range and home testing

[Harpoon]

This is in response to the MVR range question, but I wanted to set it on a seperate thread...

"You are in the best of positions - you have a CoaguChek and a doctor who lets you use it to make decisions. This is exactly where I would like to get everyone on this website. If someone can use they internet, they can surely figure out their own warfarin doses if they have their own tester.
__________________
Al Lodwick, R.Ph.
Certified Anticoagulation Care Provider "



Two part question here:

One, I've got an artificial tricuspid valve, one of the brave and few I guess, at least in here, and my cardiologist has set 3.5 as the target for my protime/INR.

I'm being managed through a little clinic with my primary physician's office, they're checking every two weeks though if there's a problem, I go do2wn to weekly.

Last week (Monday actually) I tested at 3.6. The nurse showed the results to a doc who said I should alternate between 7.5 and 7mg doses, taking 7.5 two days then 7 then 7.5 for more days then 7 and retest in a week.

Is one tenth of a point off target really that serious to play around wiht alternating doses like this?


Second, just how serious are you about getting patients to home test? How much of a fight is it to get this done through an insurer and is it worth it in the long run?


More questions soon probably...

 

[bvdr]

IMHO I think they are crazy to mess with your dose! What a way to add unnecessary stress to your life!

 

[Harpoon]

Actually....


Shhhhhhh.... Don't tell anyone....



I've been going steady at 7.5.


I have had a few helpings of spinach ( ) in the last week or so which I know isn't the greatest thing in the world for me, but it hasn't been a LOT by any means...

 

[Emma]

I can't believe you were told to play around with the dosage for that teeny change - i would just leave it be cos i'm sure it doesnt make a difference - sounds like you sometimes have as dozey nurses there as we do here!
I don't touch Chloe's unless shes either side of around 3-4 and her ideal target is 3.5 too. It's easy to check with coaguchek (or whichever home test you have) isn't. Maybe you could check it again in a couple of days.

Emma
xxx

 

[Ross]

I could see changing the dose if you were .5 over or under, but not at all for .1, that's just plain silly.

 

[nadi]

IMHO, NO, they should not mess with you dose. Talk about a roller coaster ride from H_ _l.

I was one one! Won't be using the coumadin clinic again! I will try to make my story short.

My Cardio ofc change me over to the coumadin clinic in Dec. after being fairly steady in the 3-3.5. range for 6 months, down to once a month testing($3.50). Once the clinic got a hold of me the numbers went all over the place "listening" to them(every 2 wks and $15. a pop). I should have known not to listen! DUH The last time I went to through them I needed a draw for my BMP so asked them to do the Protyme also (Friday) Tues rolls around and no word from the nurse, so I called them. She proceeded to tell "you never had a draw" After I told them fine I had better not be charge! and will let my PCP handle it from now on! She call me back the "next" morning(Wed) with the "they just ran it" and its 2.9 see you in 2 wks.

Pcp doing them now. Back to original dosage prior to coumadin clinic. Running back in the the 3-3.5 range. So to make a long story short "Steady dosages is the key."

Sorry to be so long winded.

 

[Harpoon]

I'll admit to worrying a little bit about the fees they charge whenever I get checked.

I pay $15 a pop each time I have them check a protime. They do it as a "level I" office visit which means they get to bill the insurer because they check my height, weight, BP, pulse, and THEN protime.

Before I started on the clinic thing, I was getting blood draws where they ONLY drew a blood sample then sent me on my merry way with a pressure bandage around my elbow. I don't know what the cost was for the labwork, but I know I didn't have a co-pay, just "needle tracks"...


By the way, I'm STILL sporting "tracks" from all the IV's and such from when I was in the hospital for my VR over a year ago...

Also a few scars from where the pacer wires ran out from my wrists and ankles.

The scars from the BIG surgery and all the subsequent thorachotomies (that spelled right?) I had don't count, OBVIOUSLY those are going to be very permanent and VERY obvious when I go to the community pool.....


I get the greatest looks now when my wife and I take our son to the healthclub pool (we got a membership for ourselves.)

