04/16/2003

Dear doctor, Knock it off. Anxiously, me

At the doctor's office today, I was marveling aloud at the size of the blob of tissue I'd expelled. My doctor said, with just a little too much eagerness, "Yeah, if we'd left it alone you probably would have had a rupture. It sounds like you were pretty close."

Um. Yeah. Thanks. Listen, next time could you say something, you know, reassuring?

Do you think maybe I've given an incorrect impression of how well I'm handling this?

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06/20/2003

What I thought but didn't say

Doctor: So how are you?

Julie: I can't even talk about it.

Doctor: You know, I can offer you better living through chemistry. Prozac?

Julie: No, thanks, but I am hearing a lot of good buzz about heroin...

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10/26/2003

Talking points

Topics that have recently come up in conversation while an ultrasound wand protrudes from my vagina:

  • the novels of Thomas Hardy
  • sexual dimorphism in ducks
  • the systematic attempts to stamp out French in 1970s Louisiana

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11/20/2003

Just a little off the top

I have learned something new. I have learned that some women get pretty for their doctors. Not only a good wash and maybe some hasty leg-shaving — which is as much as I ever do — but pedicures and bikini waxes to boot.

But I can't figure out why. Do we think our doctors are looking?

I can see how you might feel the urge to spruce up the place if you thought the person rooting around down there was actually interested. But I just can't imagine my doctor is. In his long career he's faced down vulva after vulva after vulva — so many that he doesn't even need to cast a downward glance while introducing the ultrasound probe. In fact, I'm pretty sure he could do it blindfolded, backwards, with one arm tied behind his back. Hell of a parlor trick. Life of the goddamn party.

Or maybe we're talking curb appeal. If I put out a nicer welcome mat and a couple of pots of geraniums, are my embryos more likely to decide that my uterus is a nice place to raise a family? One chipped toenail and there goes the neighborhood.

Or maybe it's part of some obscure pagan ritual. Maybe a neat pelt pleases the gods, but an unruly thicket calls down their mighty wrath, guaranteeing everlasting barrenness. Weren't human sacrifices washed, shaved, and oiled so that the gods might find them tasty? Maybe it's like that.

Look, if I thought my doctor actually noticed, I might be more invested in presenting a pleasing pubic picture. (I doubt it, but I suppose it's possible.) But he couldn't pick my pudendum out of a police lineup even if he had a crooked cop whispering in his ear. He doesn't even pronounce my name correctly, for God's sake. Why should I imagine he cares about my lovely, lovely crotch?

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12/10/2003

Go with the flow

I haven't said much about the follow-up consultation I had after IVF #3 for the very simple reason that it yielded almost no new information.

When Paul opened his notebook at the beginning of the meeting, my doctor's eyes landed on the Cornell letterhead with the fixity of a soaring condor spotting a choice heap of carrion way, way down below. For the rest of the hour, his sights were locked.

So we got to hear a lot about what he imagines they'll tell us at Cornell, his impression of the doctor we'll be seeing, and his opinion on the cost of their program. When I was sufficiently bored beyond politeness by all this, I finally barked, "Thanks. Now. Less about their approach and more about yours, please."

As expected, he warmly embraced my idea that stimulated IUIs might be worth a try. Although I had several unsuccessul IUIs with Clomid, the only way I've ever achieved an intrauterine pregnancy was with gonadotropins and an IUI, so it seems worth a couple of tries. I can't tell if my doctor's enthusiasm is due to a sincere belief that it might work, or relief at the prospect of shifting the burden of conception back onto my body instead of his lab.

He assured me, by the way, that his embryologist was not drunk when she did ICSI on my eggs.

Speaking of my eggs, he took vigorous exception to my characterization of them as garbagey. I contented myself by scowling and muttering under my breath, "They're my eggs and I can call them whatever names I want."

I'm pretty much the epitome of maturity.

He allowed that the zona problem I have is uncommon, and offered no opinion on whether my eggs might perform better in vivo than they do in vitro. This pretty much cemented my conviction that going to Cornell for a second opinion is a good idea — I'd like to talk to someone who's seen a hundred patients like me. I know no one can offer any guarantees, but even an educated guess would be an improvement.

We had a long and confusing conversation about whether I should have another lap before further treatment. I was finally made to understand that my doctor's opinion is that if we're ready to forego future tries with IVF and just concentrate on IUIs and/or natural conception, I should consider a lap. But if we're willing to consider IVF in the future, we should leave the depths of my pelvis unplumbed, for fear of removing functioning ovarian tissue. "...Unless," my doctor concluded, "you really want a lap."

For the girl who has everything, I presume.

