Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: eesha on September 27, 2007, 01:53:08 PM
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i live in the uk but when i go to pakistan i have to cut my stay short to get back in time for transfusions. i have asked various people like thal soc of pak and they say dnt worry there are many good treatment centres in pak and you shud be able to get a safe transfusion.
however after speaking to uk thal soc and my doctors they all advise me against transfusion in pak as blood is not safe there and is not properly screened,and all sorts of other problems.
what soes every1 else think/recommend?
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Hi Eesha,
You don't have to worry about that in the big cities as they have better hospitals that follow the protocols for safe blood. Furthermore, Thal. centers follow even more strict protocols so you don't have to worry about it one bit.
I suggest you get the transfusion at a Thal. center rather than a general hospital. Even though it is safe there too, but you will get extensive cross match protocols in Thal. centers as they know that Thals develop more anti bodies due to multiple transfusions and make sure that the blood you get is 100% compatible.
By the way which city are you planning to come? Hopefully you will find members on this site from that city which will help you with the Thal. center in that city.
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Sajid,
On that note, how costly is the treatment in Pakistan including Transfusion, Desferal, etc.
Thanks
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Eesha,
I know what you are talking about, I know a family here who wanted to stay longer in Pakistan and doctors advised them not to have a transfusion done there, but I tell you its only in the heads of these doctors and they are exagerating things. We have very qualified members of this group who live in Pakistan and know the first hand knowledge, just select the best option as per their advise and take a step.
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Hi C.F.,
Most of the dedicated Private Thal. Centers and all the Govt. funded Thal. Centers are either free of cost or partially charged as in private hospitals which may charge for the screening, transfusion and cross-match even though the blood is free of cost.
Desferal costs from Free to a fraction of the cost from Thal. centers to the full Rs.200 per vial from the chemists (if you can find in any of them).
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Hi Eesha,
If you're coming to Karachi you can get transfused at the Aga Khan University Hospital...their treatment is at par with any international hospital as per my experience.
From first hand experience Since i was very sensitive to blood compatibility Aga khan was one of the few hospital's offering washing of the blood. A practice common internationally. Thal centers also offer this service so please check with them. Cost for transfussion at Aga Khan is appx. Rs.8000 to 9000 per visit (for me atleast bcoz of the washing).
Zaid
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Hi eesha,
Zaid is right ,Aga Khan hospital is one of the best,they have state of the art modern lab and blood bank and everything,our daughter is going there for her transfusions right after she was diagnosed,and we had no problems Alhumdulillah,the cost per transfusion is about 7000-7200.
ZAINI.
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i live in mirpur azad kashmir but nobody will let me get transfused in pakistan they think even the specialist centres are conned. they say that the blood is not hiv screedned and donors are usually on drugs. also usually centres in pak ask u to bring ur own blood.
the advice i got not to get transfused in pak was from dr javeria mann who was a doctor in lahore and she said she has experienced it first hand and she says do not get transfused there so i am so confused.
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Edit: Got carried away too soon :biggrin
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I don't know what to say,Sajid i totally agree with you,Eesha Aga khan Hospital is an international standard hospital,they won't ask you to arrange blood,and they have an international standard laboratory and blood bank where they do all the screening which is needed before transfusion, i know all the thal centers are not doing very good job but if anyone is giving some efforts ,we should appreciate that,i don't know what should be said about prejudiced doctors like dr javeria,anyways i don't know much about other cities,though i feel like Jamila Sultana Foundation is doing a great job,but i am definitely sure about Aga Khan Hospital.
http://akdn.org/agency/hospital.html
ZAINI.
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sorry i am a little late here but ive been away from this site a while now getting to the question @eesha listen don't think what others say i am sure the doctor there who advise you to not get a transfusion here have never seen the facilities here i get my transfusion at A.F.I.T in Rawalpindi and they have the best facilities at international lavel and they even have LPB blood too so if you are coming to islamabad. mirpur is 1.5 hour drive away from it you can come here get you transfusion at either PIMS or A.F.I.T and if you want anymore help i can personally come and help you out
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Asim,
Pardon my ignorance; what's LPB blood? :huh
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OOOPS SORRY EVERYONE I AM VERY SORRY I GOT THAT NAME WRONG SORRY IT WASNT DR JAVERIA MANN THAT SAID THAT, I DOUBLE CHECKED AND I GOT THE NAMES MIXED UP I HAD JAVERIA MANN IN MY HEAD COZ THAL SOCIETY OF PAK RECOMMENDED HER TO ME. I AM SO SORRY SHE DID NOT SAY ANYTHING BAD ABOUT THE TREATMENT IN PAK I HAVENT EVEN SPOKEN TO HER.
THE DR I WAS TALKING ABOUT IS CALLED DR JAVERIA BUT SHE IS NOT MANN SHE WORKS IN UK SHE USED TO WORK IN PAK.
