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My father was just diagnosed with wegener's in early February after a month of suffering from what he thought was pneumonia. After two weeks in the hospital he was sent home on steroids and lost his vision in his right eye. He knew this was going to to be a rough and slow recovery but he is a fighter and was ready to kick this awful disease. He was sent 2 weeks later for a rituxan infusion he was told to be prepared to feel exhausted the next day. The morning after his infusion he definitely felt tired and winded but thought nothing of it. After a couple hours he started to have tightness in his chest. My mom decided he needed to be taken to the ER. They made it there just in time. My dad's lungs had been attacked by wegener's. They had completely filled with blood and my family was told he was not going to make the night. He had a alveolar hemmorrhage. It's been a month in the ICU now. He had a trachomy done and is still hooked to the vetilator. All sedatives were stopped 5 days ago and he has yet to come out of his coma like state. I can't tell you how awful and quick this diease can attack. He had been monitored all that week and nothing was seen on his lungs. He has had 5 plasmapharisi treatments and we have been told the diease is now in control. Now we are more concerned about him coming to and living a normal life again. Certainly will be a long road. Has anyone heard or known of someone having such a severe case? I've read that the plasma treatments have a good long term effects keeping ppl in remission for up to 20 years. Anyone have experience with this treatment? Just anxious for my father's recovery. Mind you he I'd only 60 and was in excellent health until this diease took over. He is definitely a fighter!
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