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Starting PGD


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#1 Lawson Lot

Posted 28 July 2010 - 10:42 AM

I am new to EB and am hoping that I can get some feedback on other people's experiences with PGD.

After conceiving our first child with no issues, we were surprised to find that we had repeated mc when we tried for a second child. After the 3rd mc it was found that I have a balanced translocation (12 & 18). We should have bought lottery tickets when we conceived the first time after only trying for 7 weeks!!

We have been trying for 2.5 years and have decided that PGD is the next step - too much heartache. We realise that PGD may not work for us, but are at least going to give it a go!!

Is there anyone who has been in a similar situation to us?

#2 Masquerading

Posted 28 July 2010 - 10:50 AM

Hi,


**** pregnancy and children mentioned******


Im not in the TTC lot but I have been through PGD AFTER we conceived our ds first go.  Like yourself, I had recurrent miscarriages and after my 4th loss we had testing which showed I had a BT 5:11.    We have 4.5yrs between children , I was first pg again when ds was only 6 months old.  

Where are you located and have you found a FS? .  Feel free to PM me if you want some names.

There is a PGD thread in the Assisted Conception Buddy Group Section, it is pretty quiet these days, but perhaps if you post in there, some others may come along.

I was extremely fortunate and very blessed that our DD is the result of our first and only round of PGD.   Some women are very lucky first go, others not so lucky.

Good luck, and as mentioned earlier, feel free to PM me if you want further info.



#3 Lawson Lot

Posted 29 July 2010 - 11:32 AM

Thank you for responding. We have not come across anyone else who has been in a similar situation or that has a BT - so it is comforting to know that you have had such great success with PGD.

We are located in Central West NSW and are being looked after by wonderful doctors, specialist and PGD nurses. We are waiting on the scientist with our work up and will go from there.

Wish us luck!!

#4 kay11

Posted 29 July 2010 - 04:15 PM

I'm about to start pgd too.

We conceived DD (20 months) on our first round of ivf.  I was about to go back and use some frozen embryos to TTC#2 when my brother was diagnosed with a rare genetic disease.  I have the same symptoms as does all my immediate family, including my daughter.

Instead of doing FET we've decided to try and have a child without the genetic disease.  I'm only going to give PGD one chance.  If I don't have anything to transfer then I'm going back to the frosties and will take my chances.

Good luck OP!  We've had one appointment with the geneticist and fertility specialist and will be making one with the ivf nurse once the geneticist report comes in.

#5 Lawson Lot

Posted 30 July 2010 - 12:12 PM

Kay11,

It really is so hard to know what to do, and what level of risk you are prepared to go at. I wish you all the luck in the world for your attempt at PGD. I really hope it goes the way you want it to.

I'm so sorry to hear that your family is now faced with a rare genetic disease. It must be taking it's toll on everyone.

I would be keen to hear how things work out for you and your journey through PGD... please keep me posted on your progress.

original.gif

#6 stargazer

Posted 04 August 2010 - 09:53 AM

Hi Ladies,


       *******children & pregnancy mentioned ********


We are just about to start our PGD journey aswell.
We live in Brisbane but need to go to Sydney for the treatment.
It seems that my DH and I carry a rare genetic disease that is terminal to our children. We have already lost our 3yr old son and have just lost another at 14 weeks gestation.
We do however have a healthy DD who is 6 soon, so we know we can do it, but dont want to try 'russin roulette' again.

I'm so scared to think what is going to happen..my mind is so confused with all the paperwork and people we have to see.....
We have our first appointment on 2nd Sep...so wish me luck.
I hope i can talk to someone who is going through the same thing...

Thanks,

Tracy

#7 Lawson Lot

Posted 05 August 2010 - 03:04 PM

*******children & pregnancy mentioned ********

Tracy,

You and your husband are obviously 2 very strong people (even though I am sure that it doesn't feel that way). You are both amazing and selfless to keep trying.

When we conceived our daughter, we so naive and just sailed through the pregnancy. We had no idea how fortunate we were to fall straight away and have a healthy child (balanced translocation or not). Now, we are so informed, and so nervous of what could be a lot of heartache. It's sad to think that we will not experience the blind faith and assumption that "everything will be fine, and nothing could go wrong".

