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Heartfelt--it's not the drug that's hideous--it's the lack of knowledge and available education that's the problem. The more I find out about the drug itself, the more I appreciate it, but I do wish there were something that could be done to educate medical personnel to a common standard--a standard that's not ten years out of date.
 
Hey, I've stopped telling the "monkeys throwing darts" at my clinic the truth. I've taken to lying about my INR levels b/c I always get yelled at or am blamed for my levels not being exactly where they should be. When I tell them I am w/in range there are no recriminating phone calls and I either try to figure out how to get w/in range (I'm still practicing and am still on the learning curve with this Ross) or come here and ask for help. So far no one has yelled at me nor made me feel badly here when I've asked for help. I just tested and my INR was 1.8 (I'm like you Cooker and would rather see it a bit high than too low). Do you think I could take 81mg of aspirin now to help adjust things since I don't take my coumadin until bedtime? I don't even know how the INR sunk so low; my range is 2.5-3.5. I sure don't want to end up in a hospital!!!!!

Overheard someone saying they couldn't eat this, that, or the other thing b/c of coumadin and I told them what I've learned here and suggested they dial in this forum and find out the truth about warfarin/coumadin dosing. I would probably be dead if I hadn't found you guys! I was at my wit's end when I found this place. I can't say I'm cheerful about being on this hideous drug, but you all have shown me it's manageable and that, thanks to you and no thanks to my cardio, I can still have quality of life, and someone even mentioned to remember the obvious, that it's keeping me alive.
heartfelt

1.8 today huh? What is your total weekly dose to get to that 1.8? Sounds like you could use a 10% or more tweak upward. Asprin works differently on blood platelets then Coumadin does, so there is no equalizing things with asprin.

What was the clinics ideas with what to do now?
 
Hi Ross,
My INR was 4.2 10 days ago and I forgot to test it again, figuring that since it was high, but not too high then I'd just skip 2 doses and it would all level out. I know I'm going to have to do better with this, but it's just so much brain death for me. I totally flunk percentages unless I see a drawing of a pie. I just filled my pill box and put in 7.5mg today, 5 tomorrow, 7.5 wednesday, 5 thurs., 7.5 friday and 5 each sat. and sun. Does that sound right? Your suggestion awhile back, for me to put the pills in my pillbox helps me to visualize what I think I need. I multiplied 35mg. x .20 (that's the % Al says to use when I'm low) = 7, which I assume is 7mg. more this wk. Right? I don't have any 1mg so I'm just breaking my 5's in half which will give me .5 more than I need. I pologize for being so incredibly stupid when it comes to having to figure this out. I can just see you guys rolling your eyes. Believe it or not, I am not as dumb as this all sounds; I think I have a mental block when it comes to this.
As for the clinic, I'm not in the mood for their abuse. They won't help me over the phone when my numbers require help w/o my going in, which is a $40. co-pay. Their perception is always that my testing device is off b/c they aren't happy I home test. Therefore, it's ludicrous to even consult them which is why I just avoid it all by lying to them. Seriously, all they do is tell me to come in.
heartfelt
 
Just had another thought....how does red wine work with equalizing things?
heartfelt
 
Heartfelt,
10 days ago when you tested and were at 4.2 for INR, did you really hold 2 doses?
There is NO need to hold anything for an INR of 4.2---- a half dose would have been fine.
Anyway, now you are at INR 1.8 so increase your dose tonight.
 
Heartfelt -

I believe your Low INR problem was a direct result of SKIPPING 2 Doses when you had an INR of 4.2

Personally, I would have cut that night's dose by no more than 1/2 and resumed your normal schedule for 4 to 7 days and tested again.

What was your previous weekly dose?

I'm thinking that if you went back to 95% of that dose you would 'ease back' into range. (Have you considered getting someone to Tutor you on dealing with Percentages? If you ever hope to Self Dose, it would be a Huge step in that direction if you became more comfortable doing your own calculations.)

'AL Capshaw'
 
THanks Everyone!! I'm usually good at puzzles, but I need to see them and the coumadin puzzle has me completely baffled and bamboozled. It amazes me that it's so finely tuned that my low could even be a result of my higher number.
I completely agree Al that I need to become more comfortable with doing these calculations; a tutor is a good idea I'll look into.
I guess I'm not enamored of this drug b/c a.) it's a drug and I've spent a lifetime of not (having to) taking drugs and b.) I was so brainwashed about what I could and could not do on coumadin that I'm struggling with relearning how it really works.
I was amazed to read that excercise can affect it too. I teach aquacise so I'm in the water a minimum of 11 hrs. a week and last week I was in for 16 hrs. and I teach very fit people; it's not aquacise for feeble old ladies. When I told my cardio guy that I was working out that much he said great, do more. I really can't imagine that 5 extra hours would skew my coumadin however.
heartfelt
 
The more your heart is getting a work out, the more blood is being filtered through your liver, so yes, even an additional 5 hours can make a world of difference.

