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Thread: Today I found you.

  1. #1
    Join Date
    May 2006
    Thanked 0 Times in 0 Posts

    Default Today I found you.

    Today I finally decided to join this group and hopefully feel better emotionallly with the support of others. I was diagnosed a number of years ago after having a liver transplant a few years previously. One doctor kept telling me it was nothing and ordered quinine when I kept telling him I have this discoloration on my face and pain all over. After several visits of regular check-ups and bloodwork, I refused to sit down with a doctor to discuss my normal labs that I have taken. I told him there was no point in sitting down if I wasn't going to be listened to. I had never met him and he said he would listen and from what I described he ran more bloodwork. I take plaquenil and many meds for rejection. ( liver is doing fine- and before anyone asks, no- it is not alcohol or drug related-I get tired of the question-I had a rare liver disease that I would be glad to discuss if anyone wants to know) Like many others, I'm sure I'm going through some of the same situations here. It's always nice to make friends with people who know what you are going through. I'm looking forward to getting to know and hopefully become friends with some of you that may live in my area.

  2. #2
    Join Date
    Mar 2005
    Thanked 1 Time in 1 Post


    Welcome aboard the Lupie train.
    To be honest, I don't know that any of us WOULD ask that question, if they are like me I would have assumed it was Lupus related. Sounds like you have had a rough few years, but good for you telling the dr straight up. No point in beating around the bush and wasting your time. Glad you found us and look forward to your posts.

  3. #3
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    I have to ditto Tracydawn, I would have assumed that your liver problems were due to Lupus or some other autoimmune disorder. Like Tracy said, I don't think any of us would have asked about alcohol or drugs.
    We are so glad that you found us and even more glad that you've decided to join us. It is quite comforting to know that you are listened to by people who understand you, who believe you and who do not try to minimize what you are going through.
    I am glad that your liver is stable, many of the drugs that we take for lupus are the same as those given to avoid transplant rejection. I hope that you are able to find a doctor who takes you seriously..that is very important in our quest to manage this disease!!
    Welcome to our forum family, I am sure that you will make friends and find support, comfort and encouragement here
    Peace and Blessings

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