Frequency of Tests?

[Perrster]

Al,

Are there any general guidelines for the frequency of an INR test? I scored a "perfect" 2.9 on my last test in late December. My future Coumadin Clinic appointments have always been set for roughly 30 days (after a good score) and 2 weeks (after an unsatisfactory score and subsequent adjustment of Coumadin).

Do we go by an unwritten rule of thumb that says we always have to test every 30 days if our score is good? As long as a person is feeling fine and doesn't go on a lettuce-eating binge or do something real whacky with his diet, could their test frequency be extended?

I once didn't test for 2 months because the hospital lab I was going to employed very bad vampires so I avoided it as long as possible!

My point is, I'm still here to talk about it and now have another situation that may force me to go back to those bad bats! My lovely Coumadin nurse's last day is today. I was seeing her diligently for a whole year and nobody knows my veins better than her!

Basically, I'm thinking of delaying my 30-day "due date" to about 45 days so I can see my one and only favorite clinic nurse again at her new job. Am I breaking the law?

I am also going to benefit from her new employer (a local Cardiologist and Director of the Cath lab at the hospital) so I'm waiting my records to be transferred.

Thanks in advance for your thoughts.

[RobThatsMe]

Hi Perry,

I know how you feel about staying with the nurse that you feel is most knowledgable. I just found out that the nurse that I have been working with to adjust my levels, just left to be a stay at home mom. Well, the new nurse proceeds to tell me that she has only been adjusting the doctors' patients Coumadin levels for 2 weeks. I am so glad I have gained the confedence to adjust mine on my own. Thanks to my home testing unit.

It does take 3 days for an adjustment to your dose to stablize within you system. I surely would want to test more frequently than every 2 months. Alot can happen within that time, diet changes, exercise level changes, colds, etc. As you know, anything and everything can effect our INR levels. I test every 2 weeks if I have been within range for the prior few tests. But, I test weekly if my levels have been bouncing.

I am sure Al will provide his thoughts on this as well.

Have a great weekend!

Rob

[Nancy]

Hi Perry-

Joe has always gone in on a monthly basis, unless his Coumadin is a little out of whack, then it's every 2 weeks and has even been every week. Too many things both known and maybe even unknown can influence the INR. It's too tricky to let it go too long.

So be a good boy now.

[hensylee]

Now Perry, you know better than that. Nuff said

God bless, anyway

[allodwick]

I have stretched out the time between tests to 6 weeks for people who have not had their warfarin dose changed in the past 6 months. I have even gone to 2 months for people who have not had a change in over one year. But...
One of the most interesting aspects of warfarin management is that the more routine your life is, the easier warfarin is to manage. I saw a lady today who is a high functioning Down's Syndrome person. She eats the same thing every day, carries out the same duties every day and is able to take the bus to get to her appointments. I have not changed her warfarin dose in over 2 years and her INR has not been up or down by more than 0.3 units in that time.
At the other end of the spectrum - homeless. Never any routine. They rarely return for the first follow-up appointment and I can't recall one who ever came back for the third visit.

[Perrster]

Once again, I appreciate your thorough reply.

I think I'll be ok stretching my next test to 35 or 45 days so I can see the good nurse, but I'm surely not planning to make a habit of it!

Interesting factoids about routines.

[Herb M]

My INR usually does not fluctuate very much so I usually get tested about every 6 weeks. For the few times my INR was out of acceptable range, I tested in one or two weeks after a change in doseage and then at 4 weeks before going back to the 6 week interval.

[McCln]

You should know by now that you should stay in routine unless there has been a change in your numbers. Please go despite they being vampires. You know that when people refuse to go to doctor's, what happens? They get sick and then have to go to doctor. The same thing here, and you are an example to others who are still quit new, like me. You are telling me to not take good care of myself, by neglicting my coumadin check every month. Shame on you. I am doing quite well, but when one does not take care of him/herself, I have to say something. Please keep up the coumadin checks. You will be glad you did.


Caroline
Aortic valve replacement
09-13-01
St jude's valve

[Perrster]

I know, I know.

I appreciate the lecture. Really! I won't let you down.

