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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Colin - not sure what you mean by INR replacement ? I use the Coaguchek XS machine to self test and report my results in to my clinic by phone. It really does free you up from having to go to the coag clinic.

If you are interested in any more info let me know.

Hi John,

Yes, that is what I want to do. Did you buy it directly from the manufacturer? Any idea how accurate it is?

Thanks



John French said:

Colin - not sure what you mean by INR replacement ? I use the Coaguchek XS machine to self test and report my results in to my clinic by phone. It really does free you up from having to go to the coag clinic.

If you are interested in any more info let me know.
Colin - yes I purchased it directly from the Roche website as it is only £299, which is much cheaper than buying it through Amazon or similar.

Luckily my local clinic support home testing so I had to get my machine calibrated against their machine before I could call in my results. It was 0.1 different from theirs but then they use a Coaguchek machine themselves - just a slightly different model - so was unlikely to be far out.

I get the test strips on prescription as well - they are pretty expensive if you pay full price form them - around £60 for 24 strips.

Colin, I too am a Royal Berks patient, and have been fightening them for 6 years.  The reason they do not support Coaguchek patients is NOT clinical, it is simply that if they do, they will not get as much money from the NHS.

 

I have written endlessly to the Clinical Director and CEO of the hospital, and they cannot provide a good clinical reason at all.  Having said that, I am a mobilised Naval Reservist, currently 5 months into a 7 month deployment with the Navy in the Middle East.  I am self testing with my Coaguchek and have been since I arrived here in December.  I test weekly, and have had no problems.  Sometimes my RNR has gone a little high, and once a little low, but I can honestly say that this because I have not eaten my normal veg diet as getting veggies is sometimes difficult.  But I have never (keep you fingers crossed 7 weeks to go) lost control.

 

The Royal Berks is in the middle ages, ignores the needs of the patients, and the sooner they arrive in the 21st Century, the better.  My advice would be to get an XS, make sure you know how to use it, and have a few venous tests, and see what you get on the XS (my XS reads 0.2 higher than the Royal Berks tests) and then tell them when you are travelling and off you go.

 

As soon as I get back from Theatre I will be home for 2 weeks (when I will have a venous test) and then am off to Australia for 6 weeks leave. 

 

Join the club and ask RBS for a good clincal reason, and why they will not accept that patients need the flexibility that self testing gives - and a better patient experince, lower mortality etc


Let me know how you get on.

Dear all,

I work for Roche, the company who manufacture the CoaguChek XS.  The CoaguChek has been available for many years in the UK, but still awareness levels are still very low.

 

Back in December a clinical study was published in The Lancet, "Self-monitoring of oral anticoagulation: systematic review and meta-analysis of individual patient data", authors - Carl Heneghan, Alison Ward, Rafael Perera, and The Self-Monitoring Trialist Collaboration

Findings are based on data from 6417 participants.  They reported a significant reduction in thromboembolic events in the self monitoring group.  Patients younger than 55 years showed a striking reduction in thrombotic events, as did those with a mechanical heart valve.

Self monitoring/managing is a safe option for suitable patients of all ages.  Patients should be offered the option to self-manage their disease with suitable healthcare support as a back-up.

Uptake of self-testing and self-management has remained inconsistent in and between countries, despite good evidence of their effectiveness and guidelines encouraging patients to discuss this option with clinical staff.

In patients younger than 55 years of age, two-thirds reduction in thromboembolic events translated into 21 participants self-monitoring for 1 year to prevent one thromboembolic event.

For patients with a mechanical heart valve, a 50% decrease in thromboembolic events meant that the number needed to undertake self-monitoring to prevent one event was 55 after 1 year and 24 over 5 years. By comparison, 63 patients are needed to prevent one heart attack with daily statin therapy over 5 years.

 

I have asked one of my team to visit Royal Berks Hospital and explain these latest findings to them. 

Please let me know how you get on speaking to your healthcare provider.

Best regards,

Allison

Alison

When I get back from the sand I intend to write to the RBH again, could you post the link to the Lancet report, or send me a copy at jslcohen@gmail.com?

 

This report only confirms what has been published in the past, and indeed what the Health Sec said.