As for doing percentages, you have a calculator on your computer. Start/programs/accessories/calculator.

Simply do the math on it! For me, 42.5mg - 10% = 4.25mg. If I were too high, I'd lower my dose by this much for a new dose of 38.25 or round it to 38mg for the week.
 
Heartfelt,
I empathize completely! The RNs scold me like I'm a kindergartner who accidentally walked into the First Grader's class. I'm thru with my copays, I'm faking ill to get away from them. I was "out of range"(4.8,1.8) almost all the time with them and one month with the people on these boards and I am getting decent INRs (4.8, 3.8) etc. Everytime I went there, YOU ARE TOO HIGH, YOU ARE GOING TO BLEED OUT! uGGH...GIVE ME A FRIGGIN BREAK.
 
Heartfelt,
I empathize completely! The RNs scold me like I'm a kindergartner who accidentally walked into the First Grader's class. I'm thru with my copays, I'm faking ill to get away from them. I was "out of range"(4.8,1.8) almost all the time with them and one month with the people on these boards and I am getting decent INRs (4.8, 3.8) etc. Everytime I went there, YOU ARE TOO HIGH, YOU ARE GOING TO BLEED OUT! uGGH...GIVE ME A FRIGGIN BREAK.

Monkeys throwing darts again!

It's so funny how they're afraid of a slightly high INR, but not concerned when your too low. You can replace blood cells, you cannot replace brain cells from the stroke from being too low.
 
I told my 'educators'(ie the RNs at the Coum Clin) what I was doing, ie. tweaking my dose and such, and of course they took credit for my INR being in range this week, but they still want me to come back next week...what's that I just heard? KA CHING...bottom line.
 
I told my 'educators'(ie the RNs at the Coum Clin) what I was doing, ie. tweaking my dose and such, and of course they took credit for my INR being in range this week, but they still want me to come back next week...what's that I just heard? KA CHING...bottom line.

Nah, they wanna find out if were Monkeys with darts or not. :D
 
Thanks Colleen. That's exactly what it's been like!! I only had 2 conistent weeks out of 2yrs. when the clinic had me in their clutches and the abuse heaped onto the agregious co-pay was too much! This forum has saved my life, given me renewed hope and fantastic advice. If it weren't for the wonderful, kind and patient folks here I wouldn't have persued getting my own home monitor and taken charge of my own health.

I have to call in my INR to Phillips/Raytel and then they call my clinic if it's out of range. I stupidly gave them the truth (1.8) this time so the clinic just called and berated me for not coming into their offfice to be cked since, obviously my machine isn't accurate. WHATEVER!!! I told them I wasn't coming in b/c there was nothing wrong with my monitor, so they said they "weren't responsible when I have a blood clot". I asked her what made her think I would blame them and she said, just so she was clear to me they weren't responsible. I'm glad I can be honest here b/c I will be lying to them from here on out.

I'm going to ck my INR again on friday.

And Ross, I always appreciate your help! I love the B. Russel quote, it embodies the people at the clinic. They are ALWAYS right and NEVER wrong. Ha!
heartfelt
 
obviously my machine isn't accurate. WHATEVER!!!

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Heartfelt,
I empathize completely! The RNs scold me like I'm a kindergartner who accidentally walked into the First Grader's class. I'm thru with my copays, I'm faking ill to get away from them. I was "out of range"(4.8,1.8) almost all the time with them and one month with the people on these boards and I am getting decent INRs (4.8, 3.8) etc. Everytime I went there, YOU ARE TOO HIGH, YOU ARE GOING TO BLEED OUT! uGGH...GIVE ME A FRIGGIN BREAK.

Who is the Manager of your Coumadin Clinic?
Is the Manager aware of how the RN's are treating their patients?
Even If they don't endorse Home Testing, there is NO EXCUSE for this ABUSE. It reflects a Very Poor (euphemism for Bad Words) Management Style.

Also, what Doctor oversees this Manager and Clinic?
Is that Doctor aware of their shoddy treatment of patients.

The ONLY way to make changes is to get to the the Person in Charge. If that person is the problem, then it is time to Move On to someone better.

