Long term blood draws

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Should I be concerned about the number of blood draw my son currently has in a year and may his lifetime?? Scar tissue being created?
My 13 year old son had OHS and has a St Jude in the Aortic position. 6mg seems to keep it in the 2-3 INR target zone. He has his INR checked through blood draw about once every 4 ish weeks unless we forget a dose/adjust or it’s out of target range/adjust, they check sooner.
We have had the draw/stick side by side 3 times in a row and it did not correlate 2x. We were told when INR is above 2.5, it often shows totally wacky high INR on the finger stick/home monitor. We live really close to the hospital, so not a concern for driving, but has anyone had problems with blood draws long term?
I appreciate your input.
Trinity
 

dick0236

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........ We were told when INR is above 2.5, it often shows totally wacky high INR on the finger stick/home monitor.
That is the silliest statement I have ever heard. High INR becomes less accurate when you get very high values......but much higher than 2.5. Many hospitals and surgeons discharge their patients from the hospital with a personal meter. I have home tested for 15+/- years with my range 2.5-3.5. I, along with my PCP and Cardio, are very comfortable and confident in my INR readings.

To answer your question about long term vein draws.....I had vein draws for the first 25+ years after my surgery with minimal damage to my veins. I had a coumadin lab "finger stick" me for about 15 years after they stopped doing the vein draws in the 1990s.......and I have self-tested since........much more convenient and comfortable......and probably more accurate since I test weekly......not monthly.

PS: Please don't think I'm calling you "silly". My comment is directed towards your hospital lab. Warfarin management is not "rocket science" but many lab techs think it is far too difficult to be handled by mere patients.
 
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dick0239 thank you for your quick reply. The less accurate piece had to do with meaning the stick doesn’t correlate with the vein draw as likely when INR is higher on the vein draw. We had one vein and finger side by side (to prove Ethan’s would correlate and finger was accurate) and the vein showed 2.9 and the finger showed something ridiculous like 7.2 - so they said the finger was not accurate and that happens sometimes with higher Vein draw INR.
I am considering moving to at home test partly for convenience but also to do it more often too.
Thank you so much and I’m glad you were not calling me silly. ;)
Trinity
 

Warrick

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My father has had monthly vein draws (mech AVR) for the last 35 years and continues to do so, wheras I have not had a vein draw since surgery, all finger stick tests with a coaguchek.

To me from 2.9 from a vein draw to 7.2 on a finger stick as a variation that was fobbed off as a machine fault doesnt seem right at all otherwise all users would be affected by this phenomena, I’ve been at INR 7.7 on a finger stick test due to a medicine interaction.
There are several other clotting disorders that indicate warfarin use-
-Antithrombin III deficiency
-Antiphospholipid syndrome (also known as antiphospholipid antibody syndrome, APS, APLSor Hughes syndrome) is an autoimmune condition caused by antiphospholipid antibodies.
- Protein S deficiency.
I know that APS sufferers cannot use a finger stick as they get readings way out of whack like you have seen, I’m not sure on the other disorders being accurate either.

Hes 13 now (incidently a good friends 13 yr old grandson is having AVR soon, it was meant to be 10 days ago but he had an infection) so if you can find out why the finger stick was so far out and he is able to self test for the rest of his life then I think that sort of independance especially in 10 years time when he wants to travel or whatever with his life is magic :)
 
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Warrick, thank you! I think we will have the side by side done again. Or just request the home unit. I would still be checking in with the anticoagulant clinic for consult at least for a bit.
Interesting about your friend’s child being a similar age. Teen boys on Coumadin is never a picnic, but I’m grateful this could be his last valve ever. Adult size annulus.
 

pellicle

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Hi

theres a few points so I'll try to address them one at a time (I hope you don't mind)

Should I be concerned about the number of blood draw my son currently has in a year and may his lifetime?? Scar tissue being created?
not terribly, although it will be more convenient to move over to finger stick measurements. They've been around some decades now and there is much written on them because there is so much at stake.

Myself I have used a finger stick measurement for the last 7 years and correlated from time to time with vein draws (less recently) and found that its normally an insignificant difference (say 0.2 ~ 0.3 INR units).


My 13 year old son had OHS and has a St Jude in the Aortic position. 6mg seems to keep it in the 2-3 INR target zone.
I'm sure that's hard work ... and that range is normal ... the dose is what the dose is and doesn't really matter what it is, only that the right INR is obtained.

