hi new here and need some advice

Emby,

The ferritin readings are good but as you said, there is iron around the heart. Ferrirpox will help clean this out. This is the one problem with relying on just desferal. It is not the best iron chelator regarding the heart. Ferrirpox is superior and this is why it is often used in combination with desferal. I think your sons will both show improvement with their next heart scans.

Emby,

The numbers are really really good,congrats on keeping them well chelated,still iron around the heart issue is amazing,atleast with your elder one because he is taking ferriprox which is supposed to remove iron from heart,it make me think that thalassemia can be tricky,we keep relying on ferritin readings and in the end that's not enough.

Wishing you luck with T2*,and lots of love for your young men  .

Zaini.

by the way you look fab in that pic!   

that was a good day. I was holiday.
I can see that Zaini has answered your question so I don't need to say anymore.
Just remember we are all just a keyboard away.

hiya,

dore, thanks.  i hope that a t2 scanner will be available for you very soon.

andy, zaini...i feel the best way forward is combination therapy (desferal and ferriprox).  i am aware of the risks involved with ferriprox and we continue to monitor this weekly with blood tests.  my oldest, thank God, is tolerating it very well........you know..i had a queasy feeling in my stomach that after all those years of desferal....and being really strict about it...their bodies had plans of its own!  although there may be more medication to take and as much as i hate all the needle and stuff, i feel this is definately the best form of treatment...and, most importantly, the boys feel the same.
my oldest has been on ferriprox for a lttle over 2 months now  and i hope, God Willing, it has made a difference.
i feel everyones body of coarse has its own level of tolerence.  there is a 50 year old man in london with thal major who is of normal height and build, is sooo young looking, married with children, a boy and a girl,  both completely healthy.  he was on and off with desfearal for some time and i think he now takes oral med but i'm sure that he did not have t2 or dexa scan back then but....hey!...hope and inspiration all around!

cherieann....nice to know you're all a keyboard away.....but the time difference thing.....have to wait tiil next day for reply!!

i pray God keep you all in good health             

I know the time difference can be annoying but I am so wrapped to finally have a place to come to.
I can still remember the times before internet where I had no body to confer with and know that it was just me and the haematologist. Back then it was unheard of in New Zealand. My blood was sent around the world to find out what I had. Plus the haematologist reminded me that it would be her taking me as far as her knowledge. I really was a guinea pig.

Cheriean,
it mean's u can say that your blood visited many countries  wow  Tourist Blood Sample 


Umair

Tourist blood sample 
It probably rode on Air New Zealand then Quantas, then Polynesia Airlines, then American airlines and then returned home on Emirates. (only a guess)