'AL Capshaw'
 
I'm movin' on Al.... to you guys. I've tried talking to them in reasonable fashion and there is such a mind-set that I doubt I can break through it. I also am done with my cardiologist whom I can NEVER speak to (yes, I know never is a big word so I'm not using it lightly...I have literally NEVER been able to contact him). The last time I saw him he asked some typical questions, listened to my heart and wanted to know how much I was working out. (we had a big discussion about my wanting to ski and shovel snow and he said no, hence the big discussion. Seriously, I didn't have my valve replaced so I could lay on the couch and not participate or become a cardiac-cripple). My whole visit with him took about 10-15 min., 12 min. sounds about right and it cost me a $40. co-pay and $275! Done and Done. At one point through this heart surgery and recovery ordeal I asked which dr. was in charge and when I found out my internist (who has saved my life 3x!) was, I began to see the light, like who to trust and I have a great and trusting relationship with her, so I was relieved she was in charge of my health decisions. Unfortunately my cardiologist must be in it for the fun, money, prestige, who knows, but he doesn't seem to have my best interests at heart (pun intended), so until I can find a cardiologist who gets it, I'm done taking any of them very seriously. Life is too short for all this angst and ka-ka.

Hey Al, my son in law is going to show me the percentage-ropes. So maybe I can quit tormenting everyone, myself included, with my lack of math skills. My skills are with brush, paint and canvas and I could paint you a fabulous picture of a pie---good enough to eat, but try and compute it to numbers is a stretch for me.

Ross, you make me laugh....a very good thing!

Thanks again everyone; you offer me hope that I can get through this and figure it out.
heartfelt
 
Colleen:

I'm glad you figured out one of the many strengths of this forum. (I plan to perhaps use the dosing charts in a few days when I am FINALLY able to self test).

One of the issues you brought up was interesting: how do we KNOW our meters really are accurate? (I'll probably start a thread on this question) Sure, the meters either have calibration devices (CoaguChek S), or the 'strips' have built in quality controls. I was told by an exec at the company that makes the ProTime that, unless it's checked and calibrated, they can't guarantee the accuracy of the results.

So, the quesiton is -- how do you REALLY KNOW that your meter is actually accurate -- unless you compare it to a standard (a lab test, or a 'known' accurate machine)?

In my case, I suddenly came into possession of two ProTime meters. My first test will probably be TWO tests - one on each meter, within minutes of each other. If the results are close, I'll be more comfortable about the accuracy of both. If not, I may try to figure out how to get another test or just choose which meter seems more accurate.

Really simple, test someone who is not on ACT. If the machine says .9 to 1.2 there is nothing wrong with the machine.

Check the manufacters website for statistical data on accuracy machine vs lab results. They are highly accurate and in my opinion, more so then any labs.
 
Hi Ross,
My INR was 4.2 10 days ago and I forgot to test it again, figuring that since it was high, but not too high then I'd just skip 2 doses and it would all level out. I know I'm going to have to do better with this, but it's just so much brain death for me. I totally flunk percentages unless I see a drawing of a pie. I just filled my pill box and put in 7.5mg today, 5 tomorrow, 7.5 wednesday, 5 thurs., 7.5 friday and 5 each sat. and sun. Does that sound right? Your suggestion awhile back, for me to put the pills in my pillbox helps me to visualize what I think I need. I multiplied 35mg. x .20 (that's the % Al says to use when I'm low) = 7, which I assume is 7mg. more this wk. Right? I don't have any 1mg so I'm just breaking my 5's in half which will give me .5 more than I need. I pologize for being so incredibly stupid when it comes to having to figure this out. I can just see you guys rolling your eyes. Believe it or not, I am not as dumb as this all sounds; I think I have a mental block when it comes to this.
As for the clinic, I'm not in the mood for their abuse. They won't help me over the phone when my numbers require help w/o my going in, which is a $40. co-pay. Their perception is always that my testing device is off b/c they aren't happy I home test. Therefore, it's ludicrous to even consult them which is why I just avoid it all by lying to them. Seriously, all they do is tell me to come in.
heartfelt

Your about dead on. I don't know that I'd of increased it 20%, but you got the dose at 42.5 Which is what I take per week. You did the math correctly, just not sure about going a full 20%. 10% may have been a better option. Anyhow, running things through the online calc reveals this for YOU.

capture_29042009_053813.jpg

capture_29042009_053829.jpg
 
Really simple, test someone who is not on ACT. If the machine says .9 to 1.2 there is nothing wrong with the machine.

Check the manufacters website for statistical data on accuracy machine vs lab results. They are highly accurate and in my opinion, more so then any labs.

I am NOT convinced that testing at a single point guarantees that the instrument is accurate over the Entire Range.

Consider 3 cases in a 2 dimensional space (x,y)
A Vertical Line that is defined by x=1
A Horizontal Line that is defined by y=0
A 45 degree line that is defined by x-1=y

They ALL pass through the point x=1, y=0

SO, a test that shows you are at x=1, y=0
CANNOT tell you which line you are on.

The Mathematical assessment would be that showing a 1.0 reading for a non-anticoagulated person is a "necessary but NOT sufficient condition".

Basically, a single point test tells you that the instrument is working but tells you nothing about it's accuracy over the full range.

'AL Capshaw'
 
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