Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: mrtariqkhan on June 20, 2007, 10:23:22 AM

Title: Advantages of using a filter during transfusion
Post by: mrtariqkhan on June 20, 2007, 10:23:22 AM
Hi!

     I have recently started reading on the net for my daughter who is a thal major and found this forum pretty useful i have to say people like andy and sajid are doing an awesome job keep it up  :hugfriend.

     Can someone tell me the advantages of using a filter during transfusion and also one of the doctors said that it will lower the amount of iron that goes in due to transfusion (is it true) . In Pakistan it costs around $40, could someone please guide me that spending this amount is really necessary each time.
Title: Re: Advantages of using a filter during transfusion
Post by: Zaini on June 20, 2007, 11:47:13 AM
Hi Mr Tariq Khan,

 :welcome to the forum,you'll find this highly useful,i am from karachi a mother of thal major daughter,about your question,as far as i remember doctor told us that filter stops white blood cells from entering the body,as what the body of a thal major requires is red blood cells,so keeping WBC count in control,please anyone correct me if i am wrong.But what amazes me isthe cost of filter,where are you going for your daughter's transfusion?i remember Sajid mentioning a center named "jamila sultana center",he said it has an awesome setup and staff, and reasonable prices ,perhaps you can check it out there.

I hope your daughter is doing well.

LOVE,

ZAINI.
Title: Re: Advantages of using a filter during transfusion
Post by: §ãJ¡Ð ساجد on June 20, 2007, 11:51:38 AM
Hello Mr. Tariq,

:welcome to the site.

Thanks for the compliments. :blush I'm no expert compared to Mr. Andy or anyone else on the site. I just call it a 25 years experience.

Anyway, the filters are good to filter out the impurities that are present in the blood if your child gets reactions from them. However, the Iron that comes from the blood is trapped inside the RBCs and is required for an essential function of RBCs. It cannot be removed by filters. The only way to remove the Iron that comes with the blood is via chelation therapy and that only happens when the transfused RBCs complete their life and break up to release the iron molecule.

Take care, Peace!
Title: Re: Advantages of using a filter during transfusion
Post by: §ãJ¡Ð ساجد on June 20, 2007, 03:16:15 PM
Hi,

Just wanted to add that JSF don't use filters but they have an extensive cross match protocols to minimise reactions unlike at Holy Family Hospital which issue the blood in few minutes.

Take care, Peace!
Title: Re: Advantages of using a filter during transfusion
Post by: mrtariqkhan on June 21, 2007, 09:15:11 AM
Hi again!!
 
             Thanks Brother Sajid and Zaini for the warm welcome. tell you the truth i wasn't expecting a reply so soon. REally you guys are the best.  :thumbsup

       Br. Sajid you'r quite a modest person - I get a lot of hope reading about you and hope that one day my daughter will live up to be like you. ( Strong and Confident - Believing in religion, Everything the whole package that makes you) i will surely one day make my daughter read your posts...  :yes

      Zaini you deserve a round of applause  :clap supporting your daughter i hope she does well through her life you are an inspiration to my wife.

      I was taking my daughter to PIMS ( Pakistan instutite of medical sciences) till the last time then i read the post from Br.Sajid yesterday pointing to Jamila Sultana and immediately took off from work and went to register my daughter they were very nice, everybody was very supportive the best thing is that my wife didn't even knew that it was a thalassemia center as everyone was in casual clothes ( I told her that it was some marrige counselling place and she was like " we don't need marrige counselling" :rotfl ).
     
   Anyways, jokes apart it was just like Br. sajid said very nice infact i didn't believe at first as we here in pakistan are not used to such nice treatment and that too for free - but these guys are simply awesome  :yahoo. The biggest challenge according to sajid is getting blood and at this place they help out a lot usually everyone requires a blood donation ( it's not easy to get it every time so far me and my wife have been donating ours with 3 months gap) at Jamila sultana they try to minimize this.

