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Artificial Heart Valve Surgery & Living with Warfarin: UK Info Support Group
Warfarin - YOUR thoughts..
This forum topic is for any thoughts you have on Warfarin..Good..Bad..Ugly..Whatever..!
Tags: coudamin, dabigatran, heart, inr, mechanical, valve, warfarin
Views: 664
Replies to This Discussion
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Permalink Reply by leo hall on -
this is about warfarin indirectly. have new generation anticoagulants been used in the uk yet?
i see they are used for othopedics and atrial fibrillation. dabigatran has been tested in vitro successfully. hopefully new generation anti-coags will be used for heart valve patients also! any info on these drugs being used in the uk or europe?
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Permalink Reply by Gerry on
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Taking warfarin does take a while to get used to. To begin with it all seems a little overwhelming with all the things which affect it. I must admit to begin with I used to worry alot and was probably over cautious. Once you get into a routine though taking the pills and monitoring is no big deal. To begin with there were alot of blood tests which did get me down but after a couple of months and on speaking to my consultant I purchased my own self testing kit which has been one of the best decisions. I went to Roche Diagnostics and purchased their Coaguchek XS Kit which is very small rather like a diabetic testing kit. It means I dont have to have venus blood tests regularly , instead you just prick your finger and get a reading.To begin with I callibrated my machine with a venus test as well and found my machine to be within 0.1 degree of accuracy.Roche diagnostics were very helpful when you first start and were always there to offer advice.The advantages of having your own kit is that you have control and you're not tied to the doctors surgery. I can do a finger prick test and simply ring in the results and a nurse will ring back any changes in dosage and leave a message on my answer machine.It also means when you go abroad on holiday you have the reassurance that if you need to you can check your levels.I do callibrate my machine approx every six months when you go for other blood tests but its alot kinder on your veins!!!!
To start with I also worried about bruising and cutting myself because it does take slightly longer for you to stop bleeding.
I would recommend getting a medic alert bracelet or identification which instantly alerts people to the fact you are on warfarin. I feel secure wearing it and you dont really notice you've got it on !!!
You also worry about diet and alcohol to start with but again as long as you are sensible you can have a small glass of wine and you can eat small amounts of green vegetable but dont eat large quantities!
Being a very active person I was also concerned as to how warfarin would effect my sporting life.
I was worried I wouldn't be able to ski or surf or mountain bike but you CAN continue to do these things as long as you're sensible and take a few precautions.
For Skiing- Ski with a helmet which is becoming much more commonplace anyway.
Avoid really crowded pistes.
Stay on the pistes and curb your more adventurous activities such as jumps and trees, just be sensible.
I also wear a small info tag in case of accident which tells people Im on warfarin and I have a mechanical valve, I even had it translated into French. It also has my hospital phone number and consultants name on it.
Keep yourself wrapped up ie Dont go out in a t shirt which you wouldn't do anyway!!!
Always carry a few plasters with you or some plastic skin spray in your pocket.
Cycling Again wear a helmet and take a few plasters with you.
Travelling Abroad- Before going abroad I took my old faithfuls eg aspirin, immodium etc to the pharmacist who advised me as to whether they interfered with warfarin. eg Instead of Aspirin I now use paracetamol .I don't use ibuprofen , instead I use a massage oil etc.
If they do upset warfarin your pharmacist can usually advise you on an alternative.
Just a few tips so you can regain your life and you take control of the warfarin not the other way round.
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Permalink Reply by Graeme on -
Gerry
Great Post! Thank you immensely for this. Good advice - particurlary the sports part as I was/am (still am - sorta?) an avid skier. I was also very interested in your take on the INR self testing Coagcheck route. I wanted to go on this route also but my doctors advised me against it as because of my underlying medical condition (I am an Aortic Dissection survivor) so they want to keep a pretty close eye on me and I have a separate drug regime for the AD repair control and the INR part of things is woven into the whole of my maintenance (sounds like a car service!) and they wanted to keep all the data in the one place...
