hi everyone, I’m writing because I feel a bit frustrated and anxious, I have the the opportunity to be able to do a tour of u k on a caravan trip, will last about three months ( I know I’m very lucky). The thing is I can get my prescription on route at different chemists, but how will I get my warfarin checked? Spoke to my warfarin nurse about self testing , I am very stable and have been for around 2 years, but she was very dismissive, in fact quite unhelpful, saying they wouldn’t allow me to do that as it wasn’t their policy, and I would have to find a clinic or doctors and sign on as a temporary patient, I had to wait 3 weeks longer than I should as they were to short staffed to fit me in, so how would another surgery be any better, I suffer with severe anxiety and it has taken a lot of courage to even consider this trip , I don’t want to let my husband down , but the whole thing is becoming a nightmare, after all that I just wondered if anyone else does self testing , any advice would be great
self checking warfarin : hi everyone, I... - Atrial Fibrillati...
self checking warfarin
Hi,
I have been self testing since April 2011. I have a Coaguchek XS device and get my test strips on prescription courtesy of my GP surgery. It helps that surgery is totally supportive.
I would consider finding a GP practice that supports self testing. Or, just go it alone. If you know your therapeutic range and your therapeutic target then for 3 months you might be wise to buy your own test strips off Coaguchek direct and just do your own thing. The last I heard Coaguchek XS ( Roche, I think) had a 12 month interest free purchase plan. Your Warfarin Nurse sounds like she belongs to the age of dinosaurs. If you are that stable then all you need to do on your trip is to make sure your INR doesn't go high or too low. Always have a plan B though, like have a list of hospitals on your route that you can visit if need be. Just make sure you have enough Warfarin supplies to last for your trip plus a little extra. That's all I do when I go to Australia.
Thanks so much for your help, sometimes you can feel a bit on your own, and it’s reassuring to know your not,
Just get yourself a Coaguchek machine. You may have to buy the test strips yourself but surely it will be worth the expense to have such a unique holiday.
I've been self testing with Coaguchek for at least 15years with no objection from my surgery. I would do as Hidden has suggested and find a GP surgery who will support you. Otherwise buy your own kit and do it anyhow.
I'm so surprised at the reaction you've had as I've only had really positive reactions from medics I've come across when they learn that I self test.
I also think that it's really out of order that you should have to wait 3 weeks for an INR test. You really will feel so much more in control of your own health when you self test. Good luck and don't forgo your wonderful holiday plans !
Hiya Jalia,
Re your 2nd para .......... I was living in Dorking, Surrey when it all hit me back in 2010. My GP practice were just simply beyond brilliant and it was them that got me onto Coaguchek and self testing, supported me in getting set up, sooooo good. I then moved down to near Hayle in Cornwall and I registered to my first GP practice who were beyond the dinosaur era, wouldn't support me self testing and would only do the INR testing - by drawing blood from an arm themselves and sending it off to a Lab. ........ until that is the Lab. made a mistake. I found this out because I made a point of doing a self test within half an hour of the surgery doing a test. I also made a point of asking Surgery to tell me their result when they got it back from the Lab. One test date it got horribly wrong, can't remember the result but the Lab. INR was way, way higher then my INR test. Now I know that the two techniques will never produce the same result - never, but this was ridiculous.
Turned out that it forced me to search for another surgery around Hayle who, after an interview with a brilliant GP, accepted me and it too has been brilliant ever since.
Hope Lavendermay reads these comments.
John
Hi , I have read it , and it goes to show we need to take control over our own bodies, some doctors and nurses are wonderful and really help and understand you. others I’m afraid fall very short of that , l must try to be a lot stronger.
@thanks for your reply, I’m normally quite upfront about things , but grumpy nurses, well that’s another matter, I have to remind myself that the n h s is NOT a charity, and we all pay for it , and we should all have a say.
Do you have a mental health practitioner for you anxiety, they will support you in dealing with your warfarin nurse. The opportunity to engage in meaningful activity unpins all wellbeing and all reasonable adjustments to enable this to happen should be made. You could purchase a coaguchek and self test or possibly switch to a doac. What ever you choose don’t let 1 nurse stop you.
Hi 4chickens, What you say makes sense, I do try to be positive, but have lived with anxiety and depression for over 40 years, had all sorts of help and therapy, but most people trying to help you have had no personal experience of it, I definitely have white coat syndrome, and if I see a nurse or doctor coming I want to turn tail and run, difficult trying to sort out problems when you’re knees are shaking,
The trip sounds marvellous ! I do understand your concerns however as I too get anxious about how to get my INR checked on holiday ! I did manage Florida just before the pandemic though. Now, lots of people on the thread have said they are surprised at the response you got from your clinic. I got a more amiable response but they did say the NHS did not recognise the ‘home’ results. However, they also said having a Coaguchek would be ideal for peace of mind, and then you only need to arrange an NHS check if you were out of range. As people here have said, it’s a good idea to have a back up plan in case you do need an appointment. Do you have an itinerary for your trip or are you going to ‘fly by the seat of your pants’ ? A plan would be more difficult to formulate if it’s the latter. If you are usually in range, I would think that as long as you don’t go crazy with different foods, you will find the Coaguchek will show all is well with your INR readings. Good luck, and try not to be too anxious - that itself sends my INR all over the place !
