IVF with PGD #4

Hi ladies i'm a newbie to this thread i am usually on a TTC after loss thread but was recomended to this one as i have lot's of questions and don't know where to start i will give you a quick rundown of whats going on with me.
I am 35 and DH is 37 this is our 2nd marriage i have 3 boy's to my ex and DH has 1 daughter to his ex we wanted to have a baby together so after 5 months we were pregnant than at 12 weeks our nuchal scan showed a nuchal fold of 4.8mm so we had a 1 in 2 chance of a chromosone abnormality but a C.V.S came back all clear and we found out we were having a girl they said to have early morphology scan to check growth so at 16 weeks they suspected skeletal dysplasia then at 18 weeks it was major heart abnormalities and polydactyl of the hands and one foot with other suspected things we went to the fetal medicine unit at the R.N.S then westmead hospital fetal cardiologist and had many ultrasounds and an amnio so at 19+ weeks we were told that its some sort of genetic syndrome and she most likely wouldn't survive so we had an induction at 19 weeks 5 days and our beautiful girl was born sleeping the autopsy showed abnormalities from head to toe and we had to wait for the D.N.A results i found out today after a ph call that the genetisist and professor at RNS think they know what it is and that DH and i are carrier's of the same faulty gene we have an appt on the 10th of june to find out what syndrome or disorder she had and find out our options i have been told we have a 1 in 4 chance with each pregnancy and i have considered IVF but DH want's to conceive natrually and do CVS at 11 weeks to test for it i hope i havn't raved on i'm at a loss as to what to do next how exspensive is IVF and the whole process is scarey

:welcome: Ferrals I am so glad you have visited here. This is a fantastic thread where you will find great support and information from women who totally understand and respect your situation.I have replied to your PM so won't repeat all the info.

:hello: to Sara, Cuddlepie, Julie, WLAB, Lisa and Kel. Sending much :bluedust::pink-babydust: your way.

Hi Ferrals,

Welcome to this thread - you've gone through so much. Please take care of yourself :hug:

I also had a husband who didn't want to do IVF and we had a one in two chance of having a faulty gen - unfortunately that is what happened and we had to have a termination at 14 weeks, it was the most horrible thing that ever happened to me. During that time I found much support on A Heartbreaking Choice

I am now with a new partner and we're doing IVF. I am with SIVF - they can do PGD for a large number of genetic abnormalities, for some info check sivf.com.au

Sara

Sara69-Thank's hubby and i spoke about pgd last night and he said if we could afford it we would give it a go but i was told today that the genetisist has sent off tissue samples as they suspect PALLISTER HALL SYNDROME or SMITH LEMLI OPITZ SYNDROME or somthing similar and they can't detect those through pgd only in CVS or AMNIO as they need to find an enzym which is not possible in pgd but they first have to isolate the gene anyway i will keep you up to date cross fingers it's pallister hall syndrome as that one doesn't have to be carried by the parent's it can be a one off mutation.

Very quiet in here .....

Ferral :hug: So sorry to hear that things are so complicated, thinkignof you and hoping your find the answer you need.

CPie: Keeping fingers crossed for trigger tomorrow, look after yoruself, don't go to work if you're not 100% better.

WLAB: How are you - glad you found a new FS you like - when will you start your next cycle?

BDT: Cyclebuddy ! How are things did you already have your first BT - hope the new dosage does the trick for you.

Buliej: Hope you have a relaxing holiday.

Kel: Not sure if you're still lurking in here you know I am 100% behind you.