  So thanks a lot people for the insanely incredible advice and support. I being my greedy self would love to see more of it from your side  :bighug  thanks a zillion 
Title: Re: Advantages of using a filter during transfusion
Post by: mrtariqkhan on June 21, 2007, 10:18:29 AM
Hi!
 
    Just wanted to ask another thing from zaini. What did you give to your daughter to eat when she was around 1 and half year old. I mean i know what to give and what not to give. but didn't she gave you any trouble while eating, my daughter just doesn't take plain youghart or plain cheese but we give it maybe with a little rice she will take it but that's the only thing that she eats otherwise she will be eating only some potato Chips (btw can we give thal patients Chips???)..

   So please advice what did you do with your daughter in order to eat you know with interest????
Title: Re: Advantages of using a filter during transfusion
Post by: Zaini on June 21, 2007, 12:30:02 PM
Hi ,

Thanx for your compliments Mr Tariq khan,what else a mother can do? other then supporting her kids,so coming to your question, to tell you the truth, my daughter was diagnosed at the age of three,she basically is an intermedia,a wrongly diagnosed thal intermedia to be precise,untill then there were no problems, she never needed a transfusion till the age of three,but then when she was 2 years and 9 months old she started looking pale, we went to her physician,he asked for a hb test,and it was 6gm,then we visited a heamotologist and after doing hb electrophoresis, she said our daughter was a thal major,( i think idea of a DNA test never crossed her mind) it was like a disaster for us ofcourse,and what i was unable to understand was that if she is a thal major ,how come she didn't need any transfusion in last three years,but the answer to my question by doctor was "aisa ho sakta hay "meaning it's nothing unusual" ,,i never accepted that answer, i always knew at my heart that there is something gone wrong in her diagnosis,bcoz it's a general knowledge and i knew that thal majors start transfusing in very early months of there lives, nobody ever told me about any such thing existing as thal intermedia,i came to know about that about one and a half year ago,but it was far too late,after two years of consecutive transfusing,she is now a transfusion dependent child, though a doctor here told me to go for hydrea,and stop transfusing, but i am really afraid now,bcoz as far as her health is concerned she is doing great Alhumdulillah,she has an ideal weight and height for her age Mashallah,and i want to keep it that way.

Coming to your question about your daughter's diet,it's a fact that most of the time kids give tough times to their parents in eating habits,it's necessary to know what they like,there is no harm in giving potato chips to thals :) but if taken too much they can cause indigestion ,excess of everything is bad,try some porridge,khichree,some sweet dishes like custard,egg pudding,even a little bit of jelly if she likes it,give her some yakhni (chiken soup),and try to take her out at some time of the day, let her play in fresh air,( i think weather is not that hot like khi in islamabad),it will do wonders,and some children naturally have a  small appetite,like if a normal kid will have his/her meals in 3 times a day,they'll take it in 4 to 5 times a day,try some noodles also,knorr noodles with any flavour she likes,as far as iron intake is concerned,red meat is the biggest source of iron, avoid it,try some scrambled eggs as the protien source, plus chicken and fish, she likes chips,ask your wife to fry fish fingers,with french fries,sometimes, kids need a lil bit of distraction,try some cartoon watching or musical  toys etc.i know your wife may have tried everything,as she is a mother,and mothers are always conscious about their kid's eating habits,still i hope my long boring reply will help.:).

As far as your wife is concerned,ask her to visit this forum regularly, it will help her a lot in facing everything,and if she needs any sisterly advice or support she can obviously PM me,or even call me.

Lots of love fore your daughter,

ZAINI.

P.S What are your daughter's ferritin levels,have you ever got them checked?
Title: Re: Advantages of using a filter during transfusion
Post by: Manal on June 21, 2007, 12:43:07 PM
Hello :welcome :urwelcome

Welcome to the site. I am sure you will find here all the answers to your questions and all the support you will need

Take care

Manal
Title: Re: Advantages of using a filter during transfusion
Post by: §ãJ¡Ð ساجد on June 21, 2007, 01:54:56 PM
Hello Mr. Tariq,

I came back few hours ago and I did meet your wife with your beautiful daughter.

