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amyloidosis

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ian8962
ian8962

hi all been quite awhile since i last posted update as to what has been going on  ive had a bone marrow biopsy and been down to the national amyloidosis centre in london where i had numerous tests and scans  turns out i have amyloidosis in the kidneys and spleen  ive been waiting 4 weeks to find out what type of amyloidosis i have  and just found out i have the untreatable type a heredity type  so basically  its now going to get worse and could spread to other organs the specialist says that the genes that are mutating are coming from the liver  even though the liver is fine  she sayskidneys will now fail   this is a terminal desease  she says im going to need a double transplant  liver/kidney  and that might give me a chance of a possible cure or at least hopefully extend my life  im back in london on the 26th sept to see her to discuss everything  there are supposidley a drug in clinical trials at the moment which is showing to dissolve the build up of amyloids and may be released next year  im praying for that  as` far as im aware i think they like to do the transplants at the same time and preferbly the organs from the same donor  so they will be waiting for kidneys to fail before i go on list  i will keep you updated   

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2 Replies

  • helen54849
    helen54849 ian8962

    Posted

    Hya Ian,

    I was only thinking about you the other day so it is nice to have an update from you.  This isn't what I wanted to here for you and I am quite sure you feel the same.  Next year will be here before you know it and then hopefully you can get on this drug trial and see what is what from there.  They do pancrias and kidney from the same doner and people who need to organs are given priority on the transplant list so fingers crossed when the time comes you won't have to wait long.  My friends husband had a kidney/pancrias tx and he went on the list late November and after two failed calls (sometimes for various reason the tx is not possible) he had his tx in the December so not long at all.  You sound remarkabley calm and upbeat, please carry on this way.  I can't tell you how proud I am of you my friend, never give up hope things come up all the time.  Sending big hugs to my fellow geordie lad xx

    • ian8962
      ian8962 helen54849

      Posted

      hi helen lovley to here from you  its a liver transplant i need not the pancreas and obviousley kidneys when they fail  im still in the dark as to wether they will do liver first as thats where the gene thats mutating is comimg from or wether they wait until kidneys fail and then get both done together  im not going to find out until september when i see consultant  as for being calm im not really im terrified but i realise theres nothing i can do its out of my hands and i have to trust and have faith in others im going to book myself a few days in a hotel when i go down in sept  and have a bit of a break  i will keep you updated thanks for the reply helen xxx

       

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