especialy to Andy question abt chelation

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Offline nice friend

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Re: especialy to Andy question abt chelation
« Reply #90 on: March 23, 2009, 01:34:26 PM »
Dore,
it was realy difficult to read your reply ( bcoze of colour :grin ) and i m feeling very jelous (a joke) that my Fe is high and your ......  but its bcoze of hard work  , soo you deserve it ... :congrats ...  its gr8 to hear that your Fe is dropping, keep it up :thumbsup ... about iron pills , not in soon future :grin ...  (a Reply in short time) i will try to reply in detail very soon ...

Best Regards
Take Care
Umair
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 Dori

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Re: especialy to Andy question abt chelation
« Reply #91 on: March 23, 2009, 01:37:09 PM »
Oho, I beated you. I am sure you will pass me really soon. Being ill is not the good thing when you try to ski hard for the mountain to the sea (or something else). Oh, i hear everyon talking about iron pills. One girl of the Dutch thal organisation had immediately to stop with chelation. She has only a fe of 40 at the moment! Btw I know now how happy one can feel when you see such drop. Umair dont be afraid when you dont see me only today. Itunes had the clever idea to instal Bonjour (I dont know even what it is) but it is nagging about a well-know virusscanner (which I dont want to have) and that always throttle my msn.. :biggrin

Better?

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Offline nice friend

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Re: especialy to Andy question abt chelation
« Reply #92 on: March 24, 2009, 07:31:02 AM »
Dore ,
Thanks for changing font colour :grin .. i m not beated you, won this time ... its good to see your Fe is decreasing .. mine is also decreasing although slow but it is ... yeah being ill is not something good ...me and iron pillss hahahaha it will take too much time to get on this stage .. i think that Dutch girl were to compliant with chelation and never checked her Fe during that time ... yeah , if my Fe drop like that girl i would be very happy and first thing that i would like to do is to eat prawns and then have a few Transfussions to maintain my Hb between 11-13 ... and to enjoy something like this :happydance ...
@ virus scan , ( its out of the topic of this thread :teehee ) i dont like virus scanners and i install virus scanner just before re-installing windows :teehee ....

Best Regards
Take Care
Umair
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 Andy Battaglia

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Re: especialy to Andy question abt chelation
« Reply #93 on: March 24, 2009, 03:02:42 PM »
Use the free version of Avast for virus scanning. It's free and one of the best programs out there. You should always have a virus scanner on your system, along with free anti-spyware programs. Maybe I should do a side post on all the good free programs that can protect your computer. Even our thal world is not immune.
Andy

All we are saying is give thals a chance.

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Offline Dori

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Re: especialy to Andy question abt chelation
« Reply #94 on: March 24, 2009, 03:27:27 PM »
Use the free version of Avast for virus scanning. It's free and one of the best programs out there. You should always have a virus scanner on your system, along with free anti-spyware programs. Maybe I should do a side post on all the good free programs that can protect your computer. Even our thal world is not immune.

I have one from the provider, but microsoft does not understand it is one. My notebook is at the egde of life and death. I just hope he will be alive untill the day of summer that I got my "Propedeuse" of College Law.

Nevertheless it is a good idea.

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Offline nice friend

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Re: especialy to Andy question abt chelation
« Reply #95 on: March 24, 2009, 04:07:15 PM »
Andy and Dore ,
my computer is very slow to instal a virus scanner on it soo, i decided to put it on chelation ( removing all the data ( Formatting Drives )  and re-instal the windows l, like chelator remove's all the iron ) when-ever it slow down or when-ever it start giving errors :grin ... but my favr8 virus scanner is norton but if you're unable to instal norton then McAfee's all in one virus protector is also good :thumbsup ... hey buddies, this thread is running out of topic ...

Umair
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 Andy Battaglia

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Re: especialy to Andy question abt chelation
« Reply #96 on: March 24, 2009, 04:17:59 PM »
I used Norton for years and it became too cumbersome and slow so I switched to FREE Avast. It was a very good decision. McAfee has never made a program I liked. If you want your comp to run faster, uninstall Norton and switch to Avast.
Andy

All we are saying is give thals a chance.

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Offline T @ r ! Q

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Re: especialy to Andy question abt chelation
« Reply #97 on: March 25, 2009, 05:10:08 AM »
Forget window$. switch to Linux and you will not have to worry about any virus  :thumbup
Falling down is not defeat... Defeat is when you refuse to get up...
The one who kneels to Allah, can standup to anything.

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Offline nice friend

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Re: especialy to Andy question abt chelation
« Reply #98 on: March 31, 2009, 06:04:51 AM »
Must Read It.....