I've been thinking I may have to just bite the (silver) bullet and go see a bad vampire.

My next Protime test is not actually scheduled until the 30th so I still have time to work this thing out. My former clinic nurse starts her new job on the 28th. I'm hoping I can get on the Cardiologist's new patient list by then and get in to see her, even before I see him! (I wouldn't have had a follow-up appointment with my old Cardiologist until June). I've already requested my records transfer and faxxing a letter today explaining the scenario to the doc.

I'm hoping her new boss (and my new Cardiologist) would allow her to take a 5-minute break (for me!?) from her orientation.

Thanks again.

[RobThatsMe]

Hi Perry,

Hey..Perry.... Here's an idea! Take a gettaway weekend mini-vacation .....get a cheap plane ride to Nashville, and use my ProTime Unit.

Hope you have a good week!

Rob

[Lorraine]

Perry..., Perry...., Perry...!

I know how you feel about the INR checks. But come on now. We don't want to set a bad example for all the newcomers, now do we? I understand about wanting your favorite vampire to take care of you, but you should be checked, especially if you don't have a home unit to check yourself. At my cardio's office they use the Coagucheck machine, thank goodness. Nothing is simpilier than that little prick to my finger. Doesn't leave bruises, I don't have a sore arm when they had to chase my veins around, I love it. THe best is, it doesn't matter which nurse takes my protime. When they are going to a vein, then I can understand you wanting to prolong the agony if the wrong person is there to do it. Did you ever ask the nurses at your clinic, why they don't a Coagucheck or Protime unit for testing there? I know it's available in our area. I like it because I know the results right then, and I'm not playing phone tag with the nurse to find out what my instructions are. Just thought I'd add my two cents.

[Perrster]

Rob, the thought seriously did cross my mind!!! Oddly enough the clinic I went to for a year does have a Coagucheck machine. Don't know why they didn't start me on it last year?

Are the readings any different once you "convert" to Coagucheck from the standard needle approach?

I appreciate all of your concerns and yes, even being lectured!

I'm still on my Protime schedule for January and now just waiting for my new Cardiologist office to give me an appointment. I will discuss Coagu-checking once I'm in there. Makes sense as I've grown pretty tired of the bruises and especially vampire "miss-hits." Count dracula wouldn't stand for it!

Thanks again.

[RobThatsMe]

Hi Perry,

When I tested my unit against the blood draw and lab results they were within .1 1/10th of each other. That is good enough for me!

I took my unit to the lab, they drew my sample, then I tested with my unit right there. so the tests were within minutes of each other.

Hey, if you are gonna be testing the rest of your life, get away from the needles.. they scar your veins, and each time it gets more difficult for the lab tecs to find a good spot to draw from.

Rob

[LUVMyBirman]

Perry...
Listen to Rob. Dump the vampires as soon as you can:D. Since my veins are basically non-exsistant.....the finger prick route works best. The only good vein I had is still calcified after almost three years. They could only get me in one location while in for surgery.

At this point..... I would recommend waiting on the new Coaguchek to be released to the general public again. In the meantime... see if you can demo a Protime so you can make the best choice.

PS. I emailed you regarding ORD.

[allodwick]

This is changing the subject but it was so astounding that I just have to share it.

One of my patients is a diabetic. She got the stomach flu and couldn't eat or keep much down. But she faithfully kept taking her warfarin and insulin. She was admitted over the weekend.

INR = 12.6
Blood Sugar = 18

Not a misprint. She did not bleed but was unconscious from the low blood sugar when her daughter found her.

Can you imagine an INR almost equal to the blood sugar???!!!

Moral of the story, if you get sick and can't eat, you should call the person managing your warfarin and see about reducing the dose.

[LUVMyBirman]

It's unfortunate that I experienced similar cirumstances. Ended up with an INR of 14. Needed transfusing with frozen packed cells. Initially tested at a 4.0 was told to continue. This was two weeks post op with an obvious pretty fresh surgical site. I was none the wiser. Following directions provided by my cardioligist. Progressed into cardiac tamponade and CHF...back to surgery. Why? because of pure negligence. And not on my part.

