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  1. #781
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    Quote Originally Posted by Hope06 View Post
    Hi ladies,

    It has been a while since I posted and I apologise in advance for this lengthy message but I want to let you know about an important development that has the potential if it goes ahead to help many women.

    Some of you may be aware that Dr Warren DeAmbrosis and Dr Mooring (QFG) travelled to New York recently to meet with Dr Braverman to discuss the possibility of setting a laboratory up here in Australia that would have the potential to do similar testing to what is being done currently via Reprosource.

    My understanding is that the information gathered during this visit will be discussed at the next Virtus Health Management Meeting where further decisions are likely to be made regarding the feasibility of this idea and I am sure the level of interest they think they would get from Australian patients would be part of this decision making process.

    If this laboratory goes ahead it has the potential to help many woman access testing here in Australia in a more timely and cost effective manner, without the added headaches that many of us have had to face sending blood overseas for testing. If this gets up and running then testing could occur in Australia in as little as 6 months. Wazza has suggested that if this is something that people feel strongly about then we should email the Qld Managing Director of Virtus Health, Steve Zeppia outlining our thoughts but more specifically the reasons why we think having a laboratory in Australia is important and the difficulties we face using the overseas labs, for example, expensive shipping costs, delays causing bloods not to be tested, issues regarding validity due to lengthy shipping time etc.

    I would love to see as many people get behind this as possible to try and make this happen. I am sure most of you agree that when it comes to Reproductive Immunology, Australia is miles behind other countries. If this goes ahead I am sure it will have huge implications for how Fertility Specialists in Australia view Reproductive Immunology issues. The flow on effect from that could be huge and hopefully will allow many woman who walk this soul destroying path behind us get a correct diagnosis and treatment sooner, allowing them to get their take home baby sooner. This may be our only opportunity to have some say in the future of Reproductive Immunology in Australia so it would be great if as many people can get behind this as possible and help make this happen.

    Remember ladies - power comes from numbers!!!

    Email: steve.zappia@qfg.com.au
    Wow @Hope06 this is wonderful news. Thanks for posting. I'll definitely send an email. I think I've finished my family but this is so fantastic for ladies out there still waiting for their bubs. Hopefully lots of people who have found this thread useful will send an email too.

  2. The Following 2 Users Say Thank You to Bella978 For This Useful Post:

    Hope06  (29-03-2015),Pauli77  (28-03-2015)

  3. #782
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    Hi ladies, proper post after work but @Scruffy I'm pretty sure I've got the IVIG rates written down at home. From memory I think it was 25g over 5hrs and 20g over 4. I'll have to look up grams per ml to work out infusion rate. I'll get back to you

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    Scruffy  (28-03-2015)

  5. #783
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    Hi girls,

    I am very sorry how bad I had disappeared - Until now I was feeling very strong emotionally but somehow the IVF broke me -
    To resume, taking in consideration the great ovarian reserve that the doctors were telling me I have - they only could retrieve 7 eggs, only 5 mature enough to put in the dish and from that only 3 got fertilized via IVF- We were lucky enough to get one blastocyst. The only one that we have frozen of the whole circle. I was devastated right after egg retrieval- but after the roller coaster of the 5/6 days after egg retrieval,we were trilled at least we got one!

    I think my expectations crashed me into reality -
    Plus my body was not doing well- I get a terrible cold the same day of egg retrieval and left to Australia for second LIT too soon after that -
    We actually received the news about our little "baby proyect " in the freezer while in Australia-
    It reached a point I could feel my body almost screaming at me..."what 's going on here!!! "
    To add to the cocktail, Gwyneth told us that IVIG 20 grams (that's what I need ) costs AU$3000 - we almost fell over....Thought is was around AU$2000 but not 3000 ! Now my DH doesn't want me to check the LAD and Cytokines levels before we put the embryo back - So..it's been tough - Keep telling him, It's a lot of money but definitely worth it (because we live in Nz is actually about $400 more expensive send the blood from here than from Australia and by the time we pay the return ticket to Aussie- whola! we almost have a ticket return to US were the labs are)...
    The Alan Beer Center is telling us that if we don't check the bloods, then they will assume my levels are not quite right to clear me for cycle and I will have to have Humira for a month- Humira is actually really heavy drug that none of the doctors here in Nz are keen on , neither Dr Matthias..so of course DH is telling me no way you go into Humira...If he could only understand I would do ANYTHING to have a healthy baby on my arms... !

    Anyway, back on board now I 've been reading, catching up in how you guys are doing :-) Nice to see some newbies too :-) Welcome girls!

    @MGCBertie: Sorry I missed you on March 20th at Dr M Clinic. How was it?

