Discussion Forums > Thalassemia Major
I feel i have reached the end of my road.....
nice friend:
:whew :whew :whew :whew :whew :whew :whew :whew :whew :whew
i dont know wat i said and how i wrote that much long post :scratch :scratch :scratch :scratch , its really dificult for me to read and understand my posts bcoze my posts r too long and too dificult to understand for me too :grin ..
Zaini:
Umair,
All you need to do is get busy,look at Maryoom,she went bungee jumping,and i don't know why but i am really feeling excited for her,that proves that thals can do anything,you just have to have the will and belief in Allah :thumbs
Zaini.
nice friend:
Zaini,
yeah , i m seriously llooking forward to start doing sumthing and add more activities to my life. i m looking for to not to sit infront of Monitor's screen all the day and use computer time to time a day , and start some physical and mental exercises and activities ... spending all the time on Pc is a boring activity and i have to avoid feeling bored to avoid thinking negatively , i think i have to keep my mind busy in a few more activities .. i will jjoin my family business, the only reason that left behind the delay of start going there and joining my bro there is power load shedding that is more worsen at the site of comercial area where we have our shops than the area where our home is located ... waiting for the right weather to go and join them bcoze load shedding probleme isn't gonna fixed till the end of this year and and the minister of this sector is unable to tell when it will b fixed :grin .... i m feeling excited to hear about maryoo's experiece bcoze it a new path way is open now for thals and happy to hear that thalz are challanging everything that people think they (thals) cant even think of that , now thalz are doing the things those even normal people cant chalange think of that ,, really glad to hear this ....... but i cant go for that :grin bcoze my knees :grin .... abt belief , its the belief bcoze of wat i m here , bcoze of wat i m still alive and in good shape , actuly back into good shape .. m trying my best sis , won't to look back wat happened and how that happened but all the things that happened to has left there marks behind on me and my health , the mark's those will never fade up but i will try to forget looking at those marks and start loking on my aimz n goals to achieve them and to show all the thalz that they can get back in life to every kind of condition and all kind of damages can reverse if they comply with chelation and maintain their Hb level near normal range and to give them hope and to tell them and encourage them to never think of give-up ... and i will proof this INSHA-ALLAH (GOD's willingly) .. :thumbs :yes
(again feeling to say : plz ignore if it sound bad and if u feel anything appropriate in it then plz ignore bcoze i never mean/sound to b rude/harsh :grin )
Best Regards
Take Care
Umair
aysam:
hi how is everyone ?
update on master aysam
getting liver biopsy very soon
his iron is still very high 4000
never has his iron gotten down from last year untill today it has been over 2000
his doctor thinks he could alreday have liver damage and if his biosy shows 40 ml he ill stay in hostital for 1 year with a iv intrevein ???
can somene please explaine doctors telling me that they dont know why
maybe the exjade isnt working for him he is on 625ml
maybe its iron overload
maybe false reading all the time
maybe he always has infections wich cuses high iron lveles mmmm
maybe maybe maybe not good enough
results AST 230
ALT 688
BILIRUBIN TOTAL 8
CAN SOMENE EXPLAINE what is happeing
is it from exjade is it from to high iron for so long
is exjade not working
to much infections
and if his iron levels show 4000 and been high for 1 year over 2000 can it be liver damage alreday is it revesable
can he have like doctor said over 40 ml
i told doctor that hy we dont use desfral and exjade i read artical from dr ali taher and thats hat there doing if exjade dosnt work alone shhe siad it sounds like a good idea am i the doctor knw
oh yes i told u all about kids i have in my care b4 they are looking for new home for them
everytime i book to go to lebanon somthing bad happens i am booked for 14 september
and today doctor said not advise to travel
she said if his liver biopsy shows 40 ml meens he needs 24 7 desfral
help me what should i do she said she thinks its noit that much but thinks its nearly there ?\
SHOULD I NOT DO THE LIVER BIPOSY AND JUST GO ON THE 14 SEP AND DO IT LEBOANON
or listen to her i am so confussed
help me is there another way getting rid of the iron like noit 24 7 in hostpital
please advise everyone
i was going to see professer ali taher
ive been saveing for so long for this and evertime something bad happens
should i do the test then leave do u think that the test can be bad with his iron over 2000 for one year
and no 4000
please
Zaini:
Mariam,
How much is Aysam transfusing,i mean how frequently? How much blood does he get in every transfusion,what amazes me is that he is very young to have that kind of iron over load,and how can his liver be damaged,it takes years to build up that much iron.???
I don't know anything about Doctor Ali Taher,may be Manal can tell you anything about him.And why are you doing liver biopsy,is ferriscan or SQUID not available in Australia?
May God bless you and your family.
Zaini.
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