IVF with PGD #4

Ferrals - As Sara said, if you are going with SIVF, there is no waiting list. As soon as you have the gene isolated you should be able to run with your next cycle. But you do need to have had your initial consult with your SIVF FS and there may be some paperwork to get out of the way in advance. Your FS may also want to do some BT's in advance so they have an idea of what dose of FSH they should start with for you. The classic cycle is a "down regulated cycle", so you will probably commence the pill (Provera) around Day 19 for seven days of that next menstrual cycle. The following month is when you will have the actual egg collection (and hopefully, transfer). Like you, I am not based in Sydney, so I did most of my cycle with my local (satellite) clinic. But PGD is not offered here, so I had egg collection, biopsy and transfer performed in Kent St. All up I had three PGD cycles. The first was cancelled = free. The second two involved transfer and came in under $4K each as I had passed the Medicare safety net. I had chromosonal testing (x8) so the cost may slightly vary compared to your genetic PGD test. Sorry, do not remember the exact amount. HTH, WTH ;)

Thank's ladies- i rang syd ivf and got all the info today i am booked in for a phone consultation on the 21st of july as we live on the coast then i will go for my appt with the FS and have our work up and see the geneticist they said it will be about 8-10 week''s then they start the with the cycles i was told $14275 all up and i would be out of pocket $5000-$6000 plus medication's and the $400 FS fee $550 geneticist fee and the $160 ph consult fee i did ask can they put 2 embryo's in to increase our odd's and can we know the sex of the embryo's before they put them in and they said i have a good possibility of that in my case so we will see

Ferrals -sorry to scare you - my PGD experience was a lot of waiting!

Hi I'm in here looking for a little help, my husband and I are currently shopping around for an IVF clinic in the Brisbane region that does PGD testing. My sister who lives on the Central coast has had success through Sydney IVF but we'd prefer not to travel (if avoidable). Would love to hear any feedback on clinics or recommendations. Thanks

Hi ladies just a quick update got all my IVF info in the mail i was also phoned by the clinic as they wanted to know all about what syndrome my daughter had they also wanted to get all the info from my geneticist at the RNS as they have already isolated the gene so i was told once we have our 1st appt on the 21st i should have my first cycle in oct as they still have to develope a test for the smith lemli opitz syndrome so they can test the embryo's but it is all looking good the ball is rolling (YEH!!!)

Rach,
the Queensland branches of Monash IVF are able to do PGD.

Thanks for your response KMN. I notice in your previous post you stated your PGD experience was a lot of waiting, was this through Monash IVF? We're booked in for Seminars at Queensland Fertility Group and City Fertility Group. I've found most clinics in Bris do PGD I just wonder how regularly and what they're success rates are. I guess I'm best to ask them these questions ;)

Hi

I have a post that doesn't really fit into boo hoo and doesn't really fit into woo hoo, and general chatter would mean that it wasn't important. Not everyone would understand (on-line or in real life) and so i am putting it out here, because i want to lay it out.

I have been watching this thread for a long time, occasionally posting but not really fitting here yet either.

I have a neuro condition, and it is believed to be genetic. I went many years undiagnosed and my parents were told not to plan for a long life. Never thought i would make 25. Then, i was diagnosed and there was a treatment. Big change in my life, i'm doing well.

Then comes the thinking of having kids. There is a chance of passing it on. My kids experience would be different because it could be diagnosed early .... BUT do i want to pass it on? What steps would i take to not pass it on?

Have been following up genetic testing for 10 years now. I have been the instigator. Geneticists have come and gone and forgotten, but i have kept searching.

Have had different results along the way that look like we might be finding the mutation. I wonder why i keep searching. 1) i want proof. Living with an undiagnosed condition, people start to wonder if it is psychosomatic or something... including professionals.. (those with experience of chronic condition will know what i mean). 2) i want to know chance of my kids having it.

