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  1. #151
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    Hi @VanessaM
    I just wanted to share my story and offer you some support as well.
    In 2011 we discovered we had MFI and went through 5 unsuccessful IVF cycles, with no positive pregnancy tests at all.
    We transferred to Monash after hearing about Dr Nick and The Centre For Infertility solutions. After further investigation it was discovered I had High level NK cells and a partial DQAlpha match.
    Unfortunately our first cycle at Monash was unsuccessful again. However, on the second attempt - after LIT treatment and intralipids - I fell pregnant and I now have a beautiful 6 month old baby girl. Without Dr Nick if have no doubt I never would have fallen pregnant or carried a baby to term. I'm 32.
    While the diagnosis is another horrible Infertility hurdle you need to climb, try see it as having more information so you can tackle your issues with the right treatment, and not waste your time and money on treatments that aren't perfectly tailored for your issues. And I can assure you it's totally worth it in the end. Good luck! I hope your dreams come true soon!

  2. The Following 2 Users Say Thank You to freakedout44 For This Useful Post:

    ange1111xxx  (20-10-2016),KittyCat  (20-10-2016)

  3. #152
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    Quote Originally Posted by freakedout44 View Post
    Hi @VanessaM
    I just wanted to share my story and offer you some support as well.
    In 2011 we discovered we had MFI and went through 5 unsuccessful IVF cycles, with no positive pregnancy tests at all.
    We transferred to Monash after hearing about Dr Nick and The Centre For Infertility solutions. After further investigation it was discovered I had High level NK cells and a partial DQAlpha match.
    Unfortunately our first cycle at Monash was unsuccessful again. However, on the second attempt - after LIT treatment and intralipids - I fell pregnant and I now have a beautiful 6 month old baby girl. Without Dr Nick if have no doubt I never would have fallen pregnant or carried a baby to term. I'm 32.
    While the diagnosis is another horrible Infertility hurdle you need to climb, try see it as having more information so you can tackle your issues with the right treatment, and not waste your time and money on treatments that aren't perfectly tailored for your issues. And I can assure you it's totally worth it in the end. Good luck! I hope your dreams come true soon!
    Thanks so much for your story freakedout44. It's so good to hear positive news like that. But I but I feel like at 39 I have little hope now. I found out too late. What does MFI mean? It was the cost at Monash that freaked me out initially. I mean 5 cycles at 5K out of pocket each, plus the immune therapy on top, that's a lot of money. And how long is the wait in between? I.e., how long do you have to be on immune therapy for? The between appointments is so long! We have to wait til the end of November just to discuss the NKC letter which I don't even understand if it is a full or partial match. I think ping383 said it was full. I have been thinking that seeing my appointment with Primary is early Nov... maybe I could get them to pull my eggs out and make the embryos then put them on ice til I see Dr Nick Lol at the end of Nov then have them courier them over to Monash (if I get any) for PDG and preparing my body with the immune therapy. Onedaymaybebaby had immune therapy at Primary IVf coincidentally with a Dr Nic. Although she had to guide him and I personally have no clue. The counsellors at Monash said it looks like I won't be starting til next year with them as Dr Nick Lol has a long wait list but I don't want to wait til I turn 40 before getting my eggs picked up. I'm better today mentally but broke down at work yesterday. I can't seem to hold my **** together and haven't even started ivf yet! Ffs. Thanks again! ❤️

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    ange1111xxx  (20-10-2016)

  5. #153
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    Quote Originally Posted by ange1111 View Post
    @VanessaM I hear ya honey I'm 42, yes the clock is ticking loud.
    Get some support now - I'd highly recommend seeing GP and getting a mental health plan for reduced cost psychology sessions. Choose a psych first if you know a good one (or ask trusted friends for a recommendation). I wish I did this earlier. It's good to chat with someone in a safe space so all this stuff doesn't bash around in your head!

