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  1. #831
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    Default High Natural Killer Cells #7

    Olive79 and PreciousHeart thank you so much. I really don't know how much more of this we can take. It consumes us as I know you guys have all lived too. I am so happy that you have had a successful pregnancy PreciousHeart and I wish you all the love and success for the rest of the pregnancy you must be feeling very nervous but are obviously in great hands now. Olive79 sending you so much positive light that it works for you also no one can understand this journey but fellow Immunity IVFers!!
    We live in Melbourne and so we would love to do the IVF with NL and immunity issues with M if he feels he can help us. I would imagine if he couldn't help us he wouldn't book us in for a phone consult right? Thank you for your replies xx
    Last edited by Jojosniss; 14-02-2016 at 18:51.

  2. #832
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    Wonderful news velvet! Im sorry i dont have advice jojoniss, we find out our test results for dq alpha match tomorrow. Im a bit nervous. My husband is extremely nervous but he does not let on. But i know he is afraid of being in the position of being a total match and then deciding on treatment or donor sperm. But i understand your feelings of being consumed by infertility. My mind ticks constantly about it and i am really tired of it. Constant hurdles and bad news take their toll. Hang in there xxx

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    Jojosniss  (15-02-2016)

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    Jojosniss and ECM1981 - all I can say is to give LIT a go if you have full matches, it lasts for 6 months so you have that long to try and then move to surrogate or donor sperm? It's such a hard thing to move to donor egg/sperm but once you do, everyone says: "what took me so long??"... because there is hope again. It's an awful journey, I hope it is all swiftly resolved for you. All I can say is that I did my PGD and cycle management with Nick Lolatgis at Monash and live in Sydney so have been working with Dr Matthias for almost 3 years too. The LIT was crucial to us I believe. Nick will give you IVIG and/or intralipid for a lot less than Dr M plus he gives you more IVIG which is good. He will let you work with Dr M and himself, that is exactly what I am doing - Neupogen and dex and clexane dose by Dr M, IVIG dose and administration by Dr Nick, progesterone from either, estrogen from Nick as part of IVF cycle - it's all possible, it just takes a lot of courage and belief and risk of heartbreak and loss of money of course. The great thing about Nick is that he will do PGD, genea didn't do that for me and in my opinion with hindsight, that was mismanagement. Spend the money, it cost us soooo much more in the end to do 4 blasts and waste them, than $3K for PGD chromosome testing. Take strength that loads of women here have walked this path successfully. Learn as much as you can, be vigilant about making sure you have all the tests you need, don't trust ANY doctor to do that, always ask questions and demand tests so that you feel 100% confident you have covered ALL bases and you don't have to go back to square 1 like we did when adenomyosis wasn't treated by genea and LIT wasn't tested by Dr M, God knows why, but Dr Nick did this for us. Keep going, I know it sucks but you can do it!!!! xxx

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

    ECM1981  (15-02-2016),Jojosniss  (15-02-2016)

  6. #834
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    @PreciousHeart and the other girls with NKC and dq alpha experience I'm wondering if you can help. I just got off the phone with Dr M. It was an overwhelming call and my mind was going 100 miles and hours whilst trying to stay calm. Here is what I picked up: I have high NKC which I already knew, my husband and I have matches in the HLA test. Because of they type of test we had here in Perth he cAnt say whether we have a partial or full match. But he said the treatment is the same anyway. We will need to be tested when we go to Sydney for the full lot. So he has recommended LIT treatment, neupogen injections. I have a couple of questions. I asked what if we used sperm donor would we have a better chance of getting pregnant and he said we would still have to do the Lit and neupogen treatment. I am confused about that part. My understanding was that my body is fighting off anything that steps foot in my uterus because of the NKC and then with an added bit of having matches in our HLA my body fights even harder to destroy them. Is that correct? So wouldn't a sperm donor eliminate some of the nasties? Then I would only be dealing with my high NKC.
    do I need to still have intralipids aswell as LIT and neupogen, prednisolone clexane etc?
    does anyone know how much Lit and neupogen are?
    Im feeling extremely anxious upset and stressed now. I feel like it's almost impossible to have a baby. I know there are lots of success stories but I'm scared that I'm not going to make it. I can't move to surrogate because the eggs aren't even mine. Xx