Like you, we are also doing our PGD in Sydney. Everyone where we went were just wonderful. The facilities are very inviting and they can not do enough to make sure that you are comfortable with all the processes. I do understand your concerns with all the paper work! I'm nervous about the timing with the injections and tablets, and getting to Sydney when we need to... From what I understand, the PGD nurses will be in contact regularly to guide us through.

On our 1st visit there was a lot to take in, so it was worth doing it over 2 days. We are now waiting for the scientists to come back with thier test / work up and we will go from there.

Please do not hesitate to ask any questions (not that I have a lot of experience with it all yet), or vent where needed.

Lawson Lot original.gif

#8 linnys18

Posted 09 August 2010 - 01:52 PM

Hi there,

Im all new to this and havent even see a specialist yet, i'm just trying to gather info at the moment.  My husband and I have a darling 2.5yr son who has a chromosome abnormality.  My husband and I have both been tested and are fine so my sons problem is just luck of the draw.  However we would love to have more children and even though we conceived our son quickly and naturally i've been looking at pgd through ivf because i'm so terrified it will happen again.  At this stage like I said I'm just gathering info and i'm not even sure if its possible to test for my sons issue.  has anyone had a testing 'created' for the condition they want testing for?  Any info you can give is much appreciated.

#9 stargazer

Posted 09 August 2010 - 03:10 PM

Hi linnys18   waves.gif

Welcome to the club.. Tounge1.gif
From what i know (as I've only researched and spoken to, we have our 1st apt in 3 weeks) every couple that comes in with a ├žondition' has to have a test created for them. Even if there are other couples out there with the same condition they need to talor one specific to yourselves.
We have been told by our son's genetists that SIVF are the best as they have done heaps of research into disease's and other conditions thats why we will be travelling to Sydney and not staying in Brisbane.
With your son's condition are the Drs able to test in the womb? and if it's just a one off, what are the odds of it happening again?
I'd give the IVF places a call and just ask to speek to a specialist with PGD and see what they would say to you. I have found them very helpful and willing to answer question i have had.
Hope that helps you and your journey is good..

Lawsons Lot ~ Thanks for the boost of pride..but i dont feel too strong..just have to do what comes.
Our first apt is in 3 weeks and i just want to get the ball rolling!!
What Dr are you seeing?
How long have you got to go till you can start treatment?

Hope your weekend has been good...

Tracy

#10 kay11

Posted 10 August 2010 - 10:30 AM

Hi Linnys18, the genetic mutation we have is unique in Australia so they are having to do the 'work up' on us.   They also don't just look for the specific mutation but also look at some surrounding genes (? not sure on the terminology as I'm still waiting for the geneticists report).




preg mentioned-----------------------
However I've just had a spanner in the works.  I had a positive pregnancy test yesterday ohmy.gif
I'm infertile, unable to fall naturally after many years of trying.   I was on a trial treatment to control the disease symptoms last month.  Obviously the treatment was very effective (and that was a funny phone conversation with my specialist this morning).  I'm still in shock.  I was only in my fertility specialist's office two weeks ago collecting the scripts etc to start the PGD IVF cycle.  Off to the GP later today to confirm.

#11 linnys18

Posted 11 August 2010 - 11:13 AM

thanks for your replies original.gif its very much appreciated.  The doctors dont expect the condition to reoccure in future pregnancies as my husband and i have been tested and are fine.  We've been told a cvs test should be able to pick it up but I suppose i'm worried about worrying for the 12 or so weeks of pregnancy before we have those results and then what to do if something should go wrong.  I just like to explore all posibilities i suppose, you never know.  Thank you again for your openess and understanding.  I wish you all the very very best.

Congrats on your pregnancy too, all the best I hope everything goes smoothly for you.

Edited by linnys18, 11 August 2010 - 11:15 AM.


#12 Lawson Lot

Posted 16 August 2010 - 12:53 PM

Isn't it funny that we are all in such different situations, but are all heading down a similar path.

Congrats on the postive test Kay11. Are you excited or aprehensive (or both)?

Tracy, we are seeing Dr Gabrielle Dezaurnaulds and SIVF. The scientists seem to think that they could have our work up back by mid September. Lucky that work is so busy to keep me occupied!!

Have a great day everyone.

Lawson Lot original.gif

#13 stargazer

Posted 18 August 2010 - 09:40 AM

Hi Ladies,

Kay11.I think i should say congrats!!  considering your 'infertile' thats good news??  maybe??
How are you feeling? what kind of tests are you going to have?