I also am fairly stable with my INR and I only have a check now every 2 months or so at the local NHS clinic which is about 10 minutes away and takes only a minute to do. If i time it right I am in and out in 3-5 minutes without waiting. (I don't do 9am (!) and go in about 10 minutes b4 the clinic closes !)
I think the biggest thing here is to get BOTH the medical profession and the public EDUCATED about Warfarin and the fact it is NOT dangerous and you CAN leave a completely normal life if on a life long Warfarin regime. My 7 years comes up next month being on it, and I only have had a couple of dodgy moments in that whole time - the worst by far being a unknown reaction with a antibiotic drug with Warfarin that was only picked up by accident at a blood test 2 days after I started taking the antibiotics.
Yes, the Doctor stuffed up in a big way and DID NOT CHECK against side effects of the antibiotic with Warfarin before he prescribed it (and I did not ask him to check(!). Result is now I ALWAYS get ANY medication either prescription or not - checked - or I check it myself against Warfarin. That's probably the main thing to learn with Warfarin - take RESPONSIBILITY yourself for checking reaction against other drugs...even vitamins, foods etc..as Spinach, Broccili, Advocadoes etc - anything rich in vitamin K in fact. But, after research you factor this into your overall diet. As you say - your INR is going to vary day to day depending on your diet, alcohol intake, sleep, exercise etc. My INR usually ranges between 2.8 to 3.3 (my self imposed floor is 2.2 and my ceiling is 3.8) So I don't worry about any fluctuations between 2.8 to 3.3.
I do think however in the majority of cases that self testing is the way to go and saves a HUGE amount of time and running around with going to blood clinics and is invaluable if travelling overseas as in your case. My only comment here is that you should ALLWAYS be guided by your specialist medical practioner as in some cases (such as mine) I was guided away from this route - because of the reasons as I have outlined above. The only other thing I would add here is that at one stage i switched to Coaguchek testing at the local doctors when we moved to Surrey as they did not have a full NHS blood test clInic nearby.
That was when the proverbial stuff hit the fan - when the Doctor stuffed up with the new antibiotic he prescribed reacting to the Warfarin. My Coagchek result showed 5.5 - they called me in immediately and did an urgent venous blood test - and it was 8.8!!!!! Things got interesting then as i went off Warfarin completely for 3 days and then a whole round of testing for the next 2 months. After that it settled down again.
What I learnt from this was: The Coagckek is accurate and completely trustworthy up to about an INR of 5. (ish) Once it goes over this - the result can be flawed. At this stage you MUST GET an urgent venous test done as I had - as it showed a far different (higher) reading. The good thing here is that if I had done self testing it would have alerted me to the high INR - and hopefully me being aware this was too high - I would have contaced my doctor or an A and E who take this thing VERY seriously and then would have had an urgent veneous test and treatment on the results of that. The last thing to add here on self testing is that - as you say - you MUST have a venous test done every 3-6 months or so to verify the accuracy of the self tester.
OK all on that subject!
IN closing - I also think your idea of the bracelet is excellent - The medic alert and the bracelet - especially in French! Might get onto that for myself!
So - warfarin - not so bad as its made out!
cheers
Graeme Archer
Gerry said:Taking warfarin does take a while to get used to. To begin with it all seems a little overwhelming with all the things which affect it. I must admit to begin with I used to worry alot and was probably over cautious. Once you get into a routine though taking the pills and monitoring is no big deal. To begin with there were alot of blood tests which did get me down but after a couple of months and on speaking to my consultant I purchased my own self testing kit which has been one of the best decisions. I went to Roche Diagnostics and purchased their Coaguchek XS Kit which is very small rather like a diabetic testing kit. It means I dont have to have venus blood tests regularly , instead you just prick your finger and get a reading.To begin with I callibrated my machine with a venus test as well and found my machine to be within 0.1 degree of accuracy.Roche diagnostics were very helpful when you first start and were always there to offer advice.The advantages of having your own kit is that you have control and you're not tied to the doctors surgery. I can do a finger prick test and simply ring in the results and a nurse will ring back any changes in dosage and leave a message on my answer machine.It also means when you go abroad on holiday you have the reassurance that if you need to you can check your levels.I do callibrate my machine approx every six months when you go for other blood tests but its alot kinder on your veins!!!!
