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  1. #801
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    Kirsti You need to to contact dr M and have these tests done! Then get back up on " go fund me" remember it's € 500 for a fet, plan it right and your airfare will be $1600 max and a couple of night in the hotel, all do-able once you have these other tests done, you can be in and out with your snow babies on board quick smart, but you do need additional testing done, it can be done via ph consult as well so you don't need to travel if your not in Sydney xx I'll pm you details

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    tigerlilly9772  (11-09-2015)

  3. #802
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    Hi again

    Kristi, please take care of yourself. I know there is nothing we can say atm to make you feel better, but time will heal the wounds and in a few days you'll be able to think clearly and make a plan.
    That might not be anything wrong, maybe it was just bad luck. But, for your peace of mind you can have your immune system checked. In terms of costs: First consult with dr M is $300 and the folowing ones are 150. I had phone consults, so I couldn't claim anything back from medicare. If you want I can tell you what blood tests I had and you can ask your Gp to give you the blood form. Then with the results you can go to an immunologist. I also had a biopsy done. The hospital was covered by PHI, I only paid for the anesthesia. But my fs didn't do it properly and haven't tested for cd57. Based on my results dr M prescribed me prednisone, clexane (which are not really expensive) and IVIG. Many people need only intralipids which costs $650 each and the hospital (covered by PHI depending on your insurance) and you need one before transfer and a few after depending on your situation. IVIG is much more expensive ($2250 for 15g, the quantity depends on your weight I think) and unfortunately it is not covered at all. I know it sounds scary, but don't panic, because you don't know at this point if you need it or not. To be honest, I don't know how we can afford it either but we are on this road and in end we have to find a way. There are a few threads on this forum called High natural killer cells. You can find plenty of information there. But please dont hesitate to ask any questions.

    Take care of yourself.
    Many hugs

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    tigerlilly9772  (11-09-2015)

  5. #803
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    Hi ladies,

    Thanks for the condolences, and info.

    I have an appointment to see my FS on Monday, and I'm going to demand testing for everything, and referrals to specialists. I have GOT to get this sorted. If I don't have s child soon Im not sure what I'll do.....
    The only thing is Im seconded to Melbourne and surrounds, I simply cannot go to NSW (financially just can't do it). Also I need to be able to make the most of PHI and Medicare (again, financials) so phone consults are out. And I feel too much is lost in translation over the phone. Hopefully there is someone in Melbourne that can and will help me.

    We weren't terribly successful with gofundme, and I just can't bring myself to ask for more money from people. I'm too ashamed too even look the ones that did donate in the eye now......I'm so ashamed of the outcome, of my failure. So I'll have to look into other ways of raising funds. I have been stacking away my QFF points and may have enough for a return awards flight......but the available dates aren't always conducive to what you need.

    But first.......finding out what is wrong with me. Holy **** I hope I don't need IVIG because that's well and truly out of my league. I can scrap that right now. I mean the lipids alone is ridiculous in cost. Why must infertiles be continuously hurt? If not emotionally and psychologically then most certainly financially. It's so unfair......death by s thousand cuts.

    I can't believe I'm 43 and still trying for my first baby. I feel so old, and I fear if we ever do manage to have a child, they're going to be ashamed I'm their mum because I'm so effing old.......imagine being 65 at your child's high school graduation. I'm embarrassed FOR them.

    I feel just defeated. Honestly? I'm hoping I go to bed and Gid answers my prayers to just never wake up.......oh but Im sure I will. God never hears or answers my prayers......but he's always got more "plans" for me. yes I'm feeling sorry for myself. I think after 12 years of endless failures and keeping going, I'm entitled to it. But I tell you what......I'm running out of steam. I don't know if I can survive this one......

  6. #804
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    Also, yes......please list every single blood test, biopsy or other diagnostic thing you've had done, because I want to ask for specifics. I find if you arent specific to the letter, they tend to gloss over or generalise.

    Mthfr, NKCs......anything. I want to be tested for absolutely everything. I want to be sure I've done everything that I can do.

