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Thread: 13 years, 232 days -- and counting....

  1. #1
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    Default 13 years, 232 days -- and counting....

    I just found this forum and think it is really neat.

    I was diagnosed with Wegener's Granulomatosis on December 24, 1994 at the age of 16.

    At the time I was young and physically strong and gifted. An avid athlete, I trained daily with weights and cardio and found myself 185 lbs with 2% body fat. Nothing could get me down.

    Then, around Thanksgiving I got very lethargic and wanted nothing to do with sports or exercise. I also started to notice constant nasal congestion and throat soreness.

    I started to go to the doctors in November and was diagnosed with everything from depression to Epstein Barr. Then, at the end of November I had to be rushed tot he hospital when my right lung collapsed. After half a dozen surgeries and 31 physicians, still no diagnosis. 18 tumors in my lungs, liver, kidneys, and throat. Vascular legions all over my legs. Wheelchair bound with intense joint pain. 15% usable lung capacity.

    Then, on December 24 a group of three female physicians walked into my room and told my parents that they had heard about me through the grapevine and knew what I had .... Wegener's.

    I immediately started high doses of Cytoxan and Prednisone and capped it off with Bactrim, Bioxan, and 5-6 others. At the time they predicted I would live for 5 months.

    Well, I am still here almost 14 years later. I was able to play high school and Division 1 college baseball and still lead a very active lifestyle.

    I am happily married and work as a Business Development Consultant.

    I have been in remission for 18 months out of the past 13+ years and currently take daily Imuran and Bactrim.

    This disease stinks, but it is not the end of the world and can only beat you if you let it kill your spirit.

    I am excited to interact with you all and hope I can help out in some way.

  2. #2
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    Wow! I am so inspired by your story! I was diagnosed in May 2007 after 1 1/2 years of severe sinus disease and 4 weeks of being unable to function until I saw a new ENT and he immediately knew what it was. Since then, I tried Imuran for 6 months and now Cytoxan infusions for the last seven, along with various doses of Prednisone. I was recently told that, despite treatment, my right lung has partially collapsed and has 2 growing nodules. The Dr.'s at the University of Washington would like me to start Rituximab. Anyway, I have been having a pity party lately and came across this forum.....I have never met any other WG patients. Your story particularly touched me and shows that there is always hope! God bless you and your family! Margaret

  3. #3
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    Agreed. A very inspiring story, thanks so much for sharing. Welcome and thanks for joining us!

    There's nothing like the feeling of not being able to breath properly and with 15% usable lung capacity, I guess you got experience of that first-hand.

    Quote Originally Posted by Smithosity View Post
    This disease stinks, but it is not the end of the world and can only beat you if you let it kill your spirit.
    Brilliantly put. I really like that. I have to re-write the verbage on the front page. I think I'll use that if you don't mind
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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