    @ MissSagi: Hope your weight saga with prednisolone is getting better and I am glad to read the pregnancy is going well
    @bbhope: Must be hard to coupe with anxiety right now, not sure if it is your cup of tea but Yoga and Meditations sometimes can make the trick.
    @Legwarmer: You are doing sooo well ! Thanks for the advice on the injections in the thighs , I haven't started with Clexane just yet, but hopefully will be in a couple of months or so ....
    @Karolina: The Laparoscopy and removal of mild endometriosis here in Nz cost lots of money (by the time the hospital,doctors, surgeon,anesthetic,materials they used in the theatre, etc was taking into account-)the cost was over NZ$10.000 Thank God our private insurance paid for everything- so $3.000 or $4.000 doesn't sound that bad- Make sure they include every single thing in the quote- ei. the materials they used in the theatre here was over $3.000 -I couldn't believe it!
    @Scruffy: All the best!!! Let's have everything crossed this one will be the one
    @eveclo: All the best with your appointment with Dr Matthias, he is a good man- don't be intimidated by the lack of modernization in the Clinic- and with Gwyneth, you will have to bug her, even if you don't want to- she is quite overwhelmed with work- so, you will get used to chase her...
    @missalina:Very sorry for your lost,hope you recover soon from this difficult time. if intrallipids didn't work, maybe IVIG will ? At least that's what they say....
    @Hope06: What amazing news with the potential of having a lab in Australia! You got me jumping up and down! For people from Nz like me is also a big nightmare to get tests done. I will definitely write an email and also share the info with my Nature path lady - she is being trying to help people here with Reproductive Immunology issues for some time now, and was the one that put me into the direction for the Alan Beer Center and Dr Matthias-

    Sorry for the looong "me...me "email, really needed it to update you guys and also get it out of my chest.

    pd:excuse my english , is my second language...

  6. The Following 5 Users Say Thank You to Pauli77 For This Useful Post:

    Hope06  (29-03-2015),Karolina  (28-03-2015),Legwarmer  (29-03-2015),Miss Sagi  (29-03-2015),Scruffy  (28-03-2015)

  7. #784
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    Quote Originally Posted by Bella978 View Post
    Wow @Hope06 this is wonderful news. Thanks for posting. I'll definitely send an email. I think I've finished my family but this is so fantastic for ladies out there still waiting for their bubs. Hopefully lots of people who have found this thread useful will send an email too.
    Thanks Bella, I hope all the lades on here who have found this thread useful make the time to get behind this idea and send a quick email. Helenmac originally started this thread so that those of us facing similar issues had a place to share information and support each other. Having a lab in Australia capable of running more thorough tests has the potential to help many women both now and in the future.

  8. The Following 4 Users Say Thank You to Hope06 For This Useful Post:

    Bella978  (30-03-2015),francesthecat  (29-03-2015),Pauli77  (29-03-2015),SimpsonDesert  (31-03-2015)

  9. #785
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    @Hope06: What amazing news with the potential of having a lab in Australia! You got me jumping up and down! For people from Nz like me is also a big nightmare to get tests done. I will definitely write an email and also share the info with my Nature path lady - she is being trying to help people here with Reproductive Immunology issues for some time now, and was the one that put me into the direction for the Alan Beer Center and Dr Matthias-

    Thanks Pauli, with enough interest, if it gets the go ahead it could be up and running in as little as 6 months. Still soon enough to help many of us on here. All the best with your journey x

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    Pauli77  (29-03-2015)

  11. #786
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    Pauli... yes, IVIG is very expensive. It's worked out per gram, for instance I have 15 grams = $2250. I just got my calculator out and that's exactly right, 20 grams = $3000.

    AFM.... Last night I had another dose of Intrallipids with Dr M, but strangely the protocol was shorter than usual, and I was finished by 9.30pm, instead of the usual 10.30pm. It went like this:
    - normal 1 litre bag saline at rate at 900 ml/hr, with 20 ml/hr until Dr M shows up
    - Dr M arrived at 4.50pm and put on the 500ml Intrallipids at usual rate of 110 ml/hr
    - he does his rounds, and this time when he came back he upped it to 125 ml/hr, which either he hadn't done so in the past or I hadn't noticed. I only noticed this after he left, otherwise I would have asked him. I did a calculation of extra 15 ml/hr and worked out it was going to be 45 minutes quicker.
    - then at the end of the night, there's the 250ml bag of saline, which usually is at a rate of 500 ml/hr, so usually takes 30 minutes, but the nurse put it on at rate of 1000 ml/hr, so we were 15 minutes quicker there too.
    I wish now, that I'd recorded all rates previously, as certainly I'm going to make a note of them in the future.