I know her first experience wouldn't have been a great one as your daughter's veins are so small and her blood was going very slow. Apart from that today there were too many patients and your wife and I had to sit throughout our TransX on the attendants' sofa. This shows the magnitude of the disease here in Pakistan. I was surprised they actually registered you as we had decided in our meeting that we won't register new patients until we get expanded to the lower building.

Anyway, it was good to know that it was your daughter besides me; but frankly speaking I didn't knew it until I came back home and my mom said (as she had been chatting with your wife) that the lady besides me had found JSF via Internet. I was like :doh "That must have been Mrs. Tariq and her daughter!"

As far as your question goes about the diet goes, well I'm developing the official website for JSF and on it you will find a chart for diet. I will approve it from Dr. Shazia and she will distribute it among all patients. You can access it online as well, but the site is still under construction. I can send you the list via email but I'd recommend that you wait till it gets approved by the doctor and she further refines it.

Take care, Peace!
Title: Re: Advantages of using a filter during transfusion
Post by: §ãJ¡Ð ساجد on June 21, 2007, 02:19:15 PM
Hi,

Just wanted to tell you that I have already added a Google Earth Place mark file yesterday in the "Treatment Center" section for locating JSF, it would have made it easier for you to locate JSF if you had downloaded that file yesterday, but I guess that you already have found it on your own.

Take care, Peace!
Title: Re: Advantages of using a filter during transfusion
Post by: Sharmin on June 21, 2007, 05:28:16 PM
The filter can also minimize antigens from entering the body, therefore reducing the liklihood of developing anibodies against various types of blood - if children begin developing many antibodies it limits the donors who can donate blood to that child.  And as Sajid and Zaini have mentioned it reduces the other contents of the blood, which your child does not require, from entering the body.   I am sure that Andy can expand on this, I really believe that a filter is important during blood transfusions.  Know however, that some antigen's may cross the filter and your child may still produce antibodies - but you are reducing the chances of this with a filter, and possibly introducing fewer varieties of antigens to your child. 

Sharmin
Title: Re: Advantages of using a filter during transfusion
Post by: Andy Battaglia on June 22, 2007, 06:55:36 AM
Filters filter out the white blood cells (leukocytes). Removing the white cells removes much of the antibodies present in the blood. These antibodies can cause reactions and are a main cause of post-transfusion fever. If at all possible, filtered blood should always be used.

There are two very good sites that discuss this subject.

http://www.scbcinfo.org/publications/bulletin_v1_n2.htm

Quote
Preventing or delaying alloimmunization to leukocyte antigens in selected patients who are chronic transfusion candidates. Platelet survival is frequently diminished in patients who require repeated transfusions. This is most commonly due to antibodies directed against HLA Class I antigens expressed both on white cells and platelets. There is evidence that it is the leukocytes in platelet concentrates, rather than the platelets, which induce the formation of HLA antibodies. Rates of platelet alloimmunization can be reduced if the white cell content of red cells or platelets is less than 5.0 x 106/unit. Leukodepletion of this order can be achieved with most of the third generation filters, and also with newer apheresis platelet collection procedures.

http://www.emedicine.com/med/topic107.htm

Quote
Deterrence/Prevention

    * Delayed hemolytic transfusion reactions
    *
          o Properly identify the serology of alloantibodies prior to transfusion, and properly identify antigen-negative RBCs if alloantibodies are present.

          o Patients with alloantibodies require fully crossmatched (ie, anti-immunoglobulin phase) donor units.

          o In ethnic minorities who have received multiple transfusions, testing patients for commonly involved antigens (eg, Rh, Kell, Kidd, Duffy) and using antigen-negative units can significantly reduce the frequency of alloimmunization. However, the cost effectiveness of this approach must be considered because most patients who have received multiple transfusions do not form clinically significant alloantibodies. A more cost-effective approach is to match the ethnic origin of donors and recipients, reserving extensive antigen typing for recipients who have been previously alloimmunized. These patients may also benefit from leukodepleted RBCs because leukoreduction appears to decrease the frequency of alloimmunization to RBC antigens, possibly due to decreased stimulation of TH2 lymphocytes associated with transfusions.

          o If attempting to transfuse Rh-positive units (RBCs, platelets, or granulocytes) into an Rh-negative recipient, prevent alloimmunization to the D antigen by administering intravenous Rh-immunoglobulin (eg, WinRho SD, 10-12 mcg/mL of transfused Rh-positive RBCs). If transfusing a large number of Rh-positive units, reduce the dose of Rh-immunoglobulin after removing the antigen load by RBC exchange.

