Thalassemia Patients and Friends

Discussion Forums => The Spotlight => Topic started by: bhatti on February 06, 2009, 07:19:46 PM

Title: Hello every one and Asslam-o-Alaikum.
Post by: bhatti on February 06, 2009, 07:19:46 PM: I am father of a thal major child aged 4 years. I have joined the forum few days before. I was collecting the information about ASUNRA, and by chance I see the Thalpal site. Thalpal do'nt allow me to exit without registering my self. It is a very nice and helping site for thal patients ever I have seen.
Hoping a informative support by admin and you all people. Thanks. God bless you all.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Zaini on February 06, 2009, 07:40:15 PM: AOA Mr Bhatti,

:welcome2 Please feel free to ask if you have any questions in mind,my daughter has started Asunra last month,please inquire about anything which may confuse you.
We are all here to help.

Zaini.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Sharmin on February 07, 2009, 12:40:37 AM: Bhatti,

We are very happy to have you here! Please feel free to share and ask anything that you feel! We are happy to help. Your child is adorable, god bless:)

Sharmin
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Manal on February 07, 2009, 01:45:20 AM: Hello Bhatti and welcome to the site. Please feel free to share your expierence or any concerns :wink

manal
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Lyanne on February 07, 2009, 02:48:49 AM: Hi there Bhatti!

Welcome! We are hopeful many thal patients and friends as well that could really benefit in these forum. As it s really educational, helpful and fun..... Don't hesitate like Zaini said you're welcome to ask anything confusing to nor just wondering about anything thalassemia. :hugfriend
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: anjjela on February 07, 2009, 05:18:01 AM: Walaikum Assalaam Bhatti

welcom to thalpal..u'll surely get a lot of information u require abt Asunra and other queries concerning thalassemia...I have also started Asunra recently...All d Best

regards
angela
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: bhatti on February 10, 2009, 05:54:58 PM: Thank you very much ZAINI,SHARMIN,MANAL,LYANNE and ANJJELA. I am greatfull to u all friends for being so supportive.

Mujtaba in on Desfral and Ferinil(Defriprone). I just heared that ASUNRA can replace the injecting medicine. I realy want to save Mujtaba from the needle pain. Pl indicate me the right path.

Thanx you all people once again.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Manal on February 11, 2009, 02:03:08 AM: Hi bhatti

There are two ways of taking Asunra. Either alone or with a combination therapy with desferal. It all depends on the level of iron overload and definetly the combination therapy (Asunra & desferal ) chelates more iron from the body.

At the same time, it is not recommended taking Ferinil/Kelfer/L1 with Asunra

How much is the ferritin level of Mujtaba?? Have ever made him a ferriscan (MRI) on the liver to measure if there is iron overload in the liver or not ????

manal
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Zaini on February 11, 2009, 03:03:42 AM: Hi,

Since you are from Karachi,which hospital do you go to for transfusion?
What are Mujtaba's ferritin levels right now? I doubt if a doctor here will support the idea of combination therapy of Desferal and Asunra,but you can start Asunra alone,my daughter started it last month.Please update us about Mujtaba's ferritin so we can guide you more properly.

Zaini.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: bhatti on February 11, 2009, 04:26:15 PM: Thanx a lot Manal & Zaini.

Mujtaba's Serum Feritin is 2460 ng and taking transfusions from Fatmid Foundation. Some how we are also consulting with Dr. Shamsi.

He is taking Desferal at alternate days and ferinil 1000 mg per day. liver and splin is little bit oversized.

Hopping for supporting advises. THANX TO ALL
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Zaini on February 11, 2009, 06:52:30 PM: Mr Bhatti,

Dr Shamsi is a good doctor,of all the doctors i know here,he is a bit inventive one,can you ask him what does he think about combination of desferal and Asunra,tell him people are using it in other countries like US and Canada.

As for ferritin,it's a bit high,what is his weight? Dose for Ferinil is 75 mg/kg,please calculate the dose accordingly.What is the duration between his transfusions and what amount of blood is he getting?

