Hematomacrosis

Hiya. Well all went well today my consultant is happy with my progress so don't need to see her for 3 months. Also on the up, my blood's taken the week before last were in the 800's.Last week my blood had gone down to in the 600's so we defo going down and a good drop down. Still a longway to go as they want it down to below 50 but it's a start.

Debbs.😃

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  • Hi Debs, not sure what hematomacrosis means, but it sounds like your getting the better of it, so well done, and keep doing what your doing as its obviously working xxx

  • Hi Alisonishere.

    It means my body is producing to much iron in my blood. I have to have weekly venesection where they take 400mls of blood from me and bin it. Treated it's ok just means I have to have blood taken for the rest of my life. At the minute my blood's are 600,when I first started it was over 1000 they want it down to 50,so a way to go yet. Gradually in time I will only need to go twice a year. It's hereditary haemochromatosis. So my son had to be tested thankfully he's in the clear. However if not detected it can be fatal as blood needs to go somewhere and if collects in the liver, heart or pancreas it's not good.

    Thankyou for your words of encouragement they mean alot. Debbs xxx

  • So glad to hear that its not passed onto your son, what a relief that must be for you. Thank you for explaining what it is to me, sounds like its going to affect you for the rest of your life, so how long has it taken to get from over 1000, to the 600 that you are at now? xxx

  • Oh god you won't believe how glad I am my son hasn't got it. Yeah it's going to effect me for the rest of my life, it just depends how often I have to have the blood taken at the minute is weekly bit could go down to 1 or 2 xs a year. When I first found out that I had this my reading was 1140 that was back in Sept/Oct . I started the venesection in January this yr so not took to long. On one reading it went back up but the following week it had gone bk down.

    Debbs xxx😃

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