IVF with PGD #6

Just an update, I got 16 eggs, and 13 fertilised. Now the waiting game to see how many make it through PGD tomorrow.

Great work Kimmi..!!!!!
Im so excited to see how you go!
xx

Well done!

Good luck with PGD!

Best of luck to your embies Kimmi!

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.

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.

Just popping in to say that I get my PGD results today. I can't focus, and I'm at work, so that's no good :)

We ended up having 11 to undergo testing, so we will see how many make it through the other side.

Kimmi xx

HI Lady,

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...

Once again, Big Hugs and all the best!

Kimmi xx

Great news Kimmi!!! What a difference from your first cycle! I hope you have some more good news for us tomorrow!

Just wondering....does anyone know why doctors say it takes 2-3 times for IVF to work? I've heard a few of you say your doctors have told you this. Is it our bodies and the meds...or what?

Kimmi, I am dying to hear your PGD results!!!???

Mia's mama- it is purely based on statistics of past patients.

Hi Jaki!

Ok, they ended up testing 12 embryos. 2 were ok (from what they could see) 6 were totally inconclusive and no results were obtained and 4 where no good. :) We had one transfered yesterday, and apparently is was quite a good embryo. The 6 that had no results are being retested. They took cells yesterday (on day 5) and them froze them all so they can take their time looking at the quality.

How did you survive your TWW jaki? It's only the next day and I'm doing my own head in. Any advice would be fab!

Ok great to get a transfer. I hope they get some more good results!
As for the 2ww I have no idea how I made it thru! I do know the first time was alot harder, I was constantly on the 2ww thread on here and altho the women are awesome it fed my obsession. So in my 2nd 2ww I just kept busy at work and with friends, and I stayed away from the 2ww thread. BUT I'm not saying you should avoid that support if it works for you.

Xoxo

I think you're right! I'm likely to get a serious obsession going on! Can I ask how long after the transfer did you get your bfp?

I had a BT after 10 days. I did a HPT after 8 days and got a very light positive line. That just messed with my head as I was then convinced it was another bio chem pg. After the BFP I did another HPT and it was still light but a little darker. My HCG was 107. I think you need pretty good numbers to get a dark line. I won't say don't do a HPT but sometimes it can make you feel worse.

I think I just need to keep busy and hope for the best - You know! So anyway, how is your pregnancy going? Are you getting all the morning sickness, cravings etc?

Positive thinking love!
Well ive just about got every symptom going! But i certainly will not complain!!!!!!!!!! Bring it on i say!
xoxo

Kimmi- great to hear you've had some success with your embryos! Good luck for the last bit of the 2ww. On my cycles where I had +ve UPTs, they were positive from about Day 9-10 but I think everyone's different.


Ladydax - sorry to hear about the long delays, it sucks. That's the problem with PGD, especially the rarer genetic conditions. If my partner uses her eggs, we'll need to wait 6 months or so for the test for haemophilia specific to her, or else use sex selection to only put back female embroys (it's an X-linked condition so females can only be carriers, not have the condition). We'll wait and see how we go this cycle.

Mia's mamma - from my reading, it seems that >60% of eggs in even young women are chromosomally abnormal, hence why if takes so long for many couples to get pregnant naturally. I spose that's why it can take a while to get pregnant, even with embroys without the genetic condition.

AFM, injections have been fine, EPU tomorrow! About 14 follicles at last count, and we'll find out Friday regarding a possible transfer. I'm trying not to get my hopes up too much after being devastated over and over again. But I am a little bit excited! (and nervous!)

Good luck Kimmi, thinking of you over the next week or so!!!! Let us know how you go!!!

Good luck foxy!!!!!

Hi Foxy,

I was so glad to see your post. I was wondering how you were going. All the best for your pick-up. Please keep me up to date! I've really got my fingers crossed for you foxy.

It's so hard, not that I claim to have been through what you have, but I do understand.

Let's hope this is the cycle for you!!