  12. The Following 2 Users Say Thank You to MGC Bertie For This Useful Post:

    Pauli77  (29-03-2015),Scruffy  (29-03-2015)

  13. #787
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    For trial experiment like intralipid, I personally doesn't think the precise infusion rate matter as long as it is slow. The reason i say this is that each of us absorbs the fluid differently. I really like the idea of having a lot of saline flush before hand as it hydrates the body. It also isn't a precise science since you might notice that it can go a bit longer or shorter depends on DrM arrival time. In Perth, my flush at the beginning is fairly fast, ranging from 3--5 mins. Again, depends on the Dr schedule! The intralipid infusion rate goes from 120 to 125ml/hr. The saline flush is a bit longer at the end depends on which nurse is on call. I was only upset once when a nurse didn't bother to let me finish the last small amount of intralipid. The rate needed to be adjusted at the very end to get the last bit out. Hey..it is expensive.

    In any case, @scurffy, I hope you have a better luck with the IV catheter than me. I had to suffer 4 times to just have that thing in on my last visit. I should have said no when the nurse clearly didn't seem to know how to do it or didn't show no confidence of doing it! Speaking of that, I am doing another round of intralipoid this week even though DrS thinks 3 doses is enough (4w, 6w and 8w). I feel more comfortable to go on with another one at ~12w. I guess it is good for business and he has no objection. If i want, i can have another one at 20w like you ladies here.
    @Hope06: excellent news about the lab in Oz.
    @Pauli77: If anything i learned, it is best to get everything tested before doing any transfer. Yes, it is expensive. Since you already spent so much $ this round, you might well go all the way. If it works, it saves you even more for the 2nd round. If it doesn't work this round, at least you know you have tried your best. No regret. I say this because I still have regret for my first IVF.....FX that it works for you this round!

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    Pauli77  (29-03-2015)

  15. #788
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    Thanks MCG Bertie :-) You are becoming a champion of Intrallipids...

    The only thing that can't understand is that Dr M initially said also 15 gr and then I said well...should be more than that because my weight is 50 kgs at 0.400 g per kilo ...is 20 grams(that's the Alan Beer Center protocol)

    Looks like Dr M is doing 15 gr for everybody...is that good enough? Bella978 ? or any lovely, lucky lady that had a baby or is about to ? We are struggling trying to understand and evaluate money/risks....

    Thanks a lot !

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    MGC Bertie  (30-03-2015)

  17. #789
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    Quote Originally Posted by bbhope View Post
    For trial experiment like intralipid, I personally doesn't think the precise infusion rate matter as long as it is slow. The reason i say this is that each of us absorbs the fluid differently. I really like the idea of having a lot of saline flush before hand as it hydrates the body. It also isn't a precise science since you might notice that it can go a bit longer or shorter depends on DrM arrival time. In Perth, my flush at the beginning is fairly fast, ranging from 3--5 mins. Again, depends on the Dr schedule! The intralipid infusion rate goes from 120 to 125ml/hr. The saline flush is a bit longer at the end depends on which nurse is on call. I was only upset once when a nurse didn't bother to let me finish the last small amount of intralipid. The rate needed to be adjusted at the very end to get the last bit out. Hey..it is expensive.

    In any case, @scurffy, I hope you have a better luck with the IV catheter than me. I had to suffer 4 times to just have that thing in on my last visit. I should have said no when the nurse clearly didn't seem to know how to do it or didn't show no confidence of doing it! Speaking of that, I am doing another round of intralipoid this week even though DrS thinks 3 doses is enough (4w, 6w and 8w). I feel more comfortable to go on with another one at ~12w. I guess it is good for business and he has no objection. If i want, i can have another one at 20w like you ladies here.
    @Hope06: excellent news about the lab in Oz.
    @Pauli77: If anything i learned, it is best to get everything tested before doing any transfer. Yes, it is expensive. Since you already spent so much $ this round, you might well go all the way. If it works, it saves you even more for the 2nd round. If it doesn't work this round, at least you know you have tried your best. No regret. I say this because I still have regret for my first IVF.....FX that it works for you this round!
    Thanks bbhope!! Good on you for following your intuitions and prefer to be safe than sorry :-) somehow we know, right?

    What you are saying is what I 've been trying to get my DH to understand- it's worth it,we already spent a lot of money and will be worse if we don't check...thanks for your advice

    Girls... I will be MIA in a spiritual retreat that I desperate need- it's only 3 days though Will be back then

  18. #790
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    Pauli... I'm 75kg and we've been doing 15g IVIG all along. I did say to DrM early on about having 20g, because I'd read that's the dosage mostly used in the US, and he said we could, if we wanted, but that he thought that 15g would be enough, so we went with that. Again, it's obviously not a precise science.

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