Revisiting the diagnosis

Two years ago, when I was living on the Left Coast and first got the news that I sort-of had antiphopholipid syndrome (I'll explain that in a sec), my reproductive endocrinologist told me that, while she didn't expect me to exhibit any symptoms of APS outside of my tendency to miscarry, I should have annual blood checks to make sure my antibody levels didn't go through the roof. Also, I should make make sure I wasn't developing any of the antibodies associated with lupus, which sometimes exists concurrently with APS (though the relationship isn't thought to be causal).

So that was two years ago, and last year I was busy having Sam (yay!) and didn't get checked. But I went back a few weeks ago to meet with a rheumatologist here in my East Coast city.

If there's one thing your doctor likes to tell you when you show up with an autoimmune disease, it's that "there's still so much that we don't know." Here's a summary of what I've learned so far:


1) To get a diagnosis of APS, you have to meet both clinical and laboratory criteria. Clinical criteria include venous or arterial thrombosis and/or pregnancy losses (specifically, one or more miscarriages after 10th week of gestation, three or more miscarriages before 10th week of gestation, or one or more premature births before 34th week of gestation due eclampsia). To meet lab criteria, you have to test positive for anticardiolipin or lupus anticoagulant antibodies on 2 occasions of some weeks apart (6 to 12 weeks, depending on which antibodies they're looking for).

2) My particular problem antibody is of the anticardiolipin sort -- specifically, IgM (Immunoglobulin M). IgM and IgG antibodies are measured in the following way: fewer than 12 units = normal; 12 to 20 units= borderline; 20 to 80 units=moderate; more than 80 units=severe. My understanding is that lupus anticoagulant antibodies are a binary thing: either you have them, or you don't.

3) APS (also called Hughes Syndrome) can be quite a serious disease in some people, but there's a current line of thinking that there may be a population of women whose only symptoms are pregnancy-related. That is, they don't appear to be in danger of pulmonary embolism or thrombosis outside of pregnancy.

I've now had my IgM antibodies measured four times. After the miscarriages, they came in at 21.2 and 21.6, measured 7 weeks apart. During my pregnancy with Sam, while I was taking Lovenox, they were at 16. At my most recent visit, they were 19. It looks like I have a "mild" case. I've "only" had 2 miscarriages. No clots.

So...my docs on the left coast felt that while I was a borderline case, they should still treat me as if I definitely had APS. And so I went on Lovenox as soon as I knew I was pregnant with Sam. And it worked.

But the rheumatolgist here, who doesn't specialize in APS or miscarriage, wasn't as convinced. "Your levels are so low," she said. "Who knows if those first two miscarriages were just a matter of bad luck? And it's not like there aren't risks to being on blood thinners. I'm not sure if I'd even want you to be on Lovenox if you get pregnant again."

But, of course, if I get pregnant again (something Adam and I are discussing only in vague terms, with no final answer), I'll get right back on my vitamin L. Maybe it was just a matter of luck that this pregnancy worked. Maybe my ovaries are shaped like little roulette wheels. But I'm pretty convinced the drugs saved Sam's life, and in the matter of reproductive endocrinologist v. rheumatologist, I'm going to listen to the people with the better track record of bringing healthy babies into the world.

Catch and release

Sam is going through a Mommy phase. He just needs a lot of contact. He has this little game that I call "hug and look around," where he stands up, facing me, squeezes me tight, then pivots around to take in the world around him, then squeezes again. I love it. Love, love it. And it is such a pleasure to be needed like that and to be able to reassure him.

Only...his phase corresponds to the busiest month of work I've had in...years. Certainly in his short life. The volume of work is insane. And I just feel so miserable about all the time I'm spending away from him. Every day, I want to quit.

How can we be almost 40 years beyond the second wave of feminism and have so little to show for it?

My employers aren't cruel or unreasonable. They let me work from home one day a week. They do what they can to spare me the late nights that everyone else is putting in. I have no complaints about them, really. It's just that the nature of the job is incompatible with motherhood.

Blah, blah, blah. It's just a tough situation right now. I miss my baby. My body feels torn in half when I'm gone so much. We went through a lot to have him and I'm tired of feeling like I'm missing everything.

Meanwhile, I finally got around to making an appointment with a rheumatologist. Back when I was diagnosed with antiphopholipid syndrome, my doctor suggested I go in for annual blood draws to assess my anticardiolipin antibody levels. I'm a little overdue.

As far as antiphospholipid syndrome (APS) goes, I'm lucky, if you can set aside the two dead babies, which, of course, you can't. My antibody levels were reasonably low, even at their highest, and they were even lower when they last checked early in my pregnancy with Sam. Barely made it into the "disease" range. It appears to be something that only acts up during pregnancy for me, and Lovenox was my magic bullet on that front.

So I think I'm pretty healthy now. But there's always some concern once you've wandered into the world of autoimmune disease. Sometimes APS is a precurser to Lupus. That's scary. But my doc said I didn't fit the profile, so other than a few weeks when I felt particularly achy after Sam was born, I haven't worried about it.

But it'll be good to get checked out and know whether things are trending in a good direction.

The first

It was warm today. I'm on the bed with the window open, looking out at the lights from the city. Cat is here. Adam is on his way home. I'm happy tonight.

I had my last miscarriage (5 weeks) in October. The one before that (9w2d weeks), in August. Despite my best good camper efforts, mild depression in November turned to crushing despair in December followed by antidepressants. Post-partum depression, without the baby. So much more streamlined. I wrestled with feelings of failure. Wrestled with God. Wrestled with my skinny jeans. Still no answers, but the light is getting longer.

My blood tests have revealed borderline antiphospholipid syndrome, a clotting disorder. We've sought out 3 doctors, received two opinions. 1) Assume it's a cause and treat it, or 2) assume my levels are too low and ignore it. I'm leaning toward #1, but that means daily belly shots of Lovenox and the odd fear of bleeding out. Or of Adam passing out.

I'm sitting on the bed looking out the window and waiting for a sign. Will it be soon?