Hi my name is Margaret McLean My son Andrew has had wegeners disease for 12 years first it was affecting his kidneys then it went into remission and last year his bladder bled till it was a non viable organ the doctors removed his bladder and made him a new one with 50 centimeters of his bowel so after a long and painful process it has begun to work normally except his disease wont go back into remission so he now has poor Kidney function and doctors want to put tubes from each of his kidneys to outside his body for urine to measure what is happening but this could mean he could lose his kidneys and be on dialisis if they bleed so he has refused to have this done He is on Mabthera treatment 3 monthly. I am just a worrried mum and would like to hear from anyone who has similar problems an what they have done about this