So the consultation didn't offer us anything much beyond confirmation of what we already knew, and had already considered trying next. Inasmuch as there is a plan, here's what we've decided, in helpful flowchart form:

flowchart.jpg

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12/13/2003

For the record

Among the photocopied pages from my file is the psychological evaluation the state requires before a couple undergoes IVF. I should note that said evaluation was performed by one of the cadre of skilled and caring mental health professionals getupgrrl captures brilliantly, velveteen and all.

I will treat you to some highlights from the report, with my comments:

[Julie and Paul] cite major ambivalence about having a child as their reason for wanting to significantly limit the number of embryos put back... A year later, I now invite my doctors to reinstall as many embryos as my body can manage to make. I don't really lose sleep these days over the possiblility of high-order multiples.

They report they currently have a nice lifestyle and are not 100 percent convinced that they desire to be parents... I felt it would be dishonest not to acknowledge some reservations about the ways our life would change. We do have a comfortable life (I would never have said "lifestyle"), and children will change that drastically, in some ways for the worse. Funny, though — I never saw this as a sign of ambivalence, as the psychologist clearly did. I saw and see it more as a gesture toward pragmatism, and possibly a sign of our true commitment to having children, even though we know we'll be losing some of the things we love about our life together.

[Julie and Paul]...report a history of anxiety and depression which they seem to be managing quite well together as a team...They both deny low self-esteem...Both deny thoughts of death and suicidal ideation. No evidence of delusions or hallucinations. Oh. Good. Not delusional. Whew. And if you were looking for problems with my self-esteem, it's not low you'd need to worry about.

[Julie and Paul] are a couple coming to seek fertility treatment but with expressed ambivalence about the procedure... I think you'd have to be a nutjob fruitbat wingnut not to feel ambivalence about the procedure. They stick needles into your ovaries, for crying out loud.

They do have concerns about the new responsibilities of having a child. I think their ambivalence will enable them to accept the results of any negative outcome of this treatment. This bit near the end sent me into a rage last night, and I find myself getting sputtery about it again. Can you see why? Wait, I'll rephrase it to make the infuriating part obvious: Because they're not sure they want a child, they will breathe a sigh of relief if this voodoo shit doesn't work. First of all, we are sure we want a child, and recognizing that it won't all be moonlight, roses, and unsoiled fuzzy sleepers doesn't dull that desire. Second, I defy anyone to "accept" the "negative outcome of this treatment" — the many Gothic ways in which things have gone haywire for us this year — with anything but rage, anguish, and a feeling of powerlessness so profound that I can barely make myself pick up the phone to order the next round of drugs. If my "ambivalence" makes this easier, I'd hate to see how people with "delusions or hallucinations" about the romance of parenthood handle it.

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If I can make it there, I'll make it anywhere

We're heading to New York this morning for a couple of days of psychological hardening before Tuesday morning's consultation at Cornell. I will nurse my feelings of alienation among crowds of happy tourists. I will practice my snarl on blameless strangers. I will hone my anger at the universe as some clueless jackass on the subway refuses to let me off at my stop.

Can you tell I used to live there?

Back late Tuesday night, with an update to come on Wednesday.

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12/18/2003

Confusing the issue

You know, doctors can be a slick lot, especially reproductive endocrinologists.  They have to be, I guess, if they're going to manage to convince you to hand over considerable sums in exchange for absolutely no guarantee.  Usually it annoys me — the refusal to commit to a position, the mincing of words — but on Tuesday it entertained me.  I loved watching the doctor furrow his brow as he read my chart, and hearing him finally settle on a non-actionable way to ask, "What the hell did they do with you?"

What he said at last was this: "I'm seeing certain things here that confuse me."  (I can just see myself telling anyone who will listen, "You know, they're supposed to be really good at Cornell, but I don't know — this guy just kept saying how confused he was.")

The doctor we spoke to was adamantly opposed to the notion that we should even consider donor eggs at this stage.  Given my age (almost 33) and my FSH (6.7), he said there was no reason to believe my eggs are unsalvageable.  When I asked him about the notations in my chart, which indicate that many of my eggs seem to have defects beyond the whole weak zona question, he paused to frame his words, then said, "There are so many human factors that influence the IVF process.  I would look to those, rather than to biological ones" to explain the problems I've had so far.

Slick.

And on the whole weak zona question, he communicated the same thing.  His theory was that I'd been triggered too late, that the eggs that ruptured were post-mature, on their way to degrading when the ICSI process finished them off.  They tend to trigger earlier at Cornell, with daily monitoring near the end of the cycle.

I asked him if he'd ever seen a patient with a persistent weak zona — a problem that manifested itself over repeated cycles.  He said they'd had one patient who never made any zona, a problem so rare that "we wrote a journal article about her," but no one with intrinsically flawed zonae.  He repeated his comment about the human factor.

Interesting.

He also said he would recommend decreasing the medication as the cycle progresses, and would opt for a pure FSH protocol rather than combined FSH/LH as I've had in the past.  But he didn't recommend anything arcane, and seemed to think a simple approach could work for us.

