Living with a CoaguChek

[ClickerTicker]

Have been using a CoaguChek for about 18 months.
Here's a few tips on living with it:
1) Travel as light and small as possible - mine came in a briefcase sized carrier that was complete overkill (I feared someone would mug me for it as they thought I had a laptop inside!). I use a polythene tupperware type food container that is just big enough to hold the machine plus finger-pricker and spare needles. Very robust and fits into your carry-on bag easily.
2) Keep the test strips in the fridge if possible - I'm not really sure of their heat tolerance. Whilst travelling I've used a small stainless steel vacuum flask that I put a few lumps of ice and the strips into. Has worked when left in a car boot (trunk) in 100 plus deg F heat in the Australian bush. Still had icy water in it in the evening. Doesn't seem to bother the airline scanners which I found surprising.
3) Ditch the mains adaptor. The AA batteries last for weeks and can be picked up anywhere.
4) If you take spare strips from two different batches make sure you've got the little chip dongle thingie for each.
5) If the US instruction manuals contain upteen different languages like the European ones, hack off the languages you don't need to save lugging waste paper around.

Your mileage may vary...
Other hints and comments welcome!

 

[lance]

Very useful tips indeed

Very useful tips indeed

Have been using a CoaguChek for about 18 months.
Here's a few tips on living with it:
1) Travel as light and small as possible - mine came in a briefcase sized carrier that was complete overkill (I feared someone would mug me for it as they thought I had a laptop inside!). I use a polythene tupperware type food container that is just big enough to hold the machine plus finger-pricker and spare needles. Very robust and fits into your carry-on bag easily.
2) Keep the test strips in the fridge if possible - I'm not really sure of their heat tolerance. Whilst travelling I've used a small stainless steel vacuum flask that I put a few lumps of ice and the strips into. Has worked when left in a car boot (trunk) in 100 plus deg F heat in the Australian bush. Still had icy water in it in the evening. Doesn't seem to bother the airline scanners which I found surprising.
3) Ditch the mains adaptor. The AA batteries last for weeks and can be picked up anywhere.
4) If you take spare strips from two different batches make sure you've got the little chip dongle thingie for each.
5) If the US instruction manuals contain upteen different languages like the European ones, hack off the languages you don't need to save lugging waste paper around.

Your mileage may vary...
Other hints and comments welcome!

Thanks for the useful tips, I especially liked the one about the vacuum flask with ice--neat idea.

Cheers!

 

[johnM]

Hi ClickerTicker Did you buy any test strips in Oz? I wonder how easily they are obtained - particularly by someone "Travelling"
How do you buy the strips in the UK? I live in Hants myself and an thinking of getting a meter and am inclined to the Hemosense INRatio ( it uses a lower rated test material and self tests at each test) However, getting either strips could prove interesting and in the case of the Hemosense which is very poorly marketed in the UK compared to the Roche - even more so!

 

[Gemma]

Hi John,
The Coaguchek test strips are available on prescription. I have a feeling the INRatio ones have also just been approved. So all you need to do is ask your GP and they'll prescribe them. Easy peasy!
Getting your doctor or clinic to accept that you can self-test/dose and accept your results rather than theirs may prove more of a challenge, but that's a whole other story...
Gemma.

 

[ClickerTicker]

Hi John
I took UK strips with me to Oz using the vacuum flask technique above.
As Gemma points out, the Coaguchek strips are available on prescription in UK (get a season ticket if you haven't got one already). Don't know about other brands.
When I got my Coaguchek, I planned to self-test and then have the dosing done by the coag clinic (Winchester RHCH) - but they have no process in place however. Given this and the difficulty in doing this whilst travelling, I decided to go the whole hog and self-dose as well. Originally brought a dosing calculator program for my Palm handheld, used it a few times and then decided it wasn't rocket science and now do it from experience.
Have never looked back.
BTW, Oz has a good healthcare reciprocal arrangement with UK. Spent a night each in two different hospitals there, including a very comprehensive echo, and claimed all bar about 10 quid back. Just don't (repeat don't) use an ambulance unless you can really have to - these are run privately in Oz and most Aussies have specific insurance to cover it. Cost me (well mostly my travel insurance company) about 300 quid for a short journey in Adelaide...
The coag clinic were "sort of" happy with me self-testing and self-dosing, but I occasionally get some kickback if I forget to give them my last few INR readings and doses when I have a venous sample to check against my meter. I try to have a venous sample done about every three months and self-test at home as close to that sample time as possible. There's never been more than a few percent difference in the readings.
Good luck - Ron

 

[Jamboesque]

Help Please.........