Desferals 3vial of 500mg in 10-15 hours a day , 2-3 times a week,
At the time my doc prescripted me this plan, i was very moody at that time , and it was dependent on my mood only. i wasn't keen in chelation. i wasn't compliant and faithful   in chelation .. sometimes, i dont have even one day of chelation between 2 Transfusions , at that time . but when i took interest in chelation and bcome compliant to chelation  and determined to take S.Fe under 1000 ( so i can be able to start Exjade ( AKA Asunra ) as my doctor gave me intiative to start exjade if my S.Fe would  below 1000 ) , i asked a few questions on this forum and in the light of answers i made my own chelation plan ...here are those Answers .....

once, Zaini Replied to my Question :
Quote
A doctor from Novartis,while giving us an introduction to Asunra,told us that a unit of blood (approx 300 ml) contains 250 mg of iron.

& C.F Replied to same Question :
Quote
one unit of blood contains approx 250mg of iron. The average dose of desferal infusion for 6-8 hours removes approx 6-10mg of iron. The iron accumulation ofcourse depends on the frequency of blood transfusion and number of days of desferal infusions.

Yeah, I replied As Well :grin .
Quote
thinking the same .. 250 mg per Tx and then minus only 8- 10 mg per desferal therapy .. its mean i have to be on desferal on daily basis after a Tx , no rest between to Tx , if i use Desferal alone 25 times then it will remove the iron equel to one Tx .. and i m unable to have 25 desferal therrapies in 15 day ( between two transfussions ) ... combination therapy is the only choice ...

if 6-8 hours chelation removes 8-10 mg of iron , so i increased the duration from 12  to 23-24 hours chelation and 4 days a week ...............
if 6-8 hours is removing 8-10mg  then 20 hours of chelation remove almost 20mg  23multipply by 4 = 92mg per chelation + 9tabs a day 500mg deferiprone ... it was good but S.Fe was decreasing very slowly....

===================================
it was my Chelation plan before last in last October when my S.Fe went high again : From Aug to Oct-15
august2008  : S.Fe   2902
oct-15-08   : S.Fe  3613
[/color]
 
 ===================================
Then i made my own chelatin plan for my conditions and blood need..
let's see, i made a chart of both (Blood need & Chelation) and added the gathered info about Desferal's efficiency ... 1st i asked my doctor ,how much blood i need and after how many days ??? she told me " you should have Tx between 10-12 days ....
Okiey , now i have 10-12 days to encounter the iron that infused with blood and the stored as well ..

i used to have a Tx after 10-12 days and 250ml of blood ... =  250mg and 12 days
per 1000mg  desferal chelate's 90mg iron ..and i was permitted to use only 1500mg/day..  that means i have to wear pump for 4 days... i hadn't think of making a plan for chelation with blood transfussion's schedule , at that time ...
i was using 3 vials a day , soo i made a chart , that mean's i was chelating 135mg of iron per chelation day  ... when i got my S.Fe reports , i got to know that, this plan have failed, .. i re-calculated all the things and got that,  it wasn't chelating even the incoming iron from Tx (250mg) .. here's the calculation 90mg iron x 3g DFO = 270mg   .... . and i had 1 or 2 extra Tx during that time .... soo, this plan was failed and it wasn't a good plan ... slow decrease in iron and if you have an emergency and got to have an extra Tx  you iron will jump-up high with this plan....
======================
after october 15  : when i got a reply that made easy to make/revise my plan
======================
And then Eponine Replied in a little more details : and very accurate info, it helped me to make the right plan ..Most Accurate ... i made my pla according to this one. ...
She Sent  This info in thread on same Date i got my elvated S.Fe report , Thanx  Alot Eponine , for a great Favor ....
15-oct-2008
Quote
An average unit of blood contains about 250ml of packed red cells ie 250 x 1.16 or 290 mg of iron. For example, a patient weighing 40 kg receiving 3 units a month will receive 3 x 12 x 290 = 10440mg/year = 28 mg/day of iron a day through blood transfusions.

Each molecule of DFO (Desferal) binds one atom of iron, forming a very stable complex. Theoretically, 1g of DFO can bind almost 90mg of iron. In reality, only 10% of the drug binds iron before excretion.

Then i revised the plan and made an agressive one : November to January and Januar to March , i have been on this plan, it is the most succesful plan....
regularized my Tx and "No" more extra Tx, if extra Tx then Extra Chelation as well :

250mg iron/Tx , 10-12 days gap per Tx .. i was perrescripted to take only Desferal 3 vials of 500mg/Day ...
Duration of per chelation 21hours A day , Desferals vial 3 (500mg) , and 5-6 between 2 Transfussions ( 10-12 days ) ..

Let's see the results by calculations :
3 Desferala x 6 Days  =  18 vials ( between the gap of 2 Tx = 12 days )
18 vials of 500mg     =  9g DFO
9g DFO                  =  bind's 810mg iron

if you're getting 250mg iron per Tx ... I think, its enough and Great to chelate 810mg iron between 2 Transfussions ...
its better to wipe out all the iron before that make some damages to your boddy ..

