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Re: [immunologysupport] To Niki.....Re: Vent (chd ment)

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  • Niki Albury
    There is no way possible that we could do it, if I was going to go to that length then I would just adopt, which I m happy to do after we have run out of
    Message 1 of 2 , Jun 21, 2003
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      There is no way possible that we could do it, if I was going to go to that length then I would just adopt, which I'm happy to do after we have run out of options.  I'm still hoping that Dr Matthius will get it together and not be so busy he can't focus on me, there were quiet a few preg ladies a this office, so I'm hoping this is a good sign.  Thanks anyway Jane.  Could you please explain the TNF alpha.
       
      Niki
      ----- Original Message -----
      From: Jane Reed
      Sent: Sunday, June 22, 2003 12:54 PM
      Subject: [immunologysupport] To Niki.....Re: Vent (chd ment)

      Niki,

      I am so sorry to hear of your frustrations being so far away in
      Australia. I know it must be hard reading these posts everyday,
      wondering if these immune treatments ( LIT, IVIG, Remicade) will ever
      be available you. But I must ask (I know this may seem far-
      fetched) ....Would you ever consider making a trip out here to the US
      to see Dr Beer in person?? To get the IVIG done here in the States?
      Maybe hop on over to Nogales to get LIT (if you needed this) (only if
      you needed this)? Would this really be so impossible?? You could even
      make a vacation out of it. Might even have some fun?

      Ofcourse such a trip would be expensive. Ofcourse it would take time
      ( many vacation days). But you say you have a stable financial
      situaton, why not make use of some of the assets in your life (your
      house, your land etc) put it into your happiness, your dream of
      having another child? Instead of just letting day after day pass away?

      With your +ANA, history of failure, insulin resisatance I feel pretty
      sure there are some TNF alpha issues going on with you (and I'm sure
      you feel this too) You know that you may need IVIG. Maybe even need
      LIT to have a successful pregnancy. Why risk not getting this? Why
      risk doing an IVF cycle that may fail? When you have this knowlege
      and ability to have success??

      With your young age and young eggs, I just really feel Dr Beer could
      help you, really I do.

      Just so you know, I have known many Australian patients (yes,
      Australian patients) fly all the way to the US to just to see Dr Beer
      in person. Wouldn't you feel so much better moving forward in a
      positive and aggressive way rather sitting back wondering "what if?
      what if?"

      (and I bet there is a direct flight from Syndey to San Franscisco
      too!)

      Something to cosider. If you have the money, if you have the desire,
      working with Dr Beer may be more possible than you think!

      Jane


      --- In immunologysupport@yahoogroups.com, "Niki Albury"
      <joelsmama@j...> wrote:
      > Hi I'm feeling a bit peeved today, tomorrow I'm 31yrs old, having
      been trying to fall preg without success for nearly 4yrs, normal RE,
      specialist etc wont look or consider my immune issues as a
      possability or that they DO and can play a part in my lack of
      conception even though I'm fertile every cycle.  I found a
      reproductive immunologist thru the immunology board who I thought
      would save me so to speak, and he never replies to my phone calls,
      letters etc and isn't doing anything agrressive,some of you may
      remember I sent a letter to him a few weeks ago, well 2 weeks ago he
      was going to reply to it, I have called several times and they say
      he's busy he'll do it when he can.  I read all the treatments you
      gals are on and we have nothing like that here, we must be so
      backward when it comes to reproductive immunology and treatments. 
      All he has me on is metformin for my PCOS and high IR levels and baby
      aspirin for my ACA levels and nothing is getting done about my ANA
      levels.......I know 31 is still considered youg but my son is nearly
      6yrs of age and I'm so scared that if I ever do have another baby the
      age gap will be so big he wont have a opportunity to bond with his
      sibling and adoption in Australia is basically impossible so we can't
      afford to leave that too long either as their are so many
      stipulations and age limits for overseas adoption.  I just feel like
      hope is flying out the window and no one here is taking this serious,
      meaning the Dr's that is......anyway thats my vent, it just makes me
      mad I have done it the way they say your supposd to do it, so to
      speak, I married, bought a house, we both work fulltime,we own our
      home and a block of land, ready to build a new big house in the near
      future, have cats, dogs and treat them and others kindly, good bank
      account etc so what else am I supposed to do that will make me a
      better person to fall preg, it feels like I havn't passed the test
      yet and still have to prove I'm worthy and that I'm being punished
      and am not good enough to have another baby, we don't even drink or
      smoke, we go to church etc I know thats not how it works hence all
      the babies born into poverty, drug abuse etc but some days it sure
      feels like I'm being punished anyway thats my vent and thanks for
      listening, I know i'm rambling.....must be old age, I know I
      shouldn't but its hard not to compare yourself to others I look at
      other people who have been married nearly 10yrs or are my age and
      they have 2-4 kids and are finished having their families and here I
      am in 10yrs I have managed to fall preg once, I feel like I have
      failed big time and I am greatful for my son, without him I don't
      think I would be here today, the struggle to have him was unbearable
      and he's gotten me thru the past 4yrs but everynight I hear him pray
      to God for a sister and it breaks my heart, why should he suffer,
      anyway I will end now before it turns into a novel.  One thing thats
      makes my day and gives me hope is every time I hear one of you that
      has fallen preg, I just thank God that he has shown me another
      miracle and that they are still around us daily.  Cheers
      >
      > Niki



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    • Niki Albury
      Hi Jane I just emailed Dr Beer to ahve a chat about treatments so hopefully I can take it to Dr Matthius, so far I have seen Dr Matthius once and have been
      Message 2 of 2 , Jun 23, 2003
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        Hi Jane I just emailed Dr Beer to ahve a chat about treatments so hopefully I can take it to Dr Matthius, so far I have seen Dr Matthius once and have been conversing with his secretary over the phone all this time, so maybe I need to book an appointment to actually see him and get some answers that way rather than via phone/secretary and fax's?  He has been kind enough to send me prescriptions thru the mail and fax the hospital with pathology test so I can get it all done locally without travelling to see him, at no charge which has been really kind of him but I defiantly need more aggresive treatments.  How ar eyou going, any good news?
         