:hello: Meredith & WTH

AFM: I can start! FSH today came back as 10.3, it's probably not great in the greater scheme but was a huge relieve for me - already was preparing myself for bad news like FSH of 20 or higher. The main thing is I can start this cycle - will start jabbing tomorrow night, Puregon dosage of 350. This cycle I am doing the lot to prepare myself mentally, will go to a GP who does acupunture for anxiety, it's bulk billed so will try to do that weekly, also going to my specialist acupunturist in Rozelle at least once a week and more during EPU and the stressful days thereafter, will also talk to the counsellor weekly and going to meditation classes. While the big 4 Birthday is coming up I am taking it easy - tomorrow night it's a dinner with friends and on Sunday a lunch with another group of friends, then next week just a dinner with DP the night before my birthday and going to the theatre with a group fof friends on the night.

Will just try to enjoy the celebrations and be as relaxed as possible during this cycle - who am I kidding?

Have a great week,

Sara

Sara- Really happy for you that you can start and a fsh of 10.3 is nothing to be sneezed at. It sounds like you are doing everything humanly possible to relax and give this cycle the best. Wishing you the best.

Sara - had to poke my head in from overseas to say good luck with this cycle...and happy birthday!!! hope you find a few things to celebrate and enjoy the day.

Ferrals4: Good luck, chook. FX for you and your DH.

Dutchie, CP, WLAB, WTH, Meredith, BDT, Julie: Hi everyone!

Sara: I'm still lurking. ;)

CPie Sending you the maximum available amount of good luck and keeping everythign crossed for some nice eggies tomorrow morning :goodluck: :goodluck: :goodluck: :goodluck: :goodluck: :goodluck: :goodluck: :goodluck:

Kel: wasn't sure if you were still here and therefore greeting you only on AED.

Hi everyone else hope you're having a good week.

Cuddlepie - :crossfingers: your egg collection went well. Thinking of you ;)

Sara - a belated :happybirthday: my gemini cyber buddie. And congratulations on the FSH reading - a huge improvement :dance: I hope it is the beginning of your best (and final) cycle!

Thank you WTH - it's only next week but I am already trying to get used it , had 1st birthday celebration on Wednesday.

Just got the BT result, E2 is at 488, LH at 2.7 and I am startign Orgalutran tomorrow - pleased with the E2 but wonderign if it's not too early to start the Orgalutran.

Sara

Hi Sara
That is a great start with the E2. I remember being told they like the LH to stay below 2, so I think they may be starting it now to ensure no early surging and premature ovulation ;). GL hun - hope this is the one for you! :goodluck:

Thank you WTH - puts my mind at rest was a bit worried abot the Orgalutran - Ultrasound today was pretty similar to the ones in my last cycles - about 10 follicles overall of which 6 have responded with three a decent size, the biggest one 13 - E is up to about 1000, LH down to 0.8 so starting Pregnyl tonite. Next Ultrasound will be Wednesday hopefully by that time some more follicles have grown.
Sara

Good luck Sara for the next scan...

Sorry for being absent lately, I guess I had a little tantrum with IVF and really had enough of it...EPU went well but we didn't get as many eggs as I expected, only 6, my expectation was 7 or 8, so very dissappointed. By Day 1, we were down to 3 fertilized and today Day 3, 1 x 8cell, 1x5cell and 1x2cell. Exactly the same result as last time. Goodbye Antagonist cycle, next time it will definitely be down-reg cycle.

I've decided to do a 'freeze all and no transfer' this cycle. Just to let the 8 cell and 5 cell one keep growing and hopefully get something to freeze. Given my current body condition, I just don't see the point...

They say my 8 cell one is very good quality, being grade 1 and 5 cell is grade 2, so I am holding out hope secretly that at least we will have 1 blastcyst. After all the setbacks, I do learned that 'everytime you have a plan, life throw a chanllenge to mess it up', so I am also prepared it won't go as planned.

I am arranging with FS to schedule the Hysteroscopy this month and going to take at least two months break from TTC. I am actually feeling relived of our decision and looking forward to the post op recovery and enjoy a bit more in life because currently I have none.

Hope everyone is doing better than I am atm...

