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Old Fri Dec 12, 2008, 12:42 PM
Birgitta-A Birgitta-A is offline
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Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Mother with MDS

Hi Francine,
Good that your mother doesn't have any chromosome aberrations ! I have 12p- and X-. 12p- is a good aberration but X- is not in the best group. Together they put me in the intermediate group for aberrations.

My transfusion interval has mostly been between 4 and 6 weeks but when I have been "prepared" for two small operations (one was a port-a-cath) I got more frequent transfusions. Aug 2007 I had neutropenic fever after fuor infections and all my values were very bad for a long time. I got many transfusions before I was OK.

One unit of packed red blood cells should increase the Hgb about 12 units - if my Hgb is 90 and I get two units of packed red blood cells the Hgb will increase to 114.

Then I have a lot of antibodies that gives haemolysis (the red blood cells are destroyed). I always get a drug similar to Prednisolone to prevent haemolysis together with transfusions. I had these antibodies from start and it has always been difficult to find blood for me - I leave blood for cross test the day before transfusion.

My dr thinks the ferritin level should be about 1000- but I read an abstract from ASH 2008 that a ferritin value over normal (250) could be bad for red blood cells. Unfortunately Desferal gives more adverse reactions if the ferritin level is so low.
Kind regards
Birgitta-A
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