Minor milestone today, 3 months

[Keithl]

Well 3 months ago today I had my AVR and aortic aneurysm replaced. Other than damn pacing wires annoying me a lot lately, I feel amazing, no issues, chest is great. I can lift, push, pull and do whatever I was doing before. Kudos to Dr. Unai and Cleveland Clinic. I had my 3 month CT yesterday and just waiting on final all clear. I am extremely fortunate as my recovery was rather uneventful. Missed 2 days of work and really other than occasional hearing of the clicking or the annoying pacing wires I don’t feel like I have been through it, rather surreal.

Many thanks to the folks here, glad I found this forum just before my surgery.

 

[Seaton]

Well 3 months ago today I had my AVR and aortic aneurysm replaced. Other than damn pacing wires annoying me a lot lately, I feel amazing, no issues, chest is great. I can lift, push, pull and do whatever I was doing before. Kudos to Dr. Unai and Cleveland Clinic. I had my 3 month CT yesterday and just waiting on final all clear. I am extremely fortunate as my recovery was rather uneventful. Missed 2 days of work and really other than occasional hearing of the clicking or the annoying pacing wires I don’t feel like I have been through it, rather surreal.

Many thanks to the folks here, glad I found this forum just before my surgery.

Great to hear, @Keithl Hope the pacing wire issues settle soon.

I’m 12 days short of getting mine done after a cancellation of my surgery last Monday, an hour before I was due to be taken down. I’m rebooked for early August.

Good to hear you’re feeling so well at 3 months. Long may it stay that way.

 

[Protimenow]

Keithl - this is great news. Has your INR stabilized? It seems like this is a good time to start self-testing (and maybe self managing) your INR or, at worst, getting an overpriced service that sends you a meter and calls your results in to a doctor. (I've posted a lot about my meter of choice, so I won't mention it here).

Weekly testing is the best way to maintain a handle on your INR and to reduce the risk of any adverse, coagulation-related issues.

 

[Keithl]

I have been self testing for about 5 weeks. The INR is a manageable range now, still some fluctuations as I try and find the right dose. I was running around 3.0 at 6.25mg so dropped dose to 5.5mg for about 10 days and wound up at 2.2, but that was 4th July weekend and my diet was garbage, likely some extra vitamin K. I went back to 6.25mg and seem to be around 2.5-2.6. I am trying to target 2.6 +/- .2. I have been testing twice a week until I get nice and stable also because my diet is heavy salads during week and none usually Friday - Sunday.

I really like the CoagSense PT2 and only pull out the service CoagCheck XS on rare occasion to do a comparison.

 

[Protimenow]

One thing to consider about INR management is to count the total weekly dose -- but to split it into the same daily dose, if possible. This way, whenever you test your INR, the result will be in response to your daily dose, rather than the dose you took a few days earlier.

To clarify - I used to take 5 mg on Tuesday, Thursday and Saturday (days with a T in their name), and 7.5 mg the other days. This was before I got my first meter. Using that alternate day regimen, depending on which day I tested, the results would have fluctuated -- if it was two (maybe 3) days after I took the 7.5 mg dose, my INR would be higher than it was two (maybe 3) days after a 5 mg dose. Having the same dose each day would avoid the apparent (but not real) swing in INR.

I'd be interested in learning about the comparison between the two meters. In my earlier testing, the CoaguChek XS was always (or almost always?) higher than the Coag-Sense.

 

[Keithl]

I take same dose every day. The clinic was driving me nut with alternating doses and since they only look at things in a week increment. I essentially manage myself now and email nurse with does updates. The service does not cost me anything for now as I hit my ax out of pocket this year. I am hoping when I go back in a few months with my spreadsheet and chart they will let me dump service and do it myself or let my primary doc manage it as she is cool and will let me manage myself and just call in what I need for scripts.

 

[Protimenow]

What can they do if you just stop using the service? If you've got a doctor who can prescribe the warfarin, and are able to self-manage, can they stop you from doing so? Or will they prevent you from getting test strips?

 

[Keithl]

What can they do if you just stop using the service? If you've got a doctor who can prescribe the warfarin, and are able to self-manage, can they stop you from doing so? Or will they prevent you from getting test strips?

I have not confirmed my primary will support me in writing the scripts, I believe she will, but the cardio will likely give me a hard time if I stop the service and may refuse to write the scripts without me either on the service or going to clinic for blood test.