Cuddlepie - just wanted to send you a BIG :hug:. Sorry you are feeling (understandably) flat and this cycle did not reach its potential. My :crossfingers: for something to freeze. I know you will make the most of your two-month break. You deserve to relax and have some light-hearted fun :D

Cuddlepie :hug: :hug: :hug:

CP - I don't get in here often but am also sending you huge hugs. Praying you got better than expected from this cycle and that your upcoming surgery goes well. Drink up and party in your break I say! You deserve some fun

Sara - hoping your cycle going ok too

Julie: hope you had a great break

:hello: WTH & Meredith

CP :hug: Will talk later today.

The scan this morning was very reassurring, now have one at 20mm, two at 19mm, one at 16mm and one at 14mm. Will trigger tonight, best case scenario I guess is four eggs, more realistic three - but as my experience shows from last time we will just have to wait and see, who knows if there are any eggs at all. In any case it's probably going to be a rollercoaster ride again if there wil be an ET or not.

EPU is Monday morning at 8am, and DP will come under the needle at 9am. Please keep fingers crosssed for both of us. I really appreciate that the clinic does time the procedures according to my body - this is the third time I have to go there on a public holiday - had the BT for my 1st cycle on Boxing day, the ET of my second cycle on Easter Monday and now EPU on Queens birthday.

Got a juicer which was my birthday present from my friends and will give it a run now - got some nice pineapples and organic apples.

Have a great weekend.

Sara

Hi Girls,

Just a quick update from me.

EPU went well, four eggs, three of them mature - first they said two mature but an hour ago the scientist rang to tell me that one of the immature looking ones was actually mature which was great news. The great thing about this is that while the numbers are not great they are exactly the ones expected so the empty follicle syndrom I had last time did not repeat itself. Had kind of a smaller breakdone yesterday telling DP I want to call it off as I was really scared of it happening again, so pretty happy and very calm now.

DP, my hero, survived his procedure well and seems to be quite okay at the moment, hopefully he doesn't have too much pain once the anesthetic wears off.

Now we just have to wait and see, will hear about fertilisation tomorrow morning.

Sara

Sara - thrilled to read about the very promising retrieval. Your DP certainly is a champion. I hope neither of you are feeling discomfort today and look forward to reading news of your fertilisation result :crossfingers: WTH x

:hello: Cuddlepie, Buliej, WLAB, Meredith, Kel :grouphug:

WTh: nice to hear from you, thanks so much for your support.

Just checked with the clinic as the nurses hadn't called and we're down to the one precious little embie.

Sara

Go precious one, go! Am :pray: with you for this wonderful possibility, Sara :goodluck:

My darkest hour so far: the scientist called, one is fragmenting, the other one two days behind, he basically gave both of them no chnace to go to blast stage. I really hat the rollercoaster ride. :wall:

Really don't know what to do anymore. Even an egg donor might not be able to help us with DP's bad semen result. Looks like the end of the road. :hide:

Sara

Sara - sending big hugs.
Be very gentle on yourself and DP.

Hi ladie's
I havn't posted on here for a while we have been a bit busy moving house ,working geneticist appt ect.
Anyway we got our results back we are carriers ot the SMITH LEMLI OPITZ SYNDROME so we have the 1 in 4 of each pregnancy being affected they have told us to wait 2-3 months before getting pregnant so they can isolate the gene to test for it in future pregnancies

I wanted everyone's opinion if you dont mind in my situation and can concieve naturally would you take the risk of the next baby being affected with SLO or would you just go straight to PGD IVF and know for sure that the embie was not affected with it but the chance of concieving is like only 40% (so i have been reading) i have just been thinking about it i would love to get pregnant natrually but terminating at 13 weeks if the baby is affected is playing on my mind i would love your opinion and don't be afraid to be honest with me i will not judge anyone on their replies i just want some outside imput on what others who are in the same situation would do.

My FS just called - she thinks we would still have a chance even if DP's semen result does not get better but that we would have a better chance with an egg donor. Not really sure I trust her on this, at the moment only having very dark thoughts.

