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Wegners Granulamtosis

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brocky99
brocky99

Hi, just found this site. I was diagnosed with Wegeners in October 2008, I had had painful joints from May 2008, struggling to do most things which is hard running round after 2 children and trying to run a pub. In beginning of Oct 2008 I began to feel ill with what i thought was flu. I had put myself to bed for a week and still there was no change then i started to develop black blisters on my face and chest. Again I didnt think too much about them and just thought i was really run down. I then developed mouth ulcers and coldsores all over my mouth this is when I couldnt take it any longer, i had been taking painkiller after painkiller very strong ones because of my arthritis and ibuprofen 600mg tablets along with codeine, i had run out of codeine and asked my other half to take me to a and e at our local hospital, saw a doctor who diagnosed my black blisters as impetigo and prescribed me some more codeine and a cream for the blisters. I didnt get the cream because the blisters looked nothing like impetigo. 3 days later I was screaming in pain so my partner once again phoned my doctor where the receptionist deemed i wasnt ill enogh to warrant a home visit from my doctor, so he put the phone down and dialed 999. I was rushed into hospital on the Friday afternoon and transfereed the day after to Hope hospital in Salford onto the renal ward. I was really poorly and didnt have a clue what was going on. I had a kidney biopsy the following day which confirmed the diagnosis of wegeners and was put onto cyclophostamide (chemo) the day after. Along with the cocktail of all the other tablets they prescribed. I was in hospital for the next 3 weeks and they had stabalised the condition luckily my kidneys responded and went from working about 15% to now at 30%. The doctor is happy with my progress for the time being and i am responding to the treatment thank god, although my kidney function had gone down again last time i had blood tests but they are not sure if it was because of an infection i had picked up, i pick a lot of infections up because the chemo supresses my immune system. I am at the moment feeling well apart from the pain in my feet, ankles and knees. Hopefully my kidneys will improve but my doctors thinks i will be looking at dialysis at sometime in the future when we dont know but, that was our main reason for coming out of the pub life so now i can rsst at home on the days i am bad.

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  • brocky99
    brocky99

    Posted

    Hi been in hospital for a week, my kidney function is at final stage now so had the kidney nurse at home to discuss dialysis and what type to have. Now kidney function at 11%, last lot of chemo didnt work had another lot last week but wont find out whether it has done anything for a couple of weeks. Just waiting to see surgeon now for fistula and then dialysis will begin. Not had best of week but it is just another adjustment to my daily lifestyle. Feeling a bit down about it at mo cos was doing so well and when they let me out of hospital my kidney function was stable at 15% and the doctor had said i will prob need a new kidney before i am 50 which i was just getting my head round and then when i went for chemo last tuesday (4 days after being discharged) they wouldnt give it me cos my function had gone down again to 11% and everything else was up. went back next day and they gave me chemo but said it might work will have to wait and see. Not feeling too good today i feel sick and just fed up with it all. This disease is so complex, my worry now is if they manage to get the wegeners back into remission and i get a new kidney (have to go on transplant list now) what will happen if i have another flare up. have asked but no answers at mo. I am at renal clininc on thurs this week to see consultant so will hopefully get a few more answers there. but my blood results wont be true because my body will be dampened down from the chemo last week, and my last lot of bloods after the first chemo were goodish, then 2 weeks later i was in hospital again for a week and my bloods were rubbish again. Oh well suppose will have to wait and see what happens.

    Lisa

    xxxx

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