And I am beginning to think so, too.

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01/08/2004

how_i_feel_about_my_re.xls

love-chartI want to be fair.

My feelings about my reproductive endocrinologist are occasionally quite negative.  But I swear it isn't personal. 

In fact, on a personal level, I'm crazy about him. He's a lovely man who's shown me great kindness on many occasions, the sort of kindness I needed when everything went haywire: laughing dutifully at my feeble attempts at humor when most people would have been horrified.  He has never shied away from the questions, complaints, and occasional abuse with which I've ambushed him.  Although some of the decisions that have been made about my treatment have turned out very badly, I can't doubt the purity of his motives or the goodness of his intentions.

Based on a careful study of my journal entries (and recollection of a very few bizarre and smoking-hot dreams), I've concluded that the spikes of annoyance I've experienced over the last few months are really nothing personal.  I've found that the intensity of my feelings correlates directly with the success of a given phase of treatment.

Thanks to the magic of Microsoft, I have prepared a chart that proves this, including several important milestones over the last two years.  I feel it's quite persuasive.

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01/16/2004

Day 7: "Ah, my arch-nemesis. We meet again."

I have decided that the doctor who did today's ultrasound is my sworn bosom enemy.

I'd already taken against her for her dippy behavior when we learned my last pregnancy was failing. And I'd been exasperated when, before IVF #3, she couldn't figure out how to work one of those newfangled, high-tech blood pressure cuffs. (Special hint, doctor: It's called Velcro.)

But today she just pissed me off more.

First she didn't even try to show me the ultrasound screen as she scanned me. "I'd like to see, too, if we can angle the monitor," I asked, knees akimbo. "Sorry," she said, "but if we angle it, I can't see." Of course, every other doctor in the practice — and I assume the ASRM — has figured out where to stand to offer the patient a look without compromising the doctor's view. Maybe it's unreasonable of me to want to see what the doctor is basing her decisions on. Maybe it's presumptuous of me to want to see my own engorged ovaries.

But that's not what really sent me stratospheric. That came later, when I asked a question and she looked at me vaguely, asking, "Have you done IVF before?"

The IVF coordinator and I were both surprised into silence by this question. I finally mustered an annoyed snicker in answer. "Um, yes."

Now, okay, I realize this is not, alas, a Juliecentric universe. While I do have some nominal control over the tides and the changing of seasons, the rest of the world does somehow manage to turn without my express consent. But come on. "Have you ever done IVF before?"

My clinic does no more than 150 cycles a year. Three of them last year were mine, and each of them went haywire in a different and unusual way. For one of them, she did the retrieval. On another, she presided with unseemly cheer over a very disturbing ultrasound. And then there was that very tense conversation about my egg quality after IVF #3 — she got defensive, I got mad, and we both went away feeling misunderstood.

Either I'm really unmemorable, or she's a total goddamn space case.

It doesn't feel good to know that a doctor who's empowered to make decisions about my treatment doesn't know who I am or why I'm there. I'd expect that in a larger practice, might even prefer it at this point — the personal touch has proven so far to be a bad, bad touch. ("Julie, show the nice police lady where the scary people touched you.") For added expertise, it would be a worthwhile tradeoff. But if I'm not getting state-of-the-art care at the moment, at the very least I expect the doctors to act like I matter.

So, without further ado, I declare a blood feud.

The scan and bloodwork looked fine. My follicles are growing apace and it looks like we may trigger Sunday night. Next appointment: Sunday morning, 8:30. If they're running late this time I swear I will commit mayhem.

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07/02/2004

Note to Paul: Warm the speculum.

I have spent some time considering the question of selecting an obstetrician — more time than the situation strictly warrants, given how few choices I truly have. Here are my options:

  • OB/GYN practice affiliated with local hospital. I have something of a history with this practice, since it was they who initially referred me for fertility treatment. They have performed upon me a grand total of two Pap smears, one excruciatingly painful IUI, and one excruciatingly painfuller HSG.

    My doctor of record at this practice is, well, a prick. My last encounter with him was before this last cycle, when I needed some cervical cultures done. He asked a few questions about my treatment thus far; apparently my answers annoyed him because he finally sighed dismissively, rolled his eyes, and said, "You know what? I'm just going to shut up and do the swabs." Do, thought I, bracing myself for the onslaught.

    I object to being treated by him. There are other doctors in the practice and a whole mess of midwives, so I probably shouldn't rule out the entire practice, but since my every encounter with the office staff has been, oh, infuriating, I am not inclined to give them further consideration. They have lost my test results, then failed to send them to other doctors when asked, then refused to give them to me without an immense amount of static. ("No, in fact, the doctor does not have to give his consent for me to have them. They are my property, so go eat a bag of dicks and get me my records.")

