Should I self test

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Paul1972

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Hi Pellicle, I was surprised that my gp didn’t know about self testing,I’m thinking of changing my surgery ,I will try and find a gp that will go on aboard along side the anticoagulation clinic.Ive lost faith in my surgery I went countless times over the last few years only for them to say I’m fine , in the end by chance one doctor sent me for an echogram to discover I had a 8.2cm aortic anurysam
 

pellicle

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Paul1972;n882104 said:
.I have now purchased a testing machine and strips and I’m going to start using it for peace of mind .
paul, just some further information, forgive me if I'm mentioning things you are already across or are covered by by your health care in the UK (Australia doesn't cover any of it).

Here in Europe (I'm presently in Finland) I buy strips off this mob in Germany

https://www.doccheckshop.eu/en/oxid-...tstreifen.html

they have been good to deal with and very good delivery.

I can only stress that you should read the documentation when you get the Coagucheck (and often it comes with a DVD too). Wasting a strip (which will happen) is annoying and disheartening. Quick points:
  • get a "full hanging drop of blood"
  • follow the 15 second rule (discussed in my blog post and again here
  • if your fingers are cold to the touch (and your english house isn't warm) it may be that you need to put on some gloves for a bit to warm up (going for a walk helps) AND suppliment it with my rubber band technique that concentrates some blood down in the finger tip
  • lance the side not the pad ... lancing will eventually damage nerves (ask a diabetic) and so on the side of the finger is better from that perspective.
a good post from here (which includes my video and a few posts down the spot on the side I lance)
http://www.valvereplacement.org/foru...277#post875277

best wishes

PS: I also found this if you hadn't found it already:
http://www.coaguchek.co.uk/coaguchek_patient/en_GB/home/products/buying_your_coaguchek.html

The CoaguChek Care Line is a UK-based operation and was set up to handle enquiries relating to the CoaguChek INRange meter.

When testing warfarin at home, we will support you through every step of your self-monitoring, please contact us
  • If you are already self-monitoring your INR and have questions
  • If you are actively seeking more information about the benefits of self-monitoring.
  • When a CoaguChek is purchased, the CoaguChek Care Line takes calls to guide the end user step-by-step through meter set-up, performing an INR test, and answer any specific questions.
This service helps you get your meter up and running properly and provides an opportunity for Roche to help give you confidence in self-monitoring.
 
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Paul1972

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Hi Pellicle ,I appreciate all the info you have sent me things are a lot
clearer now, Hopfully I will soon be up and running with a coaguchek machine and with the help of a good gp. Regards Paul
 

pellicle

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Paul1972;n882110 said:
.Ive lost faith in my surgery I went countless times over the last few years only for them to say I’m fine , in the end by chance one doctor sent me for an echogram to discover I had a 8.2cm aortic anurysam
wow, that's really close. So glad you're still with us mate :)
 

Warrick

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Hi not much I can add to all the great replies, I'm in NZ and it seems self testers and self managers are like a whisper on the wind

I've yet to hear of let alone meet another self manager here... and I'm not sure why that is when its so easy and makes warfarin like brushing your teeth
( there are around 38,000 warfarin users for the whole country here and about 5,000 of them have valves)

I find keeping good records even if you aren't self managing (yet) sets you up down the track, then you learn what dosing does what for your body, and how much it alters your INR , and you start to realise early on when who ever is looking after your management gives you poor dosing advice

I've found my dosing patterns when I need to make an adjustment predictable and repeatable and with weekly testing its no worries

Good on you for buying your own meter (I was lucky enough to get mine gratis from the valve importer) your 75% there already :Face-Smile-Big:
 

pellicle

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Warrick;n882123 said:
...
I've yet to hear of let alone meet another self manager here... and I'm not sure why that is when its so easy and makes warfarin like brushing your teeth
which curiously is something my Father In Law avoids and brags about it ...

(I was lucky enough to get mine gratis from the valve importer)
which valve what this? I got a similar deal from my valve (had no idea it was the case till it turned up on my door) My valve is ATS ... I mentioned it to my surgeon and he muttered something like "you wouldn't have got that from On-X"... They don't seem to have won his favor.
 
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Warrick

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pellicle;n882124 said:
which curiously is something my Father In Law avoids and brags about it ...

..

which valve what this? I got a similar deal from my valve (had no idea it was the case till it turned up on my door) My valve is ATS ... I mentioned it to my surgeon and he muttered something like "you wouldn't have got that from On-X"... They don't seem to have won his favor.
I had to read that first line twice, second time ended in a chuckle

That was St Jude, the NZ importer for St Jude is a company called Rem Systems (tied up with Roche I think) who supply anything and everything medical and veterinary, and I think a bit of agricultural instrumentation as well
I'm sure it wasn't out of the goodness of their hearts tho..
 

