Door Thank you so much for your offer. I will keep it in mind.
I had an appointment with my haem last week and was informed that to date only one person in NZ has received funding for the exjade and another patient pays for it out of her own pocket.
Four other haems have been turned down as well and would now like to join forces with us to address the reasoning behind the decision. For my case they felt that we hadn't addressed all avenues and would like my port to be taken out and a new one put in, then we are to redo the desferal through it.
My haem told them that we have done that and it wasn't a good option to take the port out because what if they couldn't find a good line for the new port.
My answer was a flat no!
Its okay for these committee members to suggest such a thing
but I'm the one who has to go through it all
and know that it aint a good idea.
Now I am getting word through my pharmacist that Pharmac are looking into my case again.
I am crossing my fingers and praying.
If this don't work then I will let you know Door.
Nice friend - thanks
