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Brother very ill with WG

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Angela_ma
Angela_ma

Hello, My brother is in hospital very ill with WG, he was diagnosed Dec 2009 he started treatment in January this year, he felt great after 1st infusions of cyclo and steroids but it gradually got worse, he told his consultant that he didn't think he was getting better and consultant told him it's because the treatment is working!! He is now in hospital with his spleen damaged, kidney's not functioning and peeing out blood clots and very high blood pressure and heart rate, which is preventing them doing biopsy. He has been told that there is not much else they can do for him!! His own consultant hasn't even bothered to show his face to explain anything to him - not happy with him!! Can anyone tell me if they have experienced any of these symtoms and how they were treated for it, I am getting really worried as we know he may die. Thanks Angela :cry:

0 likes, 3 replies

3 Replies

  • Debbie_Ley
    Debbie_Ley

    Posted

    Hi Angela, I was in Kidney failure and Plasma Exchange got rid of antibodies quick. I was successfully treated and am doing great. My friend has had WG for 25 years and she was peeing blood. she had a transplant. and is awaiting her second. If you get a private log in I can give you my phone number as I would like to give you a someone to talk to. I appreciate your worry. How old is your brother. If you are not happy with your consultant. Call Aberdeen Hospital ward 25. That is the Renal Ward which saved my life. Dr Nick Fluck, Dr Lars Erwig, Dr Carol Brunton or Dr Neil Basu. will help if desperate with advice or call Stuart Strange Vasculitus Trust for John Mills for support.
  • Guest
    Guest

    Posted

    i dont know where you are from im under manchester royal the rheumatology dept i would surgest you speak to the medical staff, your brother has a right for the doctors to see him daily and tell him what is going on. when i was having my chemo my specialist came to the ward every time and even now im over the worst i have a contact number if i need them, please let us know how he goes on and i wish him all the best and hope he is feeling better soon take care xx
  • Debbie_Ley
    Debbie_Ley

    Posted

    Angela, i would like to know if your brother is OK. I was desperately ill and have made a great recovery. before kids and WG I was so fit as a cyclist. I never thought I d get back on my bike. My husband has just left me with a 5 and 2 year old. The illness has made me tough and even through a bad thing I am tough as Im in control now. I have bought a road bike and up to 14 miles. I push myself as Im going to be as fit as I used to be. I was a determined person before WG and now life is better than it was. I am firmly in remmission now. My kidneys only work 40% but seem to be as fit as ever.
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