Warfarin

[Jan]

As you know I had AVR on Jan 2nd (mechanical valve )
when I was sent home on Jan 11th my INR was 2.4 and warfarin dose was 3mg
Iwas tested by my GP on the 14th Jan and the results were 2.4 so the dose was left at 3mg
on Jan 21st I was tested again, the GP sends the sample to the local hospital who does the test then sends the results back to the GP later that day,I was told to phone at 5.45 for the results,
when I did I got the receptionest from HELL
she told me I was too late and to phone back the next day
I tried to explain the situation she told me to phone back at 6pm
when I did she had turned the phones off and all I got was a surgery closed message.
I had no choice but to phone the emergency DR number
I did eventually get my INR which was 2.2 and was told to take 4mg one day and 3mg the next until my next test in a week
Is alternating the dose normal practice

I do not like the GP managimg my Warfarin but until I can get a Hospital appointment I have no choice

As a new warfarin user I am anxious because I do not understand it all
what is worse a lower INR or a higher INR
The surgeon set my range as 2.5 to 3
thanks for listening
Jan

 

[Nancy]

Hi Jan-

Alternating doses are indeed the norm. INRs have a habit of going up and down frequently. It might be something that was eaten, your metabolism, what you did that day, interactions with other meds, etc., etc. Depends on lots of things, and some think, nothing at all. It's the nature of the beast. My husband's been on it for 25 years.

It takes about 3 days for the dose you took today to "register" with your system, so dosages are usually adjusted slowly so you don't have wide swings in the INR.

As long as you are close to your range, I wouldn't worry about it. It's the wide swings either way that need more adjusting.

It doesn't help you to have a snippy telephone operator. What a witch! You should tell the doctor about that interchange. That's not right.

I'm sure allodwick will come along to give you a much better explanation.

 

[Christina]

Hi Jan,

I know what you are going through! I was very anxious the first 10 months as well.
I found it to be such a hassle dealing with the labs here. They would send the results to my doctor, and than I had to wait until they would call me. At times that would take several days, and in the mean time my INR had been low. I asked to be called the same day as my test, but that was wishful thinking.
It got better when I started doing my own testing, and when I fired that jerk of a doctor, and got another one.
I keep my INR under 5. My new doctor agrees with that. He is not afraid of an INR of over 4. He thinks it is better to be a little high than be too low. I can handle a bloody nose, but a blood clot can be fatal. (Read my personal story and see that I lucked out once with a blood clot, don't want another one)
I am on a lot of Coumadin/Warfarin and I have no idea why that is. I am taking 20mg a day, every day, and that keeps me steady.
Remember, this is your body! If they screw up, it will be your chest on the table again, not theirs. You have to be assertive and stand up for what is best for you.

I wish you all the best.

Christina
Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St.Jude's Mechanical
Coumadin 20mg a day.

 

[LUVMyBirman]

Christina had some excellent points~
It has also been noted and proven that a fixed dose of Warfain works better for most. Al.....do you have the article I am referring to? The more you mess around with the dosing....the more it will fluctuate.

At times it may take some individuals 6-12 months until you have it figured out. If your range is 2.5-3.0. Anything in between is acceptable. Anything higher than a 4.0 could potentially be a concern for bleeding. Lower than your 2.5....may have the potential to clot. You will figure out what works best for you in time.

Take a look at the previous post on this site under Coumadin. You may find it helpful.

Also, look into obtaing a Coaguchek S. They are available to you overseas. You can be your our advocate and home test. I love it. Otherwise it was just driving me nuts. Running and, oh yes waiting for those lab results and phone calls that never come. Kind of scary when you are talking about a blood thinner!

 

[Herb M]

My INR fluctuates between about 2.2 and 3.1, and usually my cardiologist does not tell me to adjust the dosage. The one time it hit 3.7 he told me to make an adjustment. So at least my cardiologist is more concerned about high reading than low readings. I have never been asked to increase my doseage, but a couple of times I have been asked to take a half pill on one day of the week and stay on the new doseage as long as my blood tests look ok.

