inr still messed up

[Karlynn]

Carole - first of all - I hope you know that we aren't criticizing you - we are highly frustrated with what's been going on with you, and none of it makes any sense. I agree with Al Capshaw, you need to start educating yourself and quickly. But don't take that as us thinking you should be knowing stuff now.

If they come in today with anything more than a 1.0 on your INR after not having any since Monday - they're smoking crack. Seriously. And your best bet would be to get the heck away from their management. Is your cardiologist involved? Or is it just their Coumadin management team. You may even want your Cardio to read the posts here. We have hundreds of years of Coumadin experience being reflected in our posts, so I would hope he/she wouldn't dismiss what we are saying. True we aren't medical "professionals", but many of us know our stuff.

Ross - do you have some sort of Bat Phone you can get a hold of Al Lodwick on? I would really like to hear his take on this.

Hang in there. Breathe deeply.

 

[Karlynn]

Here is my neck thing!!!!

Oh my goodness! We are going to have a big party for you when you get out of the hospital.

 

[CA Pigg]

I'm reading all I can and actually husband sent a request to Al Lodwick and he sent an email himself back to husband...... I do plan on getting the home tester as soon as they get me straightened out. I've been walking in fact they were saying I was the poster child for walking, even with my neck thingy bouncing LOL!! They did make me slow it down some when they said the INR was up near and over 7 points.... I've been eating take out as my appetite is increasing the hospital food really gags me, except for breakfast it is not too bad.. Just got my meds yeah, I was ready for the pain relief for sure!!! Thanks again!

 

[Bina]

Carole, you poor thing.......they've left the main line in......!!!!!
Mine was out by day 3 and I just had the IV line in my arm.

 

[Karlynn]

So what did Al have to say - and when did you get it? Inquiring minds want to know!

 

[CA Pigg]

The nurse just took more blood and said if you are anywhere near 4 they will cut you loose, I asked is that INR you are talking about and she said yes........ I know very weird, I just want out and manage this thing with the clinic in Montgomery and then on my own of course with the help with all of you!!!!!!!!

 

[Blanche]

Something is just not right

Something is just not right

Carole:
Over the past nine years I have spent more time in hospitals with my husband than I would like to remember. And, time after time there were problems with doctors, nurses, staff and the like.

I have fired doctors, nurses, and even one cleaning lady. I even "fired" the hospital by moving my husband to another hospital, by ambulance...And, I did that TWICE.

I am telling you these things because you need to know that you have POWER. And now is the time for you to use your POWER. Something is definately wrong with the results of your INR tests.

I would suggest that you advise your doctors that you want an immediate consultation with a hemotologist and you want it fast. I would speak with my nurse, the charge nurse on each shift, any doctors treating you, and a hospital administrator. Ask to talk to a patient advocate, but, as it was stated elsewhere, they work for the hospital. And, I would raise such a fuss that I could not be ignored.

You also need some outside support. Is there someone, spouse, friend, sister who can be with you 24/7? I would also take notes on everyone who enters your room, every instruction you are given, etc. If you have a chalk board in your room, write your lawyer's name and phone number on it...that does get attention.

I know this seems harsh, but remember.....you are not the problem, you have a problem and they are not solving that problem YET.

I just know that this will work out in a positive mannar for you very shortly.

Blanche

 

[BDMc]

Oh Carole! You are incredible! I'm sorry but the pic did make me laugh. The idea that you thought of taking and posting the pic so quickly blows my mind. I wouldn't know how to do it! Gotta say you look darn good for what you have just been through! Listen to Karlynn. I love her, because she always seems to say what I'd like to before I can. Seriously, get on the phone to your cardio, and try to find out what's going on. I don't have much confidence in the hospital staff.

 

[BDMc]

Blanche has given you the best advice. Please follow it.

 

[CA Pigg]

deleted message

 

[geebee]

I wonder if some swift thinking lab person is reading PT instead of INR.?????

 

[Lisa in Katy]

Carole, this is crazy! Why do they still have the port in? Mine was removed when I left ICU. It had nothing to do with getting my ACT on track!

wondering if the plasma that they are giving you contains heparin, which isn't unusual, and if you are having a reaction to that? Although heparin doesn't have the same effect on the INR as Coumadin, it does have an effect, and maybe you are sensititve to it?

I'm also wondering if their machine is malfunctioning or they aren't giving the doses that they think they're giving.

