What a terrible year you've had. I'm sorry for your losses but you are a strong woman! Look what you've already survived
Foxy - are you still here? Hows the injections going?
I am going in for my epu on Monday. So far it looks like there are between 12 - 14 fairly ok sized follicles. Two more fsh stims until my trigger tomorrow night, then we will hope for the best.
Hi to all you PGD ladies, I'm new and really need some support/guidance as I'm reaching the end of my tether!
I have a genetic disorder with a 50% chance of passing it on. While it is certainly manageable for me, when DH and I found out we were looking at IVF anyway we thought we would pursue PGD.
We had our first appointments nearly a year ago with FS, clinic and geneticist - we were advised to give it another 6 months naturally TTC, but we thought we'd be proactive and get the ball rolling in the meantime so everything would be ready to go. In December we paid the workup fee to kick things off.
I followed up in April, as I hadn't heard anything only to find the clinic had not started the workup as there was some sort of miscommunication and the geneticist didn't know we wanted to start. So after a few tetchy conversations the workup officially started.
We were told we would need the assistance of an overseas lab to develop the probe, and they were having trouble finding one that could help. It is now nearly September and I still can't get a yes or no answer as to whether the PGD will even be possible.
Has anyone else been faced with anything similar? I've searched many forums but can't seem to find anything that's outside the standard 8-12 week workup.
Thanks in advance, and thank you all for sharing, I have found it very helpful to read the PGD threads and have found you all very inspiring.
It took 5 months for my test to be completed and i am pretty sure it took about 3-4 weeks to get our probe kit from oversea's.
We gave up on PGD IVF after one cycle it was just to much uncertainty and to many factors against us and the financial burden was huge so we decided to get pregnant naturally and hope for the best we have a 1 in 4 chance of having an affected baby
A 50% chance is pretty scarey but if your condition is managable then it is something else to think about our condition means our babies are not viable with life so we are taking a big risk.
There are women who have had success after a few tries so it does work.
Good luck i hope they get it all sorted for you soon.
Hi ladydax. Im sorry you are having a hard time getting this moving. My test was quick to formulate but i know some do a take long time, one of our PGD friends 'onja' had a two year wait i think it was so it does happen. If you scroll back a while you may find some of her old posts.
xx
Hi Ladydax, the PGD that was done on my embies was probably the simplest type and didn't need a specific test made for us. Our PGD just involved counting chromosomes. After we had so many chromosomal abnormalities in our embies in our first cycle, we had a blood test done on both myself and DH to see if we had any balanced chromosome translocations. We were told that if we did they could make a specific test for us, but that it would take about 3 months. We were lucky and our results came back ok. It seems that things are going pretty slowly for you though, and I think in your situation that if I wanted the test done as quickly as possible, I'd be calling and harassing people fairly often to try and get some results...
If it is a new gene then test development can be a long process. They have to:
work out exactly which defective gene you have (often via an overseas lab - and that lab will itself have a waiting list)
work out how to test for that gene - most clinics only have one or two research molecular biologists, and there is a waiting list for test development - and test development itself can be slow.
work out some backup tests/linked markers.
My test development took 3-4 years and 1 overseas clinic and 2 clinics here.....You have to be patient!
Thanks everyone for your quick replies! I really appreciate all your honesty and advice. Good luck to all of you.
Kmn - it looks like the issue we have is that there are 5 possible gene mutations for my condition and they have had no luck finding a lab anywhere in the world that can test to see which one I have. The annoying part is that the clinic here had my disorder on their list of genetic conditions PGD is available for, but now nearly a year later they say it looks like it's not possible.
We only went for the PGD option as they specifically mentioned my disorder on their website, otherwise we were quite happy to begin our IVF a year ago without it.
Thankfully I have just turned 35 and my DH is 36 so losing time until now has not been a huge concern. Hopefully we will get it resolved one way or another in the next few weeks, the clinic has been reluctant thus far to actually say they can't do it but reading between the lines I think that will be the outcome following my conversations today.
Last edited by ladydax; August 26th, 2010 at 02:18 PM.
It is difficult - the overseas testing places are research institutes, and their programs and what they are able to do and how long it will take changes all the time. My condition also has multiple sites for the mutation - I was lucky that the first one tested was the one I have. But then actually creating a test and finding appropriate linked markers took two clinics and a lot of time. I was 30 when I first found out that PGD for my condition was possible (in the sense of being offered in the US, but as far as I know no-one at the time had actually done it) and started talking to the geneticists. And 35 when we finally got to the IVF cycle stage. I can really relate to the losing time issue as well - I remember being so frustrated as I felt my chances were diminishing while the science was being done. I became pregnant on my first IVF cycle, and now have a son. I can't pm you - email me (kate at katenairn dot com) if you want to chat about this some more.
Last edited by onthefly; August 27th, 2010 at 05:12 PM.
I just wanted to give you a big hug in your situation.
My partner carries a gene that has a very high chance of passing it on to our children. He had a brother and sister die from the syndrome, and his mother (20 years ago) had 7 abortions, as directed by her doctors to avoid more children being born this way. I am lucky in the sense that while in her time, there was no probe, one was developed for her case and is now the one we will use today (probably modified with time).
I can imagine how anxious you are about all of this. Of course you want to be able to do PGD for peace of mind, but I know you just really want to get into trying...
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