Atrial fibrillation
What is it like being on warfarin for atrial fibrillation?
Blood thinning medication (anticoagulants) such as warfarin can help reduce the risk of stroke for people with atrial fibrillation (AF).
We asked people how they felt about taking warfarin and they told us their concerns about the increased risk of bleeding, attitudes to blood testing, self-monitoring, and the interaction of warfarin on diet and medication.
Increased risk of bleeding
While the association of warfarin with rat poison was rarely a deterrent, fear of bleeding and the inconvenience of regular blood tests to check INR levels (INR, or international normalisation ratio, measures how well your warfarin is working), were concerns for many people with AF.
One of the side effects of warfarin is an increased risk of bleeding. People we spoke to reported an increased tendency to bruise, cuts taking longer to stop bleeding, and a fear of falling and cutting themselves.
Jenny mentioned how her husband knocked a small wound on his hand while on warfarin and bled profusely, and Nuala described ‘a lot of bleeding’ when she had a tooth removed.
Gail’s face was ‘really swollen and bruised’ after having dental work done while she was taking warfarin.
Elisabeth Y’s decision not to take warfarin was influenced by the circumstances surrounding the death of Scotland’s first First Minister, Donald Dewar, who had a ‘massive cerebral bleed’ after falling and banging his head while on warfarin.
Geoff is concerned about bleeding when taking warfarin but balances this against his risk of stroke.
Geoff is concerned about bleeding when taking warfarin but balances this against his risk of stroke.
The warfarin is a nuisance because you bleed so easily, and you cut yourself, as I did the weekend, and I’ve still got a plaster on because I couldn’t stop the thing bleeding, and it was quite a deep cut. And I was thinking I’d have to go to A and E, dare I mention it, to try and get it sorted but it did eventually stop. But that’s a slight worry, you’ve always got to take plasters round with you in case you cut yourself or something like that and it’s obviously a risk.
Ginny was advised to curtail her mountaineering activities while on warfarin because of the risk of internal bleeding.
Ginny was advised to curtail her mountaineering activities while on warfarin because of the risk of internal bleeding.
Recently diagnosed with AF, Janet is uncertain about taking warfarin because of a pre-existing medical condition.
Recently diagnosed with AF, Janet is uncertain about taking warfarin because of a pre-existing medical condition.
Some people we spoke to wore bracelets or tags or carried booklets to alert people to the fact that they were taking warfarin for their AF. Paul’s bracelet stated his condition, blood group, name, and date of birth on it.
Raymond also wore an alert bracelet that ‘tells everybody what’s happened to me, that I’m on pacemaker, that I’m on warfarin'.
Chris Y had a ‘dog tag’ made to alert people to his AF in an emergency.
Chris Y had a ‘dog tag’ made to alert people to his AF in an emergency.
Vera carries a yellow booklet which includes details of her blood test results.
Vera carries a yellow booklet which includes details of her blood test results.
Attitudes to blood testing
Being on warfarin involves regular blood testing to check INR levels.
Dr Tim Holt explains the importance of managing warfarin levels through regular blood tests.
Dr Tim Holt explains the importance of managing warfarin levels through regular blood tests.
Some people we spoke to viewed it as 'a small inconvenience worth putting up with'.
Geoff, who had his blood tests done on the way to work, described how ‘it only takes 15 minutes and they give you a little pin prick and they give you the results straight away’.
Glyn praised the ‘new machine’ at his GP surgery which tested his blood with a finger prick test and provided immediate results so that his doctor could adjust his levels of warfarin if necessary.
Vera explained the routine of blood testing since she started taking warfarin.
Vera explained the routine of blood testing since she started taking warfarin.
That happened for two weeks, I had to go for a blood test for two weeks and then they said, the doctor said, “Now you can have just the finger prick test.” So I do that now. Sometimes I go once a week, sometimes its two weekly, but this time it’s been not for a month, and I do try and remember to take whatever dose it is about six o’clock in the evening. I’m not always spot on the ball with that but in in the evenings. And I was warned not to try not to cut myself because I would bleed much more easily, and so far I haven’t.
I mean it’s a bit of a bother sometimes thinking, “Oh, I’ve got to go for another blood test.” But I’m in and out so quickly, especially when it’s just a little finger prick. It’s amazing, you know, you, a little drop of blood goes onto this thing and onto the machine and works it out, and then I get a print out of what the dosage I’ve got to take for either the next week or whatever, and given an appointment then for the next time.
However, bruising from regular blood tests and the inconvenience of attending anticoagulation clinics or GP surgeries for blood testing were issues for others.
Regular blood tests left Paul’s arm looking ‘like a pin cushion’. For Ginny, who lived in a rural area, regular trips to hospital to have her blood checked proved expensive and time consuming, as well as interfering with her work.
Others also found the regular blood testing quite difficult to fit in with work commitments.