A lesson well learned, the hard way :(

[Perrster]

In spite of all the good advice I received from everyone on this subject, I did wait out the 45 days. I kept a positive attitude that this wasn't going to kill me and lookie here...

Last test: December 19. Results = 2.9
January 31 test = 3.5 Results phoned to me this morning (by my not-so- long-lost nurse buddy!)

Sure it went up a bit, but a lot of things have contibuted to it with the holidays in between tests, vacation in Florida, and a root canal just a week ago (with Amoxicillin in me, of course). She advised me to flip-flop one-day's worth of Coumadin and go back to my regularly scheduled program and see her again in 30 days. Phew!

It was worth the wait also because she is acquiring a Protime machine. Yippee!

Rain, your form works great!

Thank you all very much and have a great February already!

[RobThatsMe]

Hi Perry,

My only concern would have been .... " Just how did it go during that period? " Perhaps it was higher , and was on it's way back down.

I am a firm believer in testing once a week, if you have a home testing unit. I may go every 2 weeks, if my levels have been stable over the last few tests.

Home testing has proven to help folks stay well within their recommended ranges.

Go Patriots!!


Rob

[LUVMyBirman]

Hey Perry

Now this is cause for celebration!

I still would have a beef with that nurse though. You are within range. 3.5 is wonderful.... Especially with dual valves. Why is she messing with you?

Believe me....I have been there, done that! Never been better all by my lonesome. Can you get into home monitoring? Like Rob stated.....testing once a week will give you tighter control.

[McCln]

Despite what Gina said, don't have a beef with your nurse friend. She told you that you were okay for thirty days. My PT was down and just got back to normal. It is okay to be betweem 2.5 and 3.5. You don't want it higher than 3.5 or lower than 2.5. You are doing quite well. Keep up the good work.


Caroline
09-13-01
aortic valve replacement
St. Jude's valve

[Lorraine]

Perry,

I agree with Gina. You and I both have dual valves and when I'm at 3.5 I'm happy. Even my nurse doesn't isn't alarmed. It's just when I jump up to 5.0 and then down to 1.4 within three days that they are concerned. That I think, was caused because they had me hold for two days after the 5.0 reading and then take 7.5mg that Sunday. Well that Friday I had started on antibiotics after they told me to hold the Coumadin. They said antibiotics usually make the PT go higher. It had gone the opposite way instead. So then they had me do 7.5mg for three days and on the 4th day take 10mg. My last reading was 2.8 on January 18th. I go for my INR tomorrow.

I'm perfecting happy if it's between 3.0 and 3.5 with having the dual valves. You were lucky everything turned out okay. I'm still working on getting a home unit just to be able to monitor myself and see where I stand. I agree with the rest that have home units, it definitely would give us peace of mind.

Have A Great SuperBowl Sunday!

[allodwick]

When someone instructs a person with an INR of 5.0 (who is not bleeding) to hold warfarin for two days, they are displaying their ignorance about how warfarin behaves. The INR should decrease by half every 48 hours. Then 3 to 4 days later you are still below the desired range. To require a 2-day hold, the INR should always be above 6. I wish you would all challenge the person who gives you instructions to explain their line of reasoning. They will not be able to give a clear answer because they only know the hocus-pocus method of warfarin management.

About the only exception will be when someone is a very slow metabolizer of warfarin. This is characterized by having a weekly dose of less than 15 mg.

[Lorraine]

Hi Allodwick,

I agree with you. I'm still in the learning stages of when my INR readings fluctuates. I want to trust in what the nurses tell me but they aren't living in my body. As everyone here as indicated that has their own machine, at least weekly self testing gives you better control. The next time I go to 5.0 INR I will ask them to justify why they want me to hold, because it didn't work out for the best last time. I had to go for three readings within that week. Thanks for your input and I will point the 6.0 figure out to the nurses as really being high. At 5.0 I wasn't bleeding. Then by having me hold, the INR dropped to a 1.4INR so they obviousely went too extreme. I will share this information. Thanks again!

[LUVMyBirman]

Hey Lorraine....

The same thing happened to me on numerous occasions. They even admitted me to the hospital once....hooked me up to the good old Heparin for two days. A little extreme, when I could have been sent home on Lovenox.

