Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: hawa4frnds on November 25, 2012, 06:45:39 PM
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frndz I m hawa, a thal-major 4rm india.
Is thr any1 4rm india?
Flng nice to see ths spcl place..
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Hi Hawa,
Welcome to Thalpal.
What makes me curious is your name HAWA.
If i am not wrong then you were present at Ahmedabad Subregional conference organised by Redcross, Ahmedabad in 2008. Because at that time somebody said that "She is Hawa because she eat only Hawa"
Please correct if i am wrong.
I am from Rajkot, Gujarat.
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Hi Hawa,
Most welcome to Thalpal!
-P.
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Hi pratik..
Hi dharmesh..
Hw r u frndz?
Thanx 4 d warm wlcm..
hahaha..
U r absolutely ri8..
I m Hawa, who eats only Hawa..
I m 4rm surat..
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Hi pratik..
Hi dharmesh..
Hw r u frndz?
Thanx 4 d warm wlcm..
hahaha..
U r absolutely ri8..
I m Hawa, who eats only Hawa..
I m 4rm surat..
Great.
We're 4 from Gujarat here then, haha. :D
You, me, Dharmesh and Angel's Mom.
-P.
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Welcome Hawa4frnds,
So great to have you here! We learn so much from each and every new member and hopefully can help you so that your future health will be better than it was when you joined us. That has been our experience so far.
Best,
Sharmin
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Great.
We're 4 from Gujarat here then, haha. :D
You, me, Dharmesh and Angel's Mom.
-P.
So tell me abt u frndz..
Whr r u 4rm?
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Tell us more about you.
Feel free to ask.
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frndz visit this site..
http://saichelation.org/ (http://saichelation.org/)
Recently i came to knw abt ths.
Sai Chelation foundation (Vadodra,gujrat) has found some food supplyment based on EDTA..
they are saying that it helps to reduce S.Ferritin and increasing the tranfusion period.
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Hi Hawa,
From which city you belong to and what's your age if you don't mind?
-P.
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Hi Hawa,
From which city you belong to and what's your age if you don't mind?
-P.
hey pratik
I m 4rm surat, my age is 23
wt abt u?
wr r u doing?
tell me abt ur health
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hey pratik
I m 4rm surat, my age is 23
wt abt u?
wr r u doing?
tell me abt ur health
Great. I'm from Baroda.
Am fine. Doing my diploma in computers. I have developed diabetes in January 2009 due to thalassemia major.
What about you? Around what your ferritin stays?
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Great. I'm from Baroda.
Am fine. Doing my diploma in computers. I have developed diabetes in January 2009 due to thalassemia major.
What about you? Around what your ferritin stays?
Ohhh..
Currently my ferritin is around 9000..
Ur age?
Hw u r managing with diabities?
Nd wt is ur tranfusion requirement?
I m doing M.C.A.
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Ohhh..
Currently my ferritin is around 9000..
Ur age?
Hw u r managing with diabities?
Nd wt is ur tranfusion requirement?
I m doing M.C.A.
I'm 18. Managing diabetes - well, what I can say, I guess, trying to cope with it everyday.
I currently transfuse 500ml of blood every 3 weeks while maintaining pre-transfuse Hb above 9.0.
That's great that you're doing MCA.
-P.
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Hi Hawa,
Good to know that you are doing MCA.
Your Ferritin is quiet high , is it the latest report?
Which chelator are u using?Asunra? What's ur weight?
M taking Asunra + Desferal. Recently my ferriting came to 6454 from 11452. M also diabetic since March 2006.
This site will be much helpful to you for getting up to date info on thal. You can share ur thoughts.
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Hawa,
We can give you better direction and help you get your iron load down. Let us know what your current chelation program is.
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Hi Hawa,
Good to know that you are doing MCA.
Your Ferritin is quiet high , is it the latest report?
Which chelator are u using?Asunra? What's ur weight?
M taking Asunra + Desferal. Recently my ferriting came to 6454 from 11452. M also diabetic since March 2006.
This site will be much helpful to you for getting up to date info on thal. You can share ur thoughts.
Yeah, ths is my latest report..
Currently my weight is 61 kg
I m taking only kelfer..
I m planning to take desferal, is that painful?
I hv nvr tried it before..
