Trying to hold ourselves together and find our new normal after loosing our precious twin babies at 20 weeks to HELLP Syndrome.
Baby Boy A and Baby Girl B, conceived after 20 months and IUI plus injectibles; born still on November 12, 2008.

A blog about pregnancy loss and infertility. And whatever comes next. A blog about hanging on together and holding each other up.

Wednesday, February 11, 2009

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. . . .)


noswimmers said...

Shit, hun...I have no assvice/input. I know the frustration of not knowing what the heck is going on with your own body/why this all happenedd...just wanting some ANSWERS! I am hoping that you find them at your appointment Friday. It won't bring your babies back, but it will take a big weight off your chest.

Barbara said...

It's awful not knowing the hows and whys and what nexts. Terrifying too, oh yes.

Hang on.


Devon said...

gosh, i wrote that same post last summer. after talking with some other women, doing my own research, i found its COMPLETELY normal. case in point: a friend. she had an actual blood clot 2 weeks after delivery.she came hours away from dying. first test = positive for LA. second = negative. and she had a FREAKING blood clot!

so i think, especially when pregnancy is involved, that it can come and go...and sometimes the stress of pregnancy brings it out. at least thats whay my hemi-doc said. he said to me " kinda have it" - i hope though that the treatment would be the same.....lovenox & baby aspirin. and that they would test you during pregnancy...

((hugs)) i know all this stuff is so overwhelming and you so badly want an answer. i still think this is yours...cuz our stories are so similar and i am really holding on to the fact that lovenox & baby aspirin will at least help me carry a baby to 30 weeks...

hang in your own research. don't despair....

Ms. Monkey said...

Wait..wait...are they still saying that you are homo MTHFR? That's what I am (C677T), which has me on Lovenox from ovulation and beyond. I can see how you are confused from the latest tests - and I completely understand the idea of wanting the results to just be conclusive. We're still in that "maybe it's this, or maybe it's not" limbo.


Mommy (You can call me OM) said...

First, THANK YOU for being such a great support to me. I love reading your comments.
Second, Mayo is my next door neighbor. Literally. Come for a visit.
Third, I can't offer any medical advice (I believe we share another club membership, the Bar). But, OMG. How frustrating for you. I actually hear you on wanting a diagnosis. I halfway (OK, probably not even halfway) wished for cancer so I could blame SOMETHING for losing E. But, I have no answers.
Can lupus present just during pregnancy, much like gestational diabetes?
I'm thinking of you and praying you find some answers. And peace.

Soralis said...

Sorry to hear that you didn't find something that you could fix. Hugs

Cara said...

Whoa - that is one wild ride. I know how you feel hoping for a postivie, because ANY explantion will pacify us for a minute.

Sorry - feel better.

Tarah said...

I just wanted to tell you how sorry I am. I wish that no one ever had to go through this heartache.

I'm thinking of you and keeping you close to my heart.

Annie said...

I have to admit I don't know a lot about it, but I do have MTHFR and my understanding of clotting disorders is that many of them don't affect you until you are pregnant. I don't know how it works with others like lupus anticoagulant as far as testing, because MTHFR is a genetic thing so it should show up regardless of whether you are pregnant or not but even so for some women it doesn't seem to actually affect their blood and clotting unless they are pregnant...but perhaps with some of the other clotting disorders it is possible to get normal test results (or nearly normal) when you aren't pregnant, but when you are pregnant your tests would come back abnormal/positive indicating a problem.

Again, I am not 100% positive on this, but that is my understanding of what can happen with some clotting disorders.

Ya Chun said...

That sucks when the results aren't clear.

My assvice, get an additional specialist- maybe a rheumotolgist or a GI (to test for other malabsorption issues that could be leading ot the anemia)

Plus, is the test still saying MTHFR - cause if not, they mixed up your samples! How are they treating you for that? As I know for homo MTHFR, you have to be on high folic acid your whole life (otherwise your homocyteine gets too high and leads to heart problems).

I just maybe a table with all my test results, to see it more clearly! +s, then -s then borderlines. BLEH!

Madeline said...

Hi--I have another thing to test for. I lost 2 babies due to thickening blood. My problem was ....antiphospholipid syndrome. It's a mouthful, I know. During my nest 3 pregnancies, I took a baby aspirin every day, as well as daily Lovenox injections. All 3 babies were carried to term and are healthy. I'm sure your doctor tested you for this, but I just wanted to throw it out there.