Hi all

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Hi all
« on: October 24, 2007, 11:32:55 PM »
Hi there

Hope you are all happy and well. I am Mo (aka mini mo) and  had thal major and  had a bmt when I was nearly 7 (6.6.97). Thankfully I'm much better and am currently in 2nd year college (UK).
This site is full of brave people and I salute you all and hope you are in good health. Hopefully I will be able to contribute to answering some questions although with Andy, Danielle and everyone else around there doesnt seem much point!  :dunno
But seriously any questions and I will be happy to answer them 

Many Thanks

Mo     :smiley

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Offline KHALIFA

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Re: Hi all
« Reply #1 on: October 25, 2007, 12:33:59 AM »
Hi Mo   :wink
    you welcome to our and of course your site  am also made for my son BMT and aftr that i made for him PBSC and thank you for your  salute .. but can you please tell me where did you done your BMT ?
                                khalifa
                          state of kuwait
                   one for all and all for one
RED_PILOT

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Offline §ãJ¡Ð ساجد

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Re: Hi all
« Reply #2 on: October 25, 2007, 05:12:06 AM »
Hi Mo,

:welcome to the site. It's really good to know that you are here. Please tell us about your success story.

Your opinions will always be welcomed and feel free to post your suggestions and replies to the questions.
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

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Offline Zaini

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Re: Hi all
« Reply #3 on: October 25, 2007, 11:43:59 AM »
Hi Mo,

Welcome aboard :),please do share with us your story about BMT,and problems before and after BMT.

Take Care,

ZAINI.
^*^Xaini^*^

Re: Hi all
« Reply #4 on: October 25, 2007, 01:17:43 PM »
Hey again

Thanks Zaini and Sajid for ur welcomes. I had my bmt in Royal Manchester childrens hospital (in the UK) and well ... the bmt was successful but it was also very hard. I remember getting a hickman line near my chest and shoulder(also known as a catheter) and I remember the nasty tablets I had to have including a pink one (I had to have them crused because I couldnt swallow and they made me sick).

There were many problems before my bmt - I was nearly always ill, fell really behind in school and mosque, I had very low confidence and this has stuck with me unfortunatly.  :(

I dont remember a great deal but after the bmt I also had a few problems.  But I need to go now (sorry) so I will be on later and tell u my problems and benfits after bmt. 
Thanks again 

Mo

Re: Hi all
« Reply #5 on: October 25, 2007, 01:18:54 PM »
and thanks khalifa for ur welcome ...

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Offline priya

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Re: Hi all
« Reply #6 on: October 25, 2007, 06:23:56 PM »
Hi Mo

 :urwelcome to this wonderfull site, I have just join few days back but this site and everybody in this site are just Great.
We are realy keen to hear you story.
So pls. do write SOON.

Harminder.

Re: Hi all
« Reply #7 on: October 25, 2007, 10:30:45 PM »
Thanks Harminder, ur right this is a great site. 

 Now for the problems after my bmt:
After my sister donated her bone marrow to me (which was very kind) i was doing well despite the persistent illness until the last week where I fell very ill and the doctors feared it was a rejection. All praise to Allah(God) it wasnt and I went home and was in semi isolation for about 6 months, basically I was advised not to go out too much only wen neccessery.  Another big problem happened a few years after my bmt (I was nealy seven when I had bmt) I suddenly came ill my eyes went very red and I was coughing a lot. The doctors didnt know what was going on so they took a bit of my left lung to see what the problem was ... it was my sisters cells fighting my cells (or so I was told) but they gave me some medication and I was much better. When I woke up from that surgey I found a tube in my rib and everytime I breathed in it hurt so bad I screamed the place down and so i was sedated and given painkillers  (why they couldnt do that before I willl never know!!)

Anyway I recovered and a few months later I got shingles next to my hip which tickled for a few days and absolutly wrecked the next few days, fortunatly it went away but left its mark   :whyme

After that I was pretty much ok, and I left primary school, 5 years later left high school and Im in my 2nd year in college studying business, economics, accounts and chemistry (all A level)

Thanks for taking an interest and hope to hear from you soon

Mo

Ps  ur right about the people as well ... makes ppl feel very welcome

(This is me wen on youtube)    :laughspit            LOL


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Offline EMommy

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Re: Hi all
« Reply #8 on: October 25, 2007, 11:40:43 PM »
Welcome to the group!

So Mo, are you 100% cured now without any recurring problems from the BMT? 

The BMT was a very courageous thing to go through.  I am glad that you are well.
Blessings,
Rebecca
Mom to 4- Two Beta Thal Major (chosen)

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Offline Manal

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Re: Hi all
« Reply #9 on: October 26, 2007, 02:08:01 AM »
Hi Mo and welcome to the site. Your input is greatly appreciated

Take care
Manal

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Offline Ambika

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Re: Hi all
« Reply #10 on: November 26, 2007, 08:36:04 AM »
 :hithere  Mo

Welcome to this wonderful site . I am new  and My daugter younger daugter is 8 months old and tommorrow we are going for HLA mapping test for her .I am praying to go that her hla get matched with us  or my elder daughter .Can you please tell me what is the rate of success BMT in smaill infants and also whether doctor do BMT in Smaill infants who are less than 1 year ?
 Its nice to hear your story that enlighten  a ray of hope in all of us (every one will agree with me  :agree) .

with regards
Rupali


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Offline Narendra

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Re: Hi all
« Reply #11 on: November 26, 2007, 06:51:20 PM »
I am new  and My daugter younger daugter is 8 months old and tommorrow we are going for HLA mapping test for her .I am praying to go that her hla get matched with us  or my elder daughter .Can you please tell me what is the rate of success BMT in smaill infants and also whether doctor do BMT in Smaill infants who are less than 1 year ?
with regards
Rupali

Hello Rupali,
The chances of HLA matching is 25% with the sibling. The success rate depends on a lot of factor's including liver enlargement, liver fibrosis and Iron chelation. I do NOT think BMT is done on child less than 2 years of age.

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Offline priya

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Re: Hi all
« Reply #12 on: November 26, 2007, 10:48:29 PM »
BEST OF LUCK RUPALI

Hopes your daughter get a proper match.
Its true as Narendra said that BMT is not done on the children less then 2 yrs. of age.

Love

Dimple

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Offline Manal

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Re: Hi all
« Reply #13 on: November 27, 2007, 12:05:42 AM »
Hi

This information is new to me, but i know a patient here in Egypt that has made a BMT when she was 11 months and now she is 3.5 years

Manal

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Offline maha

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Re: Hi all
« Reply #14 on: November 27, 2007, 03:59:11 AM »
Hi
Bmt is most successful (success rate 85%) if it is done prior to 15 transfusions, that is before problems connected with iron overload starts.Here too my hema suggested the best age as between 2-3 years.
Regards
MAHA

 

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