I have to start Warfarin tonight for the first time and I am terrified!

I keep thinking about my holidays in the U.S. My few drinks at the weekend and my diet but most of all Internal bleeding. Am I over reacting? This anxious feeling is making my AF kick in - I'm so pleased to have found this site as I'm sure my family are fed up listening to me....they have banned the "W" word.

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  • Yes you are!!!!!!!!!! I've been on it for ten years,no hardship, no hassle. It has a bad name in some quarters but it is your best friend as it will stop you having a stroke which I am sure you wouldn't want. OK there are a very few no no's but provided that you keep to a regular diet nothing to worry about. As far as internal bleeding goes you would be worse off on aspirin. with little on no protection.

    Bob

  • Hi Gemini

    Really nothing to worry about warfarin is really benign and easy to take, the only diet change is to avoid cranberry juice and to not "binge" on anything green and veggie. The rest just eat. The secret is consistency.

    One glass of wine won't hurt either, again just don't binge.

    Lastly the risk of bleed is really quite low, as Bob says much more likely with aspirin and gastro intestinal bleeding.

    Really honestly, in three months you will wonder what all the fuss is about.... Promise

    Ian

  • Hi Gemini. Most people on this forum think warfarin is their best friend. I don't like it at all, but have found it less scary than I had thought I would. It felt like taking poison when I started!

    You don't have to give up alcohol, but you should keep consumption even and not have nothing for days and then have a few drinks. The same with things that contain vitamin K, like greens. Warfarin works really well for some people and less well for others. I struggle to be on an even keel. What is special about your diet? The key with warfarin is consistency and one's dose fits in with one's lifestyle.

    Internal bleeding isn't what I'm most frightened about and I have to say when I did have an external bleed (punctured vein) it was quite easily and quickly controlled.

    I was leaned upon very heavily and have given warfarin a go over 9 months. I don't care for it much, but it might work for you.

  • Hi Remllim, the reason i am messaging you is that you mention a punctured vein. I had a bad bleed in my arm (elbow) after having blood taking at hospial, the needle hurt coming out, and when taking the blood it took ages to fill shringe. By the time I got home the site of puncture wound was very sore and a further half hour down the line my arm swelled up and then the pain started sending me into shock. My neighbour took me back to A&E and my blood pressure was 200/218. Thought I was going to die. The following week it flared up again as my count went up to 7.6 and the bleed started again and I was admitted to hospital for over a week. My whole arm was black and they told me that I had a bleed from the vein. Can you tell me what exactly happened to you. Thanks and you can pm me if you want. Dot

  • Hi, Dottilind. Mine wasn't very dramatic, but my INR was 3.5 at the time. It was a few hours after my ablation and I managed to disturb the puncture in the femoral vein. I was on my feet and there were three trickles of blood running enthusiastically down my leg towards my ankle! Two nurses in attendance very promptly and efficiently, bundled me into bed, pressure was applied and it stopped at once and gave no further trouble. I continued the pressure for I know not how long. I did start to acquire a wonderful bruise, which I don't think was there immediately after the ablation. It got to the size of one of those fan shaped biscuits that are sometimes served with ice creams, and in a couple of days it was a spectacular aubergine colour, but it faded quite quickly and I was left with a sort of a shadow which took much longer to disappear. The punctures healed well and have not been painful or a bother.

    Your experience sounds very frightening and most unwelcome. Was it thought such very high blood pressure was just a result of the drama? I've had a wide range of experiences with blood extraction - gave lots of donations a long time ago as well as having cannulas inserted and plenty of blood tests - and some people can do it really well and others (and their patients) struggle.

  • "Am I over reacting?" yes, but so did I :-) . Been on Warfarin 3 years or so now and nothing to report except any cut takes longer to heal. I haven't altered my diet one tiny bit but I don't binge on anything either. The monitoring is a nuisance but on the other hand it's very reassuring. One thing that made my mind settle was to learn that it does not thin the blood, my blood is the same viscosity as usual, it just won't clot as easily.

    Koll

  • quite understand- I felt the same when starting Warfarin last year but it has been fine, no problems at all.

    You might want to do self-testing ( machine is £300) when the clinic have helped you get stable INR- although expensive, it means you can check INR doesn't get too high- which is when bleeding risk increases ( also can check it's not too low of course)

    Really is not a problem- best wishes, Rosemary

  • Hi Gemini

    I completely understand your concerns. I was exactly the same when I was started on my anticoagulation, Rivaoxaban, one of the new novel anticoagulants. I sat looking at the box imagining all sorts of horrors but knowing I needed it for stroke protection.

    Fortunately my cousin rang while I was looking at the box worrying and asked how I was. She told me that as I was mid way through my lunch (my particular drug needs to be taken with food) I should take my first tablet while she was talking to me which I did after she had talked me through the benefits. She is an Accident and Emergency consultant and even though there is no antidote currently available for this drug she said there was things that could be done in the event of a bleed.

    So I popped my first pill there and then and have not looked back since. That was 15 months ago.

    Give warfarin a go, millions use it successfully and there is no reason why you should be any different. You would not have been prescribed it otherwise.

    Best wishes

    Dee.

  • And good luck to you too Dee. Thanks for sharing your experience. Kind Regards, Patricia.

  • Hi Gemini,

    I've been taking Warfarin for almost 12 months, and was very bothered initially, especially when my yellow card said for "life", big shock to go from no medication to a permanent anticoagulant and cardiac medication. I'am now more bothered by the fact that my EP wants to take me off Warfarin in a couple of months following a recent ablation, because I don't fit the criteria for ongoing use. I now feel very safe with this drug and the thought of a potential stroke really worries me.

