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  1. #591
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    @KittyCat its related to kidneys. We were told the worse case is dialysis from birth. I had a friend go through this to eliminate musc dyst but it never worked out for them. Her parents paid for the whole process. I have no idea what we are looking at. We will take it step by step I guess. We are keeping our options open. This was above our FS's head.

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  3. #592
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    Default IVF Over 40's #45

    @Spazzyp - oh no! That's terrible! Some days it feels like the whole process works against us!
    I'm in the same boat re FS... There Dr Logiatis (sp?) at Monash who is into immune issues but Ive had no luck either. I've had a friend who's had success with city fertility.

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  5. #593
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    Thanks ladies.
    They offered me an appointment with charlotte, just weighing up the hassle of going interstate vs trying someone else. Quite a few have recommended dr NL, so maybe have a cycle with him and then see where I'm at? Or maybe try naturally for a few months with Dr Ms protocol... I wish I had time on my side, at the moment all I can hear is the tick tick tick of my old eggs...

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  7. #594
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    Its a hard decision @Spazzyp as you are flying interstate but will just say Charlotte is lovely and just as proactive as Warren. She did my successful transfer and a couple of my epu's. Also if you start with her I am presuming you will be transferred back to Warren on his return if thats what you want. I know though its a hard decision flying such a distance for treatment.

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  9. #595
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    Default IVF Over 40's #45

    Hi ladies all went well yesterday. I had one embryo FS was beautiful and ready to transfer so in it went. The other two were a little behind so they'll give me an update on those tomorrow and if they've caught up they'll go for testing. BT 8/8 we have everything crossed!
    Last edited by Bunnysmum; 31-07-2017 at 11:32.

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  11. #596
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    @Spazzyp, I saw Dr NL, the problem is I had to wait months in between my appointments and I also found him to be a bit negative. In the end (against his advice) I decided to try with Primary IVF (bulk billed) and got my FS to add the Bondi Protocol into my treatment (you could do that so you save $$ and use Dr M's protocol. I was going to try that if this didn't work). Well it worked even tho Dr NL said it wouldn't (he gave us an 8% success rate with him as DH and I had a full DQ Alpha match and I had high NKC). IMO, if you're already 40, I wouldn't try naturally as I did that too with Bondi Protocol and it didn't work. I would go straight to IVF.
    @Billie2, is it Alport Syndrome? Does your DH have kidney issues currently? My niece was born with Ataxia-Telangiectasia so we went through testing for that plus I am an Alpha Thalassaemia carrier so we had to test for that too. We ended up having the Counsyl test done: https://www.counsyl.com/services/foresight/diseases/ and after all that had to go back to VCGS recently to discuss whether our unborn baby had Achondroplasia! It's so stressful but hopefully it will work out for you as these conditions are so rare. What state are you in? Let us know how you go.

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  13. #597
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    My FS just emailed me to come in and see her on Tuesday and she will bulk bill me. I'll take her up on that as it may shed light on what she is going to do... then I'll make a call.
    Thanks to you all for your advice and support as always xo

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  15. #598
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    @KittyCat I am currently at Primary and DrMac said she cant treat us because of this. This has all just happened this week. So DH hasnt even seen the specialist for his kidneys yet. Only just got the CT scans back. Still all so early. Im not understanding how you were still treated at Primary. It was like she wanted an excuse to refer us to another clinic as I am a problem child bringing down the stats!

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  17. #599
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    @Billie2, I'm sorry I've confused you. I saw a geneticist outside of Primary (VCGS). Luckily we didn't have to have any embryos tested because our carrier (Counsyl) tests came back okay (DH wasn't a carrier for the same conditions I was). It was my sister that had to have her embryos tested for the genetic condition A-T as she had already had a child with it and wanted another. She went through Monash. They developed a test specifically for this condition and then implanted the unaffected embryo. My second niece was born 4 years ago perfectly healthy. Primary can't do this type of testing (PGD for a specific genetic condition) as far as I know but I'm in Melbs. I guess that's what your specialty clinic will do. It's such a pain in the @rse because it takes time. Can't the specialist clinic do a stim cycle now, bank your eggs/embryos and test them after you get your results so no time is lost? Also why did your DH get tested in the first place? Was he having renal issues? I think that sometimes we have access to way too much information. Only a few years ago we wouldn't have known any of this. Thinking of you and what you're going through. It sucks. It's the shock of it all that gets you in pieces but this too will settle. X

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    @KittyCat doesnt take much to confuse me at the moment. My DH was tested as a kid because his mum had polycystic kidneys. My DH has been unwell and put it down to stress as his dad passed away at Easter after an aggressive fight with dementia. My DH lost his mum in an accident 4 years ago so he put it all down to stress but realised something wasnt right now time is passing. He had a scan then a CT and a heaps of bloods. So we will have a better idea once he sees his specialist and then the geneticist. And we will have DS9 scanned as well to see if he is clear. I guess its hard enough to fight infertility when 40, but now we have to worry about this on top. I am going to take your advice and push to cycle and freeze. But DH was so upset he is keen on just going to another clinic and going ahead there. I dont know much about clinics, our local one is IVFAus.

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