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Thread: Just Diagnosed

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    Default Just Diagnosed

    Hi, I’m new! I am excited to find this sight, and people who have experience with this thing. I was diagnosed yesterday.
    April 3th I almost, should have, passed out and was taken to the ER. They found a clump the size of my fist (seriously I measured it) in my lung. I was sent home on pneumonia drugs. About two weeks later my dr. could not find a drug to help and one night breathing got hard and I went back to the ER. I spent a little over 3 weeks in the hospital getting every test my continually growing team of Dr.s could think of. One of them decided to do a nose biop for wegeners granulomatosis. I was sent home on augmentin for my lung. No one would give me my biopsy results & I was getting concerned about what I found online, so I applied to this sight. I did not get better and with all the coughing, nose “bleeds” (the stuff looks like jerky), breathing trouble, and feeling like I was going to blackout I tried to contact my doctors.
    In the end my mom took me back to the ER where one of my doctors found my test results and put me on 40 of prednisone. Also while in the ER I had them do a urine tests. I had “very low” levels of micro blood. That’s new. The nurse assured me it was nothing but I can’t help but feel uneasy. I know very little about WG drugs but it seems like there is another drug I should also be on. Should I be concerned?
    Last edited by Rini; 05-12-2011 at 11:23 PM.
    Experience is the only way to survive. <3 Rini Orange

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    Hi Rini, welcome to the group. So your docs found a lump in your lungs the size of a fist and didn't biopsy it??

    Prednisone is not enough to keep Wegs under control. Trace blood in the urine is nothing to worry about but you do need to get thoroughly checked out and put on proper drugs. Where are you located?

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    Welcome to the site Rini. It really sounds like the doctors in the ER are not knowledgeablein Wegs. Prednisone is a start to treatment, but they should be talking to you about other treatment options. Your case sounds similar to how mine started. Nose bleeds, sinus involvment and lung involvement. I was sent home with pneumonia because of "cloudiness" in my lung, and two weeks later when it didn't get any better, I was diagnosed with Wegs after a couple days in the hospital.
    Did they do any blood tests? You have a right to your biopsy resluts, they should not be keeping them from you.
    Nicole

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    HI! I am in Indianapolis Bloomington, the thing in my lungs was close to my rib and they just stuck a needle and and sucked some out. The first time it was like toothpaste and they did test and cultures but nothing would grow. The second time they tried was almost 2 weeks later and it was too much a solid to get anything. For several reasons one doctor wanted a surgeon to cut it out and the surgeon REALLY did not want to do it. As this would mean the bottom 1/3 of my lung. i was with him (if i had options). I have an appointment monday with a doctor from the hospital team, i want to get on the right drugs but I do not know what to ask for.
    Experience is the only way to survive. <3 Rini Orange

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    Quote Originally Posted by NicShaf View Post
    Welcome to the site Rini. It really sounds like the doctors in the ER are not knowledgeablein Wegs. Prednisone is a start to treatment, but they should be talking to you about other treatment options. Your case sounds similar to how mine started. Nose bleeds, sinus involvment and lung involvement. I was sent home with pneumonia because of "cloudiness" in my lung, and two weeks later when it didn't get any better, I was diagnosed with Wegs after a couple days in the hospital.
    Did they do any blood tests? You have a right to your biopsy resluts, they should not be keeping them from you.
    Yes they did the blood test and decided it was not enough to go on. They were very doubtful as I am 18. I was waiting for the biopsy for over a week, they kept saying it wasn't back yet. Strangely the results magically became available after I went to the ER and one of them HAD to see me. How did u get diagnosed so fast at the hospital?
    Experience is the only way to survive. <3 Rini Orange

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    Quote Originally Posted by Rini View Post
    i want to get on the right drugs but I do not know what to ask for.
    Rini, it isn't your job to know what to ask for. You aren't a medical doctor! Cleveland Clinic is the closest vasculitis center to you. I suggest you travel there and get a proper assessment and treatment plan. Your local docs can administer the treatment and you can consult with CC as you need.

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    Thank you, you guys are very help full and I feel so much less stressed being able to ask questions to people who know what they are talking about! It has been close to seven weeks of doctors looking like they found an alien and saying "interesting". It dose not help that I react to every drug they find differently than expected. I will look into the clinic!
    Experience is the only way to survive. <3 Rini Orange

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    Quote Originally Posted by Rini View Post
    Thank you, you guys are very help full and I feel so much less stressed being able to ask questions to people who know what they are talking about! It has been close to seven weeks of doctors looking like they found an alien and saying "interesting". It dose not help that I react to every drug they find differently than expected. I will look into the clinic!
    Have they done blood work to check the Anca's. Positive C Anca is related to Wegners? So when the results magically appeared what was the diagnosis?

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    Quote Originally Posted by maria garcia View Post
    Have they done blood work to check the Anca's. Positive C Anca is related to Wegners? So when the results magically appeared what was the diagnosis?
    I think the blood was the positive test and the biopsy had granules. (i think that is the word) They decided with the lungs, buggers and blood i could be diagnosed for wegners granulomatosis with a lung abscess. It was more of a "yes! your test was positive, take steroids and go home we don't want to see you till monday," and now i am back to waiting.
    Experience is the only way to survive. <3 Rini Orange

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    Rini, you're so young-- are your parents helping?

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