Help Please.........

ClickerTicker,

Alright who’s arm did you twist to get accepted to use the Coagucheck.

I tried via my GP to get one, two years ago and was told no you’re not housebound, you can get to the surgery/clinic and get tested the usual way. My GP is quite receptive to my going down the self testing route, I keep bombarding her with stuff from the net re Near Patient Testing as they seem to call it.

We’re trying again, a refusal this time might get me a bit organised to asking for the medical reasons for the refusal, rather than their operational ones, believe me I can, and do argue the technicalities of testing regimes, after all it is my job.

I did have to get some dental work done that required my INR to be with the therapeutic range, so I had to get tested in the Haematology Dept. of the Edinburgh Royal Infirmary, got speaking to one of the technicians who couldn’t see what the problem was, with regards to self testing (she rightly or wrongly compared it to the early days of self-testing for diabetics).

I have an idea that the reluctance may have more to do with departmental budgets than on medical grounds. If more people went self testing then the demand on the Haematology Dept would decrease requiring a lower budget, smaller empires etc. or am I being too cynical.

Any advice on arguments to use, palms to grease, people to plead with etc.

Thanks

 

[lance]

ClickerTicker,

Alright who’s arm did you twist to get accepted to use the Coagucheck.

I tried via my GP to get one, two years ago and was told no you’re not housebound, you can get to the surgery/clinic and get tested the usual way. My GP is quite receptive to my going down the self testing route, I keep bombarding her with stuff from the net re Near Patient Testing as they seem to call it.

We’re trying again, a refusal this time might get me a bit organised to asking for the medical reasons for the refusal, rather than their operational ones, believe me I can, and do argue the technicalities of testing regimes, after all it is my job.

I did have to get some dental work done that required my INR to be with the therapeutic range, so I had to get tested in the Haematology Dept. of the Edinburgh Royal Infirmary, got speaking to one of the technicians who couldn’t see what the problem was, with regards to self testing (she rightly or wrongly compared it to the early days of self-testing for diabetics).

I have an idea that the reluctance may have more to do with departmental budgets than on medical grounds. If more people went self testing then the demand on the Haematology Dept would decrease requiring a lower budget, smaller empires etc. or am I being too cynical.

Any advice on arguments to use, palms to grease, people to plead with etc.

Thanks

Hello Jumboesque,

Initially my primary care physician would only approve the monitor if there was a vein draw simultaneously--so why have the monitor.

So I hit the internet, learned everything I could, consulted Roche (manufacturer of Coaguchek S) learned where training would take place and when I was ready presented him with the information. You could also consult the medical on-line journals. Get all your facts together and present them in a clear, concise manner.

He was convinced when I told him training would be done in a large Toronto hospital in the anti-coagulation clinic. The costs of the monitor, electronic testing device, test strips and testing fluids were all paid by myself. My insurance wouldn't cover the cost because blood clinics are everywhere.

A venous draw in required every so often to check the accurace of the monitor.

Try not to be cynical--just get informed.

Good luck

 

[Jamboesque]

Lance : Thanks for the swift reply.

As I said my GP (Primary Care Physician) is on my side with the idea for self testing.

It's at the regional health authority level that the problem lies. Trying to convince them that the system is not new, but a relatively mature technology is the hard bit.

The only thing I was cynical about in the post is the suspicion that managers of large departments (medical or otherwise) tend to proctect their budgets like a mama duck with her ducklings.

 

[johnM]

Thanks Ron. It looks as though you had the opportunity to check out the OZ medical system. Some of those Bush hospitals can be unbelievably pleasant after enduring the UK's hospitals - and indeed the UK's health Services in general.
You mention that you now "Self Dose". Who now in the last resort manages your Coagulation - A clinic, (Winchester Hospital) or your GP? I had a word with my GP and she was happy for me to buy a meter - lets hope that she was fully aware of the situation in respect of her Practice and it's "practices". It may be on the cards that Southampton General will impliment a self test system using the Roche Coaguchek - but then something similar has been on their horizons for years!
I would very much like to do just as you are doing Ron - more or less take the whole process into my own hands.

