Scared So I Will Vent to You Guys

[aerfirmie]

My 7 year old has a mechanical valve. She's had it about 6 weeks. Anyway, I tried checking her INR 3 times today and the machine said "Lo. QC" as the error. I took her to the lab for a blood draw. We won't know the results until tomorrow.

I am panicking about this INR management. I don't want her to have clots and a stroke!!! I worry that maybe she isn't "bloody" enough because I have to squeeze her finger after the prick. Or is it because I use 1 as the prick setting that I am not getting enough blood. I don't want something bad to happen because of my mis-management. She said she has been playing catch the past couple of days too. She is out of control. I need her to be more inactive so her coumadin will be stable. WAAAAAAAAAAAAAHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!! And why is she playing catch anyway? Has she forgotten what she just went through???

 

[Bill B]

ACTIVITY HAS NOTHING TO DO WITH COUMADIN STABILITY. NOTHING! Let her do what she likes. It's a complete fallacy that exercise does anything to affect warfarin metabolism. There are almost NO drugs whose metabolism is affected by exercise. Warfarin, and many other drugs, are metbaolized by a liver enzyme system called cytochrome P450. It does not change activity because your skeletal muscles are working a little harder.

http://www.mendeley.com/research/ex...ochrome-p450-content-microsomal-metabolism-1/

 

[catwoman]

What make of monitor do you have? What type of lancing device do you have? Do you have any capillary tubes?
You need to find a clinic that uses a POC monitor (CoaguChek or INRatio) so you can get some lessons on how to test her. Perhaps you need to use a different type of lancing device.
Can't believe a child would be out playing baseball just 6 weeks after OHS!

 

[Madsometimes]

Children are great. It's fantastic that she is running around so soon after surgery.

The meters that measure INR do take a bit of getting used to. My advice is to submerge her hand in very warm water for five mins (not so she burns). This should make her hand pink up, then prick her on a middle setting. You may need to squeeze a little too.

 

[Greg a]

Children are great. It's fantastic that she is running around so soon after surgery.

The meters that measure INR do take a bit of getting used to. My advice is to submerge her hand in very warm water for five mins (not so she burns). This should make her hand pink up, then prick her on a middle setting. You may need to squeeze a little too.

GREAT advice and I would add to draw from the side of the finger not the tip I test for diabetes up to six times a day and change fingers every time each time running some warm water over the area tricking t he body to send more blood there also if trouble persists wrap the arm in a warm sleve of flannel ........I am sure a few of the long term moms will weigh in soon to add some advice

 

[AgilityDog]

Yes, the #1 setting on the lancing device is too low. start with a 3, and yes, you will have to squeeze a bit.
The Lo-CQ is a machine error - there is a book that goes with it, or you can call Hemosense and they'll tell you what it means. I think it means your blood sample is too small. I use a 21 gauge lancet, myself, on #5 setting. Other people use 26 gauge,which is smaller, or even 30 gauge.
Let the kid play! they heal fast! she shouldn't play american football or rugby or other contact sports, but catch and running and swinging are just fine.
Take a deep breath. You can do this, and your daughter will do just fine.

 

[Protimenow]

I'm not sure why you should be getting QC errors on your meter --if there's not enough blood, meters will usually tell you. You may actually have an issue with the meter or strips.

As far as taking the sample -- it may actually be a bit more difficult to get an adequate sized drop of blood from a small 7 year old's finger than it is from an adult. Personally, I use a 21 gauge lancet, and my lancing device is set to the maximum depth. Plus, I make sure that I'm pushing the lancing device firmly into the finger. Other than this, I may not be getting an adequate size drop.

Heating the hand in warm water is not a bad idea - I put my hand under warm running water for a couple minutes. There's a 'fun' thing that can help draw the blood into your daughter's fingers, too - have her swing her arms up and down - as if her hands are wet.

You do NOT want to squeeze the blood from her finger after you lance it -- this can give the wrong results because you're mixing interstititial fluids with the components being tested. It's better to gently squeeze the finger, below the knuckle, to let the blood pool in the fingertip before you lance it.

Which meter are you using? The CoaguChek XS may be a bit easier to get the blood onto the strips because you can touch the side of the strip. The ProTime (which you probably DON'T have) takes a LOT more blood than the InRatio and CoaguChekXS.