Now, on point 2. What is the point of this knowledge? What will i do with it? Why i am striving so hard? Would i terminate an affected child? Would i go thru PGD? Would i want a child tested at birth? what do i tell my kids if they are affected, and i did nothing to stop this? why why why do i keep searching if the information is not going to change my actions?

Lately, the final (?) lot of genetic tests have come back. the ones i thought would give me the answer. But again they were negative (ie no mutation found) back to step one.

But, i am actually ok with it. It's like i had to keep pushing until i couldn't go any further. And now it's like the information that i was seeking is not there, so i can just let go.

I have been hyper careful re contraception for so long bc i was scared i would get pregnant and not have the information to work with. But now, i can sort of say what will be will be.

I don't know the mutation, so i can't do PGD. I can't do prenatal testing. Can't even do postnatal testing. My only decision is do i have kids the 'natural' way, or do i not have my genetic kids and look at adoption.

I am not scared of getting pregnant though now. I have done all i could, and if i got pregnant, and if the kid was affected then we would work through that. I am probably in a much better situation than my parents because they didn't know what it was, and had no experience of what it might be like.

I am not actively TTC yet, but if it happened i wouldn;t be completely shattered like i thought i would have been in the past.

Getting to the stage of actually participating in TTC will come later (more thinking to do there), but at least i am at ease if it did come earlier.

Hi Kate,

Nice to hear from you - I am no longer actively posting here as my way will probably be to try to find an egg donor but felt I had to respond to your post.

I think you sound very clear and determined, you definitely have found your way - very glad you are okay with the genetic tests coming back negative.

Wishing you every success on your journey.

Sara

Kate - I was very moved by your story. Like Sara, I felt the need to reply.

I wish I could give you some helpful advice. I do not believe in dead ends. I noticed in your signature that you are in Melbourne and as such, you would already have access to many experts in this subject. The only thing I can think of is to ask if you have tried other neurological and genetic doctors in Sydney or even further afield?

Kate, I truly admire your determination and clear-mindedness. I hope you are able to get to the bottom of this so you will have the option and opportunity of having children should you want to, in the future.

WTH xx

Thank you both for your lovely words.

I have followed both your stories, and wish you all the best.

Thanks again. it means a lot.

It has been a while since anyone has posted on here...

Just wanted to write that (to date) I have had a successful cycle of IVF with PGD. In my circumstance, we were testing for chromosonal abnormalities.

If anyone has any questions, however silly they may seem, please feel free to PM me and I would be happy to attempt to answer them and share my experience.

WTH :D

Due to only recently getting in contact with my birth father and discovering he has haemephillia (thank goodness we found this out before I got pregnant!) we are looking at PGD hopefully asap as I don't want to be an older mother (am 31).

Can anyone give me more info on the sucess rates of this? We are looking to make an appointment at Sydney ivf with someone to discuss how this works as my husband and I are very new to this. We've already discussed with a genetic counsellor who basically spelled out our options. Its all very new and very confusing. I never thought I'd have to make this kind of choice. :(

Hi Jo

Frustrating how something we all take for granted can turn on its head. I grew up just expecting I'd have a family, and when I got married I thought it was a done deal. After all, having kids is part of life's "package". I know you must be feeling very worried about the road ahead :hug: I also went through SIVF, though in my situation I used PGD to bypass most likely age-related chromosonal issues. I check the SIVF website and they do indeed advertise they have developed tests for haemophilia A and haemophilia B.

The great news is, you are not seeking IVF for infertility problems. At your age you most likely still have an abundance of eggs, which is a great start for PGD :D Also, PGD has a high success rate after transfer - comparatively above that of standard IVF. This is partly because some people who do PGD do not have infertility issues, such as implantation problems.

