Hi all. Finally have a decent computer to work on as my other one has been working so hard with both personal and work committments. It needed a rest.
This year has seen the new opening of my Haematology Day Ward which was very exciting to see it become real after many years of talk.
Both myself and another older male were asked to be guest speakers as we were the oldest patients or in my case, a large piece of the furniture.
It was a very emotional moment for me as I recalled the before to now moments.
I am still a very shy speaker in public but with opportunities like this, I am coming out of my shell. At the moment I can't find my photos but when I do I will post it.
This year has also seen me write a letter to our Prime Minister addressing key issues I am having with my desferal.
Pharmac have a tablet in the pipeline which is intended for patients like me who take desferal but still have a major iron overload.
Unfortunately this tablet is not exjade and so I have written a letter outlining why exjade would be helpful to patients like me.
The difference between the two tablets is that the one they are intending to subsided is taken only once a day but you still need to have the chelation therapy. Exjade wil be taken 3 times a day instead of the chelation therapy. I have attached a copy of my letter should you like to read it. At the moment I have crossed all my fingers and anything else while the Minister of Health makes his decision.