 

At the RBH the anti-c nurses understand the benefits, but the consultants either won't or can't.

 

The are clincial benefits, quality of life benefits and (I believe) cost benefits to the NHS.  Somehow someone needs to make sure that the RBH understands that in the 21st Century Drs have to do what the patient wants, and not dictate what they consider as best (and in this case they are wrong).
 
Allison Rossiter said:

Dear all,

I work for Roche, the company who manufacture the CoaguChek XS.  The CoaguChek has been available for many years in the UK, but still awareness levels are still very low.

 

Back in December a clinical study was published in The Lancet, "Self-monitoring of oral anticoagulation: systematic review and meta-analysis of individual patient data", authors - Carl Heneghan, Alison Ward, Rafael Perera, and The Self-Monitoring Trialist Collaboration

Findings are based on data from 6417 participants.  They reported a significant reduction in thromboembolic events in the self monitoring group.  Patients younger than 55 years showed a striking reduction in thrombotic events, as did those with a mechanical heart valve.

Self monitoring/managing is a safe option for suitable patients of all ages.  Patients should be offered the option to self-manage their disease with suitable healthcare support as a back-up.

Uptake of self-testing and self-management has remained inconsistent in and between countries, despite good evidence of their effectiveness and guidelines encouraging patients to discuss this option with clinical staff.

In patients younger than 55 years of age, two-thirds reduction in thromboembolic events translated into 21 participants self-monitoring for 1 year to prevent one thromboembolic event.

For patients with a mechanical heart valve, a 50% decrease in thromboembolic events meant that the number needed to undertake self-monitoring to prevent one event was 55 after 1 year and 24 over 5 years. By comparison, 63 patients are needed to prevent one heart attack with daily statin therapy over 5 years.

 

I have asked one of my team to visit Royal Berks Hospital and explain these latest findings to them. 

Please let me know how you get on speaking to your healthcare provider.

Best regards,

Allison

Hi James,

I have emailed you a copy.

Best regards, Allison

I am currenlty looking into self testing..but having asked the warfarin nurse atthe hospital..she didn't know anything about it! Do I have to ask my GP about self testing in order to get the test strips on prescription? Currently the practice nurse at my GPs takes blood and then sends results through to local INR clinic in Carmarthen, they then phone me with my dosage. I know I have oly just started warfarin but I want to be as independant as possible, hoping to return to my sea kayaking expeditions as soon as....generally not too many GP surgeries where I go! Any advice greatly appreciated.

Hi Neil,

Please can you tell me which hospital you attend and I will speak to one of the local account specialists about the local services in your area. 

If you call our free phone number we can send you some CoaguChek information: 0808 100 7666.

Best regards, Allison

Hi All,

I use a CoaguChek XS, bought it directly from Roche and get the Strips on Prescription. It is very easy to use and very comforting, in that, you can test anywhere & any time you want and you get your INR value within a few minutes. I recently went on holiday for a week and was able to self test to ensure all was well.

I had to go to my Drs to get INR tests for many weeks before they were OK with me now self testing, this was to allow us to calibrate my CoaguChek XS & the Dr's test method(don't know method but know it is not CoaguChek, they send it away for testing which means test doesn't get done until the next day). My CoaguChek XS is typically 0.3 to 0.5 higher than my Dr's method, good enough agreement for us. I believe the plan going forward is my Drs test me every other week and they will allow me to self test the in between week then moving to monthly Drs test.....

For me the purchase of the CoaguChek was not necessarily to eliminate/reduce the visits to the Drs (as I needed these to calibrate anyway) but more to give me the freedom for years to come, to test whenever I wanted and ability to travel ( the kit is very small and extremely portable).

Hope this was of assistance.
Best regards

Martina

Hello Martina,

Thanks for the info. I guess you still have to phone in the results to recieve your dosage?

Best wishes,

Neil

Dear Neil,

 

There are two models of care: Self testing and self managing.

Self testing is where you test your blood and contact (call/visit/text/email) your Dr/nurse with the result and they advise you if you need to alter your warfarin.

Self managing is where you test your blood yourself and alter your own dose of warfarin depending onthe result.

Of course both require some training and agreement with your Dr/nurse.

Hope this helps.

Best regrads, Allison

 

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