You Win Some, You Lose Some

Today I made an unequivocal move.  I called and made an official, in-person appointment for me and the LP with Dr. Jeffrey Braverman in Long Island for the end of this month.  I booked us flights.  I tried not to gag at how much the initial consult ($900 USD) and the airfare ($1100 USD) will set me back.  The testing is estimated to cost between $900 and $2000 USD, depending on what Dr. Braverman orders.  All of this is out-of-pocket for us.  For me.  I’m paying for it myself.  The LP pays for other stuff.

I then wrote to our current RE to tell him we really like working with him and would prefer to stay with him for our next FET (frozen embryo transfer).  I asked if he would be prepared to coordinate my care with Dr. Braverman should I choose to pursue an immune treatment protocol he might recommend.

The short answer is no, but he was very respectful in his response, which includes the following:

    • “When results don’t match expectations, especially those accompanied by unusual physical elements that appear to be immune in origin, it’s time to think out of the box.”
    • “Our field has very few proven remedies for immune issues as they relate to implantation failure and biochemical losses.”

He went on to say that his own knowledge reflects the current understanding in keeping with the College of which he is a member.  Since many of the interventions offered by “the ‘immune specialists'” are “unproven and in some cases risky”, he prefers only to have a peripheral involvement insofar as he is ultimately responsible for his actions in my care.  He concluded by saying he’d be happy to help me facilitate care with Dr. Braverman if we elect to pursue that.

And that, as they say, is that.   I feel a little like I’ve been fired or given an ultimatum, though I really do get the sense that my RE wants to help and is simply doing what I expected him to do – protect himself first and foremost.  He’s right, he is ultimately responsible for his actions and having acted for docs before in their legal woes, I get that.  I really do.  It still smarts a little to be dumped.

Overall, I feel sad and scared because the stakes and the expense just got bigger.  However, in my gut (where it matters) I know I have done the right thing in seeking some answers.  I need to know why my womb keeps destroying our pregnancies.  Even if the answers lead me back to our current RE and a rejection of whatever Dr. Braverman might recommend (which may be nothing at all though that seems unlikely, it is a big business he runs and all and they all want to make money… and lots of it), I need to ask.  I need some kind of explanation or the ability to make sense of what has happened and what I can expect to have happen in the future if we try again.  Without that I do not know how I could feel comfortable making decisions and moving forward until it is time to quit (either because we succeed or because we don’t and I am at peace with this journey being at an end).

We did not come all this way to throw in the towel or waste the last chances we have.  I have to give this all I’ve got (and what I can reasonably borrow and hope to pay back in the foreseeable future).  It feels like this is the only way I can live with myself in all of this.  I need some peace of mind.  And in the world of recurrent pregnancy loss and immune system overlap, that seems to have a heavy price tag attached to it.  So be it.  I’m in it thigh-deep now, I may as well start wading.

As positive affirmations that something is going right, I have two happy notes on which to end this update.

First, I had a wonderful lunch date with my sister-in-law.  She said I look healthier and better than I have in a really long time and noted that she was really happy about this, because they’d been worried about me.  She’s been with us through the past 18 months and the 6 losses we’ve had in that time and she is the only non-medical person who knows we are using donor eggs.  It meant a lot to me to hear her say I seem calmer, more peaceful and I look healthier.  I needed that today.  More than I could have anticipated.  Thank you, SIL, you made my day.

Second, I won the “pay-day lottery” at my work today.  It was only $95 but hey, that will go toward the dinner to which I’m treating our out-of-town friends tomorrow night while the LP is away.  And it was like God’s way of saying “I’m sorry about the bad news but you’re on the right track here, kiddo.”  Or that’s how I’m looking at it.

 

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18 thoughts on “You Win Some, You Lose Some

  1. It sounds like you ARE on the right track! Congratulations and good work to you for jumping in and making a big move to get some answers. Keep taking good care of yourself – it’s clearly working!

