Change Of Plans

istock_000007309956xsmall_crop380wSo after my last post, I was feeling good. I had a plan. I was going to follow that plan, but I didn’t feel attached to the outcome. I felt like our child would come to us in whatever way he or she was meant to.

But what ever goes according to plan? Nothing, you say? That’s right. Nothing.

Warning: this might get long. And boring. Long and boring, yay!

This week we had our two second opinion consults. First up was CCRM. We spoke with Dr. Surrey and he was quite lovely. He had some interesting suggestions. One was that Tim get a next-level sperm test, the name of which escapes me now. Then he suggested I do a double trigger shot. He was thinking that the reason I had half as many mature eggs as follicles both cycles was because they weren’t responding properly to the trigger. He also does not consider someone DOR if they have normal FSH, AMH and antral follicle count. Finally, he said that I might as well transfer our frozen embryo at my current clinic before coming out to Colorado, and send him a thank you note if it works. We liked him. I think CCRM is a great clinic. I think they have amazing labs. Other than the labs, though, I didn’t feel like they had much more to offer us than our current clinic. And the multiple trips to Colorado alone would put us in a bad financial place, not to mention the out-of-network costs for the actual treatment. Case closed.

The next day we spoke with Dr. Braverman. He is a reproductive immunologist. This is a very new field, like so new there are only a couple of these doctors in the country. I first heard about him through my friend over at Spirit Baby Come Home. She has had a lot — way too many — miscarriages. She worked with Dr. Braverman and is now a few weeks away from giving birth. As soon as I heard of him I thought, Hmmm, that guy sounds interesting.

One of his main areas of research is endometriosis, particularly “silent endometriosis,” which is where you have the condition, but experience no symptoms. This piqued my interest because a close relative had this exact thing. She was diagnosed with unexplained infertility and had multiple IVF failures. They accidentally discovered that she had endometriosis during a surgery for something else. They removed it and then her next IVF worked. I’ve asked both of the doctors at each of the clinics I’ve been to if I should be concerned about endometriosis based on my family history. They both said that, no, I shouldn’t be worried. Even if I had endometriosis, the way to work around it is IVF.

Braverman completely disagrees with my doctors’ assessment. Through his reasearch he’s learned that endometriosis negatively impacts egg quality, often making it look like a patient has DOR, when in fact they don’t. He also says that Antiphospholipid Antibody Syndrome typically goes hand in hand with endometriosis.

With every mishap that happened these last few months — miscarrying the genetically normal embryo, getting diagnosed with a blood clotting condition — I started to wonder if I should contact him. But he is a recurrent miscarriage specialist and I’ve “only” had two, so I felt weird about that. Plus, I was comfortable at my clinic (I really do love them!). And finally,  Braverman is beyond expensive.  So I never pulled the trigger. I kept thinking about him, though, and wondering. Then after that last failed IVF and DOR diagnosis, I was like, ok, let me at least talk to the guy.

So I did. I had read a bunch of his articles before we spoke to him, so I was not surprised in the least when five seconds into the phone conversation he was like, BOOM, I think you have endometriosis. He said my family history, combined with my elevated anticardiolipins, combined with my diminished ovarian response, points strongly towards that diagnosis.

Even if what he was saying was true, the fact remained that we couldn’t afford to get treatment with him without sacrificing every penny we had and then some.

But then he told us that he would collaborate with a doctor about 45 minutes from us. This is huge. That means I could be under his care and still in-network with my insurance. Then his financial person got on the phone and said that if I needed surgery to remove endometriosis, the hospital they use is in our network. Meaning the surgery would be fully covered, too. This is even huger. I figured he would be recommending surgery, but I knew there was no way in hell we could swing out-of-network surgery. But it turns out that the only out-of-network things we’d have to pay for would be his initial testing and consulting fees.

Uh, so all of a sudden this doctor that I thought was totally out of reach just became a real possibility. It felt like the Universe had tipped its hat to me and said, “Here you go, wish granted.”

So we’re doing it. We figure the only thing we have to lose is time. The soonest we’d be able to do an IVF going this route would be September. We were just about to start a cycle at our current place in two weeks. That means we would be done with that cycle and, if needed, a frozen transfer and potentially be onto adoption by September. Now everything will get pushed back by several months.

But it feels like we would be doing that next cycle at our clinic just to do it. Which is kind of a yucky feeling. Don’t get me wrong, I don’t think Dr. Braverman is a miracle worker, at least not for everyone, but I do think that immunology is really the only avenue we haven’t explored yet. And, provided that he actually finds an issue, I think we have a better chance with him than our current doctor. How much better, I have no idea. It’s still nowhere near a sure thing, or even on the right side of the odds.