Zaini.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Dori on February 11, 2009, 07:10:01 PM: :welcome2

I hope you like it here and I wish you lots of luck with getting the ferritin down! Mine is currently 2400 so we are at the same level.

Kind regards,

Dore
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: nice friend on February 12, 2009, 06:43:42 AM: Hi Bhatti Bhai ,
How r u ?. :wecome2 . i hope you're getting the your concering answers , keep it upp broo and keeo asking bcoze \ pocho gey nahi tou jano gey kaisay ???/ = ( Ask to Know abt anything ) .
anyways it was my kidding style . i hoe your kid will b super fit cool and fine, enjoying his life with full coulors of life . dont hesitate to ask anything , we are here to answer ahum ahum..cough....cough .. sorry buddy winter and cold like a brother and sister wait i will right back after getting advised to the doctor . :grin

Best Regards
Take Care
Umair
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: jade on February 12, 2009, 08:07:02 AM: Hi Bhatti

Welcome.
Your kid is really cute. You will receive very good advices from friends here. I hope that you will log on often enough to get information. Take care of your little one.

Before starting Asunra, i think you should check his kidney and liver function. Isn't it guys???Please confirm.

Wish you good luck with Asunra.
Jade
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Zaini on February 12, 2009, 09:29:07 AM: Jade you are exactly right,

Before starting Asunra one should be checking creatinine and SGPT levels,i am sure your doctor will ask for the tests before prescribing Asunra.

Zaini.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: bhatti on February 12, 2009, 06:14:34 PM: Hello and how r u nice friend. I hope u will be fine. You r realy intresting yar. I am enjoying your words. Thanx for encourging.

Thank u all friends Jade,Zaini.dore and all of you for being so cooperative.

Mujtaba's wt is 15 kg and he is getting tfns on almost 25 days routine in a vol of 300 ml r/cells.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Manal on February 12, 2009, 07:15:52 PM: Bhatti, what i know though i have no expierence with transfusions is that you give 15ml of blood to each kilo. So your son has to have 225ml of transfused blood. Why are they giving him 300ml???

manal
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: bhatti on February 15, 2009, 05:39:35 PM: Helllo Manal. Hoping u will be fine.

I have been told that 20ml / kg is the tfn ratio.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: nice friend on February 15, 2009, 08:45:38 PM: Quote
Hello and how r u nice friend. I hope u will be fine. You r realy intresting yar. I am enjoying your words. Thanx for encourging.
Hi Bhatti Bro ,
i m fine , thanx for the good remarks , i hope you will like to stay conected with us .... sorry for being late to reply i dont know how i missed this post afterreplying on it once .... as other members said Mujtaba is realy cute , i saw his pic and commented there as well .... i m not sure but i think that he is getting more blood than his need or the time gap between two Tx is a little short than it should be, i thin gap between two Tx should be 30 or a little more than 30 days ... i hope experienced and Senior members will shed some Head's light on it and make it easy to understand .....

Best Regards
Take Care
Umair
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Manal on February 15, 2009, 11:52:01 PM: Hi Bhatti,

As i told i don't have any expierence with transfusion but this is what i observe and read. But there is a thread here which talks about this clearly and i think it will be very helpful

http://www.thalassemiapatientsandfriends.com/index.php?topic=1602.0;highlight=formula+of+blood+transfusion

Hope it helps

manal
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: bhatti on February 16, 2009, 07:45:22 PM: Thankx a lot Umair. Hoping you will be fine. Also thnx for the compliments and sharing information.

