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Thread: Just Diagnosed

  1. #21
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    Went to c my Doc 2 day, they decided they want to take out 1/3 of my lung...without the last biopsy confirmation they don't want me on weggie drugs. My parents are considering Clevelan. I see the same surgeon from the hospital wednesday. This is the guy who spent 3 days explaining to me why even tho the doctors wanted me sliced he would not do it. Graduation is in 3 weeks, I have not been to school in...i think 7 weeks so I have no grades. Surgery would put me back in the hospital for @least 4 weeks, odds r a few more. I think I have finally snapped.
    Experience is the only way to survive. <3 Rini Orange

  2. #22
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    Good luck I hope you start feeling better.

  3. #23
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    Hi Rini.

    So you have not been 100% diagonsed with WG? Is that correct? Why do they want to take out one third of one of your lungs? What do they suspect?

  4. #24
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    Quote Originally Posted by Rini View Post
    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.
    This post from a few days ago suggests that they DO think you have wg. Is that correct? Removing part of your lung is not a cure! You would need to be on wg drugs. I suppose if they're preparing your for a major surgery, that could be a reason to delay immunosupressant drugs. But if that's the case, they don't seem to be communicating with you very well. Did they give you any other insight today??

    I agree with those who are urging you to go to Cleveland. I'm not at all confident that this team of doctors is able to treat wg.
    ~ Chris ~
    (Female )

  5. #25
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    I believe Rini is referring to an open lung biopsy, which takes a large area of the lung for biopsy.

    Rini, please go to Cleveland Clinic (or any major vasculitis center) before making such a decision. It might not be necessary, or they might be able to do a biopsy via bronchoscopy without removing a lot of tissue at all.

  6. #26
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    Quote Originally Posted by Rini View Post
    Went to c my Doc 2 day, they decided they want to take out 1/3 of my lung...without the last biopsy confirmation they don't want me on weggie drugs. My parents are considering Clevelan. I see the same surgeon from the hospital wednesday. This is the guy who spent 3 days explaining to me why even tho the doctors wanted me sliced he would not do it. Graduation is in 3 weeks, I have not been to school in...i think 7 weeks so I have no grades. Surgery would put me back in the hospital for @least 4 weeks, odds r a few more. I think I have finally snapped.
    Please get a second opinion before such surgery!

  7. #27
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    I'm so sorry to hear this Rini. Maybe the lung doc you see on Wednesday will have a different opinion in this matter. Again I can not echo enough what the others have said on here as well about getting to Cleveland to see Dr. Langford or another Wegs doc there. In most cases of Wegs with nose and sinus involvement a biopsy of the nose gives a positive for Wegs but not always. A lung biopsy has many risks so I urge you to get as much info as possible from the docs as to why it is being done and ask them about going to Cleveland or at least consulting with them.
    Phil Berggren, dx 2003

  8. #28
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    Quote Originally Posted by Sangye View Post
    I believe Rini is referring to an open lung biopsy, which takes a large area of the lung for biopsy.

    Rini, please go to Cleveland Clinic (or any major vasculitis center) before making such a decision. It might not be necessary, or they might be able to do a biopsy via bronchoscopy without removing a lot of tissue at all.
    I have a positive blood test and nose biop. I was told I was diagnosed but now they want a lung biopsy. The thing in my lungs the size of my fist (6.5cm, I measured the x-ray and my fist while bored in the hospital) is just to big. My parents are pushing for a biop and referral so that insurance will cover a trip to Cleveland, with a positive diagnosis I can try a weggie drugs and see if they help the growth but It most likely is getting cut out. It is to big for drugs to do any impact and has yet to respond to anything after 7 weeks. The thing has closed itself off in the botom 1/3 of my lung and happy to stay. I will find out wednesday if I can get a biopsy or if they are following doctors orders and just taking it out. I think m parents will help me push for a biop but the thing will in the end get cut out.
    Experience is the only way to survive. <3 Rini Orange

  9. #29
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    So what exactly is in your lung that needs to be cut out? Is it a large granuloma growth that has killed a part of the lung?
    Phil Berggren, dx 2003

  10. #30
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    Rini, you need to get a second opinion. I do go to Cleveland Clinic and see Dr Langford. I did get a little chunck taken out of my lungs, mine was done laporscopy...so the insicions were small. They called it VATS ( video assisted thoracic surgery). Hate to say this, but it was one of the most painful surgeries I ever had. I took me about a year to really get over it. I wished at that time I had a wegs specialist. Anyways, they did comfrim Wegs, they thought it might be cancer. I knew it was a Weggie nodule sitting there to give me some trouble.:0

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