Then there’s always a risk that we do all the immune testing and get the surgery, and he finds absolutely nothing. I think in that case I would feel pretty stupid that my hunch led me nowhere.

In the end of the day, there is no right answer. But I do think it’s worth giving Braverman a shot.

In the meantime we plan to continue researching and saving for adoption. We’re going to try and do as much of the adoption leg work as we can so that if this hail-mary IVF doesn’t work we can jump right into it.

But who knows, maybe it will work. You just never know.

33 thoughts on “Change Of Plans

  1. Ouuuuu this braverman guy sounds pretty great! I agree, that there’s no *guarantees*, but, man, everything seems to make so much sense. I am happy to hear he’s able to collaborate with local doctors to save you a lot of time & money. That’s huge. I’m feeling good about this post! All good things! (I still expect to catch up with you privately at some point, young lady! ;))

    1. Thanks, girl! Let’s def catch up soon! I need to get better about checking that gmail IM. I feel like every time I check it there’s a several-days-old message from you and I’m, DAMMIT!

  2. I so hope that your path forward is clear and easy! Honestly, I just want your next one to work! I don’t want to see you suffer any more. I hope Dr. Braverman is able to help with that – I know he gave us the answer we needed, suspected silent endo and reversed blood flow to my uterus, that required our of country treatment that we just couldn’t responsibly afford. But if you have in network coverage, and affordable options it could absolutely be your solution!!
    Sending you love you friend and hoping with everything I have that everything continues to fall into place.

    1. Thank you, my friend! I figure either he will have some answers or he won’t. If he does, great! Then regardless of whether a treatment with him works or not, we’ll at least know what’s going on. If he doesn’t have answers, then I feel like no one will. And I will truly be at peace with that. I think it will provide closure either way. It would be a bonus if the closure comes with a baby, though! 🙂

  3. I know I said this privately but I want to repeat my thanks to the Universe for finally cutting you a break with the coverage and collaboration. Huge is right. I truly and almost desperately want this to be your last foray into what-ifs and a road to that little one you have been trying to bring home for so long.

    1. It is great to feel like the universe cooperating every once in a while haha. I’m hoping it continues its agreeable streak so that you can have a 100% uneventful next few weeks and birth!

      1. I wish that were so. I’m just trying to figure out the least horrible time to go to L&D or ER because the pain in my left side has prevented me from sleeping for several nights, is getting worse and feels organ-related now not just a case of bruised ribs. I’m scared, sore, exhausted and unhappy. 😦

      2. Oh no, girl! Can you just go now? I want you to go right now! That sounds awful! You need sleep and you definitely need to make sure your organs are ok. I’m sending all the good thoughts to you. I cannot WAIT for this pregnancy to be over for you, and for that baby to be safe and sound. You’ve just been through too much!

  4. This all sounds great. One thing to keep in mind is, sure, you might feel a little silly if you go through the surgery and they don’t find anything… but balance that against that nagging wonder you’d otherwise have for the rest of your life that MAYBE if you’d just explored this scenario you MIGHT have a living baby of your own… I know what I’d do! 😉 I’m so glad you’ve gotten some hopeful news from these experts.

  5. Sounds like you may be on to something. Better to explore every possible avenue than to wonder “what if…”. I hope this leads you to your answer and another take home baby.

  6. I love this! You are so smart to be so thorough and to have no regrets. This is all part of the journey. Xoxo

    1. I always try to live life without regrets. I don’t think it’s entirely possible to do that 100% of the time, but I think it helps with decision making. And you are right, it is all part of the journey — it’s so easy to forget about the journey when you’re focused on the end destination (which I almost always am).

  7. Definitely worth it – you will know you covered EVERYTHING and then no matter what the outcome you’ll have mental peace over what has been. Dr B sounds amazing – and it all sounds very exciting – in a hopefully-discovering-something-you-can-work-to-overcome kind of way. I think immune issues are severely ignored in this whole infertility arena. And best of all it’s not going to cost you the earth, hurrah! X

    1. Yes, exactly, if I can get through all of this with a feeling of peace at the end — no matter the outcome — that would be amazing. I sure do hope I get some answers, though!

  8. Wow this is all good stuff. Dr B sounds like he is all over it. I am a big believer in signs and I think they are looking good for you; pointing you in thos new direction. I am very interested in the outcome of this exploratory surgery for both of us x

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