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Written by a patient
29th January 2017

I have been referred to Prof Beverley Hunt from outside the area of London, as I felt I needed to get a proper diagnosis of my condition. At my local hospital the Drs didn't want to listen to what I was asking. Although they had done a couple of tests they didn't have the tests that this hospital has as it researches Antiphospholipid Syndrome, or "Sticky Blood". People have had Blood Clots from this disease, I had lung clots, others may have "Stroke" or Miscarriages, or Clots in the legs She listened to my history, looked at me properly especially with the skin problem of "corn beef" lookalike skin which is known as 'livedo reticularis' in the professional words, and as one Dr called it "Vasculitis" She listened to me talk about Brain Fog which means that the brain may be getting mini clots when my Warfarin INR falls below a range and it has meant I speak Gobbledegook, and wave my hands around trying to explain what I'm trying to say. For this she has put me on Warfarin and told me the dose I must stay between to give me an INR of between 3 and 4 and then I don't get Brain Fog. There is nothing worse than meeting up with a family member and not recognising who they are. I have also bought my own blood test machine, they are expensive, but it saves me going to the Anticoagulation Nurse 3 times a week, and when I first started going, I had to go by taxi and that proves very expensive. Now I do my blood test, ring the clinic and the Nurse will work with me to regulate my dose of Warfarin. There are some foods that make your blood thinner and some that make them thicker, so you do have to be careful with what you eat. She also explains that to keep the INR at the same level you have to eat the same green veg every day. I have also had joint problem and she prescribed me a drug that works for the awful pain that you get. All the other Doctors had been prescribing anti inflammatory drugs, for illnesses like arthritis, but they weren't working. She prescribed a specific drug made by a specific manufacturer. You have to have your eyes examined to make sure that no damage will happen, and she explained this to me. I have now been on them for 4 years and doing well. I have been to other hospitals, where they try and change you to new types of medication so that you won't have to check your Blood INR regularly, but I have been told by Prof Hunt that I'm not allowed to use them. Thank heavens she is there as she tells me they can't guarantee that I won't clot or bleed on this drug as I need the higher doses of warfarin. Thank you so much Prof Beverley Hunt, for giving me my life back. I feel that I am so much more in control now and I want to shout it from the rooftops.

Trust
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Listening
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Recommend
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