Anyway....try to get your doctor to agree to cut your dose in half for one day when you get too high. Then, resume your regular dosing schedule. If you were riding high for the prior few tests... do the half one day theory and decrease by 1/2 mg for the next week. Test again and see where you are at in week.

It works for me. It is my understanding that if you take anything over 5mg per day.... you are considered a fast metabolized of the Coumadin.

[allodwick]

Keep preaching this to everyone who will listen. You two have it right on the money.

[Perrster]

Lorraine, I think I'd go nuts trying to keep so many different doses of your Coumdain straight, not to mention purchasing all of them. I hope you get yourself stabilized soon.

While I'm becoming a believer in the self-testing machines, I currently have to place my trust in the hands of my Coumadin Clinic nurse. It's encouraging to know that she is advocating (to the team of ten Cardiologists' where she works) to purchase a Protime machine. I told her I'd be first in line to try it. My vr.com self-testing buddies are very encouraging.

In the meantime, the usual rules apply by staying consistent with my diet and meds. Darned Amoxicillin is always a culprit, isn't it?

Allodwick, I know some of the people here test themselves every week. Is this really necessary? None of my heart care professionals has ever suggested that I should test more than once a month (unless I'm off course, of course!). Is weekly self-testing therefore more of a lifestyle decision than clinical?

Gina, the string you started last week about St. Jude was encouraging too. How come none of us were involved in that test that lasted for 20 years?

Onward and upward.

Cheers!

[allodwick]

Probably the biggest reason that I do not have people tested more often is that it is inconvenient. Most can't leave work an hour or two early one day per week to get the test done.

It appears that the more time spent in your target range the less likely you are to have a unwanted event.

I'm not entirely sure that testing every week prevents enough adverse events to amke it worth a person's time to take off work one day every week. But, when you can test at home for very minimal expenditure of time, it is probably worth the time and effort.

[Perrster]

Sounds logical to me.

Curious what the weekly cost is for y'all self-testers? I remember Hank's demonstration in Nashville, but forgot the discussion on the price of the test strips.

My hospital (Coumadin Clinic) charges $53.50, however I pay $0.00 because of insurance coverage.

I'm kind of envisioning eventually going into my Cardio's office to use the Protime system like a walk-up computer in the library. I doubt they will keep it that simple.

Have a nice week.

[allodwick]

look at www.hometestmed.com to get info about prices.

Perry,Have you ever thought about changing your handle to
Perrier? (PerryA)

[Tammy]

Hi Perry and others,

Perry, glad it worked out for you. I also tested at 2.9 on my last INR. But anyways - once I went 8 weeks between tests. It was so regular for so long, it had not changed in a year and I was confident. The test at 8 weeks was fine but my Doctor was very mad at me and gave me down the road. I received a nice lecture from him and have not went over 6 weeks since. I generally go every 4 weeks and don't give a second thought to it in between.
You have to figure what works for you, testing every day, every week, every other week BUT don't wait 8 weeks. LOL.

Tammy

[LUVMyBirman]

Happy Monday Perry.....

My Coaguchek strips come in a box of 15 @ 90.00 per box. I run one set of controls upon opening a new box. Controls use two strips. This then gives me 13 weeks of tests out of one box.

This is the real kicker....my copay is $15 per visit. The insurance paid for my unit...but WILL NOT pay for the strips.
They will pay for me to have my protime drawn at the doctors office at 90.00 a pop in an unlimited fashion.
Hummmmm 12 tests for $90 or one for $90??? Have ceased my battel as it will be short lived. Changing insurance and I have already checked with the new company....no go. It is defiantly worth the expense to me.

If you can wait it out....I hear Coaguchek will be selling in the US again. Would advise comparing to the Protime and make your decision based on the demos. They are both great units.

Have not taken mine for an air journey since 9/11. May bring it in March for you to give it a whirl.

[Marty]

I got a call from Roche telling me that they will not be selling the S in this country since it has not been put though FDA approval as yet. They will sell the old Coaguchek soon. I have this unit and it has worked perfectly for over three years. Have no qualms about taking it instead of the S. Medicare is going slow. They still have not paid for any monitors. Will they ever pay for strips? Roche doesn't know and neither do I. My past experience says- keep making claims. One day you may get reimbirsed.