To start with I also worried about bruising and cutting myself because it does take slightly longer for you to stop bleeding.
I would recommend getting a medic alert bracelet or identification which instantly alerts people to the fact you are on warfarin. I feel secure wearing it and you dont really notice you've got it on !!!
You also worry about diet and alcohol to start with but again as long as you are sensible you can have a small glass of wine and you can eat small amounts of green vegetable but dont eat large quantities!
Being a very active person I was also concerned as to how warfarin would effect my sporting life.
I was worried I wouldn't be able to ski or surf or mountain bike but you CAN continue to do these things as long as you're sensible and take a few precautions.
For Skiing- Ski with a helmet which is becoming much more commonplace anyway.
Avoid really crowded pistes.
Stay on the pistes and curb your more adventurous activities such as jumps and trees, just be sensible.
I also wear a small info tag in case of accident which tells people Im on warfarin and I have a mechanical valve, I even had it translated into French. It also has my hospital phone number and consultants name on it.
Keep yourself wrapped up ie Dont go out in a t shirt which you wouldn't do anyway!!!
Always carry a few plasters with you or some plastic skin spray in your pocket.
Cycling Again wear a helmet and take a few plasters with you.
Travelling Abroad- Before going abroad I took my old faithfuls eg aspirin, immodium etc to the pharmacist who advised me as to whether they interfered with warfarin. eg Instead of Aspirin I now use paracetamol .I don't use ibuprofen , instead I use a massage oil etc.
If they do upset warfarin your pharmacist can usually advise you on an alternative.
Just a few tips so you can regain your life and you take control of the warfarin not the other way round.
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Permalink Reply by Graeme on
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Dabigatran - Finally a replacement for Warfarin - are we finally nearly there...??!! I think we are.. A LOT of positive press is coming out now with great results for this new drug to replace Warfarin. According to high ranked medical sources it is much better than Warfarin and will be going to full field trails shortly - and we could have approval within the next two years. Here's hoping!
Another good story here: Fingers crossed!
Cheers
Graeme
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Permalink Reply by Laura Chapman on
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Gerry - I only had my op 8 weeks ago so I'm a long way off self monitoring but my medium/long term plans involve retirement and lots of travelling so self management would be ideal. I know diabetics are given glucose monitors by the pharmaceutical companies and the sticks are on prescription, whats the deal with INR monitors? I've heard that you buy your own and some PCTs will accept prescriptions while others won't, I haven't made any enquiries yet. I'm having my INR monitored at my GP surgery by a nurse using an Accucheck machine and an algorithm. It's obviously much more convenient to go to a local GP surgery and have a finger prick but even so I'm often there 40 minutes - I don't want to upset anyone but it sounds like it would be a good idea to ask about how often they calibrate the machine? How long after you had your op did you take on self monitoring?
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Permalink Reply by Gerry on
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Hi laura
I had my op in Oct 2008 and bought my machine in the March/April2009 after my 3 month check with my consultant. I did discuss self testing with her and she explained and advised on who to contact. I must admit the Roche Diagnostics people were very helpful and gave me lots of information and were also there for support after Id bought my kit. I would add before buying your own do check with your doctor that your area will fund the strips and lancets. Mine did so it just means that when I run out I order on prescription more strips or lancets.I was a little apprehensive at first but our practice nurse helped me through it the first few times until I felt confident.I must confess now it is so easy to do and doesnt affect your life at all. It also gives you piece of mind when you go away on holiday for a few weeks that you can allways test yourself if need be and then ring home your results. I have done this several times from France with ease.