    I have, uh, problems with this practice.

    Unfortunately, they seem to be the only game in town. The hospital itself, with which they are affiliated, is approximately ten minutes away from my house. This is an enormous advantage when we consider that I'll be delivering in February in New England. So I mastered my revulsion and called for an appointment.

    They can see me in three weeks. "I wish you'd called earlier," the receptionist said in a regretful but censorious tone as I politely (no, really) marveled about the wait. "I couldn't," I told her calmly (I swear). "I had to make sure another baby hadn't died on me before being released by my RE, you callous whore." (Okay, I exaggerate, but only a little.)

  • OB/GYN practice affiliated with hospital 40 miles away. This practice is the home of a doctor who comes highly recommended and who is, I have been given to believe, downright promiscuous with the ultrasound wand. The distance is a concern. Although I am sure Paul is perfectly capable of driving safely at 3 AM in the middle of a blizzard when the road is sheathed in black ice and I am keening hideously next to him —

    Hm.

    However, given the unsatisfying exchange with the local practice, I called for an appointment anyway. "How about tomorrow?" the receptionist asked brightly. "That'll be great," I said happily (no, really).

  • Prenatal care and homebirth presided over by Paul. "Maybe you could hurry up and go to med school," I suggested. "No need," he answered enthusiastically. "For prenatal care, how's this? Take your vitamin and put down the vodka bottle." He paused. "And how hard could amnio really be?"

I've been dreading the start of obstetrical care. I am not ready to ask many of the questions that a patient customarily asks — delivery policies, C-section rate, position on inducing labor, et cetera — because I'm still not convinced I'll get that far. It feels like daring the universe, a prideful challenge it won't be able to resist.

Nevertheless, I'll go. I'll pee in a cup, I'll allow myself to be weighed, and, if I'm lucky, I'll see a heartbeat. For all his good intentions, Paul has not yet been able to engineer a homemade ultrasound machine that satisfies my exacting requirements, so I'll have to make do with a board-certified physician.

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07/05/2004

We'll just see about that.

Last week I met the midwives at the practice 40 miles away. They are a lovely bunch, kind and warm, supportive and reassuring.

I don't think they know what hit them.

Every time one of them would say something like, "You're going to have a baby!" I would feel an irresistible urge (which I did not, therefore, resist) to say something hideously pessimistic in response, like, "We'll just see about that."

"And then in February..." one would start, and I would add, "...If we get that far..."

"By then your baby will be..." one said. "...Not dead, I hope," I finished.

(Okay, I only thought that last one.)

There's no reason to believe that my pregnancy is currently at risk. There's no reason at the moment to think it will be anything but routine. But by the time I left, the nice ladies were tight-lipped and rattled-looking. I think my lousy attitude convinced them that I'm so impossibly broken that I was about to miscarry on the floor right in front of them. I think one of them even called pre-emptively for a bucket and a mop.

On the one hand, I feel awful, alarming them when they were so kind to me. On the other hand, since my obvious mental disturbance convinced them to order an ultrasound earlier than usual, the end may justify the means. Score one for the power of negative thinking.

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12/23/2004

A supposedly fun thing I'll never do again

My future fertility was decided by committee two days after Charlie was born, by people I didn't know.

On Monday morning, when I was finally allowed out of bed, I combed my unwashed hair, put on the single pair of filthy socks I possessed, and made sure my ass wasn't showing through the peekaboo slits in my hospital gown. Then I shuffled slowly down to the NICU to see Charlie, anxiously shadowed by my mother, who stood at the ready to break my fall if I decided that the 100-yard walk was too far.

You know, it almost was. When we walked in, the nurses surrounded me in a protective swarm and ushered me to a chair. "We're just doing rounds," one of them said. "We're about to talk about Charlie." I sat hunched uncomfortably over my incision and listened.

The doctor who was speaking looks sort of like an elf — the cartoon Keebler kind, not the ethereal Lord of the Rings kind. He's short and pink, baby-faced with silvery hair, and I'd find him reasonably pleasant if he were offering me cookies baked to a golden brown inside the cozy recesses of a hollow tree. But, no, he is instead a somber elf of doom: just the morning before he'd sat in my hospital room saying gloomy things like, "Well, we don't have a crystal ball..."

Now he was going over Charlie's case, using a lot of acronyms I didn't understand at the time, summarizing for the benefit of two physicians' assistants, three nurses, two other doctors, and a gorgeous young medical student. He conducted rounds like a fey tiny Socrates, starting sentences but demanding that others finish them. He covered the urgency of Charlie's birth by holding his ball-point pen aloft — "And he had to come out right away because Mom's platelets were...?" — and dropping it onto the floor with a noisy clatter, then turning expectantly to the student. She pursed her pretty mouth like a guppy, her lips making impotent nibbling motions, unable to come up with the right words.

