UK INR testing

[tomtom]

From what I've read on this forum, many of you in the USA test your own INR levels. Is that the norm for you? Here in the UK the norm is to have it tested by a nurse or doc, who then communicates the result to you, tells you of any change in dosage and tells you how long to wait till next testing. Self-testing is available but it's not publicised and I don't think many people do it.

 

[Ross]

Hi tomtom, it's the same here. We all go to the lab to have it checked, even those with home monitors. The advantage to the home monitoring is that you can more closely regulate your INR where us people that have to go every month or so to the lab, may show a huge fluctuation and require dosage adjustments and closer follow up testing. For the most part, we operate the same way as you do over there.

 

[Rain]

3.0 = avocados, beer & sunshine

3.0 = avocados, beer & sunshine

Hey Ross,

Another advantage is being able to monitor our INR when we are away from home. I tested with my machine in Mexico and got a perfect 3.0......... I think that?s the first time it?s ever been right on the dot!!!!!!

It?s taken nearly three years, but I have finally found the perfect combination for a perfect INR ......lots of sunshine, coronas and avocados!

Maybe we should have our next reunion in Mazatlan!

 

[RobThatsMe]

Hi Rain,

Whew... The home testing unit is great when traveling. I take mine with me often, and it sure provides me with peace of mind. No more getting in touch with my doctor and having him fax orders to the local hospital, then waiting until they fax the results back to him, and then wait for his phone call. YEY!!!!

Another major benefit is that the simple finger test saves the veins in the arms! No more scar tissue buildup around the ol' veins. It was getting crazy when the nurses would try and "stick" me and had trouble getting a good draw.

The home testing units are so convienient, that testing once a week is a breeze, and provides us with the ability to closely monitor, and CONTROL any major swings in INR levels before they become critical.

Have to admit, I do miss visiting with the nurses when I used to go to the hospital lab for testing. But then, guess that's a "guy" thing.. hehehehe

It is Friday yet?

Rob

 

[Jan]

UK INR Testing

UK INR Testing

tomtom

Home testing is something I would like too do

I asked my GP and was told that our Area Health Authority are trying too set up a clinic where our tests will be done by the Protime type machine

I think that is the first step for us who live in the Uk

no doubt we would have too buy our own machines,

At the momment I am tested every 4/5 weeks

I would like too test weekly and if I had a machine I could do this

I think a month is too long between tests

How often do you test?

I will let you know if it happens

Jan

 

[Guest]

There are already some anticoagulation specialty clinics in the UK.

Click on http://www.acforum.org/locations_europe_uk.asp
to find if there is one near you.

 

[Simon Gee]

home testing

home testing

Hi tomtom,

home testing is certainly an option in the UK, although you would have to buy your own unit unless your local health trust was very generous. They are around £300-400 to buy with an annual running cost of about £100. I receive the British CardiacPatients Association magazine and there's often an advert from the makers of one of the units in there - but I can't remember which one!

I looked at the option when I had my AVR, but decided to see how things went being tested through the NHS. After two years, I see no reason to change. I'm tested every eight weeks and there is not enough fluctuation in my INR to worry me unduly - it's usually between 2.7 and 3.3. My blood is drawn in the village health centre and sent to the local hospital. If there is a problem, I would get a phone call that evening with an amended dosage, but I pick the results up the next day and then have to remember to make the next appointment! I'm happy with this, but we're all different and some people on this site have major problems with unstable INRs - I'm just lucky.

Simon

 

[tomtom]

Jan and Simon Gee (and everyone else)

Interesting to see some other UK perspectives. My situation is that I get tested by the practice nurse at my local GP's and the result is notified to me either the next or same day. When I'm "stable" (which is most of the time) I'm at six weekly intervals but if there's a fluctuation I'm asked to re-test sooner. But they don't mind if I feel like an extra test, e.g. I had one done this morning (two weeks early) just in case all the bad living I did over the festive period had had an effect on the INR. They also give me extra tests if I ever go on other medication. My norm for the last wee while has been 4.5mg.

I don't really fancy the home testing for a couple of reasons. I like the security of the regular contact with my local health professionals - I'd be interested to hear what back up other UK patients have. In my case the cardiologist told me six months after surgery that I needn't ever return unless I had symptoms, which was great news but a bit of a shock to the system after nearly forty years of check-up visits so I like the "security blanket" offered by the GP's practice. I also think that I'd become really neurotic if I home tested - I'd be checking constantly!

I can't remember the details but The Herald (Glasgow based) newspaper had an article about home testing about a month ago and I'm sure they said that it would soon be available free (maybe just in Scotland, I'm not sure).

Good luck to everyone still ticking out there!

 

[Jan]

UK home Testing

UK home Testing

I go too our local hospital for my test,and if stable my results are sent by post the next day or so
If I need too make changes they contact me by phone.