SORRY DR MANN AND ALL YOU PATIENTS OF HERS FOR CAUSING HER BAD NAME WHEN SHE DID NOT SAY ANYTHING I HOPE U WILL FORGIVE ME I JUST GOT THE NAMES MIXED UP.
SORRY ONCE AGAIN EVERY1
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Hi Esha,
No problem. We all make mistakes sometime.
Everything is cool; don't worry :biggrin
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hi esha
its true of wht the doc has said. as u have growen in uk ,the blood in pakistan is not safe for you anymore. not only because they are not properley screenend also because of the diffrent enviroment the donor has growen in.blood could not be screened hundred percendt so there is a chance you might pick somthing from the blood in pakistan.my advise to you not to take that chance.
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sajid LPB is liqupour blood
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And what exactly is liqupour blood?
ZAINI.
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Hi Zaini,
Last night I was chatting with Asim and I asked him the same thing. He said that it is blood free from White Cells and it is even better than washed blood :dunno and available only at AFIT.
I had never heard about anything like that before.
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HI,
When i googled this term,i was unable to find anything,and about being free from white cells,isn't this the purpose we use filter for?and what exactly is washing of blood?
ZAINI.
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Hi Zaini,
Washing of Blood means treating the RBCs with Saline solution to remove soluble impurities that can cause reactions.
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@zaini sajid answered you question @sajid :thumbsup
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But that doesn't remove white cells! right?so my question remains,what is liqupour blood?
ZAINI.
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@zaini some people get reaction from washed cells so liqopour is for them
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HI all :
Sajid and asim if i m not wron WBC ( white blood cells ) is also know as plasma or platelets ( that is is given to the patients of hemophilia ) ????.....
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Hi Umair,
Blood is made up of number of things. The 4 major components of blood are:
1) RBCs (Red blood cells or erythrocytes) I'm sure you are familiar with the function of these :)
2) WBCs(White blood cells or leukocytes) They seek out, identify and destroy harmful disease causing bacteria, viruses, and fungi. WBCs are an integral part of our immune system.
3) Platelets or thrombocytes are cells that release blood clotting chemicals at the site of wounds. They do this by sticking to the walls of blood vessels, thereby plugging the wounds and stopping the bleeding.
4) Plasma is the relatively clear liquid water, sugar, fat, protein and salt solution which carries the red cells, white cells, platelets, and all the other nutrients around our bodies through veins and arteries because these components don't move on their own and have to be floating in a carrying medium; which is plasma.
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@ Asim & Sajjid can anyone from u tell me something abt A.F.I.T ?
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Hi,
Asim goes there for his Tx.
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@ Asim & Sajjid
can u tell me wat is the fullname of that center .... i mean full name of A.F.I.T ....
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It's A.F.I.T:"Armed Forces Institute of Transfusion."
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Hi Sajjid :
i have some questions abt it.
do u know the names of doctors who is treating to asim ? .i mean Dr's name ?.
is it the same institution where Dr.sohaib sit's ?.
is this institution provide's the BMT facility ?.
Umair
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Sorry Bro,
Only Asim can answer these question. However, I did read the BMT sign when I was there in the complex for A.F.I.P (Pathology) to get some blood tests done.
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No problem Sajiid :
post is here on the site for asim ..i hope he will reply to it..and i m waiting for his reply..
thanx buddy
Umair
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Just saw this post @nice friend i go there ONLY for transfusion and thats about it... i don't know who dr shoaib is but i guess i heard that name in A.F.I.P not sure though. rest of the stuff like desfrol medicine etc etc i get it done from JSF hope this answers your questions
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@ Asim
thanx buddy ......
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Hi Asim :
r u using desferal with exjade (asunra ) ??... i mean r u on combination therapy ??...
waiting for answer umair
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@nice friend i am not using exjade i am using asunra with the money i saved for my xbox360 :'( but answering your question i sometimes use desfrol like after a transfusion and that too sometimes
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@nice friend i am not using exjade i am using asunra with the money i saved for my xbox360 but answering your question i sometimes use desfrol like after a transfusion and that too sometimes
hummm ..is that on doctor's prescrition .. all that u r doing i mean r u using desferal and exjade togather ( combination therapy ) on doctor's prescription ?...
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@nicefreind yes when i was on combination therepy i asked my doctor. But these days i am Only on asunra. I hope this answers your question.
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@ asim
okiey !... yes it meet's to my question ..
soo how is ur ferritin levels now .. ??.. controled or still high ... plz let me know if it works for ( talking abt asunra )..or its useless without desferal ?.. waiting for ur answer ... i m asking this coze i hope that after getting my leevels normal my doctor will move me on asunra ... soo ...
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@nicefriend i will have my feretin cheeked before this transfusion so lets see what happens