimenow]

The doctors at the hospital weren't calling it a TIA -- they were calling it a STROKE. They were treating it like a stroke. They sent a physical therapy rehab person to my bed while I was in the hospital. There was an area in my cerebellum that they said had been damaged. It's possible that they were overreacting, because the deficit in my leg DID resolve fairly rapidly.

I asked them if it was a TIA -- and they called it STROKE. I wasn't in a position to argue with them. They never repeated the CT scan, so I don't know if, radiologically, there has been a change or improvement.

I did find that, afterwards, my sensitivity to certain verbal stuff has intensified -- if I was a careful editor before this event, I'm even worse now. Now, when I listen to the radio or watch TV, the words I hear are converted in my brain to text, and the text is analyzed -- it's amazing how poorly most of us speak, and how illogical a lot of stuff people say really is. But I think that this increased verbal sensitivity may have resulted from the TIA/stroke.

(Well, I guess by definition, a TIA would be TRANSIENT -- meaning that it will resolve over time, that's why it's called a Transient Ischemic Attack. These doctors, based on the head CT were careful not to call this event a TIA -- although I prefer to)