Don't let her touch my baby, I prayed.  I know full well what guppies do to their young.

The doctor sketched out my medical history in some detail. Four IVFs, two prior losses, complete placenta previa, gestational diabetes, HELLP syndrome. He looked expectantly at the group as he finished: "And would it be a good idea for Mom to get pregnant again?"

I looked, too. And seven heads shook solemnly side to side. (The student was too busy gumming her tasty, tasty plankton to offer an opinion.)

I had already come to that conclusion myself, during my bouts of teary wakefulness the night Charlie was born. It had all been terribly hard. So hard to get pregnant, so hard to stay pregnant, so hard to face what lay ahead with Charlie in the NICU. And not only hard, but dangerous. And not worth the future risk.

  • Gestational diabetes. This is a complication a lot of women experience, and for most of them and their babies it's little more than an inconvenience. But it left Charlie's lungs unusually immature, making his first few weeks painful and frightening for him and for us and perhaps leaving him especially vulnerable in the future to respiratory problems. The recurrence rate of gestational diabetes is around 65%.
  • Placenta previa. Placenta previa isn't a common condition to begin with (.3-.5% of all pregnancies). It's even more unusual for it to be complete and to persist to term. It is not especially likely to recur (4-8%), but the risk increases with increasing age (check), parity (check), and previous C-section (check). If it were to recur, I would be looking at a 50-60% risk of pre-term delivery. And a pre-term delivery coupled with gestational diabetes puts us where we are now — or, more troubling, where we were almost a month ago.
  • HELLP syndrome/preeclampsia. Studies vary on how likely HELLP syndrome — which I had, which is more immediately dangerous than garden-variety preeclampsia — is to recur. Estimates range from around 5% to 27%. There is agreement, however, that women who've had HELLP are at increased risk (40-50%) for complications in future pregnancies, including preeclampsia, pre-term delivery, IUGR, placental disorders, and perinatal death. Even without HELLP, though, in my case the recurrence rate of plain old preeclampsia is about 40%. (It would be about 60% if I'd developed preeclampsia before 28 weeks. The earlier in pregnancy it occurs, the greater the chance it'll happen again.) And a frequent necessity in cases of severe preeclampsia? (Imagine the med student chewing kelp, and an incredulous silence descending as we wait in vain for her to answer.) Preterm delivery.

Now don't get me wrong. I am not sorry; I don't regret anything that's happened because it's brought us Charlie. After the fact, he is worth what we've endured. And I'd believe that of any other child Paul and I managed to conceive. But "Has it all been worth it?" is a very different question from "Knowing the risks, could I jeopardize my own health and the health of a baby I'd have come to love by the time it was endangered?"

I realize that I'm not likely to pull off a hat trick again, with so many hair-raising complications jam-packed into one measly pregnancy. I know I'm not likely to have any of the above again except for diabetes. But I also know I wasn't likely to get them to begin with. And that there are a thousand other complications I haven't even Googled. And that I could only get pregnant through expensive, heroic effort. Could it possibly be worth the risk?

I am making gaping fish faces, chewing on the only answer that makes sense to me.

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08/23/2005

Loaded for bear

Today I'm going to see my OB/GYN for the first time since before Charlie's birth. I am not sure how to handle this meeting, since my feelings about her are deeply ambivalent. I could use some advice. How should I greet her?

  1. A warm smile, a firm handshake, and the willingness to let near-death experiences bygones be bygones;
  2. A busy but sullen silence, which will make her stare at me and ask, "What?...What?...Christ, what is your problem?" (I will of course answer, "Well, if you don't know, I'm certainly not going to tell you!" Then I'll flounce around the examination room slamming cabinet doors and rattling stirrups angrily until she throws up her hands and announces that she's going to sleep in the other room.)
  3. A sharp and dangerous bear trap cleverly concealed where only an OB/GYN dares to go
And if your vote is for option 3, do you think I should call ahead to make sure her nurse has a tourniquet handy?

I liked this doctor very much during my pregnancy. I found her competent and kind, matter-of-fact enough to reassure me that my complications were manageable, and attentive enough to make me believe they were being managed. But after the fact, I'm uneasy about the care I received.

An example. I'm embarrassed to admit it, since I take unseemly pride in being a well-informed consumer of expensive medical services, but I didn't know until after everything went haywire in November — known hereafter as The Incident — that the standard of care calls for a urine dipstick test at every late-pregnancy prenatal visit to check for protein secretion. I remember giving a urine sample once at my first visit so they could verify that I was actually pregnant, and not, I assume, just hallucinating those four early scans before being released from my RE's care. But beyond that, I don't remember ever peeing in a cup. I could have, I guess, but I don't remember it. And I am certain beyond doubt that I didn't at 28 weeks, my last appointment before...The Incident.

That's, well, that's kind of bad, right?

