Warfarin

[lisburb]

Hi I,m new to the forum, I am taking warfarin after having a repair carried out on my Mitral valve back in December 2017. Everything has gone fine I,m as back to normal as I can be. However I am on Warfarin and my levels are all over the place. One week its up the other its down, has anyone any suggestions on what they eat or don't eat if they are taking it. Ive read up on the web and my INR Nurse and Pharmacist have told me all about what I can and cant eat and drink and it seems like even though I'm following all the rules nothing works. Help. I was told I would only have to take warfarin for 3 months as I have had a repair, so maybe my Gp will tell me to stop taking it soon.

[Mary_Janet]

Hi,

I was put on life long warfarin following aortic valve replacement. I was discharged in July and it seemed to take ages to settle, I finally I got to a blood test in December, an early Christmas present to me ! I too have kept to the rules so have no advice on that front to offer. I was told some people's INR settle quite quickly and some take longer...The warfarin is a nuisance but for me a small price to pay. Hope your doctor stops the warfarin soon

[Rosie1066]

Hi, I’ve been on Warfarin for the last nine years and, like you my INR levels are still all over the place and I have tests every two weeks. Unfortunately there are some people whose levels never stabilise. I hope yours levels out but I am so used to it now that I don’t even think about it and have to live with it. It’s just a little inconvenient but not a problem to me. I eat every I should and hardly ever drink but makes no difference.

[lisburb in reply to Rosie1066]

Thanks for the reply Rosie

[Shopgirl]

Hi Lisburb, I had a mitral valve repair last September and took warfarin for 3 months post op. My levels never reached the desired level of 2.5 and were mostly 1.9-2.0. As it was a repair no one seemed too concerned and at 3 months stopped taking it. I'm pleased your repair was a success, as far as I know mine was and I feel a lot better and seem to have more lung capacity if that makes sense. After walking miles on the flat I've started walking up hills recently and feel fitter than ever. Goodluck with your continued recovery. Shopgirl

[Nanpan]

Hi I had a Mitral Valve replacement 18 months ago like you my Warfarin levels were all over the place but once they stabilised I had to go for my ten week post op check at the hospital and they told me to stop taking it perhaps you need to speak to a cardiologist. Hope all goes well.

[Eadaoin]

I started Warfarin for AF soon after my Pacemaker was put in in 2008. I am under a London Hospital and my Yellow Book and I went there for the blood checks. My results never settled down. Usually tests were between 2-3 weeks and very occasionally it was 4-5 weeks. A year ago I was offered one of the new Anti-Coagulant medications. These work in a different way to the low Vit K Warfarin. On Warfarin I did everything by the book for diet but still had erratic results. Psychologically it was a huge step to change from Warfarin but I accepted the reassurances of the experts and now only have a blood test and consultation once a year. It was left up to me to decide after I had been given all the information and all of my questions had been answered. I have been back for my first annual check and my anticoag level is fine. I also need blood thinner medication because I have a blood cancer (too many platelets) leaving me with another reason for a high risk of stroke. There are 4 types of new Anti-Coagulants, I am on Edoxaban 60mg once a day. I am 75 and have been under Haematology for 20 years and Cardiology for half of that time alongside it. I said 'goodbye' to the Yellow Book but was already wearing a Medic Alert bracelet in case of an emergency for blood thinner and a few other health issues. Hope this helps.

[lisburb]

Thanks for the replies. My levels are still all over the place. I have asked for a referral back to the cardiology team, my GP was reluctant, saying that everyone who has a heart op has to be on it permanently!! I am confused. I remember quiet clearly, as does my Mum who was there with me, when my Consultant said I would only be on it for 6 - 8 weeks after surgery. I feel bad wasting the consultants time. Practice nurse has been on my back saying that I should keep my weight level constant, as the fluctuations are affecting the warfarin. The physio I am under says I have to loose 8kg, so I am in the correct weight range for my height. Practice nurse also tells me, I am doing too much exercise, thats affecting the warfarin, physio says he is talking a load of rubbish. I feel like putting them in the same room together and letting them fight over me LOL. Practice nurse is a bit of an old school nurse. I have had run ins with him before over my thyroid meds (I have an over active thyroid which is now under control on a very small amount of medication taken daily), he says I should not be on them, he should try living with the symptoms of that as well. Always thinks he knows better than the hospital specialists. Sorry for the rant, I just wanted to get it off my chest. Just got to wait now for appointment to come through, which will probably be ages. I tried to ring through to the Ward I was on for advice, but they said I would have to come in and see the Doctors before the decision was made to take me off it. Everyone Ive met who has had a repair (my late father included) has only been on it for a short time and def been off it well before the 12 week mark. On a plus though I am now back at work on a phased return and its great to be getting back to normal and feel like going to work. All we need now is some decent weather and Spring will be on its way.

[lisburb]

Just thought I would give you a bit of an update. No longer taking Warfarin, came off it 4 weeks ago and feel fine. I went on holiday and had a cyst, which burst and required a course of antibiotics. My INR levels went heywire and I had to have blood tests every few days. Feel loads better not sure whether it was the warfarin or just psychological. Have a good friend who was on warfarin and as now moved to one of the other anti coagulants as he had a replacement mitral valve and he feels more in control of his body now he has been switched over, less blood tests etc. Don't feel this hot weather and warfarin mix either. Happy Summer everyone.