I would like too home test just to keep track of my INR I do not think I would like too adjust my dose myself, I do not think I would have the confidence

It was interesting too read that Simon and Tomtom only test every 7/8 weeks and are content
I test 4/5 weeks and too be honest it worries me being so long between tests hence If I had a machine I could test weekly and I feel that would give me peace of mind

I worry about low INR as you have no indication that it is low.

Since my surgery I have seen the Surgeon twice and the Cardiologist twice, I too would feel a little worried if no one was checking me, as you say it is security

Take care

Jan

 

[Simon Gee]

Happy as I am

Happy as I am

Hi Tomtom and Jan,

I'm surprised to hear that you have no regular check ups Tomtom! I have an annual appointment with my cardiologist (actually a member of his team) and I would not be satisifed with anything less than this. I too want the peace of mind that comes with having a professional check my heart out, even if it's only once a year.

Jan - I appreciate your concern about frequency of INR testing, but I'm very comfortable with 8 weeks. My level remains fairly constant, it might be all over the place in the intervening period, but I haven't had any problems and so I'm happy! I quickly resolved myself to the idea of taking warfarin for the rest of my life and so I don't worry about it not too much. I'm more worried about the drive to work - 60 miles on the M4 and M25 with all those other idiots!!

Keep healthy,

Simon

 

[tomtom]

Hi Simon

Interesting to note the different policies in different cardiology units (mine is/was the Royal Infirmary in Edinburgh). In most respects it doesn't bother me that I no longer have regular heart checks since I feel fit and well. Can I ask if, like me, you had a "straightforward" and successful AVR and are now under no restrictions other than those imposed by warfarin usage?

Incidentally during the festive period I pretty much abandoned attempts at healthy eating and certainly increased my alcohol intake yet my INR has gone down quite a bit. There's no logic to this warfarin malarkey!

 

[Marty]

Home testing not for everybody

Home testing not for everybody

Home testing is not for everybody-thats for sure.
Many patients like the collegiality of a good clinic like the one Al Lodwick runs in Colorado. Some like me hated going to the lab and getting a vein stick and then waiting for the call from the doctors office that sometimes never came and the cockamamie dosage adjustments by the nurse, etc. I havn't been to the lab in 4 years and like it this way. Just me and my Coaguchek. I have a friend who is CIA( with an aortic St. Jude mechanical)and assigned last year to Afghanistan. He liked the lab, but before he left; his cardiologist( also mine) and I gave him a crash Coaguchek course. He did fine. Tested himself every 2 weeks while over there-no clots, no bleeds, and thats a tough neighborhood.

 

[Granbonny]

How often to test?

How often to test?

Using Simon as an example who only test once every 8 weeks....I wonder if your INR range is like the saying..If a tree falls in the forest and there is no one there to hear it. does it make a noise. As if, we will never know what our INR is ..when we don't test..

 

[Simon Gee]

To Tomtom and Bonnie

To Tomtom and Bonnie

Tomtom - yes, my AVR was straightforward. It was at the Royal Brompton Hospital in London in Oct 2000, but my cardiologist is based at the North Hampshire Hospital in Basingstoke. I had a congenital bicuspid valve and had had no symptoms prior to AVR - perhaps that made a difference. I was also under 40 when it was done (only just!), so maybe these factors have a bearing?

Bonnie - I hope the reference to wood had nothing to do with my mental ability!!! You're right, of course, but I remain happy that after more than two years of INR testing, my level remains fairly constant. I had a hernia repaired in 11/01, which involved injecting heparin both pre and post surgery. Once I was back on warfarin, I was tested weekly, then two-weekly etc back up to eight weeks, and the results were very stable. So I don't worry. Maybe I'm like an ostrich, sticking my wooden head in the sand, but I like it that way!!!

Best regards to all

Simon

 

[tomtom]

Hi Simon

Interesting to compare notes here. Prior to stumbling on this site I had very few opportunities to share experiences with others.

Our histories are very similar. Iwas diagnosed with mild aortic stenosis as a child and had increasingly frequent checkups as I got older. At 19 they told me to come back in ten years, at 29 five years etc. I had no symptoms whatsoever and played squash, for example, with my cardiologist's consent. Then at the age of 42 (three and a half years ago) I collapsed on the squash court and was probably lucky to survive. Still at least I was oblivious to it all at the time and was in a better state than my poor opponent who called the ambulance and phoned my wife! Tests followed, I put away my squash racket, and seven months later they did the AVR, a couple of months after my 43rd birthday. It was a rough ride at times but the good old NHS pulled me through!

Cheers

 

[Granbonny]

Sorry Simon

Sorry Simon

I chose the wrong word. I should have said.. I wonder if OUR inr is like the saying..(Not your. meaning you)...In other words..what we don't know ..won't hurt us.... Bonnie

 

[Simon Gee]

Hey Bonnie

Hey Bonnie

no offence taken - and I heartily agree with you!!

Best regards,

Simon