« Program note | Main | Toddle model twaddle »

03/11/2006

20/20

We agreed that 50's too high.  The 50% chance of a recurrence of HELLP, the 50% chance of an extremely premature baby — too high, too foolish to try.  I asked Paul what number would make sense.  "5%," he answered promptly.  "Five is easy, just like 50.  20 would be harder."

And it is.

...

I'd waited 40 minutes for the doctor to enter, so I had a lot of time to plan my ambush (and to open the biohazard wastebasket and peer curiously within; and to take my own blood pressure several times on each limb, carefully computing an average; and to stack the moist towelettes in the bathroom in alphabetical order according to lot number).  No sooner were the hellos said and my chart heaved laboriously onto the desk than I pounced, and asked the question.

20%, the doctor said, when asked what our chances were for another birth before 34 weeks.  20% chance of HELLP or pre-eclampsia again.

Those numbers pertain to treatment with Lovenox, low molecular-weight heparin, an anticoagulant that reduces the chance of troublesome clotting.  She talked a bit about the drug; because of its expense, she pulls it out only for patients who really need it, "classic cases like you."  (I sat there feeling suddenly all classic and shit, trying to seem refined, a difficult pose to assume when you've just entertained yourself by repeatedly blowing up a latex glove and then letting it go pffffft as you release the air.)

She told me that Factor V Leiden is quite definitely associated with HELLP, and was obviously implicated in the placental infarction that was found after birth.  With Lovenox, she said, the chances of a blood clot during pregnancy were not zero, but "extreeeeeeemely low" (extra Es hers).  With two daily injections, our chance of a successful, relatively uneventful pregnancy was "very good, the most likely outcome by far."  Because Lovenox is so effective a treatment, the only additional monitoring I would be subject to would be non-stress tests beginning earlier and taking place more frequently, and of course my own increased vigilance.

I asked about my risk for a repeat placenta previa, expecting her to wave the idea away, but in fact she did not.  She placed my chance at 10%, based on the several risk factors that now apply — had it before, prior C-section, prior D&Cs, IVF, and, now, somewhat advanced maternal age.  She looked a little grave when I asked her what happens if I have placenta previa, which usually means bleeding, while on Lovenox.  "It's a balancing act," she said, explaining that we would then adjust my dose of Lovenox to the lowest possible level, and then hope for the best.

Hope for the best. 

Yeah. 

Huh.

She went on to warn me that my risk for placenta accreta, in which the placenta digs way into the wall of the uterus or even beyond, is now elevated, too.  Therefore my chance of needing a hysterectomy at delivery is greater as well.  (This did not upset me as it might have; once I've finished using it, I would not be sorry to kiss that uppity bastard goodbye.)

Once my uterus was summarily dispensed with, we talked about IVF.  She confirmed that I should be on a prophylactic dose of Lovenox during a cycle, with a therapeutic dose to commence upon a positive pregnancy test.  I asked, though I already knew the answer, whether having multiples would increase my risk of...well, everything.  To bring her out of the dead faint she fell into at the very notion, I broke an amp of ammonia under her nose, then assured her that multiples were the least of our concerns with IVF.

We talked some about risks beyond the immediate postpartum period.  Pregnancy itself, she said, puts me at greater risk for a clotting problem, but once the pregnancy is over, and once I've finished a 4 to 6-week course of anticoagulant therapy after delivery, there are no additional implications for my health.  Speaking only in terms of clotting, and therefore barring, say, the liver or kidney damage that can occur with HELLP or pre-eclampsia, I need not worry about whether a pregnancy would compromise my health overall.

And I asked her what her greatest medical concern would be if I were to conceive and become her patient.  "Multiples," she said promptly, but rallied when I told her I was comfortable mediating that risk.  (Our difference in position and perspective was obvious: she was talking selective reduction while I was talking single-embryo transfer.)  Her other great concern was previa, a risk we cannot mediate.  There's nothing to be done for that, and by the time you know it's a problem for sure, it's simply too late to punch out.

...