In my experience, SIVF were excellent - they really know this stuff inside-out. It all started with a phone call. I spoke to a PGD nurse co-ordinator who answered my myriad questions (some clever, some not so clever). She explained the whole process to me. Generally, you get a referral from your GP to a SIVF Fertility Specialist. I then made appointments with the Kent St Clinic where I met with a SIVF PGD nurse co-ordinator, a counciller and PGD scientist. During the latter meeting I quizzed the PGD scientist about success rates and they emailed me the most up-to-date figures (more current and more detail than those posted on the SIVF website).

I will be honest and say I did find the IVF process very stressful and it did not work for me first-time. But the potential reward obviously outweighs it all.

I wish you all the best, Jo. Hope this has been of help to you.

WTH ;)

Jo1978-i hav just started with PGD at SIVF as my DH and i are carrier's of a genetic condition they have been fantastic so far and have rushed a lot of the work up so they can get the gene testing under way to develope our probe in time so we can hopefully get to ET in nov they have even organised our daughter's DNA sample's to be sent from S.A. to them and sent us DNA kit's and blood request's in the mail they have rang the RNS and chased up all of our daughter's and our test result's to hurry thing's along i can not fault them give them a ring and i hope you will be on your PGD journey with us soon.

Well in the mean time I've been to the doc and picked up the pill while we consider our options. I've still got to go through a number of testing to find out if my birth father is really my birth father! Doesn't help he lives in NZ. I've sent off an email with a consent form to him to access his records so that when I go get tested for the defective gene they know what they're looking for :(

Just a question anyone doing ivf on kent street is there discounted parking for ivf patient's or do you know anywhere there is cheap parking close by.

Ferrals - yes, it costs a bomb if you park in the one in the same building, and we found it hard to find a parking spot. Sorry - no discount :rolleyes:

Twice we also used one across the road from the building entrance, which might have been cheaper, but it is not very large and may fill up. They park your car for you. I think it is just open weekdays.

Other than that, there is cheaper parking at Darling Harbour, but certainly very far to go if you are doing EPU.

For weekends there is a well-priced one a few blocks south on Kent street - I think $10 a day. Handy to know because the one in the IVF building is closed on weekends. Sorry that I can't be of more help!

Good luck :goodluck:

Where there's hope-Thank's for the info we have 2 day's of appt mon and tue and with $900 worth of geneticist and andrology bill's i was trying to get cheaper parking oh well thank's anyway.

Hey ladies,

Am new here to this forum! My husband and I have just started on our 1st cycle of IVF PGD with Sydney IVF under the care of Dr Lok. We got the fantastic call from the IVF Scientists on the evening of Jeans for Genes day letting us know that they had completed our work up (The test to test the embryos for my husbands genetic condition) and have given us a 99% success with that test. Yay!

So today is day 4 of the beginning of our 1st cycle. Am taking 10 units of Lucrin Injections each day. Was terribly worried about giving myself the injections however the great PGD nurses at SIVF assured me all was ok and walked me through my first so now I have comfort in knowing that Im able to do these. I must say though, I know that the Lucrin is going in because Im injecting it however its weird because I dont feel anything! Hoe do I know its doing what its supposed to do! Anyone have any side effects from Lucrin???

Any way, stop taking the OCP last night and have my first blood test to see all is going well with the Lucrin on Thursday. All going well and levels being what they need to be I start my FSH injections on Sat.

Fingers crossed with everything though. I hope that because we got our call from the scientists on Jeans for Genes day its a sign of great things to come!!!!! Were praying every day for the best case scenario.

Hope to hear from everyone else out there and their IVF PGD stories. Will be sure to keep you posted. We all need support and I know, with all that is yet to come, I'll be back on here for your support.

Motherhood here I come - wishing you every success with your IVF cycle :goodluck:.

There are a few of us lurking on this thread, even though some of us may not be cycling at this time.

I found the IVF journey to be more stressful than anticipated - you have come to the right place for support ;) Like you, I was very apprehensive at giving the needles to myself, but it does get easier. I used Lucrin on my first cycle (I did three all together before I had success, but I am now 39). I got headaches into the second week. I think this is to do with it supressing your hormones.