        Do you have any suggestions of test, treatments that I should ask for?
         
        Niki
        ----- Original Message -----
        From: Jane Reed
        Sent: Sunday, June 22, 2003 12:54 PM
        Subject: [immunologysupport] To Niki.....Re: Vent (chd ment)

        Niki,

        I am so sorry to hear of your frustrations being so far away in
        Australia. I know it must be hard reading these posts everyday,
        wondering if these immune treatments ( LIT, IVIG, Remicade) will ever
        be available you. But I must ask (I know this may seem far-
        fetched) ....Would you ever consider making a trip out here to the US
        to see Dr Beer in person?? To get the IVIG done here in the States?
        Maybe hop on over to Nogales to get LIT (if you needed this) (only if
        you needed this)? Would this really be so impossible?? You could even
        make a vacation out of it. Might even have some fun?

        Ofcourse such a trip would be expensive. Ofcourse it would take time
        ( many vacation days). But you say you have a stable financial
        situaton, why not make use of some of the assets in your life (your
        house, your land etc) put it into your happiness, your dream of
        having another child? Instead of just letting day after day pass away?

        With your +ANA, history of failure, insulin resisatance I feel pretty
        sure there are some TNF alpha issues going on with you (and I'm sure
        you feel this too) You know that you may need IVIG. Maybe even need
        LIT to have a successful pregnancy. Why risk not getting this? Why
        risk doing an IVF cycle that may fail? When you have this knowlege
        and ability to have success??

        With your young age and young eggs, I just really feel Dr Beer could
        help you, really I do.

        Just so you know, I have known many Australian patients (yes,
        Australian patients) fly all the way to the US to just to see Dr Beer
        in person. Wouldn't you feel so much better moving forward in a
        positive and aggressive way rather sitting back wondering "what if?
        what if?"

        (and I bet there is a direct flight from Syndey to San Franscisco
        too!)

        Something to cosider. If you have the money, if you have the desire,
        working with Dr Beer may be more possible than you think!

        Jane


        --- In immunologysupport@yahoogroups.com, "Niki Albury"
        <joelsmama@j...> wrote:
        > Hi I'm feeling a bit peeved today, tomorrow I'm 31yrs old, having
        been trying to fall preg without success for nearly 4yrs, normal RE,
        specialist etc wont look or consider my immune issues as a
        possability or that they DO and can play a part in my lack of
        conception even though I'm fertile every cycle.  I found a
        reproductive immunologist thru the immunology board who I thought
        would save me so to speak, and he never replies to my phone calls,
        letters etc and isn't doing anything agrressive,some of you may
        remember I sent a letter to him a few weeks ago, well 2 weeks ago he
        was going to reply to it, I have called several times and they say
        he's busy he'll do it when he can.  I read all the treatments you
        gals are on and we have nothing like that here, we must be so
        backward when it comes to reproductive immunology and treatments. 
        All he has me on is metformin for my PCOS and high IR levels and baby
        aspirin for my ACA levels and nothing is getting done about my ANA
        levels.......I know 31 is still considered youg but my son is nearly
        6yrs of age and I'm so scared that if I ever do have another baby the
        age gap will be so big he wont have a opportunity to bond with his
        sibling and adoption in Australia is basically impossible so we can't
        afford to leave that too long either as their are so many
        stipulations and age limits for overseas adoption.  I just feel like
        hope is flying out the window and no one here is taking this serious,
        meaning the Dr's that is......anyway thats my vent, it just makes me
        mad I have done it the way they say your supposd to do it, so to
        speak, I married, bought a house, we both work fulltime,we own our
        home and a block of land, ready to build a new big house in the near
        future, have cats, dogs and treat them and others kindly, good bank
        account etc so what else am I supposed to do that will make me a
        better person to fall preg, it feels like I havn't passed the test
        yet and still have to prove I'm worthy and that I'm being punished
        and am not good enough to have another baby, we don't even drink or
        smoke, we go to church etc I know thats not how it works hence all
        the babies born into poverty, drug abuse etc but some days it sure
        feels like I'm being punished anyway thats my vent and thanks for
        listening, I know i'm rambling.....must be old age, I know I
        shouldn't but its hard not to compare yourself to others I look at
        other people who have been married nearly 10yrs or are my age and
        they have 2-4 kids and are finished having their families and here I
        am in 10yrs I have managed to fall preg once, I feel like I have
        failed big time and I am greatful for my son, without him I don't
        think I would be here today, the struggle to have him was unbearable
        and he's gotten me thru the past 4yrs but everynight I hear him pray
        to God for a sister and it breaks my heart, why should he suffer,
        anyway I will end now before it turns into a novel.  One thing thats
        makes my day and gives me hope is every time I hear one of you that
        has fallen preg, I just thank God that he has shown me another
        miracle and that they are still around us daily.  Cheers
        >
        > Niki



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