New member, old ticker!

[Davidr]

Hi everyone,

After having a st judos aortic valve replacement in October 2000, i have just recently found this site!

I recently moved to Hong Kong from South Africa (where I had my original surgery), and have been appalled at the medical care that is considered normal here. Having been on warfarin for the past 10 years, I never took very close attention to my target INR, i simply went to the pathologist every month, and was called back with the news that my INR is stable, keep to the same dose. It was like this for about 8 of the past 10 years!

Then I arrived in Hong Kong.

I started seeing a cardiologist at the specialist hospital (a government hospital), and they scheduled me for a visit every 3 months. That meant that there was no blood tests in-between, just every 3 months. I had to insist (after nearly a year) to have an echo to see valve functioning, in fact, the clinical care seems to be a very "if it ain't broke, don't fix it" approach!

The card did, however, adjust my warfarin dosage - slightly lowered.

Then at my last appointment, my INT was 1.1, and i was urgently admitted to the hospital for Warfarin Titration (with a Heparin booster)

The doctor in charge had never heard of any self-testing, telling me it was only for diabetics, and it was only when I spoke to a senior doctor that He agreed that it might be a good idea for me.

I have since purchased the CoaguChek XS (no prescriptions needed in Hong Kong, just go and buy!)

Now, i am getting to the place where I am very wary of what the doctors are telling me, and i am wondering why they have advised me to to target 2.0-3.0 for my INR levels, "because caucasions should have a slightly higher INR target", but based on what i see here, and other research online, 2.5-3.5 is a more common target INR for all mechanical valve replacements.

What are your experiences, and suggestions?

 

[dick0236]

Hi David and welcome. There is not a lot of difference between 2-3 and 2.5-3.5 and many think anything between 2-4 is OK. Personally, I like to stay well above 2, and I am most comfortable 3+. Many years ago, I also was on a 3 month schedule in the USA......but that was when the test was a vein draw. Since the "finger stick" became available, I have tested on a bi-weekly or monthly schedule.

 

[Bina]

Hello and welcome. You are very fortunate to have a new Coaguchek XS monitor since the hospitals in your area are not what you are used to. My doctor and I am happy with an INR between 2.5 and 3.5 which is surprisingly easy to maintain. When the doc lowered your dosage another follow up test a week later would have saved you from dropping too low.

 

[Davidr]

Hi,

Yes, looking back, that's my opinion too.

To give you an illustration...

I am on a high dosage of warfarin (11mg/day) to titrate me back to an acceptable level. Blood tests were every 3-4 days until I was in my 2-3 level. Last week Friday, my test came back at 2.4, and the doctor,without changing my dosage, said "Your levels are in range, come back in 2 weeks for your card appointment...we'll do another blood test then"

For nearly 10 years, by stable dose was 7.8mg per day...

Surely this is very poor management?

This is why I got the CoaguChek. I can no longer trust the doctors to manage my INR...next I'll have to explain self testing to my cardio!

Has anyone else experienced that the CoaguChek XS reports INR slightly above a vein draw? Usually about 0.2 above (parallel test, within 30 mins of each other.)

 

[Bina]

Hi,

Yes, looking back, that's my opinion too.

To give you an illustration...

I am on a high dosage of warfarin (11mg/day) to titrate me back to an acceptable level. Blood tests were every 3-4 days until I was in my 2-3 level. Last week Friday, my test came back at 2.4, and the doctor,without changing my dosage, said "Your levels are in range, come back in 2 weeks for your card appointment...we'll do another blood test then"

For nearly 10 years, by stable dose was 7.8mg per day...

Surely this is very poor management?

This is why I got the CoaguChek. I can no longer trust the doctors to manage my INR...next I'll have to explain self testing to my cardio!

Has anyone else experienced that the CoaguChek XS reports INR slightly above a vein draw? Usually about 0.2 above (parallel test, within 30 mins of each other.)

The monitor has an acceptable variance of .2 when compared to a vein draw, and mine has given me the exact same reading a couple of times. Even at the hospital, doing two back to back tests can easily show a diff of .2 (or more, or less).
This is why we have a range of 2.5---3.5 to allow for slight variations in testing and accomodate our lifestyles.