And I'm still unhappy about what happened on That Fateful Day — you know, the day of...The Incident. I was initially happy to learn she was the doctor on call that weekend, because she was familiar with my history and would, I felt, understand and share my concern. And at first, it seemed that she did. When I contacted her about the awful abdominal pain I was having, she told me she couldn't prescribe anything over the phone, but that I should get my blood pressure checked and go to the hospital if it was 145/90 or higher, good advice we immediately took. Paul drove me to the nearest grocery store, I wedged my vomiting bulk into the little booth, slipped my arm into the cuff, and away we went. 140/90 — close enough, I figured, and tried to notify her that we were going to the hospital, leaving a message to that effect. But That Fateful Day was to be a long and upsetting series of missed connections. The local OB never managed to get in touch with her before Charlie was delivered almost 10 hours later. I could perhaps forgive that, since I'm sure she was busy with more important things on...a...um, Saturday...night. What I am still having difficulty forgiving is that despite the messages the local OB left, despite the messages I left, she didn't call to check on me again until the following Monday. Not two-days-later Monday; the Monday after that.

I'm leaning toward bear trap myself.

I've set up this appointment for a few reasons. First, I need a Pap test and some form of contraception. (Stop laughing — I know I'm infertile, but it happens.) Aside from the possibility that I might spontaneously conceive — a possibility as remote as Pluto, which is to say far away but still visible with the Hubble space telescope — I want never to bleed again. Despite what some say about endometriosis receding after pregnancy, my periods are as crippling as ever and I would like to eradicate them entirely. Hello, continuous birth control pills.

Second, I want to get a referral to a maternal/fetal medicine specialist so I can get an opinion on just how foolhardy it would be for me to conceive again. (See above, "Stop laughing." See also "future IVF cycle," "wish, death" and "pipe, crack.") I know what Dr. Google says, and I know what the Keebler elves say, but I would like to speak with a specialist who has my medical history in mind, rather than relying on generalities.

Third, I need to know exactly what happened on That Fateful Day. Were there signals we should have noticed, harbingers of The Incident that we (and by "we" I mean "my OB," but I like to seem like a team player) ignored at our (and by "our" I mean "my") peril? Did my blood pressure, always low, steadily rise during my pregnancy as I seem to recall? How much weight did I gain? Did I really not ever pee in a cup?

Because that, well, that would be bad, right?

I don't, of course, trust this doctor any longer, though I suppose she's competent enough to reach up on in there with a speculum and an oversized Q-Tip. ("Oh, so that's where I left my bear trap! You have no idea how long I've been looking for that!") This isn't going to be a dramatic confrontation of any kind, mostly because I excel at those only after the fact in my fond imaginings, but also because The Incident is safely confined to the past and not a situation I will find myself in again (under her care during late pregnancy). I just need to know what happened, which she should be able to tell me based on her records and those of the OB who presided on That Fateful Day, and I need to know what's next.

Oh, and I need to know about the tourniquet.

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But I did like the comment about the Yoda action figure.

You know, maybe I'm a little bit touchy, but comments like these:

I can't believe that you're going there without a lawyer, and with the intent to undress.
...are starting to bother me. As well meaning as I know they are, they seem to carry the uncomfortable implication that I'm...you know, kind of dim. Foolish not to adopt an adversarial stance. Incapable of making good decisions about my own medical care.

Those things could be true, I suppose. But when you comment, I'd ask you to remember that I'm making choices based on a full understanding of the situation, which you, despite my efforts to invite you into the stirrups with me, simply can't have. That I'm an adult in full possession of my faculties and a fair amount of medical information. That I'm navigating an extremely difficult situation as best I can.

For the record, I have no intention of suing my OB. Nor do I have any intention of letting her go all Dead Ringers on my ass (although, come on, admit it, you think so, too: Jeremy Irons plus lithotomy position equals fantasy gold).

I didn't go there seeking satisfaction from her. Somehow I seem to have given that impression, though I thought I'd made it clear that I simply wanted a recap, a review of what we saw during my pregnancy, a step-by-step explanation of what happened in Connecticut. I need to know, not so I can ascribe blame or write a strongly-worded letter or sue the glittering toe rings off my well-pedicured OB, but simply so I'll know.

I don't believe my prenatal care was bungled. In looking at my records, I saw that I was mistaken about my blood pressure; while I had a couple of readings that were higher than others, there was neither a pattern of a rise nor any single reading that was cause for alarm. In fact, my blood pressure was, as it usually is, on the low side. My weight gain was normal, with no suspicious jumps. And although my OB allowed that they should have taken a urine sample on my last visit at 28 weeks — "and I don't know why it wasn't — I'll talk to [the colleague who saw me on that visit]" — in this practice they don't test for protein until 28 weeks and beyond. (Apparently the usefulness of a dipstick test for proteinuria has been called into question, especially in the absence of hypertension. Could the standard of care be changing?)

