Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: ginaki on May 18, 2008, 07:07:41 AM
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Hi, would love to share my story with all u beautiful people.. my name is Gina and ive spend a long time in this forum reading every1s posts....
im a 35yr old mother of 2 thal B minors and 1 non carrier! Im currently 13 weeks pregnant and for the past week have been on edge waiting impatiently with my mobile phone clutched in my hand for the results of the chorionic villi sampling to determine if this baby is carrying the thalassaemia major gene!
i firstly i need to say i admire all the people that have posted that have absolutely no knowledge of the blood disorder but still go ahead and bring the baby into the world and also my heart goes out to the people that find out months down the track that their babies have thal major and to those that raise thal major children in not so medically advanced countries... well done guys! i admire u all...
my hugest admiration is to the 2 couples that i read that will be adopting thalassaemia major children and here i am stressing about my results....im sorry but im very dissapointed in myself for stressing so much when i am not going into this blood disorder blindly!
from a young age i would prepare my cousins desferral everynight and watch her stick the butterfly needle into her tummy, i would take days off once a month to go to the hospital and spend the whole day there till her transfusions were finished! i lived this, day in day out and still do... for crying out loud she is healthier than me (whom has had weight issues my whole life) and some others in our family (my mum has been on dialysis for 9 yrs), she is a beautiful 34 yr old who is married and has a one year old son...
she isnt the only thalassaemic i know, there are quite a few in our extended family.. im very familiar with the medical therapy unit that she transfuses at and they are also familiar with me....
i must say im very lucky to be living in Australia and our treatments here are so advanced and especially the care at the unit is fantastic! my cousin is doing great has been on the tablet for some time....... im a firm believer that god doesnt send u something that u cant handle, therefore im prepared to accept and raise a thalassaemia major child the best of my ability, this will be the biggest blessing and i surely will educate the majority of the greek/cypriot community whom look at childrem with major as sick and having an expiration date!
God Bless you all, love you all!
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Hi Gina,
:welcomewagon on the forum,i wish you luck with your CVS, :goodluck It's a good thing you know so much about this blood disorder,we didn't know anything untill our daughter was diagnosed,if you have gone through CVS,it means that you and your partner must be thal minors,right? So being thal minor do you face any difficulties in daily life? you must have read about the symptoms most of thal minors have,I hope your pregnancy will go smoothly. :hugfriend
ZAINI.
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HI Gina
welcome to you .. i hope you will find this community helpfull encourging :welcome :welcomewagon
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Hi Gina
Welcome :welcome :welcome
I live in Perth, I wish I stayed in Melbourne, I know that people there get better care for thal
Kathy.
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Hi Gina,
:welcomewagon on the forum,i wish you luck with your CVS, :goodluck It's a good thing you know so much about this blood disorder,we didn't know anything untill our daughter was diagnosed,if you have gone through CVS,it means that you and your partner must be thal minors,right? So being thal minor do you face any difficulties in daily life? you must have read about the symptoms most of thal minors have,I hope your pregnancy will go smoothly. :hugfriend
ZAINI.
Hi Zaini, yes my husband and i both are thalassaeimia b minors. i also have 2 children whom are minors and no we dont face any difficulties in daily life, occasional headaches but thats about it! my mum whom also is a minor has kidney failure and dialysis 3 times a week occasionally has an iron infusion and has epo injection 2 times a week to keep her blood high but thats only because she has renal failure..the majority of my family are minors but every one is healthy and suffers no effects of some of the things that i have read in the forum. I think the key to keeping healthy when u are thalassaemia minor is too keep ur iron intake high occasionally my mum will look at me or my daughter and notice a bit of darkness under the eyes and say to me u guys need a bit of iron cook some chicken livers for the little one, haha. a handful of almonds is a good source of iron!
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With tears in my eyes im writing to let every1 know, the baby was affected with thal major the results came in yesterday morning, the news shocked me so much but the news accepted with great pleasure but unfortunately this morning at 2.30am with out unexplained reason i misscarried!
god gave me a gift but took it away too soon!
luv ya all
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Ginaki,
I'm very sorry to hear about your loss. :sorrow
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Oh my,
I'm really sorry to hear about that. I hope you find the strength to bear this loss.
:sorrow
Please take care of yourself.
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I'm sad to here you ve lost your baby. :sorrow :sorrow
But I also believe that nature has got a way of dealing with things at times although we dont undestand there must be a reason why it happen this way.
Take care, have courage and in the meanwhile i will pray for you, to have strength at this time in your life.
Kathy
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I am so sorry, i will be praying for you :hugfriend
manal
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Gina,
I am really sorry,i know words are always not enough,i can understand your position,i went through CVS myself,i remember the fear of diagnosis and miscarriage was so powerful that i caouldn't sleep,wether i'll attempt another pragnancy in future or not is ?? i don't know what should i say,i'd love one more kid at least,but i am really afraid ,first going through CVS then waiting for the results and the fear of miss carriage :dunno
Take care, :hugfriend :hugfriend
ZAINI.
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im so sorry for your loss.
but stay positive.
think positive - feel positive
and positive things will come im sure.
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Ginaki,
I am so sorry for your loss! :sorrow :sorrow
Your posts have been so lovely, I am so sad to hear that you lost your baby. May god give you strength.
Sharmin