Hi folks me again!! I've been off warfarin now almost 4 weeks and have heard nothing about seeing a hematologist to get tested for clotting disorders. I was told by the anti coag nurse that I would be sent out an appointment as I need to be tested within 4-6 weeks of coming off warfarin. Do I need to chase this up or just be patient and wait for my appointment? I worry about is as my dvt happened after surgery and I think I may need more surgery in the near future for the same disease. I hate to think I've been forgotten about.

6 Replies

  • Hi fedup33. I should give it another week and then chase them up. There needs to be a delay to ensure that all the effects of Warfarin have left your system before they carry out further blood tests to check your "normal" clotting characteristics so don't be alarmed. Queues can always be a problem in NHS so it is not wrong to chase them up but in good time. Keep us posted hey!

  • Thank you again PBirt. I will probably wait until the middle of next week then call them (although I'm not exactly sure who I would call but that can be next week's problem). I am one of these people who wants things done now and I hate waiting as I would really like to just get on with my life without worrying all the time. The nurses are probably fed up listening to me hassling them all the time. I'll keep you all posted.

  • See your Gp, he hopefully will get things sorted. Don't think you are a nuisance, I have found you have to fight your corner these days if you are concerned. It is important.

    I have Hughes syndrome which will probably scare you more but don't give up fighting for help.

  • Thank you daisyd. I have since been told from one of the secretarys at the hospital that in fact there is no reason why I should see a hematologist as I got my dvt after surgery so the chances of getting another one are "slim"! This does not help me in the slightest as "slim" doesn't really reassure me much especially when my anti coagulant nurses told me on numerous occasions that because I was under 50 and got a dvt I would get checked out. This whole experience has been the scariest, traumatic thing that has ever happened to me and has actually changed my life to the point where I suffer pain from my leg on a daily basis and when I tell my gp or nurse I'm told to wear my stocking and get on with it basically.

  • NICE released new guidelines last year that recommended that people with a "provoked" (obvious reason) clot do not need to be tested for blood disorders. Clearly the surgery put you at risk of getting a clot. Did you receive any blood thinners post surgery to help reduce the risk of getting a bloody clot, as you should have? Also there are many other risk factors, age, weight, sex etc. it seems your Nurse is not up to speed with the national guidance!

    Saying that it is not up to a hospital secretary to tell you your treatment plan and if you are concerned press via your GP for an appointment to see a Haematologist to discuss your situation.

  • Oh and the stockings are to be worn to help prevent you developing leg ulcers so please wear them as directed.