Its January 2012 and I've just finished writing up all the diary history on this blog. I'm now going to write about my findings, conclusions and recommendations to date.
My overall summary is that I believe healthcare professionals approach the drug in entirely the wrong manner. The assumption is that warfarin is a stable drug and once you are "stable", the dose pretty much stays the same, although you might periodically adjust to deal with lifestyle changes. As long as you do everything consistently, it will be fine. And if it goes a bit high, they just blame you for not eating enough vegetables.
In my opinion this is completely wrong. I believe it's an unstable drug that goes through brief periods of apparent stability before finding the next reason to bite you. Its a reactive drug that has a million variables and a million drugs that interact with it. Nearly everything you do is affecting it in one way or another.
However, I can see why professionals would have come to this opinion. A typical patient might only get tested every few weeks, and that's enough time for it to be stable, go unstable, then stable again. So both test results will show around the same, and therefore the patient is stable. If they happen to have been badly low or high at any time in the period, nobody would have known.
Or perhaps they know this... and that's why they say "If you ever suffer bleeding come and see us". This very reactive approach to medicine is terrible, and extremely old fashioned. In this modern world with the technology we have, this just isn't acceptable. Notice how there's no offering in here for if it goes low... perhaps they should say "If you have a stroke, come see us too". Of course this doesn't apply to most warfarin patients to quite the level it does to a heart valve patient, but nobody wants clots floating around their body, they never do any good. So by the grace of god go all patients on warfarin, essentially crossing their fingers that the drug stays in order for most of the time.
Clearly I'm a huge self-test advocate, and one of many, but a very small minority in the overall warfarin population. There can only be two reasons against self testing - (1) that the typical elderly person can't do the test, too complex and fiddly and (2) costs. I think the elderly issue can be worked around, carers, family, etc - even if just testing weekly it would be an improvement. And costs - well, no answer here - they cost a fortune to run, so I suspect this is the real reason.
The most stupid thing out there is the attitude of the professionals towards me - I've seen a variety of attitudes towards self testing. Dismissive is the first one, a feeling that a patient couldn't possibly do anything themselves. Patronising follows closely after that one, why on earth would a patient want to self test. Next comes the bossy one, telling me not to test and not to dose.
The UK needs to update the rules to allow me to self-test and self-dose, then I could be honest with the professionals and work together with them instead of having to do it covertly.
My overall summary is that I believe healthcare professionals approach the drug in entirely the wrong manner. The assumption is that warfarin is a stable drug and once you are "stable", the dose pretty much stays the same, although you might periodically adjust to deal with lifestyle changes. As long as you do everything consistently, it will be fine. And if it goes a bit high, they just blame you for not eating enough vegetables.
In my opinion this is completely wrong. I believe it's an unstable drug that goes through brief periods of apparent stability before finding the next reason to bite you. Its a reactive drug that has a million variables and a million drugs that interact with it. Nearly everything you do is affecting it in one way or another.
However, I can see why professionals would have come to this opinion. A typical patient might only get tested every few weeks, and that's enough time for it to be stable, go unstable, then stable again. So both test results will show around the same, and therefore the patient is stable. If they happen to have been badly low or high at any time in the period, nobody would have known.
Or perhaps they know this... and that's why they say "If you ever suffer bleeding come and see us". This very reactive approach to medicine is terrible, and extremely old fashioned. In this modern world with the technology we have, this just isn't acceptable. Notice how there's no offering in here for if it goes low... perhaps they should say "If you have a stroke, come see us too". Of course this doesn't apply to most warfarin patients to quite the level it does to a heart valve patient, but nobody wants clots floating around their body, they never do any good. So by the grace of god go all patients on warfarin, essentially crossing their fingers that the drug stays in order for most of the time.
Clearly I'm a huge self-test advocate, and one of many, but a very small minority in the overall warfarin population. There can only be two reasons against self testing - (1) that the typical elderly person can't do the test, too complex and fiddly and (2) costs. I think the elderly issue can be worked around, carers, family, etc - even if just testing weekly it would be an improvement. And costs - well, no answer here - they cost a fortune to run, so I suspect this is the real reason.
The most stupid thing out there is the attitude of the professionals towards me - I've seen a variety of attitudes towards self testing. Dismissive is the first one, a feeling that a patient couldn't possibly do anything themselves. Patronising follows closely after that one, why on earth would a patient want to self test. Next comes the bossy one, telling me not to test and not to dose.
The UK needs to update the rules to allow me to self-test and self-dose, then I could be honest with the professionals and work together with them instead of having to do it covertly.
WB: I'd argue that ignorance, or more charitably, lack of awareness, is the principle reason that self-testing isn't more accepted. Cost can't be it. The cost of a lab draw, and old fashioned PT test has to be greater than the cost of a strip. Sure there are Anti-coagulation clinics who use the Roche or other machines, but even there, how can it be cheaper when a strip is a strip is a strip. (I concede, the cost of the machine itself is daunting.)
ReplyDeleteYou're right though, times will change. Within a couple or few years, there'll be 'an app for that'. There'll be a little usb powered cube which plugs into a smart phone, and a test strip with a built in spike for finger pricking, and either the app will dose you, or it will automatically send your result to a professional who'll text back a dose. Better yet, there will be a light based solution which can tell what Pro-thrombin time is without even piercing the skin. (a man can dream can't he?)
Thanks for posting your experience, and for your frequent testing experiment. I've found personally that I like to test every 7-10 days, and by picking times completely at random, with varying frequency, I've found that I'm a little more consistent than you, though my diet and exercise routines are very regular, and I've not touched alcohol in years.
All the best,
PK
Well that makes sense, I guess people are just very slow to adapt to change. Many health professionals I talked to don't trust the finger prick test!
ReplyDeleteNiche areas always take longer to develop than mainstream ones, otherwise we'd have an app for that already!