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IV desferal

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Offline nice friend

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Re: IV desferal
« Reply #15 on: March 13, 2009, 09:02:23 PM »
Hi Andy ,
thanx for in-time/well-timed reply , i attached 2 more vials with drip-set, another words, i replaced the empty drip an attached new one ...

when i saw that 1st 2 vials are near to finish, i was confused wat to do , bcoze it was mid-night here and doctor's availability was out-of-question . soo i decided to ask here on forum and got the answer , Thanx Again, Andy  :ty ...  My probleme is solved .. well, its 02:03 Am here :grin ....

Take Care
Umair
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
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Umair
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Offline Sharmin

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Re: IV desferal
« Reply #16 on: March 14, 2009, 04:49:46 AM »
Umair,

I am so glad that you are getting around the clock IV desferal.  This will definitely help get rid of some of the iron from your heart and set you ahead in terms of your chelating.  I am hopeful that your ferritin will be below 2000 after this IV chelation session.  Most importantly, I hope that the L1 and desferal together are making your heart healthier.

When will you be having your echo and your cardiac mri? 

Sharmin
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Offline nice friend

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Re: IV desferal
« Reply #17 on: March 14, 2009, 01:54:34 PM »
Sharmin,
i m planning to visit my doctor on 20th march (Friday) and to get the advice to my doctor For ECHO in that upcoming visit , and i will talk abt availability of T2* ..  Thank you for your concern and for th regards as welll ....

Take Care
Umair
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair
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Offline Sharmin

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Big game for little A
« Reply #18 on: March 15, 2009, 07:47:57 PM »
Hey guys,

Little A thanks you all for your congrats after last week's game.  So far in the play offs his team has won 1 game (score was 7-0), yesterday the game was tied - so they had 4 over times! and they lost in the very last overtime (score 3 - 2).  If they win today they will continue in the play offs so he is pretty excited.  I think that his hg may be starting to come down so I hope that he will not burn himself out.  I noticed that he was changing shifts a little quicker than usual yesterday, I am suspecting he was burning out a little. 

Thanks all,

Sharmin
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Offline Andy Battaglia

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Re: IV desferal
« Reply #19 on: March 15, 2009, 07:56:23 PM »
Sharmin,

In addition to his regular supplements, keep the carbs flowing and consider some extra B-complex on game days.

Good luck little A! I guess the Syracuse basketball team wasn't the only tean with multiple overtimes this week.
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Andy

All we are saying is give thals a chance.
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Offline Sharmin

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Re: IV desferal
« Reply #20 on: March 15, 2009, 11:32:59 PM »
Andy,

Little A's team won 3 - 2 - and little A scored the game winning goal!!!  I am so proud of him :) 

As per your advice he is having pasta for dinner  :food
He usually has B complex 50mg  - should I give him 2 pills on game days?  He has another game after school tomorrow. 

Thanks,
Sharmin
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Offline Manal

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Re: IV desferal
« Reply #21 on: March 15, 2009, 11:36:14 PM »
Congratulations Little A ,i am really always proud of you

manal

 :congrats :congrats :congrats :yay :yay
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Offline Andy Battaglia

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Re: IV desferal
« Reply #22 on: March 15, 2009, 11:47:53 PM »
Way to go, little A! I am so proud of you.

B vitamins do go through the system quickly, so yes, on game days have him take it twice daily, morning and night with meals. Vitamin D may also be of value.
By the way, my favorite musician, Neil Young, another Canadian, is in his 60's and still rocks. When he tours, he makes sure he eats plenty of carb foods like pasta, to help keep his energy levels up, as he bounces around the stage with his guitar.  Hehe, he's also a big hockey fan.
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Andy

All we are saying is give thals a chance.
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Offline Sharmin

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Re: IV desferal
« Reply #23 on: March 16, 2009, 12:00:47 AM »
Manal and Andy,

Thank you  :hugfriend

I'll give him a B-complex with his Pasta :) 

Sharmin
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Sharmin
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Offline Zaini

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Re: IV desferal
« Reply #24 on: March 16, 2009, 02:01:36 AM »


                              Little A

Auntie Zaini  :wink .


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Offline Sharmin

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Re: IV desferal
« Reply #25 on: March 16, 2009, 03:52:14 AM »
Zaini, Little A says thank you  :hugfriend
He had a few giggles for the little green smilies with pom poms :)
We are so lucky to have so much support  :hugfriend

Sharmin
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Sharmin
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Offline Dori

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Re: IV desferal
« Reply #26 on: March 16, 2009, 07:10:12 AM »
Hi little mister A:

 :congrats

Groetjes,

Dore
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Offline Sharmin

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Re: IV desferal
« Reply #27 on: March 16, 2009, 02:55:52 PM »
Thank you Dore  :hugfriend

He has another game tonight - but he has to play against one of his best friends (my friend's son) so we are a little torn...

Thanks again guys, little A is learning so much from all of you - most importantly that thals can do anything! :grouphug

Sharmin
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Offline nice friend

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  • If I Can, Why Not You??... If I Can U TOO !!!...
Re: IV desferal
« Reply #28 on: March 16, 2009, 05:18:09 PM »


Hey Little A ,
its superb to hear that all buddy .. keep it up ...
i hope to hear more news like this one from you in future as well .
take care buddy
Best Regards
Umair
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair
*

Offline Sharmin

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  • Little A
Re: IV desferal
« Reply #29 on: March 17, 2009, 03:02:06 AM »
Hey guys,

Update from todays game - the game was tied 2 - 2 - then little A scored a goal for his team in the third period, but the referee did not see it go in so they did not count the goal.  The parents and coaches tried to argue it but the referee did not give them the goal - so in the end little A's team lost 3 - 2 and so they are out of the play offs for this season.  We have a tournament next week - but little A has rituximab the first day of the tournament so we will see if it is a good idea to let him play. 

We have a blood test tomorrow morning - this is his third week post transfusion but he has been playing a lot of hockey and he fought a cold for a few weeks so I am hoping that he is not too low. 

Thank you all for your encouragement  :hugfriend :hugfriend

Sharmin and little A
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Sharmin
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