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Thread: Frustrated

  1. #1
    Join Date
    Aug 2012
    Thanked 4 Times in 2 Posts

    Default Frustrated

    I have occasionally had proteinuria (2+ once during pregnancy) and varying from none to trace, with it one time being 1+. I have had hematuria 2+ twice. My doctors at Johns Hopkins said I didn't need a kidney biopsy because I didn't have consistent protein of enough levels.

    I went ahead and had the biopsy and it showed absolutely no lupus nephritis (good), but did show post kidney infection. My nephrologist doesn't believe that was accurate and thinks that maybe I do have some mild degree of nephritis. I would really like to have another pregnancy in the next 6-9 months, which my rheumatologists are fine with. I get the sence that my nephrologist is not on board. Obviously my health comes first, but it's frustrating to have 2 different doctors not on the same pg. She wants a long string of completely clean urine catches. My urine catches are sporadic so I worry that will never happen.

    I have spherocytosis which can cause hematuria, but she doesn't think that's what's causing it. But she's confused because usually nephritis won't have sporadic, but consistent, proteinuria and or hematuria. Which I've never had. I wish I knew what was going on with me. I'm just so frustrated.

  2. #2
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    I can truly understand your frustration. If she wants a long stream of clean urine tests, then perhaps she should start doing some studying about nephritis, spherocytosis, and kidney infection so that she will no longer be confused and able to give you a definite answer to your possibly becoming pregnant. You may have to insist that she find a way to understand so that she can assist you in your wish to have a healthy pregnancy and a healthy baby.
    At times, we have to be pro-active with our health care providers and we have to tell them what we want them to do for us. Often, when we do that, our doctors will follow our instructions and do everything that they can to help us reach our goals.
    I wish you the very best.

    Peace and Blessings
    Look For The Good and Praise It!

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