 

[Jan]

Warfarin

Hi Nancy, Christina, Gina and Herb

Thanks for the replies, I now understand a little more,

On Monday I go for an assessment to the cardio rehab and the cardio nurse has said she will try and get me an appointment at the same time for the warfarin clinic in the hospital
I will be much happier if this happens as I think they know more about warrfarin than my GP

I also intend to ask about home testing, all the members who home test seem to be more content

Keep Smiling
Jan

 

[Guest]

Nancy, I wish you could educate everyone about warfarin - you hit it right on the nose.

Gina, I know that a lot of people try to stick with the same dose every day and it is probably best, but I rarely worry about it. In fact, Dr. Jack Ansell, the founder of our professional organization, The Anticoagulation Forum, has put out a dosage calculator that uses doses that vary from day to day. My main concern is people who cannot break the tablets or cannot understand doses that vary from day to day.

Jan, a low INR is more trouble than one that stays under 5.0. I had a statistician examine 2,500 patient visits and we found that there was no additional risk of bleeding if the patient stayed under 5.0. There was additional risk above 5.0 but we could not be very precise in the analysis because I had very few people whose INR went there over the course of a year. Also, as you recover and become more active and eat more normally, you will probably need an increase in your warfarin dose. Do not be alarmed by dosage changes it is the INR which is important, not the dose. Dosage changes should be 10 to 15% up or down. If you look at how much you take over 7 days, then the dosage change is usually equal to about one day's dose.

 

[Nancy]

Pill cutter

Pill cutter

Just wanted to mention and sing the praises of the handy dandy pill cutter which is available in your local pharmacy.

It's hard to cut those little pills even when they're scored.

The pill cutter uses a razor blade in a protective cover to cut those little devils.

So if you have to use a half dose or one and a half dose of your warfarin/Coumadin, it's easy as pie.

 

[Jan]

Warfarin

Hi Al
Thank you very much for the reply,
I think I am on the way to a better understanding of Warfarin,

when I left hospital I was given a little book to keep a record of my INR and dosage,

In the United Kingdom Warfarin comes in the following strength

White 0.5mg
Brown 1 mg
Blue 3 mg
Pink 5 mg

so dose changes should be easy to follow

Nancy,
that little pill cutter sounds really handy.
Bill and I hope to go to Florida early March for Daytonna Bike Week (just to watch ) so we will buy one if we get there

keep Smiling
Jan

 

[Simon Gee]

not all bad!

not all bad!

Hi Jan,

as usual, I'm late coming to this thread but I was disturbed to hear about your experience with your GP, and especially his receptionist.

Following my avr in October 2000 at the Royal Brompton, when I recieved a mechanical valve too, my INR has been managed via my GP's surgery. Blood is collected either by a visiting haematologist or by the practice nurse in the morning and sent to the local hospital for testing. Results are available that evening, but I ususally collect them the next day, unless there is a problem that needs immediate attention, when the practice nurse phones me to advise me on the corrected warfarin dosage.

I'm very happy with this system and regard it as an example of 'best practice'. However, this is a village surgery, with three GPs, and I'm one of a small number of people on anticoagulation therapy, so it should be fairly easy to keep a handle on us individually.

I would certainly report the behaviour of your 'receptionist from hell' to your GP as no-one deserves to be treated in that fashion.

I hope you're starting to feel a lot better now and good luck with the re-hab.

Best regards from Hampshire,

Simon

 

[hensylee]

You surely need to report the unkind treatment you received. There's no excuse for it. This is your life - take charge and tell her boss.

My brother has his blood test taken once a month at a local hospital who reports immediately to brother's cardio office in another city. The same day I get a call from the nurse at the cardio office to change or stay the same and when to get the next test if there are changes. It has taken my brother several months to get on a steady track, but he finally has. At first, the nurse would say something like 'take 2 today, one tomorrow, skip next and back to one/day'. It was confusing but apparently worked.