I found what seems to be a pretty accurate article about ACT at this link.
http://www.aafp.org/afp/990201ap/635.html

Don't expect to understand it because it is written for doctors, but I wanted to post it for you as well as others on this board. I haven't read the whole thing, and some of it is over my head, but the below quoted sentence confirms what we all know, and that is that giving a different dose of Coumadin every single day followed by a double shot of plasma will never get anyone in range!

"Because warfarin has a long half-life, increases in the INR may not be noted for 24 to 36 hours after administration of the first dose, and maximum anticoagulant effect may not be achieved for 72 to 96 hours."

In fact, if you look at the flowchart for high INR, unless you are bleeding or require rapid reversal, it doesn't recommend plasma or even Vitamin K for an INR less than 10.

I also liked this part:

"The AHCPR noted that physicians are reluctant to prescribe warfarin, in part because they are not familiar with techniques for administering the drug safely and fear that the drug will cause bleeding. Patients treated with warfarin do require close monitoring to avoid bleeding, but it has been shown that the drug prevents 20 strokes for every bleeding episode that it causes."

Ross, are you sure you didn't write this article? Actually, there is a paragraph about generic Warfarin that isn't consistent with what Ross states, so I guess it was just some other pretty smart person that wrote it!

 

[Lisa in Katy]

I wonder if some swift thinking lab person is reading PT instead of INR.?????

PT is higher than that generally. Around 12 is considered normal, 20 to 25 on Warfarin.

 

[geebee]

PT is higher than that generally. Around 12 is considered normal, 20 to 25 on Warfarin.

Yeah - I guess a PT of 7.7 would be a bit hard to register.

 

[Lynlw]

PT is higher than that generally. Around 12 is considered normal, 20 to 25 on Warfarin.

also I haven't seen the newest machines, but the ones I used had the name of the test and the result printed on the slip side by side.

 

[CA Pigg]

waiting on new results but ross had me ask and I was able to and she said last night INR was 4.6 and PT was 45 seconds............ I'm just very sensitive....... They are hoping to cut me loose and I'll deal with the clinic in Montgomery.........

 

[Lisa in Katy]

last night INR was 4.6 and PT was 45 seconds.

This part makes sense.

Back in the days before INR was reported, I remember having a PT of 69, which roughly equates to an INR of 8-9.

This too shall pass and you will become an expert like the rest of us who deal with this daily!

 

[Eva]

......I can only blame the hospital for not knowing how to dose Coumadin.

Should not it be the surgeon or cardiologist managing the dosage? It was only my surgeon who was recommending the dosage while in hospital.

 

[Nancy]

First off, I agree with Blanche. You need to have a consult with a hematologist.

Secondly, are they flushing your neck port out with Heparin to keep it viable? Although that wouldn't cause your INR to spike like that, because different tests are used for Heparin. But it could cause other abnormalities in your clotting times. Some people are very sensitive to Heparin and cannot take it in any form, even for flushing out ports.

I think you must ask to see and get copies of all your recent bloodwork and see what kinds of abnormalities there are.

Blood test results aren't that hard to read, most of them show the normal range, and how much your own tests differ from the norm.

I find it very strange that you are still showing a very high INR after not having been on it for so long. And I am also wondering what all that plasma is all about.

There are many things that do not make any sense at all. I think you need to ask them to tell you EVERYTHING that is going on, and this has to come from your doctor or PA.

You are going to have to be extremely proactive, or your husband is going to have to be.

If they send you home with all this turmoil going on in your body, it's going to be very hard for you. Do not allow them to release you until you feel sure that you are on an even keel. You can object to a too early release.

But you absolutely have to find out what they are not telling you.

Ask them if there is any possibility that you have Heparin Induced Thrombocytopenia (also known as HIT).

 

[ALCapshaw2]

waiting on new results but ross had me ask and I was able to and she said last night INR was 4.6 and PT was 45 seconds............ I'm just very sensitive....... They are hoping to cut me loose and I'll deal with the clinic in Montgomery.........

Carole,

I recommend that you get a letter from Dr. McGiffin addressed to your Coumadin Clinic in Montgomery where he describes your High Sensitivity to Coumadin.

Hopefully this will cause them to react appropriately and NOT try to use 'Standard Dosing Procedures for New Patients' as their guide. This is for your protection because some Nurses / AC Clinics like to believe that THEY know what is BEST for YOU and that Patients don't know or understand anything. I've dealt with some of those kinds of Nurses. I changed Clinics!

My current AC Clinic uses only Certified Registered Nurse Practicioneers (CRNP's) who have been well trained and seem to "know their stuff" along with respecting patients who understand their condition and how their bodies react to dose changes. Hopefully your Montgomery Clinic will have similar experienced Nurses.

'AL Capshaw'