At any rate, with normal blood pressure at 28 weeks, I can't argue that I was writhing on death's doorstep much before The Incident. The scary thing about HELLP is how quickly it can set in, without any warning at all. Although it would be tidier if my doctor could point righteously to my chart saying, "See? See?!" I can't assume a dipstick at 28 weeks, almost two weeks before delivery, would have shown any proteinuria to speak of.

If anyone were to blame for all this — and I don't think anyone truly is, nor did I ever — I'd have to blame myself. When I first felt stomach pain a few days before That Fateful Day, I called my OB and made an appointment, but when the pain receded I cancelled it. If anyone was negligent — and I don't think anyone truly was — it was I, in not being willing to be inconvenienced for the good of my own health.

In summary, although I would not choose this OB to manage a complicated pregnancy in the future, I feel all right about the care I received.

The exception, of course, is her delay in contacting me after Charlie's birth. I spoke to her about that and received an apology of sorts, an acknowledgement that she should have been in touch. Yes, she should have, and a mournful nod on my part communicated everything I wanted to say on the matter.

Where I did seek satisfaction was in a review of my records from the hospital in Connecticut. I'd requested that my entire chart be sent in anticipation of this visit. Unfortunately, the records appeared to be woefully incomplete — without the lab results on my bloodwork, there was no way for her to explain just how sick I was. And that's what I wanted most.

08:09 PM in Notes from astride the stirrups, The doctor is IN | Permalink | Comments (63) | TrackBack

11/01/2005

Kiss of the Spider Woman

The only thing the title has to do with this entry is that the maternal/fetal medicine specialist we consulted was wearing a pilled black acrylic sweater festooned with silvery Lurex spider webs and giant sequined spiders.

It just got more gothic from there.

I've been putting off writing about our so-called preconception consultation for one simple reason: I'm not at all sure yet how I feel about it. But many of you have asked, so I'll just lay it out here, rapid fire, without too much commentary and with, alas, little finesse.

Let me start with a short primer on HELLP syndrome, so that the particulars of my case will make more sense.

No, no, wait, let me start by telling you that to our consultation I wore my lucky shoes — you know, the ones that reduced my feet to seeping stumps, but nevertheless carried me ably through one of the best weekends I've had in years.

Now, about HELLP syndrome. I've always heard HELLP described as a variant of pre-eclampsia, or a severe version of pre-eclampsia, or even impossible to have without pre-eclampsia. But this doctor characterized the diseases as two ends of the same spectrum, with the classic symptoms of pre-eclampsia (high blood pressure, proteinuria, edema) occupying one end and the classic symptoms of HELLP (hemolysis, elevated liver enzymes, and low platelet count) on the other. Some HELLP patients display symptoms of pre-eclampsia as well; some do not.

At our consultation I learned I had not, at least not at the time I arrived at the hospital. My blood pressure was merely borderline; there was no protein in my urine; and I was having no headaches or visual disturbances. Even my initial bloodwork wasn't especially alarming. Although my liver enzymes were slightly elevated, my creatinine levels (which indicate kidney function) were normal and my platelets had not yet begun to decrease. Oh, sure, I had plenty of what diagonisticians dryly call "upper-right quadrant epigastric pain" but which I call "HOLY JESUS CHRIST I JUST DRANK A SNIFTER OF LAVA," but the important point is that when I arrived at the hospital, I wasn't yet that sick.

Later in the day, though, repeat bloodwork showed that my liver enzymes had risen sharply while my platelets had dropped dramatically. It was then that I went into surgery, with an unambiguous diagnosis of HELLP. "They did everything right," the specialist said approvingly about the hospital team in Connecticut. With blood pressure that stayed resolutely within acceptable limits, and kidneys that showed no sign of distress, it had been prudent to wait for that repeat bloodwork. And with the first sign of my liver kicking into overdrive while my platelets plummeted, it was imperative that we deliver. They did everything right. I had believed so, because, well, you kind of have to when a doctor tells you your baby needs to come so early. But it helped me to hear it was true.

Then, a surprise. For the first time, we saw the pathology report from my placenta. We were shocked to learn that it had an infarct — simply speaking, an area of dead tissue resulting from compromised blood flow. While it's normal for there to be some infarction in an aging placenta, it's never normal in one delivered prematurely. Such infarcts are often associated with placental abruption, intrauterine growth restriction (IUGR), and fetal death.

So it had been clear from my condition that Charlie needed to be delivered; my body obviously couldn't sustain the pregnancy. What we hadn't known was that there was another reason he needed to come out: if he'd stayed inside, the best-case scenario is that he would have become less healthy as his blood supply diminished. "He wasn't small when he was born," the specialist told us, "but he was on his way to being." I now find myself in the very strange position of being glad he was born so early, before anything worse could happen.

