Hi Lindsey, I am so sorry for the pain and fear your Dad and family are going through. I know the fear, I know the pain, I know the worry. I was diagnosed in 1990, I was 25. I am 48 and my wegeners started in my sinuses and lungs. All my lung tumors (I am told I had many) except one which I still have and has not changed in all these years, are all gone and left little dots of scar tissue in my lungs. Not much problems at all in my lungs all these years, and my Rheumatologist put me on Bactrim DS in 1992 because the disease was so unknown at that time, and studies done at UAB in Birmingham, Al. at that time, thought the use of the Bactrim DS helped keep the lungs from getting infections and other issues. I know of no other wegeners pt that has been on this treatment. But is seems to work for me. As you can tell from this site, every wegeners pt is sooo different. I think the main thing is to get the symptoms under control. Thats what they did for me. I was in terrible shape, could not walk, all my joints were inflamed, I had to crawl to get somewhere, like to the restroom. When my Mom took me took the ER, I was pretty close to being beyond help. They attacked the dz (once they realized what it was, which took about 3 days and 4 different specialists)with 80 mg of prednisone, crazy amounts of antiobiotics, and I dont know what else. I was like a new person in 2 wks, but far from better. still had to walk with a cane, had vasculitis in tips of fingers and toes, could not button a button. But I was feeling a lot better. And its been 23 years, several different ups and downs.....different meds, and just have kind of settled into always being on 5 mg prednisone, still am. But I have no nose, I have had 2 total nose reconstructions, wegeners eats cartlidge, so I have plastic holding up my nose. This pic is my "before wegeners" pic. But I do not look deformed at all, people never ask me what happened to my nose. But inside, I dont know if I can describe my nose. Basically, My EENT said yesterday, I do not have any cartlidge, absolutely none in my nose, it is an open cavity. I have glass jones tubes in the corners of each eye that go into my nose cavity for my tears to drain into. I irrigate daily to keep crusting out and keeping my nose clean so I can breath. Is it painful? Yes. teeth ache constantly, face throbs. So now I have to take Opana, which helped wonderfully, but it is so expensive, now I have to take Morphine 60er and Morphine 15ir for breakthrough pain. Keep in mind that your Father is being diagnosed 23 years after me, so a lot more is known about it. But as you see on this site, many different drs do many different things. So I would stay on top of the doctors and reasearch, get him feeling better soon if he can physically take it, and just keep close to every thing that is done to him. My first dr always asked me what I felt like was going on in my body. He took my feelings very seriously, because I was one of only 2 wegeners patients he had, and he was working with another dr from UAB and learning himself. I feel his intuition, study of the dz, listining to me about how I felt, all helped me live a very active life for many years. I am doing ok now. But lots has happened, and I am going thru personal issues that make me feel sad sometimes, so im fighting that as well as the dz! BLA!!!! Ill be thinking of yall and I want to check and see how your dad is doing. Try not to be afraid, and research, and being a nurse, you know, sometimes you have to give your opinion to your dr! I have many times.......
Take care, and prayers will be coming from me to your Father and family.....
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This is one of the worst parts, waiting for the diagnosis. The scheduler probably also gets the approval from your insurance company before sending to the imaging center. I'm an impatient kind to so I feel you and your Dad's pain.
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Originally Posted by windchime
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