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Old Fri Mar 25, 2011, 05:21 AM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi, just a quick update.

I received a phone call late today (Friday pm) from my haematologists secretary to let me know I have been booked in for daily IV Copper Sulfate infusions for the next three weeks. These are to start Monday morning. I haven't been told much about them, just that it will take a couple of hours a day and that I will need to come back once a week after the initial few weeks are over.

Although I'm happy to be receiving treatment, there is also a part of me that just doesn't want any more treatment. I'm a bit confused at my feelings.

Then there's the physical problem of getting to the treatment centre. It's over 60 kms each way and it's all heavy, heavy traffic. I can't drive any more and all my friends work (not that I'd ask them anyway) My Dad is 84 and although he still drives, he isn't comfortable driving outside the local area or in heavy traffic. The doctor has requested that I'm transported by ambulance and they have agreed to collect me every day at 8am and return home whenever they are available. Here we pay a levy on our electricity account and ambulance service is free, but I still feel a bit guilty about having to use their services for something as basic as getting to appointments.

Regards
__________________
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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