Also -- FWIW - I'm not sure that activity has no impact on IR. In my experience, the dehydration related to excessive perspiration (probably not a problem for a seven year old) has impacted MY INR on certain occasions. Although the issue may not be directly related to liver enzymes, there are other factors (perhaps even a change in the intestinal bacteria that break down warfarin before it gets to the liver) that could be at play here. It's great that your daughter is active - she probably feels stronger than she has for most of her few years, so she SHOULD take advantage of the energy. But, of course, she has to be a bit more careful than her playmates.

You'll figure out the INR stuff --- once you do, managing your daughter's INR shouldn't be as stressful.

 

[newmitral]

I definitely recommend you read the user manual that came with the meter.

You did not say which brand of meter it was, but if it is an Inratio2 machine - from the Alere Inratio2 User Manual:

A “LO” or “HI” QC message appears when the test strips have expired, or have not been stored
properly, and have deteriorated. If you get a “LO” or “HI” QC message, check to make sure your
test strips have not expired, that the correct strip code was entered into the monitor, and
confirm that the strips have been stored properly. Repeat the test if you believe the strips are
okay. If you continue to get a “LO” or “HI” QC message, make note of the information on the
monitor display and call Technical Support for assistance.

So, the error is NOT related to a blood sample that is too small - that would give a different error.

From the error you report, assuming it is an Inratio2 machine, either the test strips are bad, the wrong test strip code was entered, or the machine is faulty.

I'm also a bit surprised that you are home-testing INR at only 6 weeks post-op. My understanding was that most doctors would not prescribe (and most insurance would not cover) the home testing until after at least 3 months of INR history from lab tests had been obtained. Presumably that would be for your doctor to make sure the patient INR was stable before you went the home test route. In fact, from the Alere website, on the physician's prescription form:
"I certify that this patient has been on warfarin therapy for >90 days and will undergo a training program utilizing the Alere Face-2-Face® training protocols to ensure that he/she is capable of self-testing;"
If you have not yet had the home training from the meter manufacturer's representative, you should do so. The home training will answer or confirm most all of the issues/recommendations raised above, and should greatly alleviate your anxiety about the warfarin/INR management.

 

[Scott]

I have the CoaguChek. If you accidently touched the side button you could have changed the date and your unit will show the strips to be expired. Check the date--year.

 

[sarahsunshine]

DON'T PANIC!!! She's obviously feeling good and healing well!

We've been monitoring Skyler's Coumadin levels for 13 years. You will do fine. From experience, the worst thing you can do is prevent your child from doing exercise.

I have a couple things to add to the conversation i terms of pointers:

1) metabolism DOES affect INR levels. Skyler's activity levels have increased drastically since having his valves replaced, and his coumadin levels have gone up (by 2mg/day). However, it's not a HUGE variation like with vitamin K, so as long as her activity level is relatively consistent, then don't worry about it. What I mean by this is that if she suddenly goes out and plays 5 soccer games in a tournament in one day, there may be a slight effect on INR. However, going to play one soccer game, or even two, will not make it fluctuate that much. If she consistently plays 5 soccer games each day, then there will likely be a change in her INR and therefore coumadin levels. Just like vitamin K, dose the activity level, not adjust the activity to fity the dose.

2) a level 1 on the "sticker" isn't enough at all. We use 3.5-4.5 for Skyler and still have to "milk" it. The location of the prick is also important. If you are pricking on the pad of the finger there will be a lot less blood because the skin is much thicker. You should be pricking on the side of the finger - halfway between the nail and the pad, and not on the finger tip either (does tha make sense?) It really helps us to prick, then start at the middle of the hand, and "milk" down the finger to get a good drop for our machine (Coaguchek XS). Consider getting capillary tubes and a tiny little squeegy to transfer the blood. It's much easier than maneuvering a child's finger.

