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Old Wed Apr 23, 2008, 11:31 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
I can understand

Hi, I have also had just about every test known to man. This includes 5 BMBs as well. However, unlike you, I have a low WCC as well. My specialist has agreed to regular blood transfusions with no more diagnostic tests unless my blood tests change dramatically.

This way I can have some routine in my life and no longer have to wait until I become uncomfortable with shortness of breath. He told me that he prefers to keep my Hb above 80 because chronic anaemia can cause heart failure. I have already had heart failure once from pneumonia and it wasn't very pleasant. Lungs already full of yucky stuff and then filling up with fluid on top of it.

My counts were low but fairly stable for the first couple of years but then about 4 years ago they took a nosedive and that was when I became transfusion dependant. I now have 5 units of blood every 5 weeks. I do not qualify for GCSf because my white count, while always low, is very rarely critical.

My diagnosis is : Bone marrow failure of unkown cause, probably evolving MDS. I have made up a new name : RACL (refractory anaemia, chronic leukopenia) describes it perfectly but doesn't sound as nasty.

I have to go now and put my dogs on the treadmill, sometimes I think it would be easier to wrestle a crocodile.

Bye for now

Chirley
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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