Lawsons Lot.WOW..things are starting to get closer for you.. dont bite your nails too much.
We are seeing Dr Mark Livingstone..
How do you go with working and starting or doing the IVF?
I only ask as i am starting my first job in 6 yrs (out due to raising kids)  and im worried about the job and starting IVF.. I know the work-up will take about 12 or so weeks but......??  I'm clueless to how i feel..stress wise, if it's a good thing or not.
anyway just putting my thoughts down..

Hope all is well

Tracy

#14 Lawson Lot

Posted 19 August 2010 - 12:47 PM

Tracy,

Working and PGD... I have only been in this role for 8 months, but I spoke to my bosses about my plans a few months ago (after we decided that were going ahead with PGD). They are fine with it, and fortunately very supportive. They are aware that I will require time off when everything is "good to go".

I did speak to them about being a bit "emotional" when it all starts, and we joked about putting me out the back, away from everyone original.gif

It will be interesting to see how I react to all the medications though, and any job stress that comes my way... I have had 2 early MC in my time here and managed to keep my emotions in check, so hopefully I'll be fine. I certainly understand your concerns!!!

Have you spoken to your boss about your plans?

Lawson Lot.

#15 Masquerading

Posted 19 August 2010 - 02:27 PM

Tracy,

I did PGD while working full-time.  I just told my manager that I was dealing with a medical issue that would require a bit of flexibility with work.   Most of the tests are early morning, and our clinic did all the IVF bloods before 8am so I would get in super early, do the blood tests and get to work not long after I normally would start.  

I would try and get scans done for early in the morning, around lunch time or in the late afternoon.  It's only a few weeks of disruption.

For Egg pick up  I took a some sick leave and had a certificate to cover me.

Transfer occurred late in the afternoon (as the testing was done on day 5 and I didn't get the call that there was a suitable embryo until 4.30pm, so I left work and went straight to the clinic) so that didn't impact on my working hours.

Luckily for me, i was only a couple of blocks from the clinic so this was possible.  If you speak to the clinic, you may be able to work out to have bloods and scans done at other facilities nearer to your workplace.  Occassionally, depending on your cycle and how stimming is going, pick up is on a weekend anyway, so this would avoid needing to take a day off work.

It is manageable, you just need to be a little flexible how you handle things.  If you are needing to inject at work, and you are worried you might get found out, then let your boss know it is for  temporary non life threatening medical reasons, if you don't wish to divulge the nature of the treatment (just in case they are worried that it should be a medical condition someone needs to know about) .  Remember, you don't have to specify why (you could be diabetic) and put your used needles in a sharps   container (or if you don't have one, an empty milk or coke bottle and keep away from others for their safety.    I know this sounds weird, we had a girl do IVF at work, and she asked for some advice on how to be covert about it , she told me because she knew because I'd been through it. She didn't want her boss to know what was going on, so this is what she did and it worked for her, though every workplace is different.

Good Luck.

#16 Lawson Lot

Posted 27 August 2010 - 02:14 PM

Hi There to Everyone...

So the PGD Scientists think that they could have our workup back by the end of the month!!

Obviously, we are excited about the prospect of things moving ahead, but we are well aware that it doesn't always work out for everyone.

My biggest fear is that the only viable emrbyo to transfer will have a BT and we will have to decide whether we transfer it or not. Does anyone have a view on this? I would love to hear how you all view this prospect.

Thanks and have a great weekend.
Lawson Lot original.gif



#17 kay11

Posted 22 September 2010 - 09:16 PM

QUOTE (Lawson Lot @ 27/08/2010, 02:14 PM) <{POST_SNAPBACK}>
My biggest fear is that the only viable emrbyo to transfer will have a BT and we will have to decide whether we transfer it or not. Does anyone have a view on this? I would love to hear how you all view this prospect.

Thanks and have a great weekend.
Lawson Lot original.gif


That's great the scientists should hopefully have everything ready for you now/soon.  Hope it's not too late, but I was told that the clinic that I was originally going to go through (SIVF) would not transfer embryos that tested positive to a genetic mutation.  They could be frozen and then you can try to find another clinic that would transfer for you if you did decide that you wanted to transfer an embryo that was mutation positive.

Anyway, hope it's going well for everyone and good luck original.gif


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