Transplant Or Not?? - Thalforum

Gracia Tiu · December 22nd, 2009, 12:46 AM

Dear All...

My little angel is 4 years old now... she in good helth..

Now she already have a 1 month old sister..
We already saving her cord blood.. now we are waiting for
lab result about cord blood fitness and number of cell, after that we
must have HLA macth.. If HLA is macth with Gracia,
Our Planing is to get Gracia to transplant..
this is Prosedure with high risk.. fatal if faild

but the only hope to be ex thalla..

So.. please give us your opinion about
I you have a same opportunity to be ex thalla.. will you take it??
or will you wait for batter technology...

Best Regards,

Sutan

Narendra · December 22nd, 2009, 05:28 AM

Hello,

Good to hear from you. Glad the child is doing well.

Transplant is a personal decision and I would say only the parents can decide what they should do as each and everyone's situations are different. There are pros and cons of the transplant. Also, the care during and after transplant should be considered as well as the success rate of transplant center.

There has been a post/poll related to Bone Marrow Transplant, which you can find here. Bone Marrow Transplant

Good luck with either option, but please do study more about the procedure and the steps for a transplant. Also, note today's prognosis of thalassemia is very different from what it used to be. Many thal patients are in their 50s and some are even in their 60s. I know a lot of thals got married and also some have their own biological children. With proper management, thals can live a normal life.

Farooq · January 11th, 2010, 09:27 AM

sutan,

what was the result? did you get a match?

Gracia Tiu · March 1st, 2010, 12:39 AM

Dear Narendra and Farooq,

Thank's all guy..

the test result does'nt come yet.. everything run slowly here..

after reading early post like narendra sugget me to do, I realise that transplant or not still just like a gambling, and the decision must be made in clear mind..

for now Gracia's Health is good, so we are waiting for HLA test result..
I still consider gene therapy..

thank's

sutan

be positive..

meenal · March 1st, 2010, 04:10 AM

i want to create a new post can anyone help how to create a new post here.

Thanks

meenal · May 15th, 2010, 09:02 AM

Pleae suggest from where we go for BMT

in vellore, they have no time till 2012

Some doctors asked vellore is no 1, but don't wait for 2 years because she may be infected with HIV, HEPATITIES B-C etc.

Now we are very feared & confused.

Please suggest.........

Gracia Tiu · July 23rd, 2010, 05:00 AM

Quote:

Originally Posted by meenal

Pleae suggest from where we go for BMT

in vellore, they have no time till 2012

Some doctors asked vellore is no 1, but don't wait for 2 years because she may be infected with HIV, HEPATITIES B-C etc.

Now we are very feared & confused.

Please suggest.........

Dear Meenal, I dont Know where you can do transplant near vellore, but the most important thing to do now is to make sure your princess is in good health,
1. Make sure the souce blood is clean
(keep 5 or 6 people that you understand their lifestyle for rutine blood donation)
2. Always do rescreening in your hospital..
3. Try to got leudekoplated blood (blood with lower white cell)
4. Check the ferritin level every 3 month.
5. keep Pray because we are now in miracle track and at the end of this track is the best for us..

I promise you, I'll will let you know the information of My Gracia BMT process, Please pray for my Gracia to..

Nice Knowing you... You are good parents..