And dharmesh, wt r u doing?
Study cmpltd?
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Hawa,
We can give you better direction and help you get your iron load down. Let us know what your current chelation program is.
Sir i m taking kelfer-500, 9 tabs/day..
And my tranfusion period is 15 days, 2 btls by maintaing hb around 10
Sir plz guide me
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hey pratik,
4rm which university r u doing ur diploma?
Is is G.T.U?
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Hawa,
How long have you been taking that dose of kelfer and what is your weight? Desferal would help your ferritin to drop more quickly if taken a couple times a week in addition to the kelfer you already take.
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Hawa,
How long have you been taking that dose of kelfer and what is your weight? Desferal would help your ferritin to drop more quickly if taken a couple times a week in addition to the kelfer you already take.
She told she's 61 kg 2 posts right above yours. :)
-P.
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Hawa,
How long have you been taking that dose of kelfer and what is your weight? Desferal would help your ferritin to drop more quickly if taken a couple times a week in addition to the kelfer you already take.
I have been taking kelfer since i was 5 years old.
My weight is 61 kg.
I m also thinking to take desferal, bt I am scared of the pain of its injection.
Is it really painful treatement?
I dont know much about it.
Plz tell me more..
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Hawa,
Tell me more about your history. You are taking the correct dose of Kelfer now. Have you been on Kelfer regularly since you were 5? Has there been any long breaks when you took no chelation? Has your ferritin always been high or has it gone higher over time? Have you ever tried Exjade?
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Hawa,
Tell me more about your history. You are taking the correct dose of Kelfer now. Have you been on Kelfer regularly since you were 5? Has there been any long breaks when you took no chelation? Has your ferritin always been high or has it gone higher over time? Have you ever tried Exjade?
Yes sir, i m taking kelfer regularly without any long break..
Abt 2 years ago, i tried exjade for 3-4 months.. Bt due to some side effects, i stopped taking it.. And then again continue kelfer..
This is the first time i am getting this much high ferritine..
Actually sir, since about 1 year, we were misguided by ferritine report of some lab, it was shaowing the figure like ' >1650 ', bt this time i changed the lab nd now the current report is showing ferritine as 8850..
In september 2011, it was around 4500..
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Hawa,
Have you had any MRI for liver or heart iron? I am concerned that the ferritin tests are incorrect because you say you did not have high ferritin before and your Kelfer dose is fine. MRI scans give a much more accurate measure of iron than ferritin. I have heard many ferritin reports from people in India this year that don't make any sense, so I suspect it is the testing that is the problem. Can you find another lab to do the test?
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Hawa,
I'd suggest to tell your lab to give blood sample to Rainbaxy outlet for ferritin test.
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Hawa,
Have you had any MRI for liver or heart iron? I am concerned that the ferritin tests are incorrect because you say you did not have high ferritin before and your Kelfer dose is fine. MRI scans give a much more accurate measure of iron than ferritin. I have heard many ferritin reports from people in India this year that don't make any sense, so I suspect it is the testing that is the problem. Can you find another lab to do the test?
No sir, i have not had any MRI yet..
Sir plz suggest me the list of tests for which i should go.
I have tried many labs, but every time result differs.
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Hawa,
I'd suggest to tell your lab to give blood sample to Rainbaxy outlet for ferritin test.
Pratik,
Thnx 4 the suggetion.
Next time i'll go to rainbaxy.
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The tests are a liver MRI to measure liver iron concentration and a heart MRI or T2* to check iron levels in the heart. These are very important tests that can determine your true iron load.
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The tests are a liver MRI to measure liver iron concentration and a heart MRI or T2* to check iron levels in the heart. These are very important tests that can determine your true iron load.
Sir, thank u so much 4 ur guidence.
I'll go for ths tests as soon as possible..
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Yeah, ths is my latest report..
Currently my weight is 61 kg
I m taking only kelfer..
I m planning to take desferal, is that painful?
I hv nvr tried it before..
And dharmesh, wt r u doing?
Study cmpltd?
Hi Hawa,
I have to complete my CA Final.
Right now i am focusing completely on Iron Chelation.
When your lab show result of ferritin > 1650 ,
do tell them to do the ferritin by repeated dilution method and ask for exact figure and not like >1650 or something else.