    * Refractoriness to platelet transfusions
    *
          o Primary alloimmunization to class I HLA antigens present on platelets involves active donor APCs.

          o Removing leukocytes by filtration or buffy coat removal or deactivating APCs by ultraviolet-B irradiation reduces the frequency of alloimmunization.

          o Leukocyte reduction is indicated in all patients who are expected to be transfused repeatedly, especially candidates for bone marrow transplantation. These patients may also benefit from initial HLA typing and transfusions from crossmatched or HLA-matched platelets.
Title: Re: Advantages of using a filter during transfusion
Post by: mrtariqkhan on June 25, 2007, 11:46:33 AM
Hi,

 Thanks everyone for the replies these are of great help....   


    Zaini-  Thanks for the detailed reply iam sad for your daughter, our daughter too was diagnosed with intermedia but she dropped below 6 so we had to transfuse her at 6 months. Now she is totally dependent on the transfusions... best of luck with your daughter. I well definetly let know my wife of your generous advices. thanks a zillion....


    Sajid-  Yes my wife told me about you and mum. My wife was very happy to see you doing so good. she was very impressed.... well the blood transfusion went quite tiresome for us as they gave us in the last. and viens of such a small kid is always very difficult to get... nurses at pims are quite trained in this regard but the blood quality there is not good.... anyhow i hope this process will get easier in future i mean when huda will get older... keep up the good work. btw i am a web developer and have a experince of 2 years plus now. if i can be of any assistance in the site please let me know....


 Andy - Thanks for the conclusive reply to my question i have posted another one would you be kind enough to answer that too....


Again everyone thanks for the welcome and replies.. I appreciate everything...
Title: Re: Advantages of using a filter during transfusion
Post by: Andy Battaglia on June 25, 2007, 04:46:18 PM
Yes, the reason for the yellow color and high bilirubin is the excess hemolysis or break down of the transfused red cells. This happens because antibodies in the blood react to the antigens in the donor blood. These antibodies are increased in the blood due to previous transfusions. The more one is transfused, the more one accumulates these antibodies. This is why using a filter or filtered blood is so important. Removing the white cells and the antibodies contained in them is very important in improving the survival of the transfused red cells and also avoiding transfusion reactions. As you suggested, accurate cross matching is also a very important factor in avoiding excessive hemolysis.

If at all possible, use a filter during transfusion. One other thing that may help is using prednisone along with the transfusions. This can help counteract the immediate antibody reaction and lead to longer life for the transfused red cells. Perhaps Sharmin can share her experiences with her son regarding this.
Title: Re: Advantages of using a filter during transfusion
Post by: mumtaz on July 22, 2007, 09:51:40 AM
A-o-A Mr Tariq.
i am agreed with Mr Sajjid and Zaini. i am Mumtaz, my son also having the problem that he always got reaction at the time of transfeusion, so the doctor advise us to use blood after wash, method is, they saparate RBCs from WBCs, and then they washe RBCs by normal Sciline( in our lanugage Glocouse), to remove remainig WBCs from RBCs. Allhumduallah my son is now not frequiently reacted by the blood. so u should talk with ur doctor before adopting this method.
May Allah solve our Problems
Allah Hafiz
Mumtaz
Hi!

     I have recently started reading on the net for my daughter who is a thal major and found this forum pretty useful i have to say people like andy and sajid are doing an awesome job keep it up  :hugfriend.