He has his INR checked through blood draw about once every 4 ish weeks unless we forget a dose/adjust or it’s out of target range/adjust, they check sooner.
personally I would not be satisfied with that. There is no such thing as an INR that never drifts and so I'd always want to be aware of any drift. I recommend weekly testing and indeed weekly testing is the gold standard.

We have had the draw/stick side by side 3 times in a row and it did not correlate 2x.
I'm not entirely sure I understand this, would you try explaining it again more clearly. It would be good if you could write something like:
we had a draw on [date] and a finger stick [date], the draw was X and the fingerstick was Y

the closer these dates are together the more meaningful it is.


We were told when INR is above 2.5, it often shows totally wacky high INR on the finger stick/home monitor.

thats the usual nonsense I've heard stated at labs by the lovely ex-nurses who do the blood draws. As well meaning as they are they are about as trustworthy as any gossip heard at the hairdresser or barber shop.

We live really close to the hospital, so not a concern for driving, but has anyone had problems with blood draws long term?
I appreciate your input.
myself I moved away from the labs within 6 months of my surgery (2011) , not least because of the amazingly bullshit stuff they spouted and their incompetent handling of my INR. Since I took on the role of dose manager myself its been smooth.

I put this page together back in 2014 to assist fellow valvers with their self administration and to clear up some common misconceptions and misinformation.


I think you should read that and feel free ask me any questions you may have about what you don't understand.

Next, please let me go back to the issue of the claims of errant readings (as this has been studied quite a lot. This study has a nice graph which charts the differences in INR values between Coagucheck and Blood Draw

Evaluation of the Accuracy and Precision of the CoaguChek® XS System
887099


you can see that there is quite a reasonable correlation between the Innovin reagent and the Coaguchek.

There is a **** tone of stuff written on this. I recommend you begin to get familar with this


... We had one vein and finger side by side (to prove Ethan’s would correlate and finger was accurate) and the vein showed 2.9 and the finger showed something ridiculous like 7.2 - so they said the finger was not accurate and that happens sometimes with higher Vein draw INR.
wow that's amazing, does your son have any known blood disease? I've literally never seen that sort of issue.

Basically finger stick testing is in the main so reliable that entire countries (not the USA) are moving towards it because not only is it more cost effective but has outstandingly good patient outcomes.

I can't explain the result you saw, but as others have pointed out it it is so far outside the norm as to raise an eyebrow (maybe even be suspicious that the test was not done properly or perhaps even "arranged").

Nobody will call you silly here, so please if you have further questions, you just keep asking them.

Best Wishes

PS: there aren't many diabetics who would say that they want to go back to the 1970's and have vein blood draws ... nor any labs brave enough to suggest they do. Home testing with a CoaguChek XS (or simmilar) is quite sufficiently accurate
 
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Pellicle, thank you for your message. Super helpful. I don’t recall the exact dates and INR for the days we went in for testing, but the venous draw and finger stick was done at the same appointment. The first time they correlated. Then a month later we did the same thing (venous and finger) and it did not correlate. Same the third time which was another month later.
I appreciate your thoughts about testing more often. I’ll read up more about home testing being accurate, though I do believe what you say.
Thank you all for your feedback. I’m absolutely looking into getting a home monitor. And if they want to continue to test venous once a month, we may comply.
Happy Memorial Day (weekend), all!
Trinity
 

pellicle

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Hi
..I don’t recall the exact dates and INR for the days we went in for testing, but the venous draw and finger stick was done at the same appointment.
Well that's the important part, that they were together.

I find the differences unaccountably large, so as Warrick mentioned since these things are so commonly used, it's a strange outcome.

There are some blood diseases which can interfere with the results a bit but nothing like what you've mentioned. There was also some recent issue with some strips reading higher, but that was only when INR was over 4.

The first time they correlated. Then a month later we did the same thing (venous and finger) and it did not correlate. Same the third time which was another month later.
If I were you I'd start writing my own log of data and INR and dose, either in a spreadsheet you keep backed up or a journal book.

