bad news

ok, so today i saw the ent ear nose throat specialist. he thinks i have wegener's disease, a type of vasculitis. that is when my body attacks it's own blood, and therefore different organs. in this case, nose, lungs, throat, kidneys. for me anyway. the fact that i have already had kidney failure for unkown reasons means it is already ver advanced and was not diagnosed for quite a while.

so i have at best max 5 years to live, at worst max 4 months.

sorry, just a rant. am scared. going to have a biopsy of the nose, they say it hurts...

12 Replies

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  • Hannahrose, so sorry to hear that. Can't blame you for being scared, massive hugs and sympathy. Are they sure about its being Wegener's or do they need to do more tests? I hope there's something they can do for you.

    xxx

  • Hannahrose, try not to freak out over this, I do understand very much what you are going through. I was diagnosed last year with having Churg Struass Syndrome another kind of vasculitis. I read all the stuff on line that I could get my teeth into and thought OMG. A year later I have done the Cyclosphosmide Infusions (Chemo) they often treat the Wegners this way to begin with too. I have come through the other side and now it is under control.

    I recommend that you get in touch with the Stuart Strange Vasculitis Trust online, they as far as I can tell are the only UK based support group. They were recommended to me by my local specialists when I was diagnosed.

    Feel free to get in touch via PM, as I am sure there are this common ground that I have already trodden on, that may help you if you want.

    Best Wishes

    Katina

  • i am so sorry to hear your news hannahrose. hope they can find some treatment for you :)

    x x

  • Sending you hugs and hoping that you will get the treatment you need soon. It's different but I was diagnosed with psoriatic arthritis almost 2 years ago now, and it affects the whole body too and it still scares me. It is kind of a relief to have the right diagnosis though as it's hard to treat something you've never heard of before.

    Take care,

    Bee

  • Oh no Hannah,

    Much sympathy is about all i can offer, but this aint gonna help you :(

    Katina is the best person for you to talk to bout this.

    I really hope some treatment Kats mentioned helps to improve prognosis.

    Howie

  • Oh no Hannah,

    Much sympathy is about all i can offer, but this aint gonna help you :(

    Katina is the best person for you to talk to bout this.

    I really hope some treatment Kats mentioned helps to improve prognosis.

    Howie

  • thanks everyone for your supportive replies. yes, i looked it up on the net, and it mentioned the same meds that you said, plus steroids at like five times the dose i am on now; wondeful... the nose biopsi shouold confirm it is wegener's, but the guy seemed pretty sure of himself already.

    thanks

    rose

  • Never easy to find the words but this is very sad news (if confirmed), I can only echo the other people's comments. Try to remain strong and positive.

    Sending you all my best wishes.

    Mark

  • Never easy to find the words but this is very sad news (if confirmed), I can only echo the other people's comments. Try to remain strong and positive.

    Sending you all my best wishes.

    Mark

  • Oh no, what a shock this news must have been for you.

    Best wishes to you

  • Hannah

    Sorry to hear you news. I hope you have a supportive family and friends around you. You'll need that physical support. Although we can be here to support you in most senses to listen as to speak when you scared as you must be.

    Catherine

  • aww Hanna,

    Sorry for the news,lets hope the tests dont show it xxxx

    Try stay strong but easy said with a shock like that xxx

    love Glynis xxx

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