Thnx Manal, I will discuss this matter with Dr. in next visit.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: nice friend on February 16, 2009, 08:44:52 PM: Your Welcome bro ... :grin :grin :grin

Take Care'z
Umair
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: anjjela on February 17, 2009, 10:33:34 AM: Assalaam Alaikum Bhatti Bhai....

gud to know tht u r consulting Dr. Shamsi as well...as he's my doctor too :wink
though im from india..but i went through splenatomy in Agha Khan University Hospital..n my sisters r thr in karachi so i visit sumtimes....n this last visit of mine in Aug-oct....i came across Dr. Shamsi...went to his clinic in clifton....n also once in NIBD.
I started with Hydra (hydroxyurea) on his advice....n now Asunra as well..as my serum ferritin was high...

glad to know tht we share the same doctor :high5
love to Mujtaba... :hugfriend

regards
angela
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Zaini on February 17, 2009, 12:03:58 PM: Hi Angela,

I am really glad to know that you came to Pakistan last year, :hugfriend Dr Shamsi is a good doctor,can you tell me where his clinic is located in Clifton,as i have never heard of it,always thought he did clinics at NIBD,which is quite far away from my place.

Zaini.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: anjjela on February 17, 2009, 12:31:23 PM: hii zaini baji...

im also glad tht u know him and say tht he's a good doctor :thumbup
well my sister lives in clifton...so she took me there...its in kehkashan, clifton....where u have that convent of Jesus and Mary...near Do Talwar...if u need the exact name of the location....i'll tel u that.
NIBD is really far from tht place....whr r u located?

love n regards
angela
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Zaini on February 17, 2009, 01:45:44 PM: Hi Angela dear,

I am also located near clifton,yes i have seen this convent school,i think i'll find it easily,tell me the name of the clinic if you have.

Thanks :hugfriend

Zaini.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Dori on February 17, 2009, 01:51:48 PM: Off topic:

A convent in Pakistan? Oh dear, an other prejudice has left me :shy. It is silly, but I never thought about the fact that there can be a convent in Pakistan. :blush

:ty

Dore
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Zaini on February 17, 2009, 04:48:32 PM: Yes Dore,

There are quite a few convent schools in Pakistan,the one Angela was talking about is named Convent of Jesus and Mary.

Zaini.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: anjjela on February 17, 2009, 05:25:03 PM: hii Zaini baji..

the full address of Dr. Shamsi's clinic in clifton:

Dr. Shamsi & Ansari's Diagnostics
F-175/1, Block-5 Clifton Clinic,
Near Do Talwar Karachi, Pakistan.
Tel: (+9221) 5865344, 5865345.

n yes Dore...thr r many convents in pakistan n india...i have been a student of one Convent too :wink
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Zaini on February 17, 2009, 05:30:51 PM: Thanks a lot Angela :hugfriend

Zaini.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: bhatti on February 17, 2009, 05:38:50 PM: Wa-Alaikum-us-Salam Anjella Sister. Mujtaba was also advised Hydra last year but it dos,nt gain results and as a side affect kid was loosing his hairs. So i stoped the same.

I am also greatfull to you for telling about Dr.Shamsi's clinic. I am also not aware of that like Zaini sis.

Thanks Umair for remembring us from the city of textiles.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: anjjela on February 17, 2009, 05:53:03 PM: ur most welcome Bhatti bhai :smiley

im happy if i can b of any help :veil
Mujtaba is Mashallah very cute..n he'll be in my prayers :pray

love n regards
angela
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: nice friend on February 17, 2009, 09:07:43 PM: Out of Topic , just a time killing exercise if you have enough free time , otherwise you may ignore this question :grin :grin
Do you know the other 2 names of Faisalabad ( City of Textile) known as ..... ???

Best Regars
Take Care
Umair
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Zaini on February 18, 2009, 03:12:00 AM: Manchester of Pakistan?

Zaini.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: nice friend on February 18, 2009, 05:35:40 AM: Bingo Zaini Sis , Absolutely right ...
1) Manchester of Pakistan
2) Faisalabad
3) City of Textile
4) ?? ??? ?? ??? ?? ...... and the last one is still missing ... hummm ..think .. think and think again.... do you need any Hint ..?? ....

Best of Luck
Take Care
Umair
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Dori on February 18, 2009, 07:19:48 AM: Off: you can not expect that Door knows the answer ;)
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Zaini on February 18, 2009, 12:19:45 PM: Lyallpur?

Gotcha!!! :wink

Zaini.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: nice friend on February 18, 2009, 01:22:24 PM: Exaactly , got right ....