    The only problem I had was in November when Amiodarone was introduced and caused a nose bleed, which was easily rectified.

    Amiodarone and Warfarin don't like each other, but I was pre warned.

    Amiodarone, now that is a scary drug, but unfortunately my only option at present, hopefully I can discontinue that soon.

    Warfarin could be your new best friend, and as everyone has already said, just continue your life without any drastic dietary changes.

    That said, be well and cheers, I' m just about to have my first mouthful of red wine ( only a small glass, lol)

    Best Wishes, Chris

  • Thanks for taking the time to reply Chris. I am trying to get my head round warfarin - this is only my second day on it. Like you said, I will try and embrace this drug that will hopefully protect me from a stroke, although like yourself "life" is a bit scary. Now, back to the wine issue...I have already had one glass and will enjoy a second before retiring....and hope that I get a stable INR fairly quickly.

  • I don't take Warfarin, but I'm interested in what's in store if I do. What's involved in the monitoring? How often is it? What counts as bingeing? I was already on over seven potions of fruit & veg a day before the recent recommendation to increase it. I don't plan my menu at all though, I just decide what to eat when I walk into the kitchen to cook it. When I cut myself shaving it's often a devil to get it to stop as it is.

  • Hi Ectopic

    OK monitoring consists usually of weekly blood tests until you get to an INR of roughly 2.5 and then they drift out depending on how stable you are to stay there, usually after 6 weeks you will go to fortnightly, and then monthly, 6 weekly or even longer.

    Bingeing I wouold define as eating green veggies far in excess of usual, note I said usual because you can stick to your diet as it is now and the warfarin will adapt to you, BUT if you change your diet drastically your INR will change. Most people don;t make any adjustments to their diet.

    Yes shaving cuts will take 5 mins longer, they are a bugger aren't they, buy new blades? :)

    Be well

    Ian

  • Thank you Ian.....I find your knowledge very helpful and being a newbie it can be

    very reassuring that I'm not alone in coping with AF.Thanks again and Kind Regards, Patricia.

  • You're certainly not alone Patricia, over 1400 of us on this forum alone, and many thousands out there also going through this.

    Be well and sleep tight

    Ian

  • Thanks Ian.

    When you refer to changes in diet, over what sort of timescale are we talking? Do you have to eat the same level of vitamin K every day, or does it just have to average out over a week? Or month? Taken over a month I doubt my diet changes much, but from week to week I'm not so sure. Day to day it definitely does.

    I'd been wondering if the monitoring was a several times a day palava like diabetics have.

  • Hi Ectopic

    I suspect the answer is that your diet needs to be the same between INR checks, but I'm not certain of that. Most of us experiment a little and soon find out what effects our INR levels.

    No daily checks, and none necessary, it's really not a big deal, honest.

    Ian

  • OK, cheers Ian.

  • I have been on warfarin six weeks , levels been steady between ,2.2 and 2.8 told am very lucky , however this last week been on a diet (" which should be a good thing as not having cakes biscuits Swees etc ; ) results will come in post tomorrow which i await with interest ! :-) will post it

  • Hi Gemini......., it's understandable but don't be, it's better than the alternative. J.

  • Hi Gemini. I was put on warfarin a couple of months ago ready for ablation. The thought of taking it worried me to begin with, but nearly 10 weeks down the line, I'm much happier. It took 5 weeks to get up to an INR of between 2 and 3 which is what you have to be for ablation and that was a bit frustrating. I started out on 2 mg and they increased really slowly. It's stable now at 2.7 with taking. 4 mg 5 times a week and 5 mg on wed and fri. I've stopped eating green veg like broccoli, kale and spinach, but eat peas, carrots courgettes and all fruit. I decided, since I'm hoping the warfarin is temporary, to cut out alcohol as I'm not much of a glass a day kind of girl - I'm more a 'none Monday to Thursday and let's crack a bottle on Friday evening'!!! Please don't worry about it though.

  • I know how you feel, I haven't started treatment yet,because I was going on holiday. They said to go away and enjoy myself. Ha !! I really don't want to go on Warfarin .but I.haven't been offered anything else. I am going to make an appointment to see my G.p. on Monday and talk to her.

  • Hi Tupelo...well I have been on warfarin for a month now and my INR seems to be in check. I think my issues will come when I go to the USA in September and will have to readjust when I take it! Really I have not noticed anything untoward and have had no obvious side effects. I cannot thank the people on this site enough for the reassurance they gave me when I first started to take it. I will continue to post anything that is worrying me on here and although the people re-iterate they are not medics...they listen and put forward their experiences and that helps me. Good luck with your GP visit...let us know how you get on. Kind regards, Patricia.

  • Warfarin is OK and nothing to be scared of :) I had a collapsed kidney last november and was on a blood thinning drug called hepron intervienously for 9 days, that was scarey at the start but you soon get used to taking a stand with you everywhere you go. One day when they were replacing a canister the nurse said I could go for a shower before they re wired me to the pump. Off I trot looking forward to washing my hair and being clean again :) I managed to wash my hair and was just toweling it dry when the canula in the back of my hand burst and there was a shower of blood all over the bathroom :( I pulled the emergency cord and shouted HELP ! The nurses were brilliant and said that this was a very common occurance on the ward. It gave me a hell of a shock though :( I have been on warfarin for 7 months now and my INR is stable at around 3. Good luck and don't let it worry you X

  • I told my EP when he mentioned Warfarin and after a few expletives in his face from me he put me on Apixaban which seems to be going fine for the mo but as you can see lots of people on here take Warfarin with little problem...I'm just a big scaredy cat :-)

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