3) Activity level for a 7yo post heart surgery is usually FINE. Hannah (hannahsmom ID here) was back swimming and doing gymnastics at 6 weeks. Skyler went swimming 7 weeks post surgery and swam better than he ever had in his life, with better breath control and circulation (yes, treading water and front crawl which is way more stress than playing catch). I would try not to limit her activity, just ensure she isn't over-doing it and that she is getting enough rest to heal. If she is really exhausted, then let her sleep in and miss the morning at school. I quizzed the physio person at the hospital about physio and exercise levels for Skyler and she was adamant that for kids, unless they are extremely strong willed, that letting them go to their limits is the best rehab. Kids naturally test boundaries and will stop if there is too much pain. Limits on how much she can lift make sense, but unlike adults, kids heal REALLY fast. In february (8wks post surgery), Skyler cardiologist gave him the go ahead to lift what he felt capable of, setting his own limits. So at 7 weeks, I woudn't worry too much.

4) We've found that a general vitamin supplement with vitamin K in it has actually helped maintain a consistent INR level. You can read various articles (thegymguy put a bunch together in a post) about taht and it really works. We have very little fluctuation in INR for Skyler unless something wacky is going on like he takes the wrong dose for a week at his mom's house!

5) we get that message on the Coaguchek monitor when you dno't put the chip in place, or you have the wrong chip for the strips. Double check that the chip (it comes in the bottle with the strips) is in the machine correctly, and try again.

6) Skyler's INR levels were very low for 3 months post surgery (in the 1.3-1.8 range) without any bridging. Although at higher risk, children are the most resilient at dealing with blood clots. Short term decreases should not be much of an issue (a couple days to a week). Has her INR stabilized post surgery? Have you maintained that dose?

Lastly, what has hindered Skyler the most has been being "babied", and forced to slow down. It hasn't helped his self confidence, his gumption, or his attitude. So, unless the cardiologist specifically said that she shouldn't do particular activities right now, then let her try things. She will stop if it becomes painful.

When's her next appointment? Please keep us updated on her progress. Have you noticed any improvement since her surgery?

If you have any questions feel free to PM me!

 

[hannahsmom]

I know that I am a little late in adding to this post, but I agree with all of the above.

Once your child is cleared to resume all previous activity - She should go for it! Hannah's Dr encourages her to live a normal full life. Only restrictions are activities with a high risk of injury (which for a young girl is not much of an issue)

As far as activity affecting the INR, Hannah has grown a lot in the past year (she is approaching 13 now) and starting cheerleading this summer which increased her activity level by about 8 hours/week. This was the first time since her 3 mon post op that we had to adjust her meds. She normally was at 2.6-2.8, then slowly went down to stready 2.2.
She went up .5 mg per day and is back on target. Her growth and activity increase supposedly played a roll in the drop in her INR.

Side note - Hannah prefers monthly lab visits over home testing. She has been very vocal about this since day one and her dr is fine with it, so I don't argue. After all she's been through, I feel this should be her choice. Finger poking is one thing she complained about in the hospital. We are lucky enough to be in Ohio and she goes to Cleveland Clinic for her cardiologist. We happen to have a Cleveland Clinic lab 2 mins from home, so we go on our way to the grocery store and she's done in 5 minutes. She fills out her card, goes back alone and chats it up with her favorite techs. If you have a lab close, it may be less stressful to try out that option.

Best wishes to you and your daughter

Kelly

 

[Protimenow]

I see that I responded to this a few months ago -- but here I go again. You should NOT squeeze the blood from her finger - unless she uses a ProTime meter. The InRatio and CoaguChek want the first drop of blood -- if you squeeze the finger, the factors that are in that first drop may be diluted, and give you a bad result.

If the fingerstick is done right, it shouldn't be a big deal -- what MIGHT be painful is trying to 'milk' the finger to get more blood. One thing that a kid may like to do - after running warm water on her hand, have her swing her arms around enough that they dry by themselves -- this will not only get the finger dry, it'll also draw blood to the finger. (Also -- she may be old enough that she can incise her own finger - it may not hurt as much is SHE is doing it).

Finally - I don't believe that monthly testing is adequate -- I test weekly or, at most, 10 days. I try not to let too much time go between tests. (If I had tested a bit more frequently a few months ago, I might have prevented a stroke).