Seems, as you say, members are much more confident taking their own at home. Hope you can get your own soon.

God bless

 

[Jan]

Hi everyone,
I spoke too the reception manager at my doctors and she said she will look into what happened and was most apologetic about the matter.

The good news is on Monday I had an appointment at the Anticoagulant Clinic at the local Hospital
The Dr was very nice and explained things too me, she also said 2.5 to 3.0 was a little low and that she would like me to be 3.5

I have to go back on Friday for another blood test
and I can phone for the results later in the day and as a back up they send them by post so you get them next day,

I am much happier with this I feel I am being treated by people who understand anticoagulation

Today I did my first cardio rehab session and found it enjoyable I am glad I signed up for it as I think it will be a benefit for me
along with the exercise there is also healthcare people giving talks and advice on medication dietery needs and stress
avoidence.

I am feeling better each day,

we are off to Scotland for a few days, so I am looking forward to that
Keep smiling
Jan

 

[Peachy]

Hi Jan

Glad you got your INR sorted. I have to take Warfarin for 6 weeks and then I come off it all being well. I have not had any problems. The District Nurse comes to the house and takes my blood once a week. The Health Centre phone that day or the next day and tell me what my dose is. They have been keeping me at the same dose for a week at a time. I am not going to any rehab classes as the only ones they do are for bypass patients. Not sure why this is. Anyway I am getting out most days and walking and am getting stronger each day. My aches and pains are going away and I have been doing without the paracetamols. All I am taking at the moment is the Warfarin. I also have to wear these horrible antiembolism pop socks for 6 weeks. Even my scar doesn't look too bad and is healing quick. Where abouts in Scotland are you visiting? Take care and enjoy your break

 

[cookie]

coumadin levels

coumadin levels

Hi Everyone!
I am confused! Everyone seems to have different INR levels according to different Docs. Isn't there a standard that should be followed for certain procedures such as Aortic valve replacement or Mitral valve replacement? My clinician says I am fine between 2.5 and 3.0. I had aortic valve replacement. Now here is another patient that says her Doc wants her at 3.5. Why the differences in opinion? Maybe Allowick would please reply.

 

[RobThatsMe]

Hi,

There are standard guideline ranges. You can check on the St Judes web site for some established standards. I have posted the link on here several times. If you can't find it, then Hank has the link to their site on the VR.com home page links.

Let me know if you can't find it.

Rob

 

[LUVMyBirman]

Hi Cookie

Generally it is 2.5-3.0 for Aortic. 3.0-3.5 Mitral.

Occasionally doctors like their patients at the higher end of the therapeutic range to avoid complications. Which I wholeheartedly agree with.

Regardless of the type of prothesis, and from the graphs that I have seen......looks like we are all better served at the higher end 3.5. It's just a matter of getting the doc to agree

 

[Herb M]

I just extracted the following from the St. Jude web page. It seems to explain why there is a variation in acceptable INR ranges.

Anticoagulants
Your physician may prescribe an anticoagulant medication ("blood thinner") to prevent blood clots from forming on or around your St. Jude Medical® mechanical heart valve. The level of anticoagulation will be closely monitored by blood tests, which include a PT (prothrombin) and INR (international normalized ratio). These tests reveal how anticoagulated ("thin") your blood is, and your dosage will be adjusted (higher or lower) as needed. Your physician will determine the level of anticoagulant that is right for you based on the guidelines and your medical situation.

According to the American College of Cardiology/American Heart Association Guidelines for the Management of Patients With Prosthetic Heart Valves1, the following International Normalized Ratios (INR) are recommended for bileaflet valves:

Indication INR
First 3 months after valve replacement 2.5-3.5


>3 months after valve replacement:
Aortic Valve Replacement (AVR) 2.0-3.0
AVR with risk factors* 2.5-3.5
Mitral Valve Replacement 2.5-3.5


*Risk factors: Atrial fibrillation, Left Ventricular dysfunction, previous thromboembolism, and hypercoagulable condition.