Kate: Thank you for being always there for me.

Ferrals: that's a really hard call to make, have done both and to be honest must say in hindsight if I had already children both would never be something I would consider for myself it's cames at a great emotional and physical cost. With the IVF option it depends on the number of eggs you can produce and the sperm quality - I would do some tests, they can check you on CD5 to see how many follicles you have and can check your FSH on CD2, they can also test your DH's sperm quality and DNA fragmentation - these results should give you an better idea on what chances you have with IVF.

Sara

Sara69-thanks for your opinion and i don't want people to see me as greedy for wanting more children you see i thought i had finished having kids my marriage ended and i thought my baby day's were over then when i met my now DH he had one daughter he doesn't get to see often as she lives a fare distance away and i saw how great he was with my boy's and he said he always wanted a couple of kid's we talked about it and i said i would have one more to complete our family then after we lost abbi we were so heart broken that i feel we will never get over or move on from abbi's loss if we do not try to fulfill our dream we will regret it for the rest of our live if we dont try so this is why i am here i fall pregnant fairly easy but i'm not sure i want to take the risk and just go with PGD IVF

Ferrals, really sorry I didn't want to come across as judging you, that is really not my intention. It was more about how hard this journey is, but you know that yourself:hug:

I think it's really brave of you to consider your options especially after going through so much.

To be honest I am thinking about going natural myself, but not really sure if I could survive it if it went wrong again. For me the odds are 50/50 - I have a friend at work who was in similar situation as you losing a baby at a very late stage and finding out about the genetic condition afterwards, for her the chances were 1 to 4 as for you, she got pregnant again immediately had a healthy boy and then two years later a healthy girl.

It's probably not the best day for me to write about this as I had just bad news about my last cycle and feeling a bit raw inside.

Sara

Sweet Sara - so sad to log on and read about your disappointing result. Totally understand that you are in a dark place. Sending you the biggest sincerest :hug:. I wish I had something helpful to say, aside from my keeping my :crossfingers: for this last emby. The whole IVF thing is so horribly taxing on our hearts, minds and bodies. I know in my case DH and I talked about both donor eggs and adoption if we could not get to blast stage. Thinking of you, hun :comfort:

Ferals - I am glad you found the reason for your loss and that you have the option of PGD. I remember you mentioning in a past post that if it had been another specific problem, that PGD would not be available to you. In response to your question about IVF/PGD versus naturally conceiving: When I did IVF I took the view that the 40% successful PGD transfer rate was a good thing. In our mid-30's I think conception is something like 15% in a natural cycle. Also, I had a natural chemical PG in January after 3 MC's (two of those had been confirmed as spontaneous chromosonal losses). When I first got that short-lived BFP I was terrified - DH and I both said straight away that we had wished we had had the reassurance of PGD. Sara gave sound advice about some pre-testing before a cycle. A good follicle count and your FSH level will give the FS an idea of how well you may respond to an IVF cycle before dishing out the $'s. HTH.

Sara69-thank's for your reply i understand what you are trying to say i just wanted you girl's to know this is somthing i have thought long and hard about and i have to follow my heart but thankyou for your opinion it help's and if your friend had luck with her babies it give's me hope and i'm sorry you got bad new's about your last cycle.

Where there's hope-thank's i was also thinking about the chances of natrual conception each month are not real great in your 30's and i am considering trying natrually while we wait for the geneticst to isolate the gene it could be between 4 and 12 weeks if we are not pregnant by then i will look into IVF thank's for the info it give's me more to think about and i will pop in here from time to time if you dont mind an amature inexperienced PGD IVF girl asking questions.

Girls,

I've decided to take a break from TTC - at the moment investigating egg donation as I've decided that with my own eggs the numbers are too much stacked against us, so porbably won't post much for a few months.

Sending you all :bluedust: and :stickyvibesgirl:

Thanks so much for your support during this hard time in my life.

