Did I Tell You? (On Clotting Disorders)

I know this post seems out of the blue - everything will be explained in he next post. But as I was typing The Next Post, I was reminded of something that I meant to tell you, and I'm not sure if I have yet, just in case it might help someone reading.

You might recall that, when I was in the hospital with HELLP Syndrome, I tested positive with a whole host of clotting disorders (lupus anticoagulant, anticardiolipin antibodies igm, protein S deficiency, and MTHFR). After my pregnancy, however, I only tested positive for slight protein S deficiency and MTHFR - I was no longer actually a clotter in the eyes of my hematologist. (Which is wonderful in terms of my overall health.) In the eyes of my MFM however, I for some reason became a clotter when pregnant

You might recall that the role of clotting disorders in pregnancy is still being understood. That the evidence linking clotting disorders and preeclampsia is not concrete, and is actually becoming shakier over time. Nonetheless, due to my history, I was on Lovenox throughout this pregnancy.

You might also recall that my MFM has a remarkable way of not providing direct or concrete answers to questions :)

You might therefore understand my surprise when he - twice now- directly answered my question of "What happened?" What went right? Why was this pregnancy so strangely uneventful?

I first asked him in the delivery room while he was stitching me up (What? I had a captive audience!), and again at my 6 week appointment. He clearly and succinctly responded: 1) I was carrying a single child rather than multiples, and 2) "We realized that [I] needed to be anticoagulated."

So there you go.

I'm not saying that my MFM knows any more than the next. There is certainly a wide range of opinions out there on the subject of whether and which women should be anticoagulated during pregnancy. But I will tell you that, in my eyes, my MFM is the reason this baby is laying across my lap right now. And if he says that Lovenox was the magic ticket, then that's all right with me. And for anyone out there facing a similar circumstance - I just wanted to share.

Test Results - Part 1

I don’t even know what to say. Here’s some background. I may have insinuated this in my last post, but I don’t remember and I’m in no mood to read it again. But here’s how it happened:

I’m in the hospital. The great and powerful MFM Dr. C - and I say that with all seriousness and no sarcasm, we love him! – anyways, the great and powerful Dr. C. is confused. Completely stumped. The source of his confusion? Me. Never had he seen a case of HELLP this early and this severe. Even with twins, which would exacerbate the condition, this was extreme. I was an enigma. (Yeah, now you know why its been such a help for me to find community with you ladies – my doctors made me feel like a freak!)

Anyway. He starts searching for answers. They’re running a bazillion blood tests. He’d been on the phone with the head geneticist at Mayo, and wants to send my blood up there for some hoody doody workup - but we held off because he learned that the $23k price tag wouldn’t be covered by insurance. (Are you freaking kidding me Dr. C.?)

Then the results for the clotting disorder tests started rolling in. Lupus Anticoagulant – positive. Great. We have an answer. Dr. C. was pacified. Mayo was put on hold and we called in a local hematologist, Dr. D., instead. Then more tests results came in. Now, anticardiolipin antibodies igm – also positive. As I treated with Dr. D. I learned I also tested positive for homo MTHFR. And something about Protein S was mentioned in passing.

I was on Lovenox for almost FOUR WEEKS. The cumadin wouldn’t work. My blood was t-h-i-c-k. I was definitely a clotter.

So, I go back today to get the results of my retest and confirm my diagnosis, and what do I hear?
Lupus anticoagulant – negative
Anticardiolipin antibodies igm – negative
Protein S – marginally deficient. ("marginally" as in 70 is normal; I was 69. Seriously?!)

So, Dr. D. was rejoicing. And I was crushed. Crushed. I had said that I didn’t know what results I was hoping for, but it seems I lied. I wanted everything to come pack positive – then we would at least have a theory as to why everything happened, and we would have something to treat next time around. Now - ? What do we have? I don’t even know.

So, I tried to ask Dr. D. some questions. I asked him – “Sooo, what do you think happened?" And I think (keep in mind that the brillance is communicated through a heavy Egyptian accent) – he said “Yez, you haad de Lupus Anticoagulant, but eet was transitory.”

Transitory? What? Like it comes and goes? That doesn’t make a ton of sense. So I asked, “Sooo, since I had it – did I have it because I was pregnant, or was it just a fluke?” To which he responds (I think!) – “A floouk.”

Are. You. Freaking. Kidding. Me? It just does not make sense to me that someone (i.e. me) can be such a freaking enigma because of a fluke.

In non-clotting news, I finally am getting my red blood cell count back up! However, my iron is super low. Low as in he wants the measure of whatever they measure to be 100 – and I’m at 16. And its been steadily dropping for the last three months.

He said he’s not super concerned because my RBC is going up, and it takes iron to make that happen. I get back and consult Dr. G.oogle – yes, to my surprise, “anemia” is defined as iron deficiency and a lack of RBCs. Who knew? (Well, you probably did, but I didn’t. I just thought it had to do with iron.)

So, I’m thorougly frustrated and thorougly confused. And I'm terrified. To me, the apparent lack of underlying disorders just means that my body completely freaked out and hated being pregnant. I don't know if that's true or rational, but that's what's in my head now.

Thank you all for thinking of me today. We're hopefully going to be able to meet with my MFM Dr. C. on Friday, and I just pray we get some answers then. In the meantime, if anyone makes more sense of all this than I do, please feel free to share. Ya’ll are the best :) (And yes, I said ya’ll.)

Oh yeah, and I am glad I’m not at high risk for strokes and stuff, but that’s really taking a back seat in my mind right now! (Although - wonder if my OB would put me back on the pill now?? Humm. . . .)