  7. #835
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    Quote Originally Posted by ECM1981 View Post
    @PreciousHeart and the other girls with NKC and dq alpha experience I'm wondering if you can help. I just got off the phone with Dr M. It was an overwhelming call and my mind was going 100 miles and hours whilst trying to stay calm. Here is what I picked up: I have high NKC which I already knew, my husband and I have matches in the HLA test. Because of they type of test we had here in Perth he cAnt say whether we have a partial or full match. But he said the treatment is the same anyway. We will need to be tested when we go to Sydney for the full lot. So he has recommended LIT treatment, neupogen injections. I have a couple of questions. I asked what if we used sperm donor would we have a better chance of getting pregnant and he said we would still have to do the Lit and neupogen treatment. I am confused about that part. My understanding was that my body is fighting off anything that steps foot in my uterus because of the NKC and then with an added bit of having matches in our HLA my body fights even harder to destroy them. Is that correct? So wouldn't a sperm donor eliminate some of the nasties? Then I would only be dealing with my high NKC.
    do I need to still have intralipids aswell as LIT and neupogen, prednisolone clexane etc?
    does anyone know how much Lit and neupogen are?
    Im feeling extremely anxious upset and stressed now. I feel like it's almost impossible to have a baby. I know there are lots of success stories but I'm scared that I'm not going to make it. I can't move to surrogate because the eggs aren't even mine. Xx
    Hi ECM1981 - I know it feels so overwhelming and like a losing battle, I felt the same way and I consulted with Dr M 2.5 years ago. It's not an easy path but you have found this group which will be a great strength and help for you...

    From my story and finding out about our LIT match 2 years after my very high NK cells in uterus biopsy... what I have deduced is this: number 1 problem is my husband and I have matches which is the cause of my immune issues - being high uterus NK cells. I believe that each time an embryo with hubby's sperm was put in me, my NK cells reacted and got stronger and stronger.

    So treating the NK cells was doing crap all, I needed the LIT and the NK treatment of dex, clexane, prog - I think that the matches was the CAUSE and NK one of the SYMPTOMS. So until you treat the cause, nothing will work.

    I think Dr M is saying that you should do LIT with donor sperm too unless you are able to choose sperm that does not match you in any way, not sure how you go about that though? LIT with Dr M costs 2 x $1100 and neupogen I found in Sydney cheapest $890 for 10 vials. You have to call around as suppliers vary wildly, the first time I paid $1600 for the same thing!!!

    This round Dr M got me to take everything and despite me hating it and being so scared and resistant even a year ago, it's finally worked! and I know lots of girls it's worked for too. You will likely need intralipids or IVIG, depending on what Dr M recommends for you. He started me on intralipids but I do IVIG now as I think why waste the money on lipids if it isn't strong enough for me at this point after years of this crap and so much at stake. Are you coming to Sydney or how was it all left with Dr M, are you doing IVF, I assume you are (sorry can't remember). Also you should start looking to see who can administer blood infusions in Perth for lipids or IVIG, then Dr M can tell them what to do so you don't have to travel here for it. There are some Perth girls on here, not sure if they are still reading along?

    Just to let everyone here know too that there is a FB page of members of this group - you do need to use your real name though, it's only about 40 ladies but they are a huge help and lots of them have had bubs through Dr M... PM me your FB address if you want to be added to the page, I will ask the moderators to add you

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    ECM1981  (15-02-2016)

  9. #836
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    Hi @ PreciousHeart thanks so much for your reply. We are sitting down now working out our budget so thank you for your costs. Its just so overwhelming. We are going donor egg in South Africa so its turning out to be such a huge expense. I have a Dr here in Perth whi has been administering my intralipids for my Donor cycles (3) last year and he can do iVIG too. Im nervouse about ivig though, the thought of a blood product. Does Dr M believe ivig is better then intralipids? I was quoted 2500 for one does of ivig here. How long do you need to take neupogen? How long does a dose last you? Thanks for your reply, i will PM you my facebook address xxx

