IVF with PGD #4

[Kmn]

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

[Rach1980]

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

[ferrals4]

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!!!)

[Kmn]

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

[Rach1980]

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

[Kate07]

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.

[Sara69]

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

[Where there's hope]

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

[Kate07]

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.

[Where there's hope]

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

[jo1978]

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.

[Where there's hope]

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 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 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

[ferrals4]

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.

[jo1978]

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

[ferrals4]

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.

[Where there's hope]

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

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

[ferrals4]

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.

[Motherhood here i come!]

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.