[b[soo its good to work hard now and rest/relax for ever in your life , instead of working all the life ( trying to recall the name who said this ....[/b]

S.Fe in October 2008 :   3613 ng/ml
S.Fe in January 2008 :    2330 ng/ml
S.Fe in March   2009 :   2060 ng/m

Q  : Why S.Fe came down on slower rate than previous two results in March-17's Reports ???
A  : I have been very sick several times From January To march ,
5-12 Feb Stomach ache and 1 or 2 extra TX and "No" Chelation. during this time .( withing a few days after recovering to Stomach Ache ).i had Tx on 01-feb and back to chelation on 16-feb ...
23-Feb To March-01 Malaria and 1 extra Tx and "No" Chelation during this time. i started Chelation back after getting to normal ( withing a few days after recovering to Malaria ). i had Tx on 21-feb and back to chelation on 6-march ...

I hope this Will Help you ....
P.s : i m on Ferriprox500mg, 9 Tablets a Day as well ... and its played its significant role in decrease of S.Fe Levels ...

Best Regards
Take Care
Umair
« Last Edit: March 31, 2009, 06:13:44 AM by nice friend »
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 Zaini

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Re: especialy to Andy question abt chelation
« Reply #99 on: March 31, 2009, 09:52:59 AM »
Umair,

You are really good at maths  :biggrin you should resume your studies.Its good to see you are taking good care of your self,good luck with chelation.

Zaini.
^*^Xaini^*^

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Offline T @ r ! Q

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Re: especialy to Andy question abt chelation
« Reply #100 on: March 31, 2009, 11:11:11 AM »
Quote
Umair, You are really good at maths   you should resume your studies

After reading all these calculations, i had to drink an extra tea today.  :crackup I think i need to take a day of to catch up with the calculation. :rofl


Good job buddy. And Zaini is right, i've been trying to convince you on this since ages. :waiting
Falling down is not defeat... Defeat is when you refuse to get up...
The one who kneels to Allah, can standup to anything.

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Offline nice friend

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Re: especialy to Andy question abt chelation
« Reply #101 on: March 31, 2009, 11:52:34 AM »
Hi Zaini and Tariq ,
Thank you for encouragement and having confidence in me that i can contineu  studies, yeah i remebr Tariq bro that you tried very hard to convince me ,but :grin ....... these was the simple, easy  and basic calculations , nothing more than it ...  i think you people want to punish a few teacher of my area's school ... if i contineu my study wat kind of student i will be .. i m gona post a little hint like something please check ... 
http://www.thalassemiapatientsandfriends.com/index.php?topic=2750.0

Best Regards
Take Care
Umair
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 nice friend

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Re: especialy to Andy question abt chelation
« Reply #102 on: April 28, 2009, 08:14:19 PM »
Hi buddies ,
Guess Wat  ??, i mean guess wat i have to share with you this time ,,, yes its my S.fe Report .... here it is ..
Quote
My Latest S.Fe Report , done on 17-March-2009
                                                    Normal range (for my age)                         Result
Serum Ferritin                                      30 - 400 ng/ ml                                2060 ng/m

Latest S.Fe Report  25-April-2009
                                                    Normal range (for my age)                         Result
Serum Ferritin                                      30 - 400 ng/ ml                         [bgcolor=#ffffff]1384 ng/ml[/bgcolor]

Hurraayeee ....  althoug i skipped chelation for 3 Transfussions After getting results of S.fe last time ( 19 march ...) i restarted chelatio on 5th of this month ... i did 6/24 IV after that and then with pump and results are much better than previous one report .. i m soo HAPPY  this time ..... Hurrayeee :part :stars .... i have collected my LFT report as well and i wil share that with you in another thread ...

 :thankyou2 :thankyou2 :thankyou2
Edited : Thank you all for alot of encouragement and support , without that i think i wasn't going to start chelation again ..... Thanx alot for pusshing me forward to start and keep ON the Chelation ... Thanx Alot ...
A Special and BIG thanx to Andy and our moderetors ( how can i forget you Tariq bro , and all other member who encouraged me to the same cause by PMs , thanx alot budidies .. .....)
 :thankyou2 :thankyou2 :thankyou2

Take Care
Umair
« Last Edit: April 28, 2009, 08:52:32 PM by nice friend »
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 Andy Battaglia

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Re: especialy to Andy question abt chelation
« Reply #103 on: April 28, 2009, 09:07:36 PM »
 :congrats  Umair. What a difference one year can make when you work hard.
Andy

All we are saying is give thals a chance.

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Offline KHALIFA

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Re: especialy to Andy question abt chelation
« Reply #104 on: April 28, 2009, 09:17:03 PM »
  :congrats          am very happey for you but also as i said on another topic drinking tea is real helpfull to reduce the iron :coffee  (TEA NOT COFFE)
                                           khalifa
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