Hiiiiii everybody

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Offline mc_diab

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Hiiiiii everybody
« on: January 19, 2013, 03:55:21 PM »

Hiiiii everybody,

It's been a long time since i visited this forum... We've been very busy preparing our visit to the US which is expected in a couple of months. Six months ago we wrote to Cleveland University Hospital to try our chance doing a preimplantation diagnosis or embryo selection before the IVF. We are trying to have a 100% compatible sibling donor for our son Christopher who is suffering from Beta Thalassemia. We are vey excited but worried about what's coming next.

Does anybody have any idea or experience to share with us concerning this procedure???.

By the way I'm very glad to tell you that after your advice of splitting the Exjade dosage, Christopher's ferritin now is 1600.

Thanks a lot guys for your help and waiting to hear from you soon

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Offline mc_diab

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Re: Hiiiiii everybody
« Reply #1 on: January 22, 2013, 12:05:51 PM »
Hi again,

Please I'm waiting for your reply guys...anyone? Andy, Pratik...anyone?? :(



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Offline Andy Battaglia

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Re: Hiiiiii everybody
« Reply #2 on: January 22, 2013, 03:24:54 PM »
I'm happy to see split dose working for yet another patient. Keeping the iron load low is an important factor in preparation for BMT.
I don't know much about the physical procedures in PGD/IVF, so I hope others who have gone through this can share some experience.
Andy

All we are saying is give thals a chance.

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Offline Himanshu Kumar

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Re: Hiiiiii everybody
« Reply #3 on: January 22, 2013, 03:45:53 PM »
Dear Diab,

Recently I had visited Apollo Chennai to find out more about PGD. Though I did not get a satisfactory answer from the docs , this is what they had to say about the process

1. It is a long drawn process and the parents may be required to stay in the hospital for 1-2 months for the entire process.

2. It is being offered in very few countries so far, apart from US only one hospital in Singapore offers this facility.

3. While this process does ensure that the selected embryo is not only healthy but also is genetically compatible with sibling, there are questions on the success of the overall process. While I do not want to discourage you, the docs told me that there have been few cases of miscarriage post embryo implantation. Recently an Indian couple was in US for the same but unfortunately the implantation was not successful.

4. The indicative cost as told to me was 60K USD in Singapore. What is the cost of PGD in Cleveland?

I am sure you would have done your homework on the subject but in case you want to read a little more on the subject you may go to the link below.

http://www.ivf1.com/pgd/

I hope every thing turns out well with you. Please keep posting your experiences/understanding on PGD in this site. Many of us would be anxiously waiting for posts.

Regards,
Himanshu
Regular transfusion, Keeping pre transfusion HB above 10 and Iron Chelation are the three mantras for thals to stay healthy.

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Offline aabha

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Re: Hiiiiii everybody
« Reply #4 on: January 23, 2013, 12:48:43 PM »
hi,
we underwent PGD with IVF twice at Superior ART clinic in Bangkok,Thailand.The whole process takes about 25 days.injections are given to develop more than one follicle,which are harvested and fertilsed.harvesting is done under general anaesthesia,but one can go home after a 2-3 hrs of rest.the embryos are tested on day 5 and if a match is found the embryo is implanted with a simple 5 min procedure.the chances of getting a fully matched sibling are high,we had a match both times.
as far as conception is concerned age of the mother is a big factor...at 37 yrs i was not a good canditate......but we tried.
the cost was about Rs.3,50,000.
The doctor and facility were very good.
hope this helps :smiley

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Offline Pratik

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Re: Hiiiiii everybody
« Reply #5 on: January 23, 2013, 04:10:48 PM »
Sorry mc_diab, but I don't have anything to share in this field neither that I've done my research in it.

But I wish you success with whatever you plan to do and I pray God for your family's health.

Best of luck. :)

Love,

-P.
Every child is special.

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Offline mc_diab

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Re: Hiiiiii everybody
« Reply #6 on: January 24, 2013, 05:13:33 PM »
 
Hiiiiiiiiiiiii again,

Dear Andy and Pratik thank you for your replies, Dear Himanshu and Aabha i really appreciated all the details that you posted. That was a big help Thanks...

Dear Aabha i'm a 37 years old mother too and i'm really concerned now since the age is really important in the procedure. But like you did i'll try my chance and i pray God to listen to my prayers.

I'll keep you posted....Thanks again

Marie Claire



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Offline aabha

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Re: Hiiiiii everybody
« Reply #7 on: January 26, 2013, 07:46:07 AM »
Thats the spirit!! :biggrin
all the best :smiley

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Offline Visshal@Xvell

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Re: Hiiiiii everybody
« Reply #8 on: March 29, 2013, 07:18:07 AM »

Hello,
  I am vishal frm india... i hav been on asunra since 1yr... and its affecting nice... i want to try exjadeis is this drug is  more effective than asunra..help me reply...
and i am taking kelfer and asunra combo therapy frm 3 mnths.... what should i do???
Xvell

Re: Hiiiiii everybody
« Reply #9 on: March 29, 2013, 01:17:05 PM »
I can't really tell you much about PGD other than I wish we had done it.  My husband is thal minor and now it would appear that both of my girls have it. I have fraternal boy/girl/girl triplets that are 5yo off an IVF cycle I did at 39.9. FYI, we only had 3 to transfer and they all took.  Our dx is unexplained and we had been tryinig for over 5y. I can tell you that there are certain labs that work better for older women, or those of us with AMA (advanced maternal age) which is how they refer to those over age 35.  Is there a particular reason you chose Cleveland University Hospital? There is another test that is more comprehensive (takes longer and costs more too) that tests all 23 pairs of chromosomes for normality (CGH).  Dr. Sher of the Sher Institute has been running those (some of his other docs at other clinics do too and they are all over the US) for about 5 years.  CCRM out of Colorado does the same testing if it's needed.  PGD only looks for 11 diseases I think. I know SIRM did a free phone consult for me as I was out of state, and they might for you too since you're at a quite a distance.  Their site is www.haveababy.com.  Even if you aren't their patient, they will answer questions on the discussion board, so feel free to post. They also run clinical trials on some things so there are times when the cost may not be so burdensome.  Chromosomes are only part of the reason an IVF might fail. I wish you much success.

 

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