Living with a Mechanical Heart Valve: Click.Tick.Thump. Love It!

Support Group for Mechanical & Artificial Heart Valve Surgery & Using Warfarin

Anyone had any experience of this INR replacement? My local hospital; The Royal Berkshire, does not support it. This good for me as I travel extensively to places that don't offer INR.

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Dear Nicolae,

Reading your subsequent message it sounds like you may have found a solution to your problem. 

If I can be of further assistance please let me know.

Kind regards, Allison

Roche Diagnostics

There appears to be a little progress with RBH and self testing.

The official position remains that they do not support self testing, but they now will allow me to decide on when I have venous tests, and let me self test and self manage between formal tests.

I have decided to have venous tests every month or so, self test weekly and adjust warfarin doses in between. If I am worried I can have venous tests more often.

This is a big step forward.

James - good news indeed. I hope it goes well for you. My next step is to try and get them to let me self manage / but one step at a time!
Best wishes
Anne

RBH do not like self testing - officially they still refuse to support patients!

If you do self test, they insist on self manage, as they will not accept liability.  They are worried about changing someone's dose, if the self test is wrong.  I did offer to sign an indemnity, but they were not interested.

To be honest, I am very lucky my INR goes up and down a little, and I change my dose +/- 0.25mg a day.  The key is not to chase the INR - so I would not change if high/low just on one week's test, as clearly food and (alcohol) drink has some impact.

 

James

Anne Mason said:

James - good news indeed. I hope it goes well for you. My next step is to try and get them to let me self manage / but one step at a time!
Best wishes
Anne
James - did the RBH always do venous tests to measure your INR or did they use Coaguchek machines in their clinic ?

I am under the anticoagulation clinic at St. George's Hospital and In the 12 months+ post surgery I have never had a venous blood test at the clinic. St. George's uses the professional version of the Coaguchek machine for all its INR outpatient testing so I think that has a lot to do with the fact that they were very supportive of self testing using similar machines - once my machine was calibrated against theirs of course.

If RBH doesn't use the Coaguchek machines themselves then that seems to be one of the reasons for their reluctance to support self testing - I.e. they don't trust it.

To force you to self manage seems a little unfair to me - they have effectively washed their hands of you because they don't want to accept the liability.

At least it means you have less trips to the RBH but once a month still seems quite frequent. I test weekly for my own peace of mind but St. George's generally give me 6 weeks between me having to report in my results. So I call in my results every 6 weeks or sooner if I were to go outside my therapeutic range. In 10 Months of self testing I have only had to do that twice. So far they haven't called me back into the clinic to do their own tests but I presume they will when I get to the anniversary of self testing - December.

RBH do venous tests, and do not support self testing for a very simple reason - if they supported self testing, they would loose revenue.  They are only paid on full tests.  Can understand this position, but where is the patient in this.  I travel a lot (was out of the country for 8 months earlier this  year), so self testing is the only viable option.

 

What I want, is to self test and then have the odd venous test, to check that we are aligned.  They have now agreed to this (reluctantly).

 

It is about liability (they refused to consider me indemifying them) but it is more about money and lack of understanding about patients needs!

hi Guys - been a while since I visited here _ which is a good thing I guess  :o)

25 months since my heart valve replacement and all good - INR relatively stable. I get INR tested by the nurse at my local GP. I have deliberately had a few beers the night before a test was due to judge the impacts and my diet has remained pretty much unchanged. I don’t deliberately stay away from vitK foodstuffs but do most thing in moderation and without any wild fluctuations in habits..

 

Anyway the reason I'm posting here is I am about 18months away from my planned 1 year overland round the world trip and starting to consider options for self-testing.

It has always been the plan to do just that. I had harboured a small hope that the warfarin replacement therapy might have hoved into view, but it’s looking unlikely so it’s back to plan A really.

 

I have very little concerns about travelling through Europe. Warfarin should be readily available or carrying enough to see me through won’t be a problem.

The major issues I think will be Into eastern Europe, Russia, Kazakhstan, Pakistan, India, Nepal, Cambodia, Indonesia..

Australasia, and US, Don’t envisage any issue obtaining warfarin ?

I guess I need to plan for how much I can carry , allowing for any loss, theft, confiscation at borders?

 

Out of the issues that planning such an adventure has raised this is the only one that I have some unanswered concerns about.

 

 

I spoke to my GP before I set off, and he gave me 9 months of Warfarin.  I took lots of 3mg, and a fair amount of 1mg and 0.5mg - as my dosing is pretty steady between 6mg and 7mg, but actually I have been steady on 6.25mg for over a year now.  The first pills I got give I rejected as their "sell by date" was only 3 months, but they got me more with a 2 year life span.  I then reboxed them all, and got about 5-6 strips in each box (to reduce the volume).

I took a doctor's letter and prescription but never got stopped at customs (and I was in the Middle East and flying most weeks).  If you are only on Warfarin I dont suppose there are too many issues, but if you are taking other drugs you may wish to check that they are legal in all the countries you are planning to visit.

Since I was planning to self test, my GP also prescribed me some extra test strips, but Roche can supply them through agents in many parts of the world (I rang them and they got me the contact details of their agent in Dubai - which was were I was based) - as usual Roche's customer support was second to none.

As I have a "season ticket" for my prescriptions the total cost of all this was £0.

GP was very supportive, Roche were very supportive and I had no issues.  I have been to USA and Australia and had no problems there either.

Enjoy planning what sounds like a wonderful trip!

I'm on a steady 6mg  a day - I did cause my INR to drop prior to one test a cuople of months back after a night shift which involved a take away curry as ell my INR was down to 1.9 from a regular 2.5 ish - consequently my dosgae altered which then affected the next test when it went up to nearly 3 ... which meant the doeasge was dropped and i went under again... its ilke balancing a seesaw with a bloody great weigt on the other end sometimes lol

 

However that aside I dont expect it to be an issue and thanks for the response James..

 

I'll report back once I have consulted my doc :o)

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