     Can someone tell me the advantages of using a filter during transfusion and also one of the doctors said that it will lower the amount of iron that goes in due to transfusion (is it true) . In Pakistan it costs around $40, could someone please guide me that spending this amount is really necessary each time.
Title: Re: Advantages of using a filter during transfusion
Post by: mrtariqkhan on July 31, 2007, 05:21:26 AM
Hello Mumtaz!

                  Thanks for the tip. I will talk to the Tx people, lets see if they can do this for us.. Have you tried using a filter that we have been discussing in this post. If you have do let me know how has it affected your child.


Thanks
M Tariq khan
Title: Re: Advantages of using a filter during transfusion
Post by: mumtaz on July 31, 2007, 03:04:53 PM
A-o-A mr tariq
still we r using the same method(using RBC after wash), because filter is little bit costly and as u know this deciese is not for one or two months. so try to come up step by step.
i mean to say first we was using RBC without wash, then after some time my son got problem, so now we r using RBC after wash,
and inshallah i hope that this method will be good for him in feature, if he got again problem continusely then i will think about filter,
with prays
Mumtaz Ahmed
Hello Mumtaz!

                  Thanks for the tip. I will talk to the Tx people, lets see if they can do this for us.. Have you tried using a filter that we have been discussing in this post. If you have do let me know how has it affected your child.


Thanks
M Tariq khan
Title: Re: Advantages of using a filter during transfusion
Post by: mrtariqkhan on August 02, 2007, 04:56:12 AM
oh okay!
           Thanks for the advice. I will ask my doctor about this.

Best of luck
Title: Re: Advantages of using a filter during transfusion
Post by: asim_aziz on October 12, 2007, 05:33:07 PM
hello sorry i am late again.. @sajid you forgot me on this forum  :madno  @M Tariq khan hi my name is Asim i am also a thal major patient and from Islamabad and me sajid are good friends and basiclly we are like a group and stick to each other and i also have another thal friend who lives close and we take care of each other and we are like a group of thal petiants but don't make our disease part of our normal life and in any way i can help or assist do let me know as i am in islamabad and have 18 years of experience but its nothing compared to sajid
Title: Re: Advantages of using a filter during transfusion
Post by: §ãJ¡Ð ساجد on October 13, 2007, 04:21:35 AM
Hi Asim,

Forgot you? How? We chat regularly on MSN ??? You just don't show up here often.
Title: Re: Advantages of using a filter during transfusion
Post by: asim_aziz on October 13, 2007, 01:00:45 PM
well i am back :hugfriend
Title: Re: Advantages of using a filter during transfusion
Post by: KHALIFA on October 13, 2007, 07:29:12 PM
hi
    Regard my son i used to gave him filtered blood in kuwait  but after the first BMT in 2003 and after he got a rejiction i start to give him iradiated blood and after two years i check his lever fibrosis i found out he start to be ok in 2003 he was grade 3 in 2005 he was grade 2 even Dr paola she told me he is better than 2003 because i used the iradiated blood ... but am just asking my self WHY SOME COUNTREY NOT OFFER FREE BLOOD FOR WHO NEED IT LIKE WHAT WE HAVE IN KUWAIT :mad ? ,,,,,even our pupolotion is just one milion person but the PpL here in kuwait they make donation regulary ... am just wondaring do this goverment need amoney for blood and keep all the store full with attack wepons  :(  :dunno  :huh
               khalifa
                   one for all and all for one
Title: Re: Advantages of using a filter during transfusion
Post by: §ãJ¡Ð ساجد on October 13, 2007, 08:05:41 PM
Hi Khalifa,

Blood is free here in Pakistan. It is only the transfusion cost that some places charge. After all the blood bags, test kits and processing/storing the components cost serious money. Most of the Thal. centers and govt. based hospital are totally free.
Title: Re: Advantages of using a filter during transfusion
Post by: mrtariqkhan on October 17, 2007, 06:59:49 AM
Hi and Salam asim!   
 
