Hi guys
Today has been a very eventful day.
1. I had a visit at school from a lady who works for the New Zealand Blood Foundation. She came to inform me that I will be interviewed about living with Thalassaemia for tv. This is a campaign to try and get more New Zealanders, especialy the Polynesians to donate blood. I think it will go on t.v that day in conjunction with World Blood Day.
2. Saw my specialist after school today and we nutted out another special authority form in regards to changing the desferal back to the old form. I have been having major problems with my desferal as Pharmac changed who made it and the stability only lasts less than 12 hours so while my IV is running, you can see it chrystalizing.
Was told by Pharmac not to submit special authority for exjade as they are having a committee meeting middle of this month about the possibillity of funding.
So we decided to just keep pushing about the desferal being remade by old company.
Have to wait and see what happens.
3. The good news however is that my ferritin is at 3256 which is great because last month it was 3586 I think. So the pain is worth it. I guess.
Andy is there any chance of getting any more of the thumb tack needles?
Over here my nurse has tried to get some but even Baxter doesn't know that type. Our needles are shorter and my legs tend to really swell up. The pain is quite extreme to where I sometimes will just drop to the fall rather than stand. Your needles tend to make the pain more bearable and the swelling isn't as extreme. Hopefully they will change back to the old desferal and maybe even fund an oral chelator.
I'm trying to keep my chin up but sometimes I just want to scream from poor fustration. Politics are the bane of my life at the moment.
Still excited about the ferritin though. Hehe
My positive to help me get through