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MDS AND LIVER DISEASE AND KIDNEY FAILURE

Home forums Patient Message Board MDS AND LIVER DISEASE AND KIDNEY FAILURE

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  • #49425
    Sachin Khanna
    Participant

    My mom has MDS. Recently she was hospitalized for unknown seizure episode. She was admitted and had another seizure episode. Lots of doctors involved. One day you get told one thing, the next day it’s something else. Her bilirubin is high, liver enzymes elevated, ferritin high, and urea is high. Ammonia levels were at 200. But now that she has all this, they won’t continue with vidaza. My question is, what is her life expectancy? Doctors have not met with us. We were told shes a mystery. The nurses dont know the difference between keppra and lactulose and the whole time the different doctors contradict each other. I think my mom is going to die at Wilson memorial hospital in johnson city by. It looks like she has liver disease and kidney failure on top of mds.

    #49426
    Michael
    Participant

    I would recommend having your mother seen at a MDS Center of Excellence. I think you have a choice of Rochester or NYC. I live in Albany and travel to NYC to. Center of Excellence.

    #49427
    Rita Knopick
    Participant

    The MDS Center of Excellence in Rochester NY is wonderful. Click on contact us on this page and email the patient liaison and they will help you get an appointment for your Mother. Best wishes to you and your Mother.

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