:grouphug:

Sara

:hug: Sara

Sara - :comfort: If you ever need to vent or chat, you know where to PM me. Always here for you, hun xx

Sara - Big, big hug.

Ferrals - get on the waiting list for PGD anyway. Start the feasibility phase now, since it can take a year or more, and the IVF odds are much worse in your late 30's than your mid 30's. Best of luck with whatever your eventual decision is.

I've been posting with Sara on the "IVF with High FSH" thread - so I hope you guys don't mind me gatecrashing your thread.

Sara - I'm sorry for you. There's nothing I can say except to just remember you are not alone in this - many, many of us struggle with what should come so damn easily and there's just no rhyme nor reason for it. Sadly we totally understand the pain and heartache of this journey and share it with you. I hope you find peace and resolve and that the clouds lift soon - and I secretly hope and pray you get a natural unaffected miracle! :hug:

Kmn-are you serious the waiting list for PGD is at least a year why? when normal ivf is'nt very long my girlfriend started having treatment right away after her councelling sessions is that a year before they even start they are having our gene isolated now and i was told it will be 10 to 12 weeks to find it then it's our choice if we want to go ivf or try natrual i am devastated now can you tell me why it takes so long.

If the gene is easy to isolate and find a probe for then it could take 10-12 weeks to do that part of the process. If it takes longer to find a probe that works, it will take longer. Then once they have nailed that bit you then have to book in for a cycle......do not expect to get in straight away to cycle like you do with normal IVF. With PGD they can only process a couple of peoples embryos through the labs each day because it is such a specialised process so you will be slotted in when they have a spot available. For example we booked in before Christmas to do a PGD cycle and were told there were no slots till the April cycle so basically you have to wait your turn. And you can't get on that waiting list till they have your probe sorted out...no point cycling if they are not going to be able to isolate the gene...... it is not a short process......

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If the gene is easy to isolate and find a probe for then it could take 10-12 weeks to do that part of the process. If it takes longer to find a probe that works, it will take longer. Then once they have nailed that bit you then have to book in for a cycle......do not expect to get in straight away to cycle like you do with normal IVF. With PGD they can only process a couple of peoples embryos through the labs each day because it is such a specialised process so you will be slotted in when they have a spot available. For example we booked in before Christmas to do a PGD cycle and were told there were no slots till the April cycle so basically you have to wait your turn. And you can't get on that waiting list till they have your probe sorted out...no point cycling if they are not going to be able to isolate the gene...... it is not a short process......

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Ferrals, IMO, that is why I think it is a good idea to organise an appt with a FS at the clinic of your choice, even before you know for sure, what path is right for you, in Melb, I am on the wait list till end of August to get my frozen embryo transfered at my old clinic, as I don't want to use the other FS I used to use there.

If you start to slowly make appointments, and just pace your way through your own journey, you will be prepared for any delays hun

HTH

Ferrals, I did PGD with SIVF in Sydney, once you have had an appointment with your FS and done all the check ups and the gen is isolated you can start right away, there is NO waiting list in this clinic. Isolating the gen took 12 weeks for me. So if you start putting things in motion right away you could possibly start a cycle in 3 months.

However, I agree that there could be waiting lists in other clinics and that as WLAB said it's a really good appointment to organise an appointment with an FS straight away as it can take 4 to 8 weeks to get an appointment. Also there are some changes to the safety net which will make IVF more expensive after Jan 1 so it's a good idea to try to get a cycle in before that.

Good luck

Sara

Sara-thank's that has eased my mind a bit as we will be going through syd ivf and i'm worried about my age i know it get's harder the older you are also if you don't mind i have been reading some pretty scarey prices that come with pgd ivf but on the syd ivf web site it's not so bad but it doe's say the genentic testing of the embryo's is an extra cost that is not covered by medicare would you mind giving me a rundown of what extra cost's are involved