One more thing -- I'm not sure that I really trust my meters. I'm currently using two meters, just to compare the results. Just now, my InRatio gave me a 3.8, and my ProTime gave me 2.8. Knowing that my InRatio is usually about .5-.8 higher than the labs, I'm comfortable assuming that my lab INR will be around 3.3 - right in range.

If you use a meter (and I strongly urge everyone who uses warfarin or cares for someone who does), learn the meter and USE it. AND DON'T TRUST IT TO MATCH LAB VALUES UNTIL YOU MAKE SOME COMPARISONS WITH BLOOD DRAWS.

 

[hannahsmom]

Protimenow - I understand your opinion on frequent testing. However, as a new patient or parent to one, you need to know you have options. Educate yourself on those options and make the choice that best suits you and the condition/situation you are dealing with.

We have gone over the pro's and con's with her cardiologist and anticoagulant specialist. They feel this type of monitoring is adequate for her as her hannah's INR has been so stable. When it was bouncing all around in the beginning we were at the lab much more frequently. I think that this would be something that should be determined per patient. Only a very drastic change in routine would cause frequent spikes or drops in INR. If you are taking the proper dose at the same time every day, living a consistant routine and monitoring diet, activity changes, etc. such frequent testing may not be necessary.

 

[Protimenow]

If only that assumption was true. If I had a young daughter - even if I believed that her activity and diet were consistent - I'd still be concerned that this isn't really the case.

If things WERE so absolutely consistent, why bother testing montly? Why not test every six months? After all, her diet and activities are consistent. Aren't they?

Back in the days when the only way to test was with a lab blood draw - requiring the patient (or a parent) to drive to a lab, hassle about parking, etc. etc. etc., the monthly testing was seen as an appropriate option, because getting to the lab was such a hassle.

With a home monitor, these problems disappear. Sure, you can do monthly lab testing -- but how do you know if there are any spikes or drops BETWEEN TESTS? Plus, for the five or six dollars it may cost to test each week, isn't peace of mind knowing that your daughter's INR is INDEED consistent worth it?

If you read some of the meter manufacturers' sites, they recommend weekly testing. Of course, it can be assumed that this is so that they sell more strips -- but there are also reasons for more frequent testing. (I've been on Warfarin for 21 years, I'm pretty well educated on the options, and I believe that for anyone -- especially a person who is probably going through puberty, whose activities and diet may not be quite as consistent as you believe them to be, and who is very precious to you - weekly home testing is an expense that is well worth it - even if your doctors and anticoagulation clinic are still stuck in the 1990s).

You said that you have a meter -- why not give it another try?

 

[dick0236]

We have gone over the pro's and con's with her cardiologist and anticoagulant specialist. They feel this type of monitoring is adequate for her as her hannah's INR has been so stable. When it was bouncing all around in the beginning we were at the lab much more frequently. I think that this would be something that should be determined per patient. Only a very drastic change in routine would cause frequent spikes or drops in INR. If you are taking the proper dose at the same time every day, living a consistant routine and monitoring diet, activity changes, etc. such frequent testing may not be necessary.

I agree with your approach to INR monitoring. I have weekly tested at home and monthly tested at docs office. I am also very stable between 2.5-3.5 and as long as I continue being stable, I will continue testing monthly at my doc's office(finger stick using his meter and strips)......besides, I get a "free" 10 minute appointment each month to discuss any current issues(heart or other). A young person, who understands her condition, need not be continuously reminded of it.

 

[hannahsmom]

Protimenow - With all due respect I am simply stating that there are professionals that feel this monitoring is adequate and effective for some patients. How frequent you should test should be based on the stability of your INR, whether you test in a lab or at home.

"(I've been on Warfarin for 21 years, I'm pretty well educated on the options, and I believe that for anyone -- especially a person who is probably going through puberty, whose activities and diet may not be quite as consistent as you believe them to be, and who is very precious to you - weekly home testing is an expense that is well worth it - even if your doctors and anticoagulation clinic are still stuck in the 1990s)."

To indicate that our approach may be neglectful or not thorough is insulting. I highly doubt that my daughter's cardiologist who is part of one the greatest hospital systems in the world, would allow this treatment plan if it were outdated and insufficient. She has cared for Hannah as she were her own child. My husband and I have gone to great lengths to ensure she has the best care possible. We also educated Hannah, her school, her friends, their parents, our family and any others on what will affect her INR level, therefore she is being closely monitored. I take her care very seriously!

