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  • Guest's Avatar
    Guest replied
    Fsgs

    Hello,

    I am 28. I live in Paradise, CA. I was diagnosed with FSGS in 2002. So was my little brother.

    I was wondering if anyone else out there knows anyone who has FSGS? If you do can you please email me? Bruce@ParadiseKidneyFoundation.org

    Sincerely,

    Bruce
    http://paradisekidneyfoundation.org/

    Leave a comment:


  • Guest's Avatar
    Guest replied
    re child

    hi i am very new to this forum as i didnt know it even exsisted .we have a six year old girl who has suffered from nephrotic syndrome for the past 3 1/2 years .

    she keeps relapsing .she has had a renal biopsy in 2002 and i was told that it was ok at the time .
    she has had a relapse in july 2004 . i then went to see her consultant august 2004 where he told me that her biopsy in 2002 was within the range of minimal change glomerulopathy, there was a small focus of tubular atrophy raising the possibility of FSGS and they now want to repeat the biopsy .
    THIS IS HOW IT WAS IN OUR LETTER FORM HER CONSULTANT.

    i am unawear of what FSGS is and would like to know as much as possible and what the treatment would be i know that all cases are different.

    we have asked her doctor what FSGS is and he has told us not to worry he will let us know when the time is right .
    which both my husband and i dont think that it was the right thing to say . i am a firm believer in that the more you know the better prepeared you are .

    so if anyone can help us we would be truely thankfull

    any links to sites or information would be good .

    Leave a comment:


  • DaVita RN
    replied
    It is necessary to talk with a physician before changing diet, medications or methods of treatment. For example, the physician will know if high potassium or high phosphorus blood levels is a concern . If these levels are high, then a food restriction may make sense. However, it may be unnecessary or inappropriate if levels are not high.

    Leave a comment:


  • lwblack
    replied
    Being a dialysis patient, I can relate with the feelings you are experiencing and applaud your attempts at searching for alternative help. If it were me, I would go ahead and start dieting as if I were already on dialysis so that the kidneys dont have to work as hard. Stay away from high potassium and high phophorous foods and keep strict tabs on fluid intake.
    This does not infer you are giving up in the least bit. It just means you are doing what must be done. Cases of kidney function returning is not uncommon. Even for people already on dialysis.

    Larry

    Leave a comment:


  • Guest's Avatar
    Guest started a topic Fsgs

    Fsgs

    My husband was diagnosed with FSGS Feb. 2004. His current treatment is steroids, diueretics, cholestrol meds, BP meds. Our Dr. has told us that this is the only treatment for this disease. The steroids don't seem to be working and his protein is rising and he is still retaining fluid. The goal is to keep him off dialysis. I feel like we are just prolonging the inevitable and that maybe there might be other options, meds, etc. that have worked for other people. If anyone has any advice or something that has worked for them. PLEASE let us know.