We have: (a) Reasons; (b) a Protocol; and (c) a Problem

I received our immunological testing report with complete analysis and had a long, helpful telephone conversation with Dr. Jeffrey Braverman yesterday.

There have been rivers of tears and heaps of those impotent “I want to say the right thing – what is the right thing?” looks from the LP, group and individual hugs and “I’m sorry mommy” from the Miracle Toddler (whose miracle status has grown about as many times as the Grinch’s heart that fateful day when he unstole Christmas from Whoville).

My eyes hurt.  My heart hurts.  My bank loves me.  My employer, too, because they know I will never quit and stay home now.

A.  The Reasons

For the sake of anyone who’s been playing along and cares and for anyone who may one day read my blog in hopes of gathering more information about reproductive immunology, haplotypes, HLA mismatches, Natural Killer cell activity, Cytokines and why they all matter, I want to and will share more details about my test results, the analysis and interpretation of them and what it all means.  But not today.   I need time to write that post (you’ll see why) and time to work through my feelings right now (which have circled the earth at least 2.4 times in the past 18 hours).  Please stay tuned.

Non-sequitur: If I am ever in another band, I am going to call it the Angry Cytokines. (Steal this idea and beware, this post and all ideas in it have all rights reserved!)

The brief version to tide you over until the promised post:  I am broken.  The LP and I are not sufficiently mismatched.  My one successful pregnancy created a cell memory that has made the problem worse.  It is incredibly unlikely (read: impossible) that I could ever sustain another pregnancy without serious medical intervention (namely, drugs and a lot of blood tests) and equally serious expense.  Oh, and I probably have endometriosis.  On the good news front, I have no hy-restricing HLAs (meaning my post-live birth recurrent pregnancy loss is not a result of me having developed an immune response to boy babies).

On one hand, this is all very validating.  It explains why I’ve gotten sicker with each of the 6 pregnancies we have had and lost since the Miracle Toddler was born and proves that my gut feeling about that was right not “coincidental” as doctors have told me.  And while my case is difficult, according to Dr. Braverman it is not untreatable (though he said I could lose another pregnancy on the road to us figuring out how best to treat the various issues).

On the other hand, it has ripped a new hole in my heart and reignited my grieving over all that was genetically programmed to make me very unlikely to have children (without a miracle – which apparently was a one-shot deal after all – or a boat load of medical intervention and expense) and over not finding out any of this sooner.  I am having what can be fairly described as a very hard time right now.  I know it will get better but for now I am grieving and processing.

Stay tuned…

B.  The Protocol

There will be more on this in the future post I have promised.  Meanwhile, the skinny is that Dr. Braverman has recommended:

  • Daily injections of Neupogen
  • Oral Steroids – likely Prednisone, 10-20 mg daily
  • Weekly treatments with Intra-lipids for the first FET (if it fails, then IVIg)
  • Daily injections of Lovenox

C.  The Problem

Because there has to be at least one, right?

When at the end of our call I asked about a realistic time frame for getting our embryos imported from the West Coast into New York state, Dr. Braverman admitted he has seen it take upward of three months (he’s also seen it take less time).  The fact that they are donor egg embryos may make this more complicated.

To avoid any more delay, Dr. Braverman suggested I consider consulting with a reproductive endocrinologist in the same state where our embryos are now hanging out in cryopreservation storage.  The trick is that any such doctor must be prepared to follow Braverman’s protocol and prescribe the drugs he instructs, do the testing he requires, etcetera.  He’s the boss, in other words.  Most doctors will not do this.  Our current RE has already said he will not do it.

On our call, Dr. Braverman recommended a doctor he has worked with before, though never with Neupogen among the drugs on the protocol.  I called her clinic.  She is on sabbatical until November.  Of course she is, why wouldn’t she be?  The patient coordinator also told me that the clinic does not prescribe medications for other doctors as a rule.  With some cajoling she nevertheless agreed to email the RE asking if she will work with Dr. Braverman and promised to get back to me.  I wait and see.

I emailed this news to Dr. Braverman and said my current inclination is to try to get the embryos to NY.  I called Biogenetics about this and e-mailed them the LP’s test results for infectious disease screening to see if he will need any further tests.  I wait and see.  This is step one of many to setting this ball in motion.

Meanwhile, Dr. Braverman sent me the name of another doctor in the same state as our embryos.  I called her, too, and had to leave a message.  I wait and see.  (D0 you detect a pattern here?)

I actually burst into tears during one of the times when I was on hold yesterday during the various phone calls that followed my discussion with Dr. Braverman and asked God and the Universe “why?”  Why can’t we  get a break for once?

I have actually thought:  Is this a sign to give up?  Or to do one last IVF with my own eggs at Braverman’s clinic instead of moving our DE embryos?  (Braverman gave us a 5% chance of success at my age and given my diagnoses so that would be a pretty foolish gamble but it’s hard not to give it some thought.  Grief and desperation are powerful motivators.)  I have settled on the fact that my luck is crap and when the going gets rough, my luck gets crappier.  I should know to expect this by now.

< huge sigh >

To Be Continued…

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40 thoughts on “We have: (a) Reasons; (b) a Protocol; and (c) a Problem

  1. Wow, this is a lot of information! I can appreciate the need for time to write about all of them details – just so much to digest. It sounds like you have a lot of very hard decisions to make and a lot of emotions to sort through.
    Although it sounds like a lot of this isn’t great news, but at least you have an answers. I always find I feel better with answers even if they aren’t the answers I want. For me, there is just something about knowing that I always find peace with, and I hope the same is true for you because that’s about all the good I can see in all of this right now.