Hope you get to the bottom of it
 
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I do wonder if the test was performed incorrectly, yes. Odd. This was fairly early on - 6-9 months post surgery? Seems worthy of home monitor and watching and keeping track myself as suggested. Thank you for this group! I’m sure you’ll be seeing more of me. :)
Trinity
 
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Keithl

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Hi
myself I moved away from the labs within 6 months of my surgery (2011) , not least because of the amazingly bullshit stuff they spouted and their incompetent handling of my INR. Since I took on the role of dose manager myself its been smooth.
You must have a great cardiologist, I am switching because mine is an ass. My INR is bouncing between 2.1 and 3.5 and they are wanting to put me in bi-weekly testing! I am like what my INR is not therapeutic yet and is bouncing around and you want me to go 2 weeks? At least the Coumadin clinic is allowing me to do twice weekly testing for now until my INR gets a little more stable. I am hoping my new cardiologist will work with me and just let me call in my numbers. It is amazing how they get away with some of the BS. I asked for 5 and 1 mg as it looks like my does will be about 5.5, but they would rather have me on their odd 2.5, 5, 7.5, 5, 7.5, 5, and so on with 2.5 every so often.
 

Protimenow

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I'm a bit late to this thread, but I'll toss in my thoughts.

Some years ago (I used to say 'recently' but realize that it's probably about five years), I had a TIA (some call it a stroke) because I put too much faith in the accuracy of a meter that has since been recalled and discontinued.

As a result, I went on a quest to find the meter that most closely matches blood draws,. In my testing, I found that some clinics badly mishandled the blood drawn - coming up with a CLINIC's result of 7+, while, an hour or so earlier, I tested using a meter and got a more reliable result that was in range. So, even clinics can mess up.

In my testing, I found that the CoaguChek XS sometimes reported a result that was considerably higher than the lab or the Coag-Sense that I was testing. The InRatio, which I was also testing, was similarly a whole point or so higher than the Coag-Sense (and the lab).

After I concluded that I had more confidence in the accuracy of the Coag-Sense meter, but continuing testing for a while with the CoaguChek XS, and having monthly blood draws to compare to my meters, I determined that I felt most comfortable with the Coag-Sense. (No, I don't work for them, nor do I have a financial interest in them).

As long as the meter reports a value within 20% or so of the lab result, the meter result should be considered acceptable. Test results can vary a bit from meter to meter to lab. In March, I got a new Coag-Sense meter, and comparing it to my original Coag-Sense, with blood draws a few minutes apart, there was a difference of .2 - not significant, but, still, considering that my INR wouldn't have changed in a few minutes, and the testing technologies were identical, it's clear that testing isn't perfect.

One more thing -- the Coag-Sense is reportedly not effected by blood issues (I think that high hematocrit is one of the issues) that can cause CoaguChek XS to return an erroneous value. There's a significant difference in the methods used by the two meters to determine prothrombin time. The CoaguChek XS uses an electrical method, monitoring impedance of the blood, and determing that a clot has 'formed' when the electrical signals reach a certain level. The Coag-Sense spins a tiny wheel on the strip. When the wheel stops spinning (because a clot stopped the wheel from turning), the meter detects the clotting time.

For myself, I'm more comfortable with a physical method of detecting a clot.

If your son DOES have issues with his blood that could result in errors in results from one meter, I'd consider an alternative.

I've had my St. Jude Valve for 26 years. Until 2009, I had infrequent blood draws. Since then, I've had blood draws occasionally, and done self-testing roughly weekly. My veins didn't develop scarring or other issues. The finger that I most frequently use for testing doesn't seem much worse for wear.

One other thing that may not be seen in my lifetime is the development of an anticoagulant for people with prosthetic valves that WON'T require regular testing. Your son may see a time when the issue of weekly blood tests are no longer necessary.

I personally see little reason to get a blood draw to test my INR ASIDE from occasionally comparing the result to a meter's result.

(One other possibility for the future would be replacing the leaflets in a valve with a non-surgical approach. They're working on it now. It's still years away, but there may be a future intervention that will further reduce or eliminate the need to take warfarin. Your son will probably see significant advancements in his lifetime)

If you have any questions, I'm checking this forum every few days.
 

pellicle

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You must have a great cardiologist,
well, as it happens I do, but I guess that the situation here in Australia is a little different. There is no insurance company giving me directions or even laying down the "law" on how I need to behave. There are systems where I can join a clinic (IIRC it was $250 entry then the tests were covered by Govt Health for the remainder of time), however equally I'm free to run the show my own way if I choose.

My Cardio is simply not involved nor directs things. Indeed I just get a prescription of Warfarin from my GP and go my own way. This was done in such a manner however as to involve both my GP and (to a lesser extent) my Cardio at my start of self management, but very quickly everyone was pleased with my results.

My INR is bouncing between 2.1 and 3.5 and they are wanting to put me in bi-weekly testing!
reach out if you want to work with me on this.
 

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