Paul1972

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Hi Warrick, Thanks for your reply.I have a on-x valve so that’s why I didn’t get a free testing machine :). I’m gunna start self testing weekly from now on with my new machine,Hopfully my inr won’t go to far out of range and I can stay on the same dosage.Its been in range the last twice with lab testing but that was monthly,they now want me testing every six weeks that’s why I have brought a machine I don’t want to wait that long it would drive me crazy not knowing what my inr was :) Kind Regards Paul1972
 

LondonAndy

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Hi Paul

I'm in UK too, as you can probably guess from my profile name ;) I have been self-testing since a few weeks after my AVR surgery in 2014,buying my own meter and then getting the test strips on prescription. If you experience any resistance to support from either your GP or anti-coagulation clinic, refer them to the report by the National Institute of Health and Care Excellence, which by coincidence was published the same month I had my surgery. They set "best practice" standards for the NHS and came out strongly in favour of the CoaguCheck XS. Weekly self testing has been shown to have a massive benefit, both for us as patients and the NHS in reduced costs - it really is a no brainer.

If useful, I prepared a note to talk to my doc about doing this - click here for a copy - which summarises some of the key points from the NICE report, both in "medical speak" and plain English. I turned out not to need this note - both my GP and clinic are very supportive. I now do my own test weekly, all the time, and email an INR reading whenever the clinic wants, which is mostly every 6 weeks, or more frequently if they wish, and I attend the clinic once every 6 months for a lab test to check my meter is still within the expected range. By managing my own Inr I have been 100% in range for the last year or more.

I am happy to chat more if needed - feel free to message me. It is soooo great not to be tied to attending the clinics too - I take my meter on holiday of course, as different diets usually mean I need to adjust my dose. I don't actually tell my clinic when I do adjust the warfarin dose, unless I don't understand why or the reading change is dramatic, and then I give them a call or go in. I am an insulin dependent diabetic, and so am used to adjusting insulin doses after doing a finger-prick test, and although adjusting warfarin is a bit trickier because of the time lag in seeing the effect of the change, because you have your own meter you can make a small change, usually temporary I find, and see the effect by testing more frequently, eg every three days, until things settle down. You are the one with most to lose if out of range, and I like to take responsibility for my own health.

One final point - I much prefer a finger-prick test to a blood draw - my veins nearly collapsed when I had my surgery through frequent tests, and they ended up taking blood from my foot!

It seems I can only link to one document per post, so I will add another post with a link to the full NICE report.
 
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LondonAndy

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And here's a link to the NICE report. I am surprised your clinic is only now doing trials, though perhaps they feel threatened with cuts if many of their patients do this. If so that would be very short-sighted.
 

Paul1972

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Good morning Andy
Thank you for taking the time to contact me , your links will be very useful I am going to arrange an appointment with my GP to discuss my needs further .
It is very encouraging to hear that a Uk based patient is able to self test officiallly so I will be on the case. Also being in contact with people like yourself going through the same on this forum has helped me so much with my confidence .
Thanks again
Paul
 

Jamey T

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Paul,
I have been very busy leading a normal life the last month or so, and sometimes that alone makes me smile.

I am also a self tester/self doser. You don't have to tell your clinic you are self testing, it can be for your own peace of mind. My new GP is a young guy, and I told him that I self test, and while he is unsure how to take that, since I am paying for everything out of my own pocket, there isn't a lot he can say.

If you have a self test that is quite a ways off from your "normal range" then you can always go and get tested to verify it.

If you ever want some advice on self testing, I personally always pay attention to anything Dick or Pellicle say. But that is just my opinion. ;)
 

Paul1972

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Thanks Jamie for your input, good to here you are doing well ,I self test weekly now and haven’t been out of range so far so I haven’t had to think about changing my dose . I haven’t had a reply from my clinic yet about self testing so I’m still having lab tests every six weeks. In the mean time I’m hoping I don’t go out of range as I’m still not 100% sure about dosing changes but I know if I’m stuck for advice I can always ask for advice of Pellicle or Dick as i also value there comments I see on this forum . Regards Paul .
 

Warrick

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Mate just remember we self testers/mangers (including Pellicle and Dick :)) started out just like you, and with a bit of learning you'll be away racing
 

Paul1972

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Hi Warrick , Thanks for the encouragement mate I’m sure as time goes by everything will come easy to manage.Reading posts on this great forum has defiantly built up my confidence, I must admit before I found this website I was struggling to cope with everyhing, having two surgeries in one year without even knowing I had my condition after finding it by chance was a lot to digest, I know how fortunate I have been to get it all sorted now and I’m starting to look forward towards a healthy future. Hope you are doing well . Kind Regards Paul .:)
 

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