[LUVMyBirman]

Hi Marty

Thank you for the updated Coaguchek information.

Upon watching a friend of mine test her blood sugar..... was envying her tiny little unit. Feature of interest being the strip. It has an indentation on the side and just grabs the sample. No holding over the target as we do with the Coaguchek. Which is not a big deal. Just thought I would mention there are better ways to design.

Wonder if Roche could handle this without changing the integrity of the original unit?

[Lorraine]

What my doctors office has at cardios office is the Coagucheck. It seems comparable to the Protime unit. I went for my INR today and it was 4.4. I had 5 beers while watching the SuperBowl last night at a party. I mentioned that to the nurse too, since I know that has a tendency to raise my INR. I think a couple of good salads would bring it back in range myself. I'm waiting for the doctors office to call and tell me my instructions and I'll take it from there. I already mentioned to the nurse that I didn't think they should hold my dosage for two days like they did the last time. I said look where that reading went in three days. From a 5.0 to 1.4. So I'll see what they say, and I'll argue the point again about not doing such a drastic change. I'll let you all know what happens. Take care!

[cookie]

I swear, once I think I have it figured out and the levels stay pretty consistant- boom - I went in this morning and my levels went from 3.7 to 4.3 with absolutely no changes in diet or activity. My pharmacist at the coagulation clinic was iffy about the 3.7 but did not change my dosing but did have me come a week sooner than usual. I am baffled. I even ate 2 small salads this past week since my reading was on the high side last time. My husband did have surgery for a clogged carotid artery this past week. Do you suppose the stress had anything to do with the rise in INR? I am lost in the sauce!:confused:

[Christina]

Hi Cookie,

I consistantly eat some greens or something green every day. I refuse to give it up. I love my salads and chinese vegies.
If I leave out the green stuff my INR will go high. If I eat too much green stuff which I also have done, my INR will be down. Last time when I ate a cup of spinach my INR went down to 2.6. My doctor still did not adjust my dosage and let me continue taking the 20mg a day that I have been on now for quite some time. I think I understand it quite well now, and am not as scared anymore. I test every two weeks now, but if the numbers are either too high or too low he'll tell me to check again in two days, and call him again. It all depends on the numbers.
Like Perry, would I test only once a month? Never, too scary! I need to know my numbers often otherwise I am always wondering.
I don't know if stress has anything to do with INR levels. I suppose it does as everything interferes with Coumadin.

Take Care,

Christina
Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St.Jude's Mechanical

[LUVMyBirman]

Good for you Lorraine. You tell them! It's gets to that point, I know all too well. Stick to your guns. It's just getting those nurses to agree.

Cookie.......Hope your husband is doing well. When my husband went through all of his medical concerns recently.......my INR went down. My activity level was up. All the running to and from the hospital. Lots of walking. I really did not eat much of anything. Didn't feel like it. I know this may sound strange.....but maybe you have eaten less and have been to wrapped up in things to calculate. Not eating can raise your INR.

[cookie]

Gina M.
Thanks for wishng my husband well. He is doing great - in fact he has to stay home for 2 weeks and we are on week #2 and he can go back to work anytime! LOL I love him but..............
As for not eating when he was in the hospital, very little stops me from eating! I have this hand to mouth disease! I have gained 40# since my surgery. Thank goodness I'm 5'11"! I'm not liking where I am right now. Oh well - where are those chocolate chip cookies!

[LUVMyBirman]

Cookie....You are too funny:D What is it with us 'tall people' and valve replacement??? 5-10' myself. And yes, thank goodness we have places to 'hide it'!

Noticed your mention of weight gain since surgery. Yep, up 30 for me. Ahhhh. Did not start right away. After starting beta blocker. Are you taking one? Trying to get off. Hopefully soon!

[allodwick]

Isn't it great that chocolate doesn't interact with warfarin the way vegetables do?

[Perrster]

Al, it's great to see such humor from our resident Coumadin expert!
Nyuk, Nyuk, Nyuk!