 

[ALCapshaw2]

The recommended ranges have been posted many times before but it is probably easier to just type them out than to search for them.

Aortic Valve with NO other risk factors INR 2.0 to 3.0
AV with additional risk factors (stroke, TIA, etc.) 2.5 to 3.5

Mitral Valve with NOT other risk factors INR 2.5 to 3.5
Mitral Valve with additional risk factors (stroke, TIA, etc.) 3.0 to 3.5 or 3.0 to 4.0 depending on Doctor's preference.

'AL Capshaw'

 

[Davidr]

Hi Al,

Thanks for this...

Has anyone heard of a difference in recommended INR based on ethnic background? I was intrigued by the doctor mentioning that my target would be higher because I was Caucasian. I assume he meant higher than Asian population...

Thanks again,

David

 

[Greg a]

I just want to add my welcome to the board

 

[lance]

David,
Hello and welcome.
Valve position is the only variation I've encountered for different target levels of INR. I don't think it matters much if your XS is slightly over or under the vein draw. Frankly, I trust my XS. There is an acceptable level of .8 difference between vein and finger draws.
Are you self-training on your XS?

 

[Davidr]

Hi Lance,

When I bought my XS, the sales rep trained me in using it, as a recovering geek (moved from the IT field into education and church ministry), I was obliged to read the entire printed contents!!!

I killed my 2nd and 3rd tests with too little blood, and that was also my first parallel test (give veinous blood upstairs,, then go to star bucks, order a drink, do the test, drink the drink!!!), but third time I got enough blood.

Tested again yesterday, XS reported 2.5 (2.6 last Friday), will parallel test again on Friday.

So, in a way, I am mostly self learning the XS. I am leaning towards trusting my XS over the lab anyway, considering how poorly the rest of this managed care is run!

I think I no longer trust the doctors...after all, if they make a mistake, it is not them in risk of bleeding or clotting!

Thanks everyone for the welcome!

 

[AgilityDog]

I've never heard of a difference in INR recommendations based upon race!
If I were you, I'd trust my coagucheck over the doctors, based upon your experience.
I'd also test at least every 2 weeks for a while, if not weekly. Your diet may have changed since moving, which could change what your maintenance dose should be. Other factors, like activity, may have changed, too.
For instance, After my MVR but before my AVR, my maintenance dose ran from 23 mg/week to 28 mg/week. For 4 years.

Since my AVR in August, my circulation has improved so much that my maintenance dose is now 37 mg/week! Wow!

If your range is 2.0 to 3.0, then your current dosage sounds fine. If you are looking for a range of 2.5 to 3.5, you may find you need to increase dosage a bit. You may find yourself dropping below range from time to time.

But generally, don't test more than weekly. If you are staying below range and trying to move up, testing every 3 days is ok (it took me 5 weeks after AVR to get back in range. We were increasing my dosage slowly, and testing every 3-4 days) but it's not advised for long term. Too much testing means too much tweaking, and therefore a roller coaster on your INR.

 

[Davidr]

Hi Laurie,

Hmm, just do the math - 11mg/day is 77mg/week!! I know that that is high!

In South Africa, my stable dose was 7.5mg daily, 10mg, twice per week = 57.5mg/ week, stayed that way here for 6 months! Then all hell broke loose (in other words, I started relying on government doctors)

I know it takes time to reach ideal levels, and I know that it takes time to stabilize! I just expected that since I was given a high dose, to get my levels up, when I hit the target range, my dosage might be slowly reduced! Not so, I fully expect my levels to continue to climb!

That's one reason for more frequent testing (just for a few weeks), i want to see that my levels are stable...I'll go to weekly soon, and bi-weekly in a few months.

So, how do I convince my cardiologist that self management's better for me and her? I want to logically manage my health, which implies that I should properly manage my dosage too?

David

 

[lance]

Hi David
From time to time I have problems obtaining a large enough sample of blood too. My Softclix is set to its highest level--5 and I use the yellow-coloured lancets. I think they're 21 g.

 

[Davidr]

Hi Lance,

Hehe, glad to know I'm not alone!!!

Also use the yellow ones with the stabby-thing on max!

David

 

[catwoman]

Hi Al,

Thanks for this...

Has anyone heard of a difference in recommended INR based on ethnic background? I was intrigued by the doctor mentioning that my target would be higher because I was Caucasian. I assume he meant higher than Asian population...