With regards to callibration I did have both venous and self check done together and I now do this every 6 months or when Im asked to have a venous test.So far they have only been out by 0.1 which is pretty impressive.
have a look at Roche diagnostics website at the Coaguchek XS machine.
gerry
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Permalink Reply by Laura Chapman on
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Thanks Gerry, I'm planning to go back to work in August so I'll start making enquiries now about whether I can get the test strips on prescription. Do you just test at regular intervals, if so how often? I've just had my first holiday since the op and overdid the walking (pulse 130 and quite irregular for several hours) and it was really hot and although I drank plenty I was concerned about dehydration and I introduced alcohol (only a glass of wine a night). I'm not due to have my INR tested for another 9 days by which time I'll be back in my old routine and it should be fine but I will never know the effect of the different holiday lifestyle except that I may have 'dodged a bullet'. I suppose I'm a bit nervous because so far I've only had 3 readings in the required range. I suppose the other issue is getting the test done outside of working hours, the nurse runs an INR clinic twice a week in the morning but when I'm back at work I'll need to be tested in the evening, that could be another deciding factor in self testing.
Gerry said:Hi laura
I had my op in Oct 2008 and bought my machine in the March/April2009 after my 3 month check with my consultant. I did discuss self testing with her and she explained and advised on who to contact. I must admit the Roche Diagnostics people were very helpful and gave me lots of information and were also there for support after Id bought my kit. I would add before buying your own do check with your doctor that your area will fund the strips and lancets. Mine did so it just means that when I run out I order on prescription more strips or lancets.I was a little apprehensive at first but our practice nurse helped me through it the first few times until I felt confident.I must confess now it is so easy to do and doesnt affect your life at all. It also gives you piece of mind when you go away on holiday for a few weeks that you can allways test yourself if need be and then ring home your results. I have done this several times from France with ease.
With regards to callibration I did have both venous and self check done together and I now do this every 6 months or when Im asked to have a venous test.So far they have only been out by 0.1 which is pretty impressive.
have a look at Roche diagnostics website at the Coaguchek XS machine.
gerry
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Permalink Reply by Mary Carr on -
I had my surgery on May 3, 2010 to replace my ascending aorta with a Dacron graft and the aortic valve with a St. Jude. So I am on Warfarin. My recovery has gone really well and I am feeling "normal" again. I would say that the only real problem I am having is with the Warfarin. At present I am on 5mg/day--I go to the lab weekly and get called with my INR and told whether I should change the dosage or not. Prior to surgery I was told by my surgeon that it would be OK to have a couple of glasses of wine occasionally. I did that one Sunday, tested on Tues, and had an INR of 4.9 (it had been 3.3 the previous week). The wine was the only thing that I can think of that could have caused the 4.9. I have talked to others who say that a couple of glasses of wine shouldn't have made that difference. As far as eating, I've been pretty much staying away from things high on the list of Vit K. I would rather just avoid those foods altogether than eat them daily. How long after you have something like the wine should you expect the change in your INR? How quickly does a change in your Wafarin dosage take affect? I'm hoping that it will get easier when I home test. Any words of advice?
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Permalink Reply by Graeme on
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Mary
INR is a bugger of a thing to get balanced.. I did all you did at the start of my new life on warfarin..in the end i made a point of having a small glass of wine virtually every night and at least one leafy green veg a day or an advocado etc..my logic was that once it was incorporated into my daily diet it would be easier to set my INR based on this being a regular part of my diet and not a once a week thing.....Guess what..it worked..for years i have stayed between 2.8-2.3/4 which is my range..the only problem i have now is that every time i take antibiotics it all goes pear shaped..even antibiotics that are supposedly ok with warfarin! A year ago I tested at 8.4 - yes 8.4 on antibiotics which was a pretty nasty shock..and recently tested at 4.5 after only one tab of a 5 a day 4 day course..so that's the real one to watch for me. I also now don't follow the blood clinic dosage if i am on antibiotics as they are too reactive instead of proactive, and i cut my dosage down from 7.5 a day to 6 mg a day whilst on antiboitics. Other than that - 7 years in March and going fine!
