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Old Thu Sep 10, 2009, 07:52 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Thanks for that Frank.

Turns out that I have had a hidden infection. I attended my GP with fever and sore ankle, was taken to hospital by ambulance and had to be pumped full of fluid to try and keep my blood pressure up.

We don't know where the infection started but it has lodged in my left ankle which is taking a long time to improve. I'm at home now on a CADD pump which is giving me antibiotics every 8 hours with a low dose antibiotic flush every minute or so as well. I also go to day care every day to have more antibiotics and have my CADD pump refilled.

The interesting thing about all this, is that when I was in hospital my blood transfusion requirement got worse. Instead of having a transfusion every 2 to 3 weeks, I needed a transfusion every 2nd day. The doctor said that fever can eat up red cells as well as knocking my already fragile bone marrow around. The good news is that my neutrophils responded and went up to 1.5 for a day before they fell to between .5 and .9 again. I know that it was a small short response but it was great that the neutrophils came up at all. Also, my platelets dropped which is unusual for me. The doctor said that I had petechii (sp) and purpura on my ankle as well as the swelling etc and I assume this is where the platelets went.

Any way, what I was getting at, was, that my hands have been the same color ever since I've started on the intravenous antibiotics. I think the color change must have had something to do with the infection but I don't know what. Maybe it's because I have an IV running into my port continuously now as well.

I know that this is a long post, but, I'm not supposed to walk around much and I'm starting to get very bored and restless. I think I'm going to get desperate enough to watch THE BOLD AND THE BEAUTIFUL......now that's desperate isn't it??

Thanks again for the reply.

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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