I don't believe it...

[Raverlaw]

The saga continues...

Some of you may remember that I came home from the hospital with an INR of 1.9. When there was no change after three days on mg of Coumadin, the surgeon's office upped me to 7.g mg daily. Next test came in a 6.6. They freaked and had me stop altogether for two days, then go back down to 2.5 mg daily. My INR fell to 4.4, then 2.4, then 1.9 again last week.

I could see that 2.5 mg wasn't cutting it for me. However "THEY" told me to stick with 2.5 mg daily for another week on Monday, the day of the test. After fuming for a couple of days and reading LOTS of posts here, I decided, on my own, to up my dose to 5 mg on Wednesday and Friday, leaving it at 2.5 mg the rest of the days.

Comes Monday and I test again. INR is now 2.0. The surgeon's office tells me (via phone message) to switch to 5 mg on MWF, and -0- the other 4 days! What the h**l? They want me to go DOWN on my total weekly dosage?

I called to talk with the Pro time clinic nurse. Guess what - she's no longer there. The receptionist, who admits to me on the phone that she doesn't know ANYTHING about Coumadin therapy, repeats that the surgeon's instructions are to do 5 mg MWF and nothing on the other days.

I guess I'm a BAD patient - - because I said (to myself) "screw this" and I have decided to do 5 mg MWF and 2.5 mg TTHSS. If my INR doesn't get into range on next Monday's test, I will add one more day per week at 5 mg until it does.

I can't wait to get stable and get a home tester because I'm convinced that I (a complete newbie to this as you all know) know more about how Coumadin works and how to adjust dosing than my heart surgeon does.

Don't get me wrong - he did a great job on my surgery, but I want someone else managing my anticoagulant therapy.

And for all you who are debating tissue vs. mechanical - this is no reflection on the drug Coumadin - it has not caused me any problems. This is merely a glitch caused by unknowledgeable medical personnel.

Arrgh!

 

[Ross]

You know as we all do that what your being told is way wrong!

I don't blame you one bit Bill. Is there anywhere else you can go nearby? If not, I'd do what your going to do. You know full well that if you follow those directions, your going to be in the 1. range and might as well not take any.

If you haven't already gotten Al's algorithm chart, do so. Meantime, if you have too, print out the entire section from the link I gave you that had those algorithms and dosing instructions in them. At least have a means of backing yourself up with knowledgeable medical advice.'

The initial dose of warfarin should approximate the chronic maintenance dose that is anticipated. In most patients, the average maintenance dose is 4 to 6 mg per day. Dose has an inverse relation with age. In patients 50 years old, the average daily dose is 6.3 mg; in patients 70 years old, the average daily dose is 3.6 mg.


Here is the link again in case you need it!!


http://www.aafp.org/afp/990201ap/635.html

 

[EVELYN]

Hi Bill

Welcome to INR---IT'S NEVER RIGHT!!

I would agree that your coumadin person is clueless. I would also follow the 10% rule that everyone here talks about. It has worked for Tyce--quite well. Even with our old machine, and clinic and lab comparisons, Tyce had problems with his inr. He (for this moment) is now pretty set in his dosage....5 mg. 6 days a week, 2.5 one day. The cardio would like to see him take 2.5 2 days, but that brings him down to 2.2-2.5 level and we both have agreed that he should stay around 3.......

As you may have read in past threads, we had major problems with our old machine (Protime). We have now obtained a Coaguchek and last week tested and agreed with the cardio's clinic.....one more test this week and we're on our own. It's a different machine, lots of controls, a bit awkward to use at first, but if you're interested, I can let you know what we think of it in comparison to our Protime.

Evelyn

 

[Ross]

I just wounded myself for the sake of testing and I'm at 2.4 while following instructions and not changing my dose. I called the nurse and told her to tell the Doctor that I'm increasing the dose by 5% from 40 to 42.5 mg per week. By doing it this way, I hope to avoid a confrontation with him. 5% should bring me very close to 3.0. We shall see next Wednesday!

 

[catwoman]

Bill:

Al has posted a link to the organization for certified anticoagulation patient care providers. Check it out and get with someone there. Also, get a machine!
I started out with 2.5 X 7 straight from the hospital. Had my first 2 INR tests at my cardio's office in Dallas. The anticoagulation nurse said I could either continue with them, coming to Dallas weekly (ugh!) for CoaguChek tests, having the blood drawn at a lab in Fort Worth and results faxed to Dallas or having my PCP's office monitor me. I decided to try my PCP's office first. My PCP isn't a CACP (or whatever the term is), but he's been very knowledgeable so far from what I can determine.

We've tinkered dosage, upping it so I can eat a good-sized salad each day and I now take 6mg X 7. Last week my INR was 3.1; week before I think 3.3 or 3.5.

I have not had any problem with my ProTime, as compared to Evelyn's husband. I've been using it since early December. Perhaps there's been an engineering/electronics change since his was manufactured?

My surgeon gave me my first Coumadin scrip; my PCP writes the scrips now.

 

[Raverlaw]

Thank you all for your help. And thanks for the link, Ross. I had read that article before surgery, but printed it out now, because I think I'm about to have an argument with my surgeon.

I never expected my INR to be stable or correct right away - I anticipated that there would be changes to my dosage, etc. What frustrates me is that the surgeon's office clearly doesn't understand the lag time involved in metabolizing warfarin, and they're clearly not looking at the *trends* in my dosage v. INR. I made a simple little spreadsheet that tracks my dosage and my weekly INR, and it was obvious to me what was happening.

On top of that, I'd much prefer to experiment at the high end of the range, not below 2.0!! It would really p*** me off if I survived AVR and then croaked from a preventable stroke!

So pardon my french and my momentary grumpiness. I'm going to master this thing on my own, and am waiting to hear from my PCP, who runs a coumadin clinic, about transferring my therapy to him without waiting for a release from the cardiologist.

And as soon as I hit that *magic* three month mark, I'm getting a machine!

 

[Ross]

I made a simple little spreadsheet that tracks my dosage and my weekly INR, and it was obvious to me what was happening.

I swear you have to have one of these. It gets to a point where you can look at the chart or graph and tell the instructing person their full of it just by looking at past trends. The last Clinic I went to, had a nurse that was forever changing my dosage until I showed her the track record. We settled at the 45mg per week and I was stable for the longest time. All it took was one out of range with a new Doctor and the fun begins again.

 

[Guest]

Bill,
My guess is that your surgeon would rather that your PCP managed the warfarin anyhow. Surgeons are usually impulsive people who like to cut and cut 'em loose. They have very little tolerance for long-term things like warfarin.

 

[tommy]

Bill,

My cardio has a coumadin clinic. They are very cooperative. They "manage" my dose even though I test at home.