 

[Blanche]

Harpoon:
You are now a member of the club---Caught up in doctors' lack of knowledge of anticoagulation and the management of same. Albert went throught this same mismanagement after his stroke. His cardiologist is a cool guy, but he also has 11 partners. Everytime Al got a protime test a different doctor inerpreted the results according to his own system of managing anticoagulation. Al's range was 3.0 to 4.0 because of special circumstances, yet one of the docs had it in his mind that anything over 3.5 life threatening. Then, when we questioned this doctor's assessment, some clerk with a high school education and little training, who said she had been in the medical field for 16 years, refused to leave a message for the doctor because, of course, he was a doctor and knew best. When we finally reached Albert's cardiologist, we told him how much we loved and trusted him, but that we could not live with the conflicting opinions of his other 11 associates. That's when Albert got his own home monitor, which we paid for.

I think that any doctor who reacts to an INR of 3.6 needs more training on anticoagulation. Having a home monitor puts you in charge of making the decisions that affect your continued good health. The cost is a big consideration. We paid for our own monitor, and we are retired folks on a limited, fixed income. I looked at it this way. I married my handsome Prince Charming when I was 20 years old. After more than 40 years, he was still handsome and charming, and he was still here. I was determined to keep it that way. We still have to pay 100% for the supplies, but after three years, I would still have it no other way. The home monitor puts you, the patient, the one who has the most at stake, in charge. Peace of mind does not come cheap, but it is priceless.

Best wishes for whatever you do.

Blanche

 

[Guest]

As I have said before, tinkering with an INR that is 0.1 units off from the goal is like trying to take a cross-country trip and keep the gas tank exactly 1/2 full.

 

[danielgilboa]

First of all, you should have a range not a single target. Even with a range 1.0 wide it is sometimes dificult to keep your ballance inside.

Second - these machines have their error range, and the result varies through the day so 0.1 means nothing at all, even if it is out of range.

Third - if you can get your own tester and do your own dose control, with advice from the clinic you will do better. The only thing is to react in a mild way, never jump the dose up or down.

There are SOS's when yo need clinical assistance, this is when you go far out of range and they need to use IV heparin/vit K to pull you back in. But that shouldn't happen.

You know yourself best and you know how much spinich you can get away with without the INR noticing, so take control....

 

[Harpoon]

Magic carpet ride???

Magic carpet ride???

Ok, this is just me being downright lazy; though I may go and look it up anyways after I post this just because it looks like I've got a light night at the office here and I'll have time to kill.


Today, after a whole hell of a lot of running around all day (and being on a virtually empty stomach, save for meds and a glass of orange juice as of my 2:20pm appointment) I got my protime.

4.2


So they've got me doing the staggered thing some more, MWF at 7.5, the rest of the week at 7.0. Retest in two weeks.

Question: If my INR is high do I bump up my dose or pull it down?

I'm kind of at a point here where I just might take matters into my own hands and screw what they say, just read the machine and listen to what they list my vitals as (by the way, my weight's still declining, not much, but I'm 2 pounds lighter than I was a week ago on the same scale.)


Bouncing up and down is fine and all, but I've got a finite supply of pills and either they have to give me a new scrip for 5mg pills which I can split to get the .5 or I have to restock on 1mg pills and split some of those.


On the one hand, I think what I'm doing now for testing is better for me because it's MUCH more regular than what I was doing before (blood draws, when I thought to have it done) but on the other hand, I'm starting to wonder if I'm being micromanaged here by docs that aren't sure what they're doing, at least for a 31 y/o patient with an artificial TRICUSPID valve (most are mitral or aortic right?) and a CHD...

I'm claling my cardiologist tomorrow for his opinion, didn't have a chance to do that today in between all the other crap I had to do relating to school, work, and errands for the wife which I haven't completely finished.



Shhhhhhh!!!! Don't tell her!!!!

 

[bvdr]

You know how it is when you ride with someone rather than drive. When you arn't responsible to know the way you just don't pay as close of attention to where you are going. I think that is what happened to you. You've been in the passenger seat as far as your coumadin management goes.

Time to get in the driver's seat.

A person who takes no coumadin would have an INR of Zero. As you add coumadin the INR rises. I think you may as well ask for a couple of more prescriptions for different strengths of coumadin to make it a little easier on yourself.

Remember too, that your INR may fluctuate with the amount of extra fluid you are carrying around. Good luck, Harpoon!

 

[Harpoon]

How quickly can INR change???


I wake up in the morning and usually take my meds with a glass of orange juice before jumping in the shower and getting dressed and starting off my day. Most of the time I have my INR checked about mid-afternoon, when it gets checked and usually my diuretics have already been at work for a few hours, doing their thing.