I am not stating one way is better than the other, as you are, I am only trying to explain to another mother that there are other options to explore. She, like the rest of us, will need to trust the professionals she has chosen on how to treat her child. Based on your username, I can tell you feel very strongly with this type of monitoring, but that does not mean it is best for everyone. Just as Dick has stated above. He has been a patient for over 30 years and has found that monthly monitoring is sufficient for him as well. Every case is different.

 

[Protimenow]

If you re-read Dick's message, you'll see that his approach agrees with mine -- weekly finger sticks, and monthly blood draws. I have no problem with this schedule. However, I still advocate for weekly testing -- it's easy to assume that tests taken once monthly that are almost the same each month can indicate that there are no fluctuations BETWEEN the tests -- but you won't know if you don't test more often.

I don't mean to be insulting or to disparage the experts who are probably acting on decades old protocols, but I still strongly suggest that you do as Dick said he does -- weekly finger stick testing at home and a monthly test in the lab. (It's what I've been doing, too, with the exception that I also do a meter test immediately before going to the lab so I can compare the accuracy of the meter to that of the lab). Is being able to detect a possible fluctuation BETWEEN monthly tests THAT unreasonable?

 

[dick0236]

If you re-read Dick's message, you'll see that his approach agrees with mine -- weekly finger sticks, and monthly blood draws.

Protimenow, you misunderstood my post. I had home tested weekly because it was required by the INR program with Raytel or bi-weekly with Alere. I discontinued both of those programs due to difficulties between Raytel, Alere and my Medicare provider. For 43 of the 45 years I have been on warfarin, I have tested monthly. The first 30 years was a monthly venus draw. The last 15 years, except for 2 years home testing, have been monthly finger sticks at my doc's office......with an occassional venus draw if the meter shows a screwy number. Personally, I prefer monthly testing for myself and only test more often if I have INR numbers 2 or under and above 4......and those extreme numbers occur only very infrequently.

 

[Protimenow]

Dick:

If your 'screwy' number would have shown up a week after your last test, how would you know? (You would know because you'll probably have a stroke a week or two later). When I had a cardiologist, he wanted tests every two weeks.

Personally, I am MOST COMFORTABLE testing weekly -- even if my score is the same week after week, I feel more confident that I'm in range than I would if I had to hope that my INR was stable between monthly tests. For five bucks or so, each week, to me it seems like pretty cheap insurance.

(Some of you have suspected that I'm the clown who went for many months without testing because I couldn't afford a lab test -- it's certainly possible to go for a LONG time between tests by maintaining your dosage and activities -- but with the new metering technologies available - and affordable, this is a risk that I don't really want to repeat).

 

[dick0236]

Dick:

If your 'screwy' number would have shown up a week after your last test, how would you know? (You would know because you'll probably have a stroke a week or two later). When I had a cardiologist, he wanted tests every two weeks.

Protimenow:
The "screwy" number was 8 and as my doc and I suspected, it was due to a malfunctioning meter....and they ordered a new meter, probably at less than half the cost of what is charged to retail customer like us.

You and I have sparred about test timing before. I am comfortable with monthly testing as I do not feel that my INR changes dramatically overnight, and my INR history bears that out. From some of your posts, you seem to test one meter against another meter....and then check that against a lab draw......seems like overkill to me, but if it makes you more comfortable, you should continue your personal protocol. Like you, I have also had a stroke......37 years ago that was probably, but not for sure, due to my irresponsible action in NOT taking any dose for almost a week......but times where different then and dosing information, testing methods, etc. where still in the "dark ages". Since then, I have been VERY careful to keep warfarin in my system and have had NO further problems. I do not consider ACT to be rocket science........it'll probably blow your mind to also know that I keep only 5mg tablets on hand and make my infrequent adjustments using some combination of no, 1/2, or full doses of 5mg warfarin.

Lets agree, again, to disagree since we have each done it our way for many years. However, I think we do other new comers to warfarin a disservice when we over complicate ACT. My only advice is ..."take the pill as prescribed, test routinely(weekly, bi-weekly, monthly)....and use common sense".