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  11. #837
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    Quote Originally Posted by PreciousHeart View Post
    Jojosniss and ECM1981 - all I can say is to give LIT a go if you have full matches, it lasts for 6 months so you have that long to try and then move to surrogate or donor sperm? It's such a hard thing to move to donor egg/sperm but once you do, everyone says: "what took me so long??"... because there is hope again. It's an awful journey, I hope it is all swiftly resolved for you. All I can say is that I did my PGD and cycle management with Nick Lolatgis at Monash and live in Sydney so have been working with Dr Matthias for almost 3 years too. The LIT was crucial to us I believe. Nick will give you IVIG and/or intralipid for a lot less than Dr M plus he gives you more IVIG which is good. He will let you work with Dr M and himself, that is exactly what I am doing - Neupogen and dex and clexane dose by Dr M, IVIG dose and administration by Dr Nick, progesterone from either, estrogen from Nick as part of IVF cycle - it's all possible, it just takes a lot of courage and belief and risk of heartbreak and loss of money of course. The great thing about Nick is that he will do PGD, genea didn't do that for me and in my opinion with hindsight, that was mismanagement. Spend the money, it cost us soooo much more in the end to do 4 blasts and waste them, than $3K for PGD chromosome testing. Take strength that loads of women here have walked this path successfully. Learn as much as you can, be vigilant about making sure you have all the tests you need, don't trust ANY doctor to do that, always ask questions and demand tests so that you feel 100% confident you have covered ALL bases and you don't have to go back to square 1 like we did when adenomyosis wasn't treated by genea and LIT wasn't tested by Dr M, God knows why, but Dr Nick did this for us. Keep going, I know it sucks but you can do it!!!! xxx
    Thank you so so much PreciousHeart. So confused like ECM1981! How did you go about seeing both Dr M and NL? I don't want to offend NL after he told us he can't help us and then ask to do the IVF with him. Ideally that what we would like to do also as we are in Melbourne. Did Dr NL say he couldn't help you also? I don't know what to ask Dr M on the third? Then we have our appointment with DrNL on the 11th March. Sorry so many questions and I know we have to be our own advocate but it's so hard to know what we need to know.
    Good luck to you also ECM1981. So glad I have this forum. I'm so lost at the moment. This has been the hardest part of our journey so far I just feel totally helpless and sad and it's hard to keep going each day. Work , family everything. So thank you for your time PreciousHeart xx

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  13. #838
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    Yeah i know jojo i feel the same. Its hard to keep going and its such a financial strain. I know it will be worth it in the end to hold a baby in my arms but i hope that day comes soon. What is the best way to get in touch with Dr M? I find i am always chasing down G and i dont know who to ask with all my questions. I have emailed him but i dont know if he has time to read and reply. Does anyone ever get to speak to his nurse? Does he even have a nurse? Goodluck to jojoniss xx

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  15. #839
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    Quote Originally Posted by PreciousHeart View Post
    Jojosniss and ECM1981 - all I can say is to give LIT a go if you have full matches, it lasts for 6 months so you have that long to try and then move to surrogate or donor sperm? It's such a hard thing to move to donor egg/sperm but once you do, everyone says: "what took me so long??"... because there is hope again. It's an awful journey, I hope it is all swiftly resolved for you. All I can say is that I did my PGD and cycle management with Nick Lolatgis at Monash and live in Sydney so have been working with Dr Matthias for almost 3 years too. The LIT was crucial to us I believe. Nick will give you IVIG and/or intralipid for a lot less than Dr M plus he gives you more IVIG which is good. He will let you work with Dr M and himself, that is exactly what I am doing - Neupogen and dex and clexane dose by Dr M, IVIG dose and administration by Dr Nick, progesterone from either, estrogen from Nick as part of IVF cycle - it's all possible, it just takes a lot of courage and belief and risk of heartbreak and loss of money of course. The great thing about Nick is that he will do PGD, genea didn't do that for me and in my opinion with hindsight, that was mismanagement. Spend the money, it cost us soooo much more in the end to do 4 blasts and waste them, than $3K for PGD chromosome testing. Take strength that loads of women here have walked this path successfully. Learn as much as you can, be vigilant about making sure you have all the tests you need, don't trust ANY doctor to do that, always ask questions and demand tests so that you feel 100% confident you have covered ALL bases and you don't have to go back to square 1 like we did when adenomyosis wasn't treated by genea and LIT wasn't tested by Dr M, God knows why, but Dr Nick did this for us. Keep going, I know it sucks but you can do it!!!! xxx
    Hi! Thanks for share FB group information . I 'm just PM you about my e mail and my name also for join to FB. Have you receive my messages yet? Thanks!

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    Hi guys,

    Does anyone here have match with hla DQA-1 01,05 with husband what was the treatment recommendation and was it successful? Who is the cheapest IVIG provider in sydney?


 

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