 

[Protimenow]

If you've demonstrated to your primary that you've been successfully managing your INR (by showing a spreadsheet), and possibly documented the bad advice that the clinic gave you, your argument to trust you with management of this aspect of your own life, your primary should show little resistance. If he or she continues to resist, it may be time to find another primary (or to consider possible kickbacks from the services that keep doctors insisting on using services that do little more than send you strips and refer the results of your self tests to a doctor or nurse who follows a protocol to advise you of dosing changes).

 

[Enigmalady777]

I take same dose every day. The clinic was driving me nut with alternating doses and since they only look at things in a week increment. I essentially manage myself now and email nurse with does updates. The service does not cost me anything for now as I hit my ax out of pocket this year. I am hoping when I go back in a few months with my spreadsheet and chart they will let me dump service and do it myself or let my primary doc manage it as she is cool and will let me manage myself and just call in what I need for scripts.

This sounds very familiar. The clinic was making me nuts recently too because after having an ICD implant done last month, my INR target range changed to 2.5 to 3.0 instead of 3.0 to 3.5.I take 10 mg of warfarin daily now. They had me taking 12.5, 10, 5, all over the place recently after the ICD.

After one recent test, (they are doing them weekly right now) the result came back too low (under 2.5) and they gave me instructions to SKIP a dose which made no sense, so I took 10 mg and next test it was in range. The surgeon who did my implant told me it takes 48 hours for warfarin to kick in.

I wish they would let me self monitor and report, but I have Kaiser and they won't do it. Sometimes we still need to take matters into our own hands at least to the degree we can.

 

[Protimenow]

Can you trust your life to a clinic that tells you to SKIP a dose when your INR is TOO LOW? Can you trust a clinic that, under 'normal' circumstances is okay with seeing you monthly (or even less frequently)?

As long as you're able to self-test (I recommend the Coag-Sense - it's what I use), and intelligently manage your INR, you should be much more comfortable taking control of it than trusting Kaiser to handle it. When you keep the required appointments for testing at Kaiser, they'll feel very proud of themselves for managing your INR so well, and keeping your INR in range.

The effects of warfarin that you take today should be fully evident in three days. It's a drug that has a long half life, and doesn't show effects for a few days.


Also -- you can purchase a monitor without a prescription on eBay. Strips are also available on eBay. You can also go to professional medical equipment sites, but may need a prescription before they allow you to buy meter or strips.

 

[Keithl]

This sounds very familiar. The clinic was making me nuts recently too because after having an ICD implant done last month, my INR target range changed to 2.5 to 3.0 instead of 3.0 to 3.5.I take 10 mg of warfarin daily now. They had me taking 12.5, 10, 5, all over the place recently after the ICD.

After one recent test, (they are doing them weekly right now) the result came back too low (under 2.5) and they gave me instructions to SKIP a dose which made no sense, so I took 10 mg and next test it was in range. The surgeon who did my implant told me it takes 48 hours for warfarin to kick in.

I wish they would let me self monitor and report, but I have Kaiser and they won't do it. Sometimes we still need to take matters into our own hands at least to the degree we can.

As Protime said purchase one off ebay or at least find a DR that will write a script for a machine and get the CoagSense PT2. Wilburn Medical is where I got my CoagSense and their service is great. I love the meter and I hope my DR will let me dump the service soon.

 

[Dodger Fan]

I figured out how to deal with my INR clinic after they gave me some wacky instructions. Also my Coagucheck XS is 0.3 to 0.4 higher than blood draws. I report INRs at what I believe they are through an app. If my machine results are 2.5, I report 2.2.

I had tried explaining that the machine is lower than blood draws and asked them to document that in their notes. They tell me to get it calibrated. I don't think that's possible or necessary. They asked me to report the numbers from the machine and they would adjust accordingly. I made the mistake of trusting them and got a 2.0 on my machine during a weekly test. This is really 1.6 or 1.7. They didn't adjust my dose. I didn't like that after having a TIA 3 years ago. So now I just report the numbers I believe to be accurate (based on records).

The INR clinic is free. They handle prescriptions for me. The strips and machine rental are about $11 a month after insurance. Which is cheaper than ebay.

 

[Protimenow]

When I was testing meters, I found that the CoaguChek XS was usually (if not always) higher than the labs -- if the labs knew what they were doing. Your finding that the XS is typically .3 - .4 higher than the labs suggests that the blood isn't being mishandled by your lab.

Any result below 2.4 on your meter would be troubling -- indicating that the actual INR may be closer to 2.0 or lower.