    • It gets worse (in terms of “a lot of information”). But I am glad to have answers and a reason for all that I’ve observed happening since the beginning of 2013 when this whole crap fest began. I don’t feel at peace, I am still working on letting go of the wishes that this would have been different… less difficult… less late in the game. One deep breath at a time for the moment.

    • Thank you. I hadn’t even thought about them not calling back – ha ha, I guess I better start hoping for the call back, too! I have a wish list in my heart and an “of course” from Dr. B to my request to chat about surgery and plans A and B next week. It will involve remortgaging our house so there’s a whole new level of grief and guilt to wade through!

  2. I am so very sorry. I know that you wanted answers, but I can’t even begin to imagine all of the emotions you are going through. I am glad you have some possibilities to look forward to and I hope one of the other doctors will work with you and Dr. Braverman. Please know that you are in my thoughts and I am sending lots of love your way. I am here if you want/need to talk!!! ❤ Hugs!

    • I wish we could get an appointment with God in which we could get some advice about whether to keep going or give up. I could use a chat like that right now! I am praying for the same for you, thank you.

  3. Oh hon. My heart aches for you reading this. On the one hand, yes, thank God you finally have some real answers and hopefully the right protocol moving forward, but why does it have to be so hard? You’ve been through enough, couldn’t this just be a little easier? As for the RE in California, you’ve just made me actually hate him. I have felt personally let down by him and also let down for you before, but now I actually think I hate him a little. His refusal to work with Dr. Braverman is just ridiculous, and the extra stress you have had to incur because of it just makes me so angry for you. Praying you can find an RE out here that will work with Dr. B so you don’t have to move your embryos across the country and hopefully it will make this process easier for you hon. Hugs hon ❤

    • Thank you. I emailed the CA RE to ask one last time if he would reconsider and I sent Dr. B’s report. No response yet but I expect him to say no. This road has been so long and so painful. Some days I just want it to end.

        • I feel compelled to tell you that I heard back from RE at whom you are very angry (I’ve been there, thankfully for my own sake I’ve let it go now though the disappointment lingers – that could change, I’ve asked him about a partial refund since we paid for a second FET I cannot do with him due to my diagnosis and his decision, which he reiterated). He was very nice in saying that he truly recognizes “the uniqueness of [my] situation” and “understands the need for alternative treatments”. Ultimately, he considers the treatments Dr. B has recommended “unproven”, and won’t take part (as expected). If he gives us a partial refund for the unused FET, I will forgive him completely. If not, I’ll invite you to join me in jabbing pins into one of my paper voodoo dolls in his honour (the LP bought me the pad of paper voodoo dolls once when I was working closely with another lawyer whose personality and style are very unlike mine if you know what I mean). Meanwhile, I’m moving on…

        • Praying he complies and gives you a partial refund. He really should! I’m trying to let it go too, but if he doesn’t help you out, I will definitional be joining you in jabbing those pins in! Loving the mental image of it btw 🙂

          Hugs hon!

  4. Seriously – why is life so unfair? I’m sorry these are not the best results, I’m sure this is extremely difficult. I hope you are burying your face in the MT’s sweet spot and getting extra snuggles from everyone in your house tonight. I’m thinking that one day, you’ll look back on this and be able to make some sense of it. Not sure when, but that day WILL come. XO

    • Thank you. I sincerely hope so, too. The MT has been announcing “hug!” at regular intervals. I hope he retains that much empathy as an adult even when he doesn’t really understand what has the important people in his life so unsettled.

  5. I’m sorry to hear that the results have caused such pain. I pray that your heart heals and you’re once again full of strength and vigor. I also have hope that your protocol is the solution to ending the heartache you’ve endured. While you might be feeling low, please know your strength and resilience continues to inspire me and many others. Thinking of you.

    • Thank you for those thoughtful and heartfelt words. I would be happy to connect with you privately at some point since we seem to have some immunological issues in common. Are you on the FB reproductive immunology group? I am not at this point because I have a longstanding aversion to FB (not to be cool or pretentious, it’s a stalker thing) but some gals find it helpful. If you want more details, e-mail me, my friend.

      • Thank you, I would like that very much. Is your contact info posted on your blog? I have yet to join any infertility groups on FB, the bump or online outside of blogging because I’m truthfully afraid I’ll become even more consumed (aka unhealthily obsessed) with my infertility. I realize that probably sounds ridiculous. That said, now that I’m dealing with immunological issues, I believe I need to become more educated about treatment options to better understand my diagnosis and become a stronger advocate for my own health.

  6. Oh, wow. I just wish I had something inspiring and helpful to say right now. Reading this hurt my heart. I am thinking of you and sending lots and lots of love your way. You have a LOT of people out here in blog-land who care about you so much! (including me!) I hope you can find some strength and comfort in that.

    • I find tremendous strength and comfort in that! I am so grateful, honestly. I think I’ve become a little more grounded than last week when I first got this news. I truly hope that at some point things work out in our favour. All of this will have been worth the suffering if that happens. Fingers crossed!

    • Thank you very much, I appreciate (and need) the luck! You’re welcome, there is more information in the post about a lay person’s approach to reproductive immunology in case you are looking for something more dense. 🙂

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