For complete INR Guidelines, please see the American Heart Association

 

[Jan]

Hi Peachy
glad to hear you are doing well, my aches and pains are dissappearing, and I am feeling better each day,
At the cardio rehab class there are both Valve and Bypass paitents,all of them are older than I, but it was enjoyable.

Friday morning I am going to get my hair done and about lunch time we are off to Dundee to spend the night with a good friend of ours, the on Saturday we are off down to Sterling,
where the president of the Caladonia Harley Club is having a 50th birthday party at some yacht club which is near ,to the Rugby club. we are booked into a B&B then it,s home on Sunday

It should be a good weekend we always enjoy Sotland

I hope you have a nice weekend

keep Smiling

Jan

 

[Guest]

The standards are set by the American College of Chest Physicians. They have a committee that meets every two years and reviews what has been published sine the last meeting about various aspects of anticoagulation.

The INR standards are this:
For just about everyone EXCEPT atrificial mechanical valve patients the levels are 2.0 to 3.0.
For mechanical valves the level is 2.5 to 3.5 UNLESS the person has an aortic valve and no further risk factors then they could be at 2.0 to 3.0. We did a discussion about this some time in the past MATXR asked me to comment.

These are the standards by which a doctor could be judged in a malpractice case. (Oddly enough, I just read this legal part over today because of a question raised at work.) To deviate from this a physician should have a good reason and is should be clearly documented in the person's medical record. Even if it is documented in the doctor's office records, it should be stated again if the person is hospitalized. A doctor will seldom lose a malpractice case if they clearly state their reasoning for deviating from standrads of care. However, they will rarely be able to defend themselves if they do not state their reasoning - after the fact doesn't carry much weight with a jury.

An example: I came in one Monday after having been off for the weekend, and found that one of my valve patients was admitted on Friday night and had not been given warfarin or heparin. This causes bells to go off in my head. When I read her chart, she had been admitted for encephalitis and had minor bleeding into her brain. She was off all anticoagulants for almost 3 weeks. However, there were almost daily notations in the chart about consultations with neurologists, MRIs, assessments of strength etc to justify taking the risk of a clot vs. causing more bleeding. She recovered almost fully, but had there been a malpractice case, it would have been extremely difficult to find an expert witness to go against all of this reasoning.

I consulted on another case where a woman hemorrhaged into her eye and went blind with a elevated INR. The doctor's nurse made a notation on the lab slip that the woman reported an eye hemorrhage, but she went on manipulating the warfarin dose for four months before the patient complained to the doctor about the problem. The docotr then wrote a letter stating that he just found out that day what had happened. Was there a lawsuit? NO!!! Why not??? The woman who went blind was the wife of a doctor!!! He would rather his wife was blind than sue a colleague. Would you want to be a doctor's wife???

 

[Peachy]

Jan, I am from Dundee originally and now stay near Stirling. You are probably going to the Riverside Yacht Club. You could have popped in for a cuppa if you had time as we are only 20 minutes away. Unfortunately we are heading south to Somerset on Friday. We will probably pass on the motorway as we are coming home on Sunday also. You could always give me a shout next time you are heading north if you are going to be near Stirling. Have fun and don't overwork that new heart valve.

I am on Warfarin for 6 weeks because I have a tissue valve. My INR seems to be fluctuating quite a bit. I started off on 1mg then 3mg then 4mg for a week. When I got my blood taken on Thursday they phoned me in the afternoon and told me to stop the Warfarin and start again on Sunday on 3mg. The nurse will come and see me on Monday for a blood test. They didn't say what my INR was but I take it that it is a bit on the high side. They normally don't phone me with my dosage until the next day. They'll probably get it steady just I have to come off it.