The Coag-Sense that I use (I'm now using the latest model, the PT2, but the original is also good) typically reports slightly lower than the labs -- again, if the lab knows what it's doing. To me, if the meter reports 2.0, I'm comfortable that the INR is at least 2.2 or so -- keeping me out of TIA territory.

Neither meter - CoaguChek XS or Coag-Sense can be calibrated. They're not designed for this. Instead, the manufacturers of the meters have taken great effort to make their meters extremely reliable. They go to significant lengths to make sure that the reagent values on their strips will result in an accurate INR (although Roche had problems with some strips last year).

Unlike lab devices or hospital testers that, perhaps, CAN be calibrated, Roche and Coagusense are relying on a chip that contains information about the reagent value (CoaguChek XS), or bar coded information on every strip, indicating reagent values (Coag-Sense).

Roche and Coagusense have a lot more to lose than hospitals, clinics or labs. The manufacturers can lose the reputation for their products, lose the trust of the people who use the meters and, in the case of Hemosense (which I blame for my TIA in 2012), losing FDA approval and discontinuation.

I'm not sure that I agree with your strategy of reporting what you think is a correct value for your test to the clinic -- they may continue to round it down to account for the difference in values that your meter typically reports, and may advise dosage changes that shouldn't be made.

It sounds like you're doing the actual anticoagulation management. If you can get 4 strips and the meter for for $11 a month, you ARE saving some money.

 

[tom in MO]

I figured out how to deal with my INR clinic after they gave me some wacky instructions. Also my Coagucheck XS is 0.3 to 0.4 higher than blood draws. I report INRs at what I believe they are through an app. If my machine results are 2.5, I report 2.2.

I had tried explaining that the machine is lower than blood draws and asked them to document that in their notes. They tell me to get it calibrated. I don't think that's possible or necessary. They asked me to report the numbers from the machine and they would adjust accordingly. I made the mistake of trusting them and got a 2.0 on my machine during a weekly test. This is really 1.6 or 1.7. They didn't adjust my dose. I didn't like that after having a TIA 3 years ago. So now I just report the numbers I believe to be accurate (based on records).

The INR clinic is free. They handle prescriptions for me. The strips and machine rental are about $11 a month after insurance. Which is cheaper than ebay.

You believe your machine is 0.3 to 0.4 points high. Be aware of your assumptions:

• Blood draw reading is more accurate than meter. This assumes the lab is handling your blood properly and doing the test correctly. Some labs use a meter For example, your INR value from the blood draw could be off due to some systematic mishandling of the sample. When meter's performance are tested professionally, they use multiple reference laboratories.
• Your meter error is linear, i.e. the same at any reading. You might want to make sure this is the case, but to do so you'd have to go out of range, which is probably not a good thing.
• The error in the reading is in the meter and test strips and not your body chemistry. If the error is because of some unknown and unusual biochemical thing with your body, this can change over time. People's body chemistry changes all the time. The human body is always changing, always finding a new equilibrium until something else changes, your body adjusts, etc.

 

[Protimenow]

Tom - I'm not sure that I agree with your statement that the lab reading is more accurate than the meter. I've reported on recent tests that show this - even values for blood taken a short time apart, but taken at different places, gave different results.

We should take into account, too, that INR testing doesn't give an exact value - 20% variance between meter and lab is acceptable. In my experience, when labs 'get it right' their results are often slightly lower than the CoaguChek XS, and often slightly higher than the Coag-Sense. All of these are within 20% of the lab's findings.

The meter error in the XS is NOT linear - it's been reported that the error increases the higher the INR becomes. A .3 error in an INR of 2.5 may turn into a .5 (or higher) error for an INR above 4. (High INRs should be rechecked).

Body chemistry DOES affect the results of a CoaguChek XS -- certain disorders will render the meter's result inaccurate.

The Coag-Sense uses a different method of determining INR - it actually records the time that it takes for a clot to form, then divides the time by a value for the reagent.

I suspect that DodgerFan's INR as measured on the CoaguChek XS probably IS higher than the lab results. Although it's higher than the lab, it's still within the 20% range of error. I'd only worry if it gives me an INR below 2.2 or so.

I spoke to my primary (his lab gave me a 3.88) and told him that I thought the lab was wrong, because the results on my meters nearly matched each other, and the tests that I've taken every week for a month or two. (My results on my meters ranged from 2.7 to 3.0 over a period of more than one month, and were 2.7 and 3.0 a few days after my blood was drawn, when I got the lab results).