    • Thank you kindly, I really appreciate your support and encouragement. I don’t know why I was waffling other than fear. I realized last night that I was afraid of being rejected by our RE. Now that I’ve crossed that hurdle, I hope the path looks clearer. This means a longer wait for another attempt, I’m sure, but I cannot imagine that being a bad thing, either, given all we’ve been through.

      I hope all is well with you and that this one is your perfect sticky baby. Keeping you in my positive thoughts and prayers.

  2. It’s too bad about your RE, but good for you for following your gut hon. Praying you get some answers soon!

  3. I absolutely get this decision. I get trying everything. I get needing to wade in deeper and see where things end – my goal is just to keep my head above water. I get that in 20 years you need to know you did everything possible. I get the fears that go along with that. And, most importantly, I get the satisfaction that comes from knowing you are giving it absolutely everything you have.

    You said “It feels like this is the only way I can live with myself in all of this. I need some peace of mind.” This line of thought is exactly how we have made some of our biggest decisions in the last year. After our 4th lose we asked ourselves, are we okay with stopping now? We both very quickly arrived at the same answer – no, we have not listed to all the advice we have been given and the next thing I knew, I quit my job to reduce stress (which is still very scary for me some days – but that’s another topic). For us, it’s all about knowing we tried everything. Knowing we gave it our best shot. It’s one thing to know that it didn’t work out if we did everything we could, it’s an entirely different thing to know it didn’t work out and we didn’t do everything possible. I don’t know how either of us would live with the regret of not having kids if we didn’t do everything in our power.

    You may not like what the new Doc says, you may chose not to follow his recommendations, but at least it is your choice.

    Therefore, all of this is to say, I completely respect your decision.

    Wishing you the best, and hopefully you can make a little vacation out of it too!

    • Thanks so much. I completely agree – one must be comfortable with the decisions on this journey and what rung out loud and clear to me lately is that I wasn’t comfortable with the plan to just try again and hope for the best when history and the odds are against that working. Been there done that as they say!

      I really hope we both get lucky soon. It’s overdue but that seems to have no bearing on these things, sadly.

  4. I really hope you find your appointment with Dr. Braverman to be worth it. He really is highly regarded in our house and that’s thanks to the twins he helped us conceive. He really is amazing and wonderful and so full of different and refreshing ideas. I’m confident he’ll have answers for you.

    • I cannot tell you how grateful I am for your comments. I’m so glad you were able to finally bring home those wonderful twins with Dr. B’s help. The worry I have is that so far I’ve had somewhat extensive testing and nothing has turned up, but in my gut I know something is going on that links my immune and reproductive systems’ functions.I don’t know why I did not make the connection sooner except for believing the mantra that my eggs were simply old. I wish I had not wasted so much time believing that and disbelieving myself. I hope Dr. B can provide some insight and a path to success. Thanks again and all the best with your family.

  5. I think it’s awesome you’re advocating for yourself… And while I also understand your RE’s views, I want to think he just has your best interests in mind. He’s willing to help coordinate the care from the specialist, which I think is great!

    I was just saying last night to my husband that I really want to know why we aren’t pregnant. Seems far too many clinics just keep trying to get us pregnant without really determining what the problem is.

    • You’re right, it’s very typical to just assume it’s a numbers game abc never dig into why.

      By coordinating my care our RE means he will send records and my embryos to the reproductive immunologist or elsewhere if I want to do anything more aggressive than he has suggested. He is bound by law to transfer or surrender a copy of my records (your med records are your property at these private clinics) so it’s really not a big concession. And I don’t know if he has my best interests at heart or his own exposure to liability. I expect it is the latter though I believe he wanted to help us and still would if we don’t ask him to do anything he has not already offered. It’s his right and I don’t fault him for exercising it. If he won’t refund any part of my fees if we have to change clinics and move our embryos (which is not cheap!) then it will be obvious that my best interests never came into play in his decisions. But that conversation is for another day, first I wait for our RI consult and testing and follow up consult about results. Like you I’m on another round of wait and see. At least I’m in good company!

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