Kimmi xx

How's the lines coming along foxy?

I'm so glad we are back online!!! So spewing we lost all our posts! I didn't get to read your last one kimmi if you can remember what it said? How are you doing?

Good luck tomoz foxy!

I know, how frustrating. I lost the last 50 or so posts.

I'm doing ok. Can't complain. Just still dealing with wishing things were different, you know?

Looking forward to some good news from Foxy :)

Hows your pregnancy going? 12 weeks now, have you had a scan lately?

I know exactly what you mean, and trust me i NEVER thought id be in the position i am now. I thought we were being punished, and now i wonder what we did to deserve it. It is a total mind F*.
I had my 12 weeks scan yesterday, it was very exciting and everything is going perfect :) HB is 182 tho, a bit fast for a boy so that could be interesting.
xx

Hi guys,
Pity about losing the posts!

Kimmi- hope you're doing ok

Jaki - glad to hear everything looks good on the scan!

AFM, got the blood test yesterday as I had some really bad cramps overnight on Monday night - level was 199 which is good; having another tomorrow so will let you know. Lines are still getting darker though so I'm finally allowing myself to dream a little...:pray:

Foxy congratz!!! 199 is awesome! Mine was 107. If it's doubled well tomoz I'd say a possibilty of twins :)

Foxy, congrats on a great hcg level! Don't stress too much about the cramps. The first sign of pregnancy for me is always a heavy crampy kind of feeling. Similar to what I get the day AF is arriving, but when I am pregnant I get that feeling 3-4 days before AF is due. That's how I knew I was pregnant with DS before I got my BFP, and I was sure I was pregnant with this little girl before my hpt lines started getting darker too. I guess the uterus is super smart and knows it needs to start stretching and changing as soon as the embryo implants :)

Im still crampy all the time :(
Sometimes quite severe.
Its normal.

That's really great news foxy and REALLY great numbers!

Twins would be such an awesome mind-blow for you! haha :)

I've got my fingers crossed that you get a perfectly doubled number and can't wait to hear your next update!

AFM I'm plodding along. This has been the good kick in the rear-end that I have needed to try to get as healthy as possible. So I'm getting through my days starving and thinking about toasted sandwiches. Damn yummy food that's not allowed! ha!

i'm thinking of waiting until January to do my next cycle, that will give me a few months to prepare my health and mind, and get the other billion things I need to get done finished. Sell our place, buy another one, maybe look for a new job (I have the 7 year itch big time) and get some more of our wedding planning going.

So take it easy Foxy, enjoy the ride and everything will be great for you! xx

It looks like you lost your AV in the downtime Jaki.

If you haven't already, contact sarah as apparently she has kept them all on file on her computer!

Yeah i know im spewing! I went to the av thread and it said she was going to load them on again.

January sounds good, like i said i waited 12 months and then 6 months between cycles. But i never had a 'plan' for that. I just knew i wasnt ready, and then i would suddenly realise i had my head in a better place for another go.

BUT dont disappear cause we :heartbeat: you!!!!

Oh thanks! Noooooo, I won't leave, I'll just follow you all around like a little lost puppy ha!

I :heartbeat: you girls too

Foxy - Great numbers! Lots of baby dust or sticky glue...whatever I'm supposed to say!

Kimmi - Two cycles back to back...I'd be taking time off too! Take care and like Jaki said - do hang around here!

Been on the pill for over a week now. October 8 I pick up the injections to start on the 11th. Hoping it's our time...otherwise, I'll be going on IVF holidays with you Kimmi :lol:

Great mia's mama! That'll come around so fast :)

Mia's mama - how exciting! That's only a few weeks away now!

Kimmi - January will be here before you know it! Great to have some time off I think.

Thanks everyone for your support, HCG today was 433 so I'm greatly relieved despite cramps that have me screaming in pain... no idea what I'll be like in labour but an epidural is sounding really good... everyone keeps telling me that even severe cramps are normal though. Hmmm...