A Coaguchek machine is quite an investment BUT once you are in charge of your own INR you won't want to go back to your surgery for testing. I was in range over 90% of the time and when I wasn't I knew exactly how to get back in range and quickly too. My surgery wouldn't fund the testing strips as they had a nurse who could always test at short notice, but I thought paying for the strips myself was a small price to pay for my own peace of mind. I had long trips abroad a couple of times a year and never gave it a moment's thought as I was in charge. Hope you have a lovely trip!
I sympathise with your anxiety. I usually enjoy a robust debate and discussion, but facing health professionals is intimidating.
I too was told when I moved, that my local practice did not "do" home testing" and, even worse, self-dosing. Somehow I obtained a compromise: they continue to prescribe warfarin, and I pay for my own test strips and self-dose. Note, the compromise was negotiated without direct conversation. Sometimes people will only apply the rules when pushed to.
At hospital they told me that in Wales, responsibility for anticoagulation now belongs to Primary Care, not hospitals as before. Nevertheless, the hospital accepted that I was competent. The discharge letters simply state: "Patient self monitors and self doses". This is a statement of fact. It does not state approval, though it can be taken that way, so everyone is happy.
In your case, first you need to negotiate supplies of warfarin. Perhaps you have already accumulated enough. In pre-covid days doctors were allowed to provide supplies for two months.
Next, move over to self-testing. Many people who self test then phone the result through to their anti-coagulation nurse who then does the dosing. Others, self dose.
A cheaper possibility is to phone round the GPs while on holiday and ask which of them has a Coaguchek machine, then register as a temporary resident and see the nurse.
I once went to the blood test unit of a hospital, explained I needed an INR while on holiday. They said this was usually done through a GP but... They did it with a result in an hour and said the next problem is a doctor for the dosing. They were quite relieved when I said I was self-dosing.
it is all needlessly stressful.
Lots of people on this site self-test. In fact I would say the majority who are on warfarin. Self-testing and self-management is the way to go, it puts the control in your hands rather than the medics'. That's where the issue with the warfarin nurse really lies I think. I've travelled all over the place (India, the US, Europe) with my Coaguchek with no problem. You might want to consider building a reserve of warfarin. I have 3m worth in reserve.
Agreed. Self testing puts control back in your hands.
When in hospital, in theory, you give up control. I noted they made at least five mistakes.
1/ Micromanagement ie daily testing and dose changes was used. There is a delay of roughly 48 hours between a dose change and the effect on the INR. Normal practice is to wait 3-7 days between testing and adjustments. Daily changes, micromanagement, leads to instability.
2/ Only the previous result and dose was considered. I had records going back over 20 years and I came to hospital with a photocopy of the results for the last year. In addition, I the patient carried personalised memory and analysis. Every health worker is supposed to know the importance of case history, but I the patient have to remind them of its importance.
3/ There was no attempt to distinguish between chance, the loading (reservoir level) and the input/output balance. I found myself teaching this to them.
4/ Dose changes they gave me were huge. No one considered the fact that for some patients, like me, even a small change could have large effects. So, for a daily dose of 5 to 6mg they would happily change the dose by 1mg, instead of 0.25mg.
5/ It was a different person each day who tried to do the dosing, usually only looking at todays result.
Hi. I bought a coaguchek xs machine especially for holidays. My gp practice won’t routinely prescribe the strips but they will if I’m going on holiday. They wrote to the inr clinic to confirm that they were ok with this and they were. I’m going away in nov for 3 1/2 weeks and The inr clinic said to email them or ring them if my inr changes and they will let me know how much warfarin to take. Self testing is very easy and ideal if you are going away. I would buy a machine via the Roche authorised sellers (Williams medical) as it’s cheaper than buying elsewhere and there’s good customer support. Mine cost £300 and I got 6 test strips free which could last you the length of your holiday depending on how often you test. Best wishes.
Make sure you are comfortable with the technique of testing. I used to get through six strips just trying to get one test -- I was following the instructions to the letter! I found the hard way. This is what works for me:1/ Prick number 3 gave a better drop than number 4 (which hurt more)
2/ For me, the recommended place at the side does not work. I prefer a fleshy bit in the centre.
3/ I now drop the drop into the centre of the strip, not at the sides.
Hi. Thank you. I’ll certainly try that. I was using no 5 but I’ll give 3 a try.
Try different depths. Something about finding the blood rather than the muscle. I reduced it to 3, with warm hands and I swing my arm to encourage blood into the hand, this gives a squezzable drop every time. Find what works for you.
Have you asked why you can't switch to Xarelto or one of the other more modern anticoagulants? They do not need monitoring.
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