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Old Thu Apr 8, 2010, 03:18 AM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi,

Well I'm in day care post BMB and having a 3 unit transfusion. I think I'm as about as angry as I've ever been and I don't know what to do about it.

My haematologist walked in this morning and said that he thought my GP must be worried about my Neut count and then he laughed. I told him that I was worried too, he replied that I shouldn't worry and that it was okay for me to go out and do whatever I want. Then he started the BMB, I went to sleep and when I woke up he was gone. The nurses tried to contact him about Lasix with my transfusion (4 hours ago) but he hasn't answered.

My blood test today showed that my Neuts have increased to 0.2 again and my lymphs are 0.2 as well. I think this is still very worrying low especially when the Haematologist had a nasty cold and didn't wear a mask.

I have to come back in a weeks time for the BMB result, so a least another week without any Neupogen. Cranky isn't the word for it.

I would like another opinion but without the last 3 BMB results it would be difficult for another doctor to determine the problem. (my haematologist does his own BMB and because he is in charge of a laboratory as well he does the examination as well.) I have never been given a copy of the BMBs that he has done.

Just to top off a great day, I just got a phone call saying the next door neighbours have pulled down the dividing fence (newish fence in good condidition) and their 2 dogs are wandering around in my yard. I'm pleased I locked my dogs in the house because my neighbours dogs are big (don't know the breed ? ridgebacks) and loud and agressive. I'm just in the mood for a fight, so they had better have put the fence up by the time I get home. These neighbours are okay most of the time but they regularly get drunk then they fight and swear (she's the worse) and run around on the street shouting at each other and threatening to kill people. These are the only neighbours like this and everyone is sick of them destroying the peace in an otherwise peaceful neighbourhood.

Neighbours, can't live with them, can't live without them. (but I'd like to try)


Wishing you a better day than I've had.
__________________
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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