BTW: keep up the serious good work, too. Seriously, I have learned so much from you and others on vr.com. I think I have my Coumadin in control, then wham! a new twist affects me and I come on board to try and learn a little more about it. And, there's always an answer!

Now, if only all vr.com members could get their clinics to come here once in awhile, maybe they'd listen and learn too and not rely so much on "hocus-pocus" treatments?!

THANK YOU, AL.

p.s. Have you marked your calendar for the trip this October to meet some of us at the Reunion in Las Vegas?

[allodwick]

I'm going to try to make it to Las Vegas.

Thanks for the nice comments.

I had 75,000 visitors to my site in 2001. Last Sunday, in spite of or because of the Super Bowl, I had by far the biggest day ever - over 1200 hits in one day. Yesterday I got my 79th country that people have logged on from.

[DickV]

Marty, I read your post about the "S". My Cardiologist recently bought an "S" identical to mine. In the US, is Roche only selling the "S" to Doctors and not individuals? That does not make much sense.

[cookie]

Gina M,
You suppose it could be the beta-blocker? Oh thank goodness! I thought it was because I snack too much or do very little exercising! hehehe And Allowick, if chocolate interferred with coumadin we would be in BIG trouble. I even told my doc that. DO NOT TELL ME I CAN'T HAVE CHOCOLATE!

[RobThatsMe]

Hi Cookie,

The weight gain could most likely be caused by the Beta Blocker because it does slow your heart rate down. that means your metabolism is slower.

Now, there are many good things that beta blockers do for you. So, realizing this, and vanity aside, you need to talk this over with your doctor if you are thinking of getting off them.

Personally, I believe that the benefits I gain from being on the beta blocker far outweigh the weight gain.. No pun intended!

So, what do we do if we stay on the beta blockers.. adjust our food intake. If we burn less calories.. then.. adjust our food intake so that the extra calories don't turn into fat cells. Eat smaller portions, and perhaps a more heart healthy diet.


Anyway.. seems to work for me.

Rob

[Jean]

Gina and Cookie, You reminded me...last week I was on my Weight Watcher's board and a lady wrote in that she was so happy...she had just gone shopping for some new jeans...picked a size 8 and was happy. When she got home, she noticed they were really a size 6...she was REALLY happy. Well that is cool, but I noticed in her weight info she only weighed 7 # more than me and I'm a far piece from a size 8 or 6. Another reader asked her how tall she is and she said 5'11. See I'm not pudgy, I'm just under tall. Oh well back on plan.

[allodwick]

For you tall people, read about Marfan Syndrome. It includes being tall, long arms and legs, long fingers and problems with the aorta. I do not have a place to recommend but you can find some things on the internet and see how many apply to you. There is some speculation that Abraham Lincoln had this and since it was well before the days of heart surgery and valves, John Wilkes Booth could have saved himself the trouble since Lincoln probably did not have long to live anyhow.

About the CoaguChek-S. I was told by someone in the company that when the CoaguChek was developed, (It wasn't Roche in those days) that they based their budget on their previous experience with diabetic glucose meters. It turned out that warfarin-takers called the customer support number so many times more than diabetics that the could not sell the machine for a high enough price. Remember too, there were several models competing in those days and all but ProTime have since vanished.

I received a call the other day for a company doing market research for Bayer diagnostics. They wanted to know what I considered to be the ideal meter. Evidently Bayer is working on something. I guess they never heard of Exanta or they do not think that it is going to sweep the market as fast as Astra Zeneca people think that it is.

[LUVMyBirman]

Cookie.....everything Rob stated and more.

The beta blocker is the culprit for the weight gain. After coming off the Inderal and on the low dose Atenolo....have lost 5 pounds in water. In 4 days. I could not get my ring it fit!
Yes, I feel great on the beta blocker. But when your cholesterol is less than desirable things need to change. My diet was drastically reduced. I do not eat anything high in fat. 1000 calories a day....and nothing was happening.
Slow heart rate = snail pace matabolizium. I was litterally skidding my wheels on my sationery bike. Will meet with the doc again next week. I don't like the way the Atenolo makes me feel.