Take care
WTH :D

Arrrugh my alleged birth father will not release his medical records so we can go start the genetic testing process!! Im feeling so angry and frustrated!!! I already have major issues with my mothers side of the family that don't ever seem like their going to be resolved and I don't need this as well :(

It may take a lot longer (ie a couple of years), but they can usually hunt for dodgy genes based on you alone. Hang in there - and talk to the very best genetic counsellor you can find (usually attached to a children's hospital).

Jo - this must be so disappointing for you :doh: Don't mean to rock the boat, but are you able to get some kind of legal point of view on this, as you have a special circumstance which may mean your situation might be reconsidered?

Jo, genetic testing may be able to be done on you alone but like Kmn said it will take longer. Was your Dad born here? Are you in the same State where his genetic testing may have been performed? Sometimes genetic information can be used by the lab, without it being given to you, that can help speed up testing. Alternatively, do you have any contact with other family members who may be carriers (his mother or sisters)? They may have had testing and be happy to share the results with you.

Even without this information, make an appointment with a genetic counsellor/geneticist and they may have more suggestions for you.

take care,

Kate

kmn: They need me to get permission to access his records in NZ. The information he supplied without giving full access isn't enough. Theres a big difference between 1 month of testing with his genetic information and 12+ months of testing without it..

Hi ladie's

Motherhood-welcome i am a newbie also we are ready to go just waiting on our probe which the scientist say about 8-10 week's i collected all my bit's and piece's today and it is a scarey process but i'm excited all the workup blood's ect are done so just waiting on green light i hope you get success on your first cycle.

Jo-i agree with kate is there any other of his family members that you could test.

AFM-had my 1st day of IVF appt came home exhausted with a bag full of goodie's heaps of ultrasound and pathology form's and prescription's for all my medication's they are going to start me on a short cycle (orgalutran) we go back tomorrow for another day of appointment's then we are all set to start as soon as the scientist's gives the thumb's up that our probe is ready we can start so it's all happening and going pretty quick now just this stupid probe we are waiting for and i also found out the government got there way the medicare rebate is being scraped so it looks like will just make it in time for one maybe two cycles if nothing goe's wrong.

Hey there,

Thanks for all the well wishes.

Ferral4, I know what you mean about the meeting up and getting all your goodies and then waiting for the work up. But I tell you now, when we got the call on the Friday night, Monday I called the girls and let them know and they were like "you can start this Thursday". It can happen quite quickly after you get the all clear :clap:.

With the work up though, we did have to wait a full 12wks before we got the call. Although with many other things going on in life, I'm sure the time will fly for you guys.

Good luck again to everyone. FIngers, toes, arms, legs crossed that all of us on cycle get a PBT :pray:

Jo,
I know all about the waiting (the first step in my PGD journey was to find my dodgy gene!). But if you have to it is do-able, and you are young enough that it shouldn't make a great deal of difference to your eventual chances of conceiving.
It can also be very confronting for someone to face the fact that their child is trying to "exclude" part of them, even if that part is something as nasty as potential hemophilia.
Best of luck
Kate

Also - do you need to have your Dad's medical records and samples to be able to take the sex-selection route to avoiding hemophilia?? Is that something you would consider??

:

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Hi ladie's

Motherhood-welcome i am a newbie also we are ready to go just waiting on our probe which the scientist say about 8-10 week's i collected all my bit's and piece's today and it is a scarey process but i'm excited all the workup blood's ect are done so just waiting on green light i hope you get success on your first cycle.

Jo-i agree with kate is there any other of his family members that you could test.

AFM-had my 1st day of IVF appt came home exhausted with a bag full of goodie's heaps of ultrasound and pathology form's and prescription's for all my medication's they are going to start me on a short cycle (orgalutran) we go back tomorrow for another day of appointment's then we are all set to start as soon as the scientist's gives the thumb's up that our probe is ready we can start so it's all happening and going pretty quick now just this stupid probe we are waiting for and i also found out the government got there way the medicare rebate is being scraped so it looks like will just make it in time for one maybe two cycles if nothing goe's wrong.