                       Thanks... Sajid has been of great help on the site.. i haven't posted anything on the site but i closely follow the discussions they are of great help... Life style in Kuwait and gulf areas are much better than those of pakistan ( hence the outflow of people from pakistan to Kuwait and other countries). But nevertheless the government and especially private organizations where my daughter and sajid go for transfusions are doing a good job at taking care of Thalassemic patients. But i really wish that everyone here in Pakistan (rich and the poor) has access to the best care like there is in foreign countries.
Title: Re: Advantages of using a filter during transfusion
Post by: asim_aziz on October 17, 2007, 07:45:04 AM
@mrtariqkhan ok so tell us a little about yourself too where in isb do you live i mean in which sector and where do you get your daughters transfusion from?
Title: Re: Advantages of using a filter during transfusion
Post by: mrtariqkhan on October 18, 2007, 07:17:49 AM
Hi,
   We live in I-10 and we go to Jamila Sultana foundation located on sixth road Rawalpindi - courtesy of sajid here, i read his post and started going there  ( Thanks)....

Title: Re: Advantages of using a filter during transfusion
Post by: §ãJ¡Ð ساجد on October 18, 2007, 07:45:20 AM
Hi Mr. Tariq,

I never got the chance to meet you but I didn't know that it was your wife and lovely daughter there probably on her first Tx at JSF. I hope our appointment date coincides once more and we get to meet each other. I sure love to meet each and every person on this site. That would be a dream come true :heartred :)
Title: Re: Advantages of using a filter during transfusion
Post by: mrtariqkhan on October 18, 2007, 12:27:09 PM
hi ! 
       yeah, i wish the same.... but i am unable to come for huda's Tx as everyone here operate in the day. But, you can meet my daughter  :cheer my wife tells me that everyone at the Tx center give her a lot of love.. she also told me that you were not feeling well.. is everything okey????
Title: Re: Advantages of using a filter during transfusion
Post by: §ãJ¡Ð ساجد on October 18, 2007, 12:35:31 PM
Yeah I've been having some health issues lately but I think I had met your wife quite some time ago before this nose bleeding stuff started. How did she find out??? :)
Title: Re: Advantages of using a filter during transfusion
Post by: asim_aziz on October 18, 2007, 01:07:42 PM
@mrtariqkhan i wish to meet every thalassemia releted person around me to and it really helps like for example i met a thalassemic friend (who is now my best friend) he told me about jamilah sultana then i told sajid about it and sajid posted it here and i am very happy that i told sajid because now more and more people can avail this opportunity :yay
Title: Re: Advantages of using a filter during transfusion
Post by: mrtariqkhan on October 19, 2007, 10:13:05 AM
oh that's nice asim - i think we both should be giving the hugs for this info :hugfriend ..
My wife heard from someone at jamila sultana so she told me.. anyways- that is not important... I pray to God that you feel well again..
i think everyone on the site will be praying  :smiley -
Title: Re: Advantages of using a filter during transfusion
Post by: §ãJ¡Ð ساجد on October 19, 2007, 10:33:09 AM
Indeed! This site is where I get the energy from and I always feel good even if I'm having all sorts of troubles as everyone shares their love and prayers for each other.

I love this place.
I :heartred WUB :heartpink U all!
(http://www.swapmeetdave.com/Humor/Cats/CuteKittyHug.jpg)
Title: Re: Advantages of using a filter during transfusion
Post by: Kathy11 on October 19, 2007, 09:55:48 PM
Hi Sajid' :hugfriend
I hope you are feeling better today.
you are one whom makes, this web-site,what it is ,you are the strongest person I've I virtually know.
The cats are cute, you give so much .Thank-you  brother.
much love from :wave :wave :wave :wave
Kathy :
 
Title: Re: Advantages of using a filter during transfusion
Post by: Zaini on October 21, 2007, 08:22:00 AM
Yes Sajid,

You are a source of inspiration especially for me,knowing the condition of thal patients in Pakistan ,your spirit is like a pleasent exception,though i am happy that the number of accomplished thal patients is slowly and gradually increasing,i have seen some at the hospital,and there are definitely patients like Zaid on this site from Pakistan,I hope one day my daughter would be the source of inpiration for other thal patients.

ZAINI.