It's just like anything else.  When you're just beginning fertility treatment, Clomid and inseminations, you fear you'll never have a child.  But once you've been flattened by a few IVF failures, that fear congeals into something harder and colder.  When you've never miscarried, you're scared that you might.  But once you have miscarried and get pregnant again, you think, Ohhhh.  Scared of miscarrying.  Gotcha.  And, okay, because of placenta previa, I did worry about a premature delivery before I had Charlie.  But I know better now what I'm scared of.

We think we know what hurts, and then something worse hurts more. 

I was sitting on the exam table looking at the pain scale hanging on the wall — you know, the one with the faces — thinking about this.  If you'd asked me before our first IVF what possible outcomes I expected, I'd have drawn you something like this:

Ivf1pain_1

Sure, I knew the statistics for miscarriage, but I also knew that it was more likely our cycle would fail, as 57% did that year for my age group, than that I'd get pregnant but lose it.  It all seemed pretty straightforward, downright binary.  We'd win or we'd lose.

And we lost.  On our second cycle, I knew a lot more about what could go wrong.  Based on my experience, my appreciation for the subtleties was a bit keener. 

Ivf2pain_1

I'd thought I knew how it would hurt.  But my scale should have gone to 11.

Still, I was getting better at this.  After some careful recalibration, I was ready to take on our third IVF cycle with a scale that would address any eventuality:

Ivf3pain

I was pretty sure a drawn-out miscarriage would just about do me in.  Fortunately, it never got that far.  Unfortunately, I failed to predict the need for a smiley face to represent the frightening possibility of never — not just on this cycle, but ever — carrying a child genetically related to me.

By our fourth IVF, I had no more zero; enough had happened that "no hurt" wasn't an option.  Having a baby was still the best possible outcome, of course, but all of the other possibilities seemed, at that point, equal: a loss or a negative would have meant adoption or donor egg.  Those were options I could live with, if not immediately feel excited about.

Ivf4pain_1

And, you know, I was mostly right.  Baby of any description — known to his familiars as Charlie — has made me a solid two, most days trending to one.  I am happy.  It's not the unfettered happiness of zero, the kind of joy you can feel before anything really bad has happened, but rather the relieved contentment of knowing you've weathered a ten and are little the worse for wear. 

"Hurts little bit" indeed.

So I sat there thinking of Charlie, thinking of two, wondering whether I can stand to risk it, and trying to imagine what the scale would look like if we tried again. It came out looking a little like this:

Painscale_3


I know what the best possible outcome is; even that, though, comes at a price.  And I know what the worst is, unlikely though it be.  (Paul wouldn't be caught dead in a hat with a veil, no matter how fervently I might wish it.)  It's what happens in the middle that feels so fuzzy.  Short of the worst, what's the worst that could happen?  What would hurt most?  How would I cope?

I simply can't say, and it's pointless to try.  What makes the exercise pointless is also what makes it so scary: You don't ever get to pick.

...

It's hard to know what to do with this information.  I am trying to keep it in perspective by reminding myself that I was actually at greater risk while I was pregnant with Charlie.  After all, the same conditions applied then; we just didn't know about them.  And because we didn't know about them, we couldn't treat them.  We didn't know we should be on alert.  I didn't think a stomach ache could be such a big goddamn deal.

Now that we know and can treat the problem, my odds of having a successful pregnancy are much greater. It is true that I'm at risk again for severe pre-eclampsia, but it's also true that if it develops in subsequent pregnancies, it tends to happen later, although this is not a hard and fast rule. It's true that I will probably have gestational diabetes again, but I've been advised to get my blood sugar stable before even trying to conceive, so that will be taken in hand. About possible placental implantation problems, we can do nothing — I'll be far too busy counting every last grain of brown rice to devote any energy to moving that messy old thing.

We're better equipped now to deal with the consequences, and therefore more likely to have a good outcome — in fact, a better outcome, a later birth, a healthier mother and child. 

20%.  Sure, I'm scared now.  I should have been then, too.  I just didn't know it yet.

Comments