I asked, and he offered, to have the phlebotomist draw two tubes of blood the next time I was in his office, and to send it to two different labs. This approach may show how much agreement there is in the results of the two labs (on THAT day, at least). I'll also, of course, do a test on one or both of my Coag-Sense meters, and we can compare all results. (If I had a supply of CoaguChek XS strips, I'd also run a test on my XS -- but I don't have the strips and can't afford any at this time).

For me, trusting the labs is getting more and more difficult.

 

[Keithl]

Tom - I'm not sure that I agree with your statement that the lab reading is more accurate than the meter. I've reported on recent tests that show this - even values for blood taken a short time apart, but taken at different places, gave different results.

We should take into account, too, that INR testing doesn't give an exact value - 20% variance between meter and lab is acceptable. In my experience, when labs 'get it right' their results are often slightly lower than the CoaguChek XS, and often slightly higher than the Coag-Sense. All of these are within 20% of the lab's findings.

The meter error in the XS is NOT linear - it's been reported that the error increases the higher the INR becomes. A .3 error in an INR of 2.5 may turn into a .5 (or higher) error for an INR above 4. (High INRs should be rechecked).

Body chemistry DOES affect the results of a CoaguChek XS -- certain disorders will render the meter's result inaccurate.

The Coag-Sense uses a different method of determining INR - it actually records the time that it takes for a clot to form, then divides the time by a value for the reagent.

I suspect that DodgerFan's INR as measured on the CoaguChek XS probably IS higher than the lab results. Although it's higher than the lab, it's still within the 20% range of error. I'd only worry if it gives me an INR below 2.2 or so.

I spoke to my primary (his lab gave me a 3.88) and told him that I thought the lab was wrong, because the results on my meters nearly matched each other, and the tests that I've taken every week for a month or two. (My results on my meters ranged from 2.7 to 3.0 over a period of more than one month, and were 2.7 and 3.0 a few days after my blood was drawn, when I got the lab results).

I asked, and he offered, to have the phlebotomist draw two tubes of blood the next time I was in his office, and to send it to two different labs. This approach may show how much agreement there is in the results of the two labs (on THAT day, at least). I'll also, of course, do a test on one or both of my Coag-Sense meters, and we can compare all results. (If I had a supply of CoaguChek XS strips, I'd also run a test on my XS -- but I don't have the strips and can't afford any at this time).

For me, trusting the labs is getting more and more difficult.

I would be curious as to how this goes, please let us know.

 

[pellicle]

One thing to consider about INR management is to count the total weekly dose -- but to split it into the same daily dose, if possible.

this is so old school and I'm totally against it, it brings nothing but confusion and contradicts itself.
For instance: consider weekly dose => 49mg per week so if you were to think of this then you would logically just take 49mg on mondays and be done.
Oh no, is the answer you mustn't do that it has to be balanced
oh, so take 21mg on Monday and 28mg on Thursday?
oh no, it needs to be consistent

so why the hell not just work out that 49mg is 7mg daily and take the daily dose just as *every other medication* is described in?

what's hard about that? Why even bother with weekly dose. If you mis a dose then just take it when you figure it out and don't worry. The whole weekly dose thing was probably invented by some old matron who had no idea about pharmacokinetics

 

[Protimenow]

Pellicle: The weekly dose calculation is total weekly dose - and I've advised many times on these forums (fora?) to take the same dose daily -- if weekly dose is 49, it's 7 mg/day.

Total weekly dose isn't old school - as long as the doses are as close to the same daily as possible.

I've wondered about the concept that you pointed out - 49 mg on Sunday, nothing for the rest of the week -- this is ludicrous (but not beyond what some clinics may recommend).

As far as my thoughts about taking two vials of blood and sending them to two different labs -- one day, I'll do that. Others can probably request this, too.

On Tuesday, I plan to contact the lab that calculated an INR of 3.88 (when meters said 2.7 or 3.0) and see how they can explain the variance. I wouldn't be surprised if they have me come in to their offices and have a blood draw -and possibly bring my meter so that they know that I'm not fudging with any test results.

 

[pellicle]

Pellicle: The weekly dose calculation is total weekly dose - and I've advised many times on these forums (fora?) to take the same dose daily -- if weekly dose is 49, it's 7 mg/day.

in which case why would you even talk about weekly dose, or monthly dose or yearly dose.

or is it just a USA thing

Total weekly dose isn't old school - as long as the doses are as close to the same daily as possible.

so again, of what use is it? May as well talk about monthly dose as long as the doses are as close as possible.