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Thread: Lena's story

  1. #1
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    Default Lena's story

    Hello!
    My name is Lena and I was born in Sweden but have lived in US since 1975. The last 20 years in Santa Barbara Calif.
    In February 1917 I was having trouble getting over a cold, could not stop coughing. Got treated for pneumonia but only got worse. They thought maybe Valley Fever! I started getting nosebleeds, and my gums bled and when I started coughing blood my pulmonary doctor did a biopsy.
    My right lung was a bloody mush but he managed to get a piece out to send to a Wegener specialist in Palo Alto. I ended up in the hospital a very sick puppy. And it was confirmed I had Granulomatosis Polyangiitis.
    He sent me to a reumatologist here in town ( who luckily was a specialist in this disease! ) She put me on 1000 mg Prednisone and five hours of Rituxin!
    So over the next nine months I was on Prednison slowly decreasing the dose and Rituxin three more times. ( I gained 20 pounds...nice red apple cheeks!)
    Now I'm off Prednisone and do Rituxin every six months for the rest of my life.
    I wish I could say I'm symptom free, but I still have coughing fits and my throat is always full of mucus. Have to sleep on four pillows not to wake up choking and gagging. My nose stays clear thanks to Flonase!
    I have developed arthritis in my hands and have aching body pain on my bad days. Some days fatigue overwhelms me.
    But I decided to stay cheerful ( I'm alive!) and keep painting and having shows. ( I'm a watercolor artist) And I'm able to play with my little grandchildren...that's the best part!
    That is my story and if anybody has a trick to get rid of the mucus ( short of a plumber's snake!) please let me know!
    ~ Lena

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  3. #2
    Join Date
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    Default Re: Lena's story

    Closed due to duplicate thread caused by an over-eager text filter....yes I'm blaming the technology

    Go here for the real thread: https://www.wegeners-granulomatosis....5-Lena-s-story
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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