I'm not retaining fluids that I know of, if it's there, it's minimal at most and I haven't been retaining since coming home after surgery (whoohoo!)

I was just reading through Al's stuff on warafin and saw most of his patients (or whatever it was) were getting tested at about 4 week intervals.

How often should testing be done? How much is too much?


Perhaps I can take some information in for my primary physician's office where I'm going for protimes, maybe also a copy for my cardiologist.

What would be best to show them?


Maybe we can make this "recommended reading material" for all providers of care to rookie (and "veteran") anticoagulation patients....

 

[Guest]

What you do today will have very little effect on today's INR reading. This is because warfarin affects the production of the vitamin K dependent clotting factors. It does nothing to the clotting factors already in the blood. What you do on day 1 will probably show up on day 3 or day 4. Failure to grasp this very important concept is why many people, physicians included, cannot manage warfarin.

The INR if you do not take warfarin is 1.0. Think of warfarin like gas in a car. The more you take the higher the number. But unlike most cars your INR will go from 1 to 2 in 3 or 4 days flat. And when you slam on the brakes it will go from 5.0 to 2.5 in 48 hours. (These are averages - please do not write and tell me that yours changes in 12 hours - it can happen but it is not the average.)

 

[Harpoon]

See, that's what's kind of "bothering" me about what I've been told to do in regards to changing my dose after such a small deviation in my INR.

If my INR is 3.6 and my cardiologist sets a target of 3.5, what's to say taking 7.5mg for two days, 7.0mg a day, then three days at 7.5mg, then restest is going to make that much of a difference if you may not see a change in INR due to dosage for so many days? What if the 3.6 is actually part of a downard trend, not upwards?

Seems to me a better course of action would be to say testing normally on a monthly basis and only going up to maybe bi-weekly or every 7 days if there's a more significant shift, say 1.0 or more from target and even then, you don't change dosage unless it's an even bigger deviation from the target...

But then, I'm just the rookie with little or no formal training on the matter.


For the record, my last protime was at 4.2 so I'm cutting back on my dosage with plans to retest later this week.

I also plan on checking in with my cardiologist either Tuesday or Wednesday (he's usually seeing patients Wednesdays at his practice) and picking his brain on the matter.

 

[Marty]

At 4.2 I would use the "10 percent solution"- reduce weekly dose by 10 per cent distibuted as evenly as possible over 7 days and then retest.If in therapeutic range,( 3.0 to 4.0?) stay on this dose for two weeks and then test again.

 

[Harpoon]

So my cardiologist and I FINALLY connected today. We've been playing "phone tag" the last few days and he actually successed in catching me during a break in my class and we chatted for a bit.

First off, he thinks it's a little rediculous to be fussing with med changes when the INR's only a few tenths of a point off the mark. He clarified the range I should be in, 3.5 to 4.0 so a 4.2 is nothing to fret over. He also faxed in some new scrips for me so I now have 7.5mg pills which makes things much easier than cutting a 5 to get the 2.5 and adding a 4 and a 1 to make 7.5mg for a dose...

Oy!

We also talked about my electrolytes since I've been having wee cramps in my right leg and we had that checked a while ago but I hadn't heard the lab results. All of that is within "specified parameters" so the cramping isn't an indication of a more serious problem (potassium deficiencies...)

Also asked about my "rigid" belly which my wife keeps pestering me about.

We had done an echo a few months ago and took a few minutes to look for fluids in my lower abdomen, didn't find anything so he still thinks it's probably just fat, not water retention.


Yeah, I'm fat, I've got a doctor's certification on that.

Only about 15-20lbs over what I "should be" at for my body type though, and it's slowly coming down at about a pound every two weeks or so.


By the way, it was my cardologist who took the echo probe to my belly to look for fluids, not the echo tech... Thought that might be worth mentioning as some docs won't even sit in the same room during an echo....

Wish everyone could have a card like mine, he's pretty cool.


Gives me Jolly Ranchers Lolli-pops too, when he thinks of it.


It's a pediatric cardiology practice so they have that kind of stuff laying around. Also a nice asssortment of toys in every exam room and evil Barney videos on the echo rooms.

I keep asking if they get CNN or if there's a baseball game on....

"Nope," the echo tech says, "no cable. Didn't you ask me that last time?"