Thanks again,

David

Read:

http://www.mayoclinicproceedings.com/content/84/12/1079.full

 

[Protimenow]

Marsha--thanks for the link to the interesting article. It shed light on why caucasians may actually be less sensitive to warfarin than Asians and others. However, an important point is that few of us really know our sensitivity to Warfarin until we are actually using it. In general, it looks as if those Hong Kong doctors are right -- caucasians DO seem to require a slightly higher dose.

Davidr - it sounds as if you've come across your experience with a tester in a way somewhat similar to my experience (studying the manual). One suggestion for the incision -- be sure that the lancing device is firmly pressed against your finger - and be sure to use the fleshy area of the fingertip (not the actual tip of the finger or the sides of the finger). I found that I occasionally just let the lancing device barely touch my finger - and didn't get an adequate drop of blood because the incision wasn't deep enough.

A 21 gauge lancet should get Plenty of blood. For some people, it helps to 'milk' the blood from the base of the finger up to the tip, so that there's plenty there when you make the incision. You shouldn't have problems getting enough blood - and I'm pretty sure that once you've made the incision a few times, you'll be comfortable with the incision procedure. (I'd rather get too much blood than waste an extra strip or two). (In another thread, one person said that he swung his arm around to dry his finger - and also to get the blood flowing in to his fingertips. This may be a bit drastic - but would probably work)

For myself, I alternate between CoaguChek S and ProTime 3. If the values change much from one week (tested with one machine) to the next (tested with the other), I may double check with the ProTime 3, which I have slightly more confidence in.

The ProTime takes a LOT more blood -- three or four BIG drops. Once you've mastered getting those drops out of a stubborn fingertip, the CoaguChek should be a piece of cake (and with a 21 gauge, enough pressure, and maximum depth setting, you should be able to consistently get a big enough drop).

--

Finally, I keep a spreadsheet (soon to be a database application) of the time and date of my testing, my current weekly dosage, my INR and reported Prothrombin time, the meter I used for testing (because I have more than one meter), and any unusual recent events that may have had an effect on INR (changes in diet, OTC medications, activity, etc.). I use the spreadsheet for two basic purposes - to track my INR from test to test, and to show the doctor prescribing my refills that I'm able to manage my own anticoagulation.

 

[Cris N]

Hi David - I wonder where your warfarin is actually coming from. I recall some discussion about warfarin from members in China not having the same, somewhat consistent standards as what we usually get here. In the process of your move did you switch the origin of your warfarin?

 

[lance]

Hi David
Have you tried holding your hand down at arm's length before pricking? And try to not touch the strip with any blood until you're sure there is enough present to run the test. I bring my pricked bleeding finger up from below the strip touching the blood to either side. I think there's a nifty little pump that soon sucks enough up. Just for interests sake remove the used strip, turn it over and you will see the blood filled channel with the little circle at the top.

 

[Protimenow]

Actually, Roche recommends touching the incised finger to either side of the strip - you may want to squeeze the finger a little or draw some blood up from lower down on the finger. It's not a pump per se, but capillary action that draws the blood into the strip. Also - the meter is designed to use the FIRST drop of blood (this may be obvious to many people, but certainly not to everyone, because I've seen some on this forum say that they don't use that first drop).

I don't have an XS (yet), and my ProTime meter uses a LOT of blood (three or four large drops), and wants that first drop discarded. The ProTime apparently wants you to discard the first drop because that first drop has a higher concentration of platelets (and probably fibrinogens), and these factors make clotting somewhat faster than later drops. The Roche and Hemosense meters factor these clotting factors in to the overall INR values. The ProTime dismisses the factors in the first drop and may, in theory, use blood that is a closer approximation to the blood in a venous draw.

Also -- if you're using Chinese Warfarin, it's probably not a bad idea to do regular testing until you know how your body reacts to it. (I've used Indian warfarin and it seemed equivalent to U.S. generic. There are a few on the forum who seem to prefer the warfarin from Israel. Whichever you use, testing will help you regulate your dosage so your INRs are within range).

 

[nngbwh]

Protimenow,

How can you tell the differences between Indian, Chinese or Israel warfarin ? I am confused.