    Thanks. 😔

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    Hey Kristi

    I sent you a PM. 😚

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    tigerlilly9772  (11-09-2015)

  9. #806
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    Hi Kristi. So sorry to read what you are going through. went to Zlin last year and unfortunately, after a BFP had a miscarriage at 8 weeks. I have since seen Dr M and have mthfr so high dose of folate and clexane for that. And high nk cells so intralipids and I if for that, going back to Zlin in about 2.5 mths for frosties from last year. The costs do add up. We were going to save for a house before we decided to go on this journey, that plan has gone. It's tough. I am lucky I am only a couple of hours drive from Sydney but only been down once for dr m and tHat was the hysteroscopy and biopsy. I am doing intralipids the day I fly out so that saved another trip. Because of costs we said this will be our last attempt but I am not ready to say that yet so we are thinking of freezing some of Hunnish sperm while over there this time and if it doesn't work this time maybe I go back next year by myself and fly in have treat me and then straight back home. I have a FS locally who at least a understands what Dr M is doing, does not necessarily agree but as he said, it won't hurt, apart from the bank balance. For now though look after yourself, it's a tough road but you can see all the great support on here and the hope with their successes.

    stacey how's your son? Hope he is recovering well.

    The part of this journey is the constant questioning. I have about a week to make the final decision as to whether I go with cycle or the injection. I am still erring towards the injection just to give that reassurance of date but then think my cycle has been regular with bc pill. Decisions decisions. You are doing injection still Stacey?

    hope everyone is doing well.

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    tigerlilly9772  (13-09-2015)

  11. #807
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    Kristi my girlfriend is in Brisbane and has only had ph consults with dr m and has never had a problem, there are only 2 immune specialists for fertility in Australia and he is the top one.
    deb, yes he is on the mend will be home Monday or Tuesday, is finally off the iv painkillers, antibiotics and fluid and has finally had his first mouthful of food today in over a week Yes I'm doing the injection, it has fleetingly crossed my mind to do it the other way but to be honest I don't want to have the hassle of my period while away on holiday

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    tigerlilly9772  (13-09-2015)

  13. #808
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    Hi Debant,

    I'm just hoping my FS (Gareth Weston) is willing to work with me, even though I know he "doesn't believe in NKCs). I mean, if I'm willing to pay for it and try it, why not? I'm not cycling with Gareth now, I'm now his patient under his private OB practice, so it's got no bearing on him. It doesn't affect Monash's stats. I really like him, because he's got a good bedside manner, but if he won't play the game he's going to get told off in a big way. I just need someone to work with me. If it turns out I'm wrong, well it won't be the first bit of crow I've eaten.

    Im very anxious to get the testing started and the results analysed. Being Infertility Broke, $300 feels a bit steep for just a phone consult, but if it gets me diagnosed and treated, and ultimately a better chance at being a mum? I'll shell it out, happily.

    We have 2 babies in Zlin. If they don't survive thaw, or don't take, we're just going to keep going until it works. Somehow. I don't know how but we will. We have until I'm 50 to try for our own, and while I already feel embarrassed and ashamed to be 43 and still trying for my first, I felt this way at 38, 39, 40 etc too and survived it. I just hope our child/ren are never ashamed to be seen with their very old mum and dad when they get to that age!

    my hopes at this stage are to be back in Zlin by March 2016, sooner if it can be managed.

  14. #809
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    Hi Stacey,

    with tch the phone consults, how does that work? I mean, does Dr M just review the test results and say you need this and this, and then you have to find a doctor in your area that will cooperate? Or does Dr M correspond with a doctor? I'm sorry, but I find it very confusing how phone consults work in practice of actual treatment. Was your friend successful after her dealings with Dr M? It seems all the good specialists and practitioners are in Sydney, and Melbourne just has a bunch of semi-useless money grabbers that don't really give a **** about anything but lining their pockets. If you do find one that cares (Gareth cares) then they wreck it by being closed minded(Gareth doesn't "believe" in NKCs.......so I'm expecting him to say yeah, no....sorry.) I'm not going anywhere until he either agrees to work with me, or refers me to someone who will.

  15. #810
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    Hey Kristi

    At my first phone consult dr M just went through my medical history and told me the steps to be done. Then he sent me the blood form by email. I had the tests done. At the next phone consult he went through my results and told me what is wrong and what is the recommmended treatment. He then sent me the script in the mail. As for IVIG or intralipids, you can either organise it in Sydney with dr M or you find a dr that can do it near your place. Maybe ask the ladies on the High natural killer cells thread if they know which dr can do this in Melbourne. But it's not an exact science, each dr us different. They can use different quantities or different drip rates. I would trust dr M on these because he has the best results. But atm I'm in the situation where I have to choose between paying around $1000 for a flight to Sydney or risk it and have the IVIG with a dr here in Perth

    Good luck with your dr appointment and let us know what else you find out.

    Stacey, I'm so happy that your little one is better.

    Have a great Sunday afternoon everyone.


 

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