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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

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Old Tue Nov 8, 2011, 01:44 AM
Andrya D Andrya D is offline
Join Date: Oct 2011
Location: Kansas City, MO
Posts: 21
I'm So Scared!

My day 100 was on Friday (Nov 4). My next appointment is my regular weekly appointment and it is tomorrow. I know that some of my results may not be in, but most of them should be. Over the last 3 weeks, my bilirubin went from 0.6, to 1.6 to 1.9 to 2.2. My other liver functions tests are slightly high, but nothing to be worried about really. My lactic dehydrogenase was high too. My red blood cells and Hbg were the lowest they have been since I got out of the hospital.

Without going to anymore details on my labs, this is what I am thinking. My urine is dark, most likely caused by the elevated bilirubin OR from hemolysis of my Red Blood Cells. The lactic dehydrogenase as raises when you have red blood cell hemolysis. So, low RBC, low Hgb, high bili, high LDH and urine being dark no matter how much water I drink, sound to me like my PHN is back or worse.

Does anyone have any information other than let the doctors figure this out? I have an appointment tomorrow and I am scared to death!
Andrya D., mother to Kellan (3/22/2011)
Severe Aplastic Anemia (12/2010); MDS (7/2011); PNH (7/2011); BMT (7/27/2011)
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Old Mon Nov 21, 2011, 01:40 PM
mscrzy1 mscrzy1 is offline
Join Date: Jan 2011
Location: California
Posts: 103
Sorry, I don't have any words of wisdom for you. I hope that your appointment went ok and you're feeling more confident and less fearful today.

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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