 

[Gemma]

Hi Jamboesque, sounds like you're in a similar position to Jim. The way his INR testing works is this: he goes to his GP's surgery, has a blood sample taken which is then sent to the hospital anti-coagulation clinic for testing along with his yellow booklet. The booklet is then sent back in the post with the test results and date of next test plus any dosage changes in it. They only phone the same day if he needs to make a big change.

He bought a Coaguchek monitor in April 2004. At that time we also informed the anti-coag clinic and his GP - GP said it was a great idea, clinic said that although it was a good idea, they couldn't be held responsible for ironing out any problems he may have with it (which we didn't ask them to do anyway ). Long story short, it all ended in a bit of a mess with the clinic saying the GP's practice wasn't set up for patients to phone in tests, and the GP saying the hospital clinic wasn't set up for patients to home test.

The "compromise" Jim and his GP came to is that Jim tests his own INR at home regularly between clinic tests (which are currently every 12 weeks as it's stable - probably thanks to him self-testing regularly LOL) and if he's ever out of range (which hasn't happened in a long while, touch wood) he has to contact his GP for advice on dosage change or re-testing. Which to me sounds like not the best plan in the world, but at least his GP respects his ability to self-test and respond to the results appropriately. And his GP does give him prescriptions for the test strips.

It really is a postcode lottery. We got some help from AntiCoagulation Europe but unfortunately all the positive literature in the world won't convince a clinic which has been working one way for decades that there's any reason to change their practices for one patient. Maybe it'd be too much work for them to set up a scheme for patients to self-monitor, or maybe they don't have the staff to respond to patients' phone calls when they ring in with their INR results for dosage instructions, or maybe they plain don't trust patients to have the intelligence to work out how to change their own dosage.

Whatever the reason, we decided it was best to leave well alone for now. We're more than likely going to need to move to a different county when we buy a house together anyway, so maybe things will be different then... just not holding my breath

Gemma.

 

[ClickerTicker]

Hi Jamboesque et al.
I guess I pretty much told my GP and the coag clinic at Winchester that I was going to self test - there is no remote dosing on offer from Winchester. I did have a discussion with someone at Southampton General, but that never came to anything. I got into an exhange of letters with the Winchester coag clinic as they thought I was self testing too often - at the time I had just been loaded up with Amiodarone (yuk) and was travelling.
I didn't want my GP to pull the plug on my prescription for the expensive test strips so took the time to explain why I'd tested so often at that time.
I suspect what really clinched it however, was my putting into writing that I was taking primary responsibility for my testing and dosing - on reflection, this is important so everyone knows where they stand.
No problems since, but I do (or should) enclose my most recent test results when I have a venous sample about every three months as a check.
I paid for the Coaguchek myself - Roche had some sort offer out at the time.
I agree with your view that the coag clinic has a vested interest in keeping its "customers".

BTW, Geraldton Hospital was great - very friendly. Local GP sort of doubled as a consultant which was kind of wierd. Even Adelaide General was a big step up from our hospitals - as I had a few venous samples whilst the amiodarone was doing its worst, the cardiologist even gave me his mobile number so I could call in late afternoon for my dose. I called the guy once, from the beach of course, and spoke to a lady that I assumed was his secretary - he obviously overheard the conversation and took my call - turned out he was in the middle of an angiogram on someone and the lady I'd spoken to was his theatre nurse. So much for all the fuss about mobiles and hospitals!

 

[Jamboesque]

Ron,

Thanks for the fulsome reply.

I am now waiting for a reply from my GP re self-testing, and will report when I know anything more.

I agree with your 3 month 'calibration' check with the venous sample, I was thinking I would probably do something similar. I already have a spreadsheet chart showing INR & Warfarin aganist time, so extending the process would not be too taxing.

I do pretty much the same with my Blood Pressure. I had a wee panic situation, due to change of medication, and bought one of these cheap (£80) wrist B P meters from Boots, and every month or so when I get my INR done at the clinic I take the monitor along and check against what the nurse comes up with and is easily well with measurement error.

I'll let you know how I get on.