Last night I tweeted:
Welp, another bad blood test result. My OB is transferring my care to regional perinatology center. So fucking terrified right now…
I could probably just save myself a lot of time and leave this post at that. It pretty much sums it up. But, I won’t. Mainly because I’m, well, fucking terrified. And pissed. And numb. Somehow all at the same time. And whining on this blog is usually something that helps with those feelings.
If you missed my post from earlier in the week, you should probably catch up there before going any further. I don’t have the energy to review it all again. I don’t have the willpower to make myself reread and recount a post that ended so (relatively) hopeful and optimistic.
At Tuesday’s reassuring appointment, I also talked the doctor into running a few additional blood tests that my old reproductive immunologist has recommended. Again, the OB happily consented, but felt it was unlikely the antiphospholipid antibodies would be elevated since they’d tested normal so many times before. Last night he called back to inform me that, while only one of the two antibodies he’d tested was back, it was, in fact, very elevated. And so were my complement levels. After reviewing the results he placed a call to our regional perinatology center seeking advice. (Have I mentioned I love this man and his teensy, tiny ego?) They reassured him he was doing all the right things – steroids, lovenox, careful monitoring – but, also informed him that it was probably time for my case to be transferred over to their center. Put simply, a crisis is going on in my body for an as-of-yet unknown reason, and there’s no way we can continue the charade any longer that I’m just a normal pregnant lady. I need the highest level of care around, and that comes from the center that serves the 9 counties in my part of the state. I’m lucky, it seems, to only have to drive an hour to see them. Though, “lucky” isn’t really a word I’d use to describe myself and my situation right now. Lucky, it seems, is something I’ll never be.
Of the antiphospholipid antibodies tested, the anticardiolipin has yet to come back, but the hexagonal phase phospholipid nuetralization is sky high. Like any good patient experienced with chronic illness I immediately Googled “lupus anticoagulants and pregnancy.” Of the seven results that appeared above the fold on my laptop monitor, five included some combination of the words “negative pregnancy outcome,” “intrauterine deaths,” “miscarriage,” or “still birth.” So, yea, there’s that. Basically, the ANAs let us know that antibodies are attacking my body; the positive APA lets us know that at least some of these antibodies are attacking fats – or phospohlipids – including those fats in my cells and cell membranes, including blood cells and the lining of blood vessels. The theory goes that as blood vessels are attacked, tiny clots can form, and those tiny clots can take a trip to the womb, get stuck in the placenta, and block the flow of nutrients from mother to baby. Basically, my body may suffocate my healthy, happy kid. Because, you know, that isn’t remotely fucked up or unfair in any way.
So, despite all odds, I have a happy, healthy baby inside me, grown from a crop of happy, healthy embryos, in a petri dish that made a much better home than my fucked up body ever could. No one is willing to speak in certainties with these things, but we’ve got pretty strong evidence at this point that my last loss at least (and perhaps others) was from exactly this scenario playing out, but earlier on in the pregnancy when the embryo had no placenta to protect it from my immune system. Turns out it was probably a pretty good call for me to demand dexamethasone and lovenox be added as part of my IVF protocol as the combination of steroids and blood thinners in the first trimester may have helped stop an immune flare that could have taken this pregnancy just like it took the last. But, as I weaned off the dex as instructed at 9 weeks, my body was suddenly free to fuck up once again, and a flare of some sort began. So, now we’re back to square one. But, further along in so many heartbreaking ways.
I can’t control my thoughts. They flit and float from once thing to the next without warning. Overall, yes, I’m fearful for our baby. For the innocent that my body might destroy. But, then there are times I sink into a sea of self-pity. WHY is this happening to us? How have I not given enough already? Why am I ringing in my 30th year with yet another health scare, yet another series of doctor visits and tests, yet more questions without answers? And then, I get angry. So very angry that this is my life. That I spent so much of my 20s battling for health, and now it appears my 30s will be more of the same. Angry that I know so much about the medical system and medicine despite being in a totally unrelated field. Angry that I’ve given my husband a chronically ill wife, after he had to spend so much of his time surrounded by a chronically ill father. Angry that I don’t even have my mother to cry to because cancer took her from me. Angry that, should we succeed and bring a child into this world, my health may keep me from being the mother I always wanted to be. Angry that my body may kill my child. And then I feel selfish. Selfish for wanting a child so badly that we ignored these warning signs. Selfish for fearing for my own health when my child’s life is at risk. And selfish for crying about the risks to the growing being inside me when so many others would give anything to have even a high risk pregnancy when the only other option is never experiencing pregnancy at all. And from this flitting and floating (and likely also the all-out war that is going on at the cellular level within me) I end up exhausted beyond belief. I now know why I never received the long-promised energy boost of the second trimester. I now know that even this pregnancy will be a battle; that our fight didn’t end after conception, after the heartbeat, after a beautiful NT scan and quad screen. Our fight, in many regards, is just beginning.
And of all these emotions, the one tiny pin that dropped and broke that giant pane of glass? Hearing that my doctor was dumping me. The doctor that listened and cared and has called me more times than I can count on evenings, on weekends, on holidays. That was it. That was the moment it all tumbled down. For all my independence and doctor-loathing, I’d somehow come to need this man for strength and guidance and reassurance. Now, we start all over. Sure, my new doctors will be the tops in their field and have the health of me and Baby But IF front and center, but I’ve had too many bad doctors to be fooled into thinking that they’ll certainly care as much (if not more) than Dr. T. did. And all that just makes me all the more exhausted.