1) Layllpur
2) Faisalabad
3) City of Textiles
4) Manchester of Pakistan

Umair
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: bhatti on February 19, 2009, 07:27:59 PM: Thank you so much ANJELLA, I am greatful to u for ur copmliments. Keep in mind us in ur prayers. You have already promised it. Thnx a lot.

Hello umair dear, how r u. Yar Realty is that I am paying the time to this forum from a portion of my sleep, due to my tough working hrs.

Thank u so much Zaini sis to save my time and mind energy as well as updating the knowledge.

HOR PUCH NICE FRIEND.

Thanx to all friends.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: nice friend on February 21, 2009, 02:13:05 PM: AOA BRo ..
Tusi Excuse e aini wadi laye ay kay hun hor kuch pochan nu dil na kar da ...
your excuse is big and valid , soo i dont want to ask another question ....

okiey , proper sleep is necesory , soo never compromise on that , a good sleep = a helthy and active man .... praying and hope that your Son ( Mujtaba ) is doing well and healthy ... along with Mujtaba Take care of your self as well , and have a good night sleep ...

Best Regards & Wishes
Take Care
Umair
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: bhatti on February 21, 2009, 05:51:53 PM: Thank u so much Umair. Remember in ur prayers. Allah Hafiz.

Bhatti
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: nice friend on February 22, 2009, 09:45:38 PM: Sure bhatti bhai ,
in-fact Mujtaba and all other thals are always in prayers ,i always pray's for them as wel as i do for my self bcoze , when someone prays for someone else ALMIGHTY ALLAH (GOD) order's to Angels to do the same for the man who is praying for someone else ... i hope i translated that correctly , zaini sis please correct me if i m wrong ... Take CAre bro ...

Best REgards
Umair
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Zaini on February 23, 2009, 03:20:40 AM: You are absolutely right my nice friend :yes

Zaini.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: nice friend on February 23, 2009, 04:50:38 PM: :biggrin :grin
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: bhatti on February 23, 2009, 05:36:58 PM: Thanx a lot nice friend and best wishes. Almighty Allah will lissen the prayers of the thal's soon, INSHAALLAH.

BHATTI
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Dori on February 23, 2009, 06:09:15 PM: Hi, a quick question: Does Asslam-o-Alaikum means the same as hello? I just read a book out about the war between Bangladesh and Pakistan during 1970 (I hope I am writing the correct facts) and the writer used the same word (and other words), but there was no translation scheme at the end of the book

Dore
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Zaini on February 23, 2009, 06:32:53 PM: Dore,

Assalam-u-alaikum means "peace be upon you ".

Zaini.
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: nice friend on February 23, 2009, 09:55:44 PM: Hi Dore ,
Quote
Hi, a quick question: Does Asslam-o-Alaikum means the same as hello?
1) Zaini translated absolutely right
Quote
I just read a book out about the war between Bangladesh and Pakistan during 1970
2) it wasn't the war between Bangladesh and Pakistan , infact in 1970s Today's Bangladesh wa the part of Pakistan and known as East Pakistan , to more clear the scene Today's Bangladesh (1970s East Pakistan ) is thousands of miles away from west Pakistan ( todays only Pakistan ). here is the map in which you can see east and west both part of pakistan .. ( east Pakistan is now bangladesh )
(http://www.martinfrost.ws/htmlfiles/aug2007/part_india01.gif)
soo you cant say that Bangladesh and pakistan was fighting at that moment . i think you know better than me wat kid of that situation was .... i won't say anything more bcoze i won't to make this forum a political forum :grin ....

Best Regards
Take Care
Umair
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: Dori on February 24, 2009, 07:48:20 AM: We will email about this. When I read the book out I could not understand perfectly what kind of war it was, but I guess civil war. The writer used more Urdu words, but I was too tired to write them down and asked you about it.
I hope you are feeling well. I am waiting for the anti side effects meds (there must be a better word for that).
Title: Re: Hello every one and Asslam-o-Alaikum.
Post by: nice friend on February 24, 2009, 11:58:40 AM: Dore
Quote
We will email about this
yeah sure ,

Umair