Dave, whose job involved frequent overseas travel, described the prospect of being on warfarin and having regular blood tests as ‘seriously inconvenient and an awful lot of irritation’ and decided not to take it.
Dot found the process ‘a drag’ and ‘a big chunk of time and disruption every week’.
Adjusting warfarin levels after blood testing could also be a problem.
James finds fortnightly blood tests interfere with his work. He finds the queues frustrating.
James finds fortnightly blood tests interfere with his work. He finds the queues frustrating.
While recognising the importance of blood tests, David Y found trips to the hospital very time-consuming.
While recognising the importance of blood tests, David Y found trips to the hospital very time-consuming.
David X explained how adjusting warfarin dosage after blood tests could be confusing.
David X explained how adjusting warfarin dosage after blood tests could be confusing.
* Text altered with David’s wishes.
Home monitoring of INR levels
Home monitoring of INR levels can be a solution for those who find attending clinics for regular blood tests inconvenient. For some, home monitoring offered them increased independence and a sense of control in regulating INR levels.
However, self-monitoring was not always appropriate or freely available.
Dot was told that she could self-monitor once her INR was stable so long as she bought the machine and testing strips herself.
Nuala said she would find it useful to self-monitor as ‘it would give me more independence’, but her medical team were less enthusiastic about the idea.
For Eileen home monitoring is a convenient way of testing her blood without going to the hospital.
For Eileen home monitoring is a convenient way of testing her blood without going to the hospital.
Is that because you’re a nurse?
No, anybody can do it. If the hospital assesses that it’s not going to freak you out or something. Anybody can do it. In fact, I first saw it advertised in the in the clinic, where you, you know, the haematology, anti-coagulant clinic was where I first saw the machine advertised and I’d been to several of the AFA conferences and had seen it there and wondered about it. Then, when I saw it advertised in the clinic, but no, you don’t have to have any medical knowledge at all.
Anne wants to be in control of her warfarin medication but has had to battle to get her GP to support this.
Anne wants to be in control of her warfarin medication but has had to battle to get her GP to support this.
Anyway, I have pushed it and pushed it and pushed it and now, it turns out, that yes, [local hospital] has got a programme all set up that if people are persistent and they buy their own and they buy their own strips, then they can monitor them and test the machines every now and again, perfect. But it’s been a battle getting as far as this to find out that, actually, yes, if I do go and buy it, I will be supported with it. It’s really been a battle getting that information. Nobody was going to volunteer it.
Interaction of warfarin on diet and medication
Some people taking warfarin talked about its interaction with certain foods and drink. They found foods such as cranberry juice and grapefruit, or going out for a big meal, or a few more drinks than usual could affect warfarin.
However, not everyone found it easy to identify the dietary cause of INR fluctuations. As Raymond said, ‘I don’t know what bit of the diet causes this to go wrong’.
Nuala followed the advice of her doctor to ‘eat whatever you want and I’ll warfarinise you’. This advice gave her more freedom in dietary choices.
David X emphasised the importance of monitoring your intake of alcohol and green vegetables while on warfarin.
David X emphasised the importance of monitoring your intake of alcohol and green vegetables while on warfarin.
* Text altered with David’s wishes.
Anne has lost 10.5 stone. She talked about dieting and the effect that has had on her warfarin.
Anne has lost 10.5 stone. She talked about dieting and the effect that has had on her warfarin.
But any variation in your diet, antibiotics, anything can throw the warfarin levels out, and I find it very unnerving.
People we spoke to told us that prescription medicines and over-the-counter products such as antibiotics, ibuprofen, aspirin, cough medicine and vitamins could also interfere with their INR levels.
Describing warfarin as her ‘pet hate’, Mary talked about the incompatibility of warfarin with some prescription and over-the-counter medications.
Describing warfarin as her ‘pet hate’, Mary talked about the incompatibility of warfarin with some prescription and over-the-counter medications.
It ties you down. In what way?
Well, I can’t choose what drugs to have. I mean I used to take zinc. I used to take ginkgo biloba for memory, all sorts of things now I can’t.
And I’ve got to give up all those, all my vitamins. I suppose I could go through them with the doctor to see what I can take and what I can’t but it’s so time consuming I just get, they say, “Don’t take any more. That’s it.”
Richard found that he was no longer able to take medication such as ibuprofen or aspirin when he developed a bad back.
Richard found that he was no longer able to take medication such as ibuprofen or aspirin when he developed a bad back.
Can’t have aspirin but can have you can have paracetamol for sort of headaches, that kind of thing but I always used to take aspirin before and aspirin always seemed to work better for me than any of that stuff. So it it’s things like, you know, I probably would have, given the back thing, I would have been trying ibuprofen, glucosamine and things like that, just that kind of thing. And I can’t do that, any of that.
See also ‘Atrial fibrillation, stroke risk and blood thinning medication’ and ‘Alternative to warfarin for atrial fibrillation: the new anticoagulants’.
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