scans and tests

hi all

im writing this because i am just a tad peeved and  in need to vent.  christian my four yr old has been transfusing for a year now. we live in sydney, go to one of the best childrens hospitals to be treated, make my appointments for my son, send off my application for my pump 4 weeks ago to start chelating, go to meetings and keep udated, get on the computer to learn more.  i'm doing my bit as a parent

BUT!!!!!!!
why has he been transfusing for a year and has not had any heart scans, hearing tests , eye sight tests??   I rang the hospital and they said "oooh he hasnt had any done? that's unusual".  why do i have to tell them what my son needs.  isnt it there job???

ALSO!!!!
My application form was lost in mail.  pump not on its way.  i had to ring and follow that up.  and by the way how did i know my son needed chelating, i had to tell the doctor it was year since transfusion and we should look into his ferritin levels.  i had to chase up the results because no body rang me.

this is SYdney Australia!!!  what is going on.??  i feel like i am team christian.  he does not have a doctor that cares about him.  i am so peed off with them all. 

what happens if i got hit by a bus tomorrow.  there'd be no follow up.  would he still be transfusing with no talk of chelating until one day the haemotologist comes down to the ward  lokks at christian all grown up and says my you don't look well, have you been compliant with your chelation??  and christian would say no because i don't know what chelation is !!!!  just a hypothetical.

oh the poor key board.  i just took my frustration out on the poor thing.

taa
vic

hi Vic,
I know where your coming from,as a thal patient from syd also,i have had to be  my own doctor for years telling them when i need tests done etc.To me this is nothing new,sometimes feels like the doctors cant be bothered! but as for yearly tests that need to be done for your son is:- eyes,bone density,heart stress test,hearing.Thats all i can think of for the moment.If i remember any others ive left out i will let u know.I also feel the same sometimes "frustrated" due to me having to find out info etc.But thank goodness we have this site which helps us!

Hi Vic.
Prior to accessing this site I almost went crazy with the pillar to post attitudes from the doctors treatment of my case.

I can emphathy  with your situation,It seems as if human lives is of no consequence anymore.
I have said it before and I'm saying it again the health professionals need to be more accountable towards our lives.
It is very fustrating and it can drive someone to madness and desperation.

Please Keep your cool, Try harder to get the doctor attention and stress out, as to how you would like your sons case to be dealt with.
 It's good you can vent here and you are most welcome that is because most of us at some time or another has been through the same situation,and its not acceptable
Have courage and goodluck always
  Regards Kathy

so this seems common even in developed countries we have to be on top of the system and be organised.  i find i write everything down so i keep a track of what needs doing.

thanks guys
vic