My dad is improving again!!!

[Deb Roy]

Well it seems dad has had a rough time with this WG. He had the infection two weeks ago and just last week the doctors were talking about moving him to a rehabilitation facility which my family was concerned about. It seems he did not get moved, we received a call at midnight Saturday night asking us to come to the hospital, dad was vomiting blood clots and they needed to move him to ICU yet again! They inserted a suction into his where his feeding tube is and suctioned out the blood in his stomach and called on a gastro intestinal specialist who did a scope and found lesions in his esophagus along with two bleeding ulcers that he clamped. After 6 transfusions in a 12 hour time frame he was feeling much better. They are not allowing him to eat any solid foods, or anything warm and many many pills he takes every morning have to be put into his feeding tube.
Today he was moved out of ICU and looking much better. He has done some occupational therapy outside which he enjoys, he has not been outside for so long. The two months he has been in the hopsital he has only been outside twice. We continue to pray for him and everyone who is suffering with WG and their families every day
My questions are can you develop more lesions once you have been on the meds as long as he has which now has been 6 weeks? I had never heard of anyone getting them in their esophagus. Can he develop lesions on his eyes? He cannot see out of his right eye at all and his left eye is very blurry.
I know that he still has a long road ahead of him but I cannot wait until he can finally get to go home!

[renidrag]

Deb Roy: I hope things are getting better. From your posts it sounds that way. Are the NH doctors talking to Boston. BU has Dr. Merkel as Sangye sent you and MGH has Dr. Stone. Both are specialists in Wegener's. I only had lung involvement so I cant say anything about the throat, but others will I gaurantee it. Going off of Cytoxin seems quick to me, but again, a Wegener's Specialist would know. Nagging is about to start from the group. Boston is not that far away for a good day trip. Good luck and my best to your Dad.
Dale

[Sangye]

Yes, Wegs can affect any part of the body. Did they biopsy the lesions? That would show if they were due to Wegs or not. I'm assuming he's on some type of stomach protection with the prednisone. If not, that's a likely cause of the lesions.

Wegs can affect the eyes and cause blindness. They need to do an MRI and possibly a CT scan too, to determine the cause. I don't like the sound of all these areas affected. I don't think he is getting proper care. The Wegs should be better-controlled at this point.