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I don't know any of them

Hello :hello:

we are beginning our IVF part of our PGD 'road trip' that started two years ago.

Found this thread and would be very glad to have the opportunity to share with some of you!.. really impressed by all your knowledge and insight!!

I have egg collection on Monday :o

Welcome Onja!
I hope your time in this thread is short and sweet :)

If you also want to talk about general aspects of IVF, you can find a good thread HERE too. You are welcome to post about your PGD journey in the PGD thread. There are a few other members who are either going through PGD or have done in the past.

Wishing you all the best. Good luck on Monday.
xx

Thanks Dusty :)

I will check it out

I have never met or spoken to anyone doing PGD.. so hi PGDeans

I guess you guys would be like me in finding myself a little 'out of water' as far as the norm IVF infomation, newsletters etc. Explaining it to people can be 'interesting' as although most people are aware of IVF - few have heard of doing it for PGD reasons.

Hi onja we are a bit quiet in here at the moment a lot of waiting if you don't mind me asking why did it take so long to develope your test what was the test for? good luck for your egg pick up monday.
I have been told my test should not take to long as i sent off our DNA week's ago and they got our daughter's DNA sent from a lab in Adelaide so the probe is almost complete just waiting on a few test's from America hopefully the right one's then we will get the go ahead i look forward to hear how you go please keep us up to date.

Welcome onja,
All the best with the next stages of your journey.
Kate

Hi Onja,

Hope your EPU went well and wishing you all the best for the next few days.

Sara

Hello everyone and thank you so much for the welcomes :)

Ferrals - my PGD is for a disease called Neurofibromatosis (NF).

The test took much much much longer than originally anticipated. The first part - gaining DNA analysis from the United States didn't take that long (about 5 months) but then the trouble came when trying to gain the gene 'marker' part of the test. They couldn't get the information that they needed and we had to go through 11 family members before they could get it... (they needed a differential marker and ALL my family membvers had the same one) this was a nightmare to explain to family and friends who were feeling exasperated at what they were looking for and what was taking so long. :wall:

I guess this may be the one place where people would understand that :)

Off for my first egg collection tomorrow. I was overstimulating a bit so hopefully they get a few :clap:

I certainly understand your marker-hunting problem! We went through two clinics, 3 years (and Prof. Sheffield's remaining hair) before we had enough linked markers for a reliable test....

Wow Kmn - three years!

Was your linked marker prob similar to mine or other issues? It's a frustrating issue and hard to explain to people... so much time just to get to the front door!

Very similar, except that in my case there were very few suggested linked markers in the literature, and the first round of test development tried the two they thought were most promising and came up with neither being useful.
That was heartbreaking - essentially the first clinic had a test that was only maybe 80% reliable, and so they wouldn't let us use it. We thought that reducing the chance of having to make the very very difficult terminate/take the risk decision from 50% to 20% was well worth the effort, but they disagreed. Then the scientists at the other clinic found some more papers and thought that there were another couple that were worth a shot - and actually came up trumps with a 95+% reliable test.
Amazingly we were successful on our first try of PGD/IVF - I'm sending the same vibes to you!

The way I explain it to people is like this: you can only take one or two cells from an embryo to test. So the first step of testing is to put the DNA from those cells through a process like a photocopier, to make enough DNA to do chemical testing on. And then you hunt the dodgy gene in this larger sample of DNA. If you don't find it then there are two possible reasons - the embryo doesn't have it (yay!) or the "photocopying" process didn't work (not yay....). The markers are things that they can look for to check that the photocopying process worked, since they are near the affected bit of DNA and are the same in both parents so they should always be there.

All the best for the next couple of weeks - it will be incredibly upsy-downsy. The nurses and counsellors at the clinics are wonderful at this time - I'm pretty sure I nearly drowned a couple of them!