    Also a couple things, yes I understand urgency, but prob things won't change dramatically in a couple months, although you never know and if you feel in your gut to get going then do it. Start the train in motion with Primary as there's no upfront cost and can cancel if need to.

    If you get eggs picked up at primary it is unlikely they will freeze-all unless your progesterone is high (which it has been for me) - don't worry about what that means for now. They can freeze all for other medical reasons I believe so perhaps if you say you're getting some immune stuff done they will (be very aware that not all FSs believe in immune issues and will try and poo-poo it, so stand up for yourself or keep it to yourself and take charge).
    However in theory yes you can get embies couriered to another clinic.

    Did you say you got results for HLA match and there is an obvious match (I'm no expert in deciphering results but if you have a compels match it should be clear). You will need LIT. Does Dr Nick do LIT? I'm not sure if Primary would do LIT, I think it's pretty specialized? You may need to see Dr Matthais for that, two trips to Sydney or find out someone in Melbs.

    LIT is for HLA match stuff (which isn't necessarily related to elevated NK cells)

    Intralipids corticosteroids and other things are for elevated Natural Killer cells.

    This has been the hardest journey of my life, we can relate to what your feeling. I recommend downloading the app Calm to your phone and doing a ten min meditation session each day too, helps me when I can't get it together and I'm quite an experienced meditator xx
    Thanks so much ange1111. I'll do everything you asked. Not sure what sort of match it is, I just got this in the mail. I'm not sure if Dr Nick Lol does LIT? I have a phone appointment with Dr M on 24 Nov. Primary IVF on 9 Nov. I'm feeling better today. First day I have not cried in a week (since getting the letter in the mail). I took your advice and I'm seeing a psych in a few weeks. What has your journey been like so far? Thanks again for the support. ❤️IMG_1477043726.876905.jpg

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    ange1111xxx  (24-10-2016)

  7. #154
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    Default High NK cells and possible DQ Alpha gene match

    Hi all, I have some bad news. Dr Stan Tsocanos has passed away from a heart attack. Such devastating news. He was only 59. I had many investigative appointments with him and he eventually diagnosed my natural killer cells and referred me to Nick Lolatgis for immune issues. He was such a caring and beautiful man and treated my best friend and cousins. Very sad.
    Last edited by KittyCat; 28-10-2016 at 07:16.

  8. #155
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    Quote Originally Posted by VanessaM View Post
    Hi all, I have some bad news. Dr Stan Tsocanos has passed away from a heart attack. Such devastating news. He was only 59. I had many investigative appointments with him and he eventually diagnosed my natural killer cells and referred me to Nick Lolatgis for immune issues. He was such a caring and beautiful man and treated my best friend and cousins. Very sad.
    I cant believe it - I just met him Tuesday before last for the first time. I was hoping I finally had got to a situation where I had everyone in place who would help me with my immunology journey and I had heard such good things about him from many people so he clearly had done great things for a lot of women and families. That is sad. Life is so fragile.
    Last edited by ItisComplicated; 28-10-2016 at 11:13.

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    KittyCat  (29-10-2016)

  10. #156
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    Default HLA testing and costs

    Hi ladies, may I ask is there a cost for hla testing and where to do in perth?

  11. #157
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    Quote Originally Posted by snoopybaby View Post
    Hi ladies, may I ask is there a cost for hla testing and where to do in perth?
    Hey there, I think it cost me $160 but I did it in Sydney with Dr M. Not sure where you do it in Perth.

  12. #158
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    Default HLA testing and costs

    Thank you. I am Dr M patient too. I have done HLA and DNA blood test with st john of god in Perth almost one month ago. My and hubby bloods somehow send to NSW and there is a fee to conduct the testing. But my blood test form for stated via Red Cross. G called me saying there should not be a fee and she is waiting for st john of god reply why my blood send to them.

    I am losing patient, just wanting to know the blood test result. I will call G again.

  13. #159
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    Mine was $110 each through Red Cross. Why do some doctors say not to pay any attention to it?


 

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