Hope this helps..
cheers
Graeme
Mary Carr said:I had my surgery on May 3, 2010 to replace my ascending aorta with a Dacron graft and the aortic valve with a St. Jude. So I am on Warfarin. My recovery has gone really well and I am feeling "normal" again. I would say that the only real problem I am having is with the Warfarin. At present I am on 5mg/day--I go to the lab weekly and get called with my INR and told whether I should change the dosage or not. Prior to surgery I was told by my surgeon that it would be OK to have a couple of glasses of wine occasionally. I did that one Sunday, tested on Tues, and had an INR of 4.9 (it had been 3.3 the previous week). The wine was the only thing that I can think of that could have caused the 4.9. I have talked to others who say that a couple of glasses of wine shouldn't have made that difference. As far as eating, I've been pretty much staying away from things high on the list of Vit K. I would rather just avoid those foods altogether than eat them daily. How long after you have something like the wine should you expect the change in your INR? How quickly does a change in your Wafarin dosage take affect? I'm hoping that it will get easier when I home test. Any words of advice?
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Permalink Reply by Racer on
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So thankful to have found this group. The information is invaluable, especially when it's coming from first hand experience...not to mention the psychological boost.
I'm so excited that there may possibly be an alternative to warfarin, fingers crossed, fingers crossed.
The discussions in this forum have been helpful to me. I've researched the Coagucheck a bit. The next step is to call them with questions and to check my insurance. All of this in preparation to speak with my Cardiologist, as he was totally opposed to such devices in 2007, when I had my mechanical mitral valve surgery.
It appears that the Coagucheck may be improved technology and accuracy since that time? I'm hoping so and that this may be a real possibility for me. As others have eluded to this could be very freeing and especially with travel.
Wish me luck! and thank you again.
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Permalink Reply by Racer on
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p.s. a valuable website for medical id's. www.n-styleid.com
They have the largest selection I have found. They also have attractive, stylish pieces for all age groups, male and female.
I found it valuable that it be stylish enough that I would actually wear it. It won't help me if it's off in a drawer somewhere.
Hope this is helpful.
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Permalink Reply by Graeme on
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Hi Racer..
Yes coagcheck has come a long way.. a LOT of people on the site use one...I'm still however using my local blood testing clinic at NHS - I have it down now to once a month or so..sometimes i only go every 6 weeks-2 months or so as its NOT gospel to go every week once your INR is stable - actually every month is fine.. also once you get some time behind your op and stability with your INR you are much more relaxed about it all... Sadly there have been a lot of false starts with a replacement for warfarin so don't hold your breath..it seems it is still a long way off... the last great hope - ximelagatran - was a spectacular flop in 2006 as it caused liver toxity and was swiftly withdrawn from the market.. the newest drug for warfarin replacement - Dabigatran - is only being tested for atrial fibrillation prevention and NOT for mechanical heart valve replacement..betrixaban is the latest all round drug under test to replace warfarin but is a looooong way off being cleared..as it still has a few years of testing to clear...if anyone knows of anything other than this PLEASE let the group know..but my doc and the warfarin clinic in UK say they have not heard of anything new in this field...??
Warfarin is OK - but you HAVE to have the right headspace with it..DO NOT let worrying about its effects or possible consequences of being on it if you are injured get to you.. it does NOT interfere with my life anywhere as much as i thought it would..yes - skydiving, skiing blacks and other 'boy racer' sports are out.. walking, swimming, running, gym etc are in...but that's a small price to pay...
cheers
Graeme
attitude ro Racer said:So thankful to have found this group. The information is invaluable, especially when it's coming from first hand experience...not to mention the psychological boost.
I'm so excited that there may possibly be an alternative to warfarin, fingers crossed, fingers crossed.
The discussions in this forum have been helpful to me. I've researched the Coagucheck a bit. The next step is to call them with questions and to check my insurance. All of this in preparation to speak with my Cardiologist, as he was totally opposed to such devices in 2007, when I had my mechanical mitral valve surgery.
It appears that the Coagucheck may be improved technology and accuracy since that time? I'm hoping so and that this may be a real possibility for me. As others have eluded to this could be very freeing and especially with travel.
Wish me luck! and thank you again.
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