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biopsy results

Posted , 3 users are following.

ian8962
ian8962

hi all got results from biopsy yesterday  devastating news   apparently ive got a disease called amyloidosis  which is not a kidney disease its a very rare condition  where the protein amoloid folds itself abnormally and then clump together and then go to different organs and body parts causing damage  what they know so far is that its gone to kidneys which has been causing the problems  what they dont know yet is if its gone to other body parts so this is whats going to happen next got to have a heart scan done asap and then a meeting with a specialist hematologist  to have a lot of bloods done  then im getting sent to a top hospital in london as this one is the only one in the uk that deals with this rare desease there i will be scanned and possibley have to have more biopsys done to see where its progressed to  i live in north east so miles away from home but hospital is taking me there and back   then ive got to have 6 weeks of chemotherapy   theres no cure and prognosis isnt very good  this desease usally affects heart kidneys liver bowels lungs joints skin nerves intestines  the london hospital can pinpoint which type of amyloidosis ive got and what proteins /strains are involved and what parts of body are effected the chemo therapy has shown in the past to damage the bone marrow cells and inhibit production of abnormal proteins  but then you can relapse and have to have chemo again  apparently they had a big special meeting about me and this condition on monday  basically the best senario that i can hope for is that its just in my kidneys and nowhere else but its for sure kidneys will fail now, comes to something when best outcome is kidney failure,  so thats my job going to go got a long worrying time ahead  keep you all updated as things progress  

0 likes, 4 replies

4 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey ian8962

    Posted

    Ian, what a bummer, I'm so sorry.  However, it sounds as though you are going to be under the best available care in the country, and no doubt the best treatment available will be open to you.  Do try not to stress about it at this stage, easy for me to say, I know - I would be as distraught as you under the same conditions.  But stress won't help - try and stay positive and wait for the further investigations - there is still hope that it is confined to one organ - is there a chance, for instance, that it could be confined to just one kidney?  Hang in there, Ian, and, if you feel it would help, do consider joining either a Tai Chi or a Mindfulness Class, or even some reflexology to help with relaxation whilst you await the scans.  Sending hugs, albeit virtual ones. 

    • ian8962
      ian8962 MrsO-UK_Surrey

      Posted

      thanks so much for your kind words apparently its in both kidneys  hopefully no where else in the body  ive had to accept what ive got even though its so very hard to do that  but ive now got to get on with it even though im terrified  as i said to the lovely helen in a previous message i love life and am not going to give up  once again thanks so much for your kind words and thoughts   means a lot xx
    • MrsO-UK_Surrey
      MrsO-UK_Surrey ian8962

      Posted

      Ian, I'm sure acceptance is the very hardest hurdle to cross at this moment but once crossed will stand you in good stead, and with the positivity coming through in your post, I'm sensing that you will do well.  Helen has been there and got the t-shirt - she is one of life's treasures especially for those on this subject - and I know she will be a wonderful support to you along the way.  So don't hesitate to come on here and vent if you feel the need - you are not alone - that is the beauty of forums such as this.  Again, sending my virtual hugs.

  • helen54849
    helen54849 ian8962

    Posted

    Hi Ian,

    Wow what a blow. The scan they do in London will help to see where is effected, they will inject you with mild radioactive blood protien which sticks to the areas that are being effected.  Hopefully it is just your kidneys and remains this way.  If it is and they start to fail you can have dialysis for sure, if they can get you in remission with chemo you could even be candidate for transplant. Even though there is no cure for this at the moment the treatment has come on so much over the years in that life exectancy was months but now it is years and you never know, treatments are being found and coming on so much now you never know what may be available.  I know this is going to be really easy for me to say but you need to try and chill your beans a bit I know how you worry and like I have told you before no shame in it. If you need to shout then do so, if you need to cry do it nothing wrong with getting it out, but don't keep it in ok.  I was born in Hexham and my grandma and grandad lived in walker by gateshead so I am not stranger to the the north east miss it but Wales is nice.  Please don't worry about your work and finances etc I am going to pm you to advise you ok please message me back so I know you have got it.  Whatever may happen you can do this ok you are a lot stronger than you think, you are not alone you have your lovely family there with you. Well that is my 3 nasty bits of news for the day I was worried yesterday as we didn't get a post but now I can understand why, you were processing the information that you had recieved.  I will message you in a mo xx

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