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I don't know either
Hi Birgitta,
I don't know why I get so much blood every 5 weeks either. I used to get 4 units every 4 weeks but even that seemed like a lot of blood at one time. The day after my last transfusion I had an episode of L hand numbness, headache, visual disturbance, vertigo and nausea. The doctor thinks that I had a mini stroke but I think my blood was just very thick because I'd had so much blood the day before.
I might ask the doctor if I can have less blood more often and see how I go. He is also worried that I could develop heart failure and that is why he gives me so much blood.
It is turning into a nice cold (10) evening here so I might go and make some soup. Then into a nice warm bed. You must be coming into some lovely summer weather there at the moment. I hope you get to enjoy it.
Bye
Chirley
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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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