Frustrating!!!!

I have now been off Warfarin for a thigh dvt for 8 weeks now. I was told that before now I would have seen a hematologist to check for any clotting disorders but so far I have heard nothing. I finally got through to the correct person at the hospital today who said she would check this for me and will get back to me in a few days. I am extremely frustrated at how I constantly have to chase these things up and there never seems to be any urgency to find out if I am potentially at risk of getting another dvt. Any sort of twinge in my legs sends my brain into panic mode and I convince myself that I must have another clot. I hate being just a number to the nhs as they don't realise how much this has scared the hell out of me.

Sorry folks just needed to rant xx

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  • You're not alone!

    I had a pulmonary embolisym three weeks after arriving in Canada to work (February), went home in May and my local surgery didn't want to know. Went back to Canada after two weeks and spent the remainder of my time going to doctors bi-weekly.

    Came back in August with all of my hospital and doctors notes, the doctor took a cursory glance at them then told me to stop taking the warfarin as I'd been on it for 6 months He said "you know what to look out for, if it happens again then get yourself to the nearest hospital! Then you'll be on warfarin for the rest of your life".

    We are nothing to them and we have to pay for that non-caring service.

  • Hi fedup33 :)

    i totally understand how you are feeling, ive got my second dvt this time for no reason and i need to be referred to haematology, im in my 4th week, feeling very stressed :(

    i have been lucky with the nhs and my gp they are harassing me no end lol.

    have u tried your local gp/nurse to have an appointment just for a chat?

    let us know how u get on

    xxx

  • Keep pushing the hospital - I forgot about it, got a second PE and now I can't come off Warfarin to be tested because the risk is too high. This means I don't know if I'm unlucky or have a blood condition. It means I will have to have the kids tested when older as they can't check me for hereditary conditions.

  • I know the feeling. When I had my first DVT 7 years ago at 24yrs old, I wasn't told there was such a thing as clotting disorder so came off it at 6 months later. 7 years on and I was diagnosed with my 3rd DVT 5 weeks ago and am on warfarin for life. After my second clot I spoke to the doctor about being tested, as I had done my research by then, but she said there was no point. She said clearly I am prone to clots regardless of the cause but she didn't put me on warfarin for life because I was young. Today I saw my gp and he went through my notes to see if I hadn't been tested, and he found a letter from a Dr from the hospital saying I needed to be tested after coming off warfarin after my first clot!my surgery was really irresponsible not talking to me about testing at the time, and since then I have had two more clots which could have been much worse than they were. I am so angry at them! So I feel your pain!!!!

  • I had my first near fatal PE in November1987 After a hysterectomy.Nearly two weeks later a Haematologist said I looked very well and took me off the Warfarin I had been prescribed. I almost immediately had my second PE and was put back on Warfarin for 2.5 years. After that time I was taken off Warfarin and just over a month later had my third PE. My father died young and very suddenly after a long haul flight in 1964. His brother died young very suddenly. I had always warned my children thatI suspected we had a genetic problem. When eldest daughter had first baby she mentioned the family "problem" and was tested and found to have a flawed blood clotting gene. I was also tested even though I was on Warfarin. I too had the same flawed gene. My grandchildren will be need to be tested in due course as any females with the faulty gene will not be able to use oral contraception. The gene was only discovered in 1998 but I am eternally grateful to know why I have had so many PEs and it does influence what treatment I receive and which hospital can cope with me! Finally, it is not only the faulty gene we have but other oddities such as antiphospholipd syndrome. Ask your GP to refer you to the best hospital in your area even if you have to travel to it. I hope this will give you hope that you will be sorted out soon.

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