We discussed what kind of prenatal care would be warranted in a future pregnancy. Basically, the doctor seemed to be saying they'd advise me to acquire a comfortable refrigerator box and build myself a tidy little shantytown in the office's parking lot so that I might be available for close and frequent monitoring, including tests of fetal biometrics and uterine bloodflow. She would also prescribe baby aspirin, quoting studies that found not only a lower incidence of gestational hypertensive disorders in patients who took it, but birth weights that were higher by an average of 200 grams. (In preemie terms, a gain of 200 grams is enormous.)

Then she talked a bit about abnormal placentation, which was obviously at play this time around (complete placenta previa). She wondered aloud — and it was no more definite than that — about my other pregnancies (an ectopic and a miscarriage). Why, she wondered, did two of of my three pregnancies take hold incorrectly? And why did the third, which was a properly placed intrauterine pregnancy, not thrive? Was there something about my uterus that was inhospitable? Since that is mostly unknowable, she seemed more concerned than I was — though still not greatly — that placenta previa might in fact recur.

Almost as an afterthought, we all agreed with a great deal of jollity that we didn't even need to discuss my risk of a recurrence of gestational diabetes. As complications go, and especially as complications I've experienced go, that's a minor concern, and a manageable one at that.

And then we were suddenly in the thick of it.

Thanks to the vast medical library Google has kindly made available to me because I'm so excellently cool, I had read that the recurrence rate for HELLP is a matter much disputed, with any number necessarily being confounded by the fact that many, many women who've had HELLP never attempt a subsequent pregnancy. Nevertheless, some sources put the rate of recurrence at 4%; others put it as high as 27%. With the caveat that we don't know yet whether I have any interesting underlying conditions, for which ten vials of my blood are currently being tested, this doctor quoted my risk at 50%.

Wait, wait, it gets better.

With a lot of disclaimers — "I'm being as conservative and pessimistic as I can on this one" — she estimated our risk of having another severely premature baby — "at 32 weeks or before" — at 50%.

"But," she hastened to add, "your chances of a good outcome are very, very high," especially if the bloodwork reveals any condition that's correctable with medication. In fact, she concluded, in language that is interesting in its ambiguity, "I would absolutely not advise you not to try again."

So what do you make of that?

One last thing. I must point out that when Paul and I left the appointment, we were rather more upbeat than not. It wasn't because the future was suddenly looking rosy, or because we finally had all the information we needed to make a choice we could live with. It had more to do with feeling we were in good hands, that I'd be cared for vigilantly if we chose to try again, that a pregnancy could theoretically be managed in such a way as to limit the danger to a baby and to me. And that we still, after all, have options.

No, wait, I lied. That's not the last thing. This is: I spent a large part of my morning investigating an unpleasant funk wafting through the back hallway where we hang our coats and leave our shoes. The source of the funk turned out to be an ectopic — get it? — deposit of cat urine, which was left, I presume, when the litter box was blockaded by a baby gate left inadvertently closed. And do you know where the cats had done the deed?

Why, right on my lucky shoes.

So what do you make of that?

11:23 AM in The doctor is IN | Permalink | Comments (75) | TrackBack

12/02/2005

Prediabooties

GlucoseThe last time I saw a doctor for anything non-vagina-related was more than five years ago. I could argue that even that visit had pelvic origins; my primary care doctor was certain that the burning gastric pain I frequently experienced was the result of my monthly menstrual abuse of ibuprofen. She refused point-blank to remove my gallbladder, prescribed a cocktail of Maalox and novocaine, and sent me off to make do with two chump-ass extra-strength Tylenol.

From this, I concluded that she was obviously a dangerous quack and resolved never to darken her doorstep again. And in the succeeding five years, I never felt I needed to. I am either very healthy, very stoic, or very stupid.

I had a battery of bloodwork run when we consulted the maternal/fetal medicine specialist, which uncovered Factor V Leiden. In reviewing those results, my garden variety OB/GYN — the least specialized of my worldwide cadre of coochie doctors — noticed that I'd never had a followup glucose tolerance test postpartum.

You know where this is going, right? Right? C'mon, this is me.

Three more days of carb loading. Ten more ounces of syrupy orange swill. Two more hours of rolling my eyes, looking at my watch, and staring pointedly at the large-bellied woman sitting across from me knitting booties. (I swear to God she was knitting booties. Hey. Lady. Yeah. You're pregnant. We get it.) And one more call from my gynecologist saying I'd flunked.

My fasting level was fine, but my final number was high — 140 is top end of normal, and I skidded in at a jaw-clenching, teeth-chattering, Jesus-gay-but-that-stuff-is-sweet 151.

That's not high enough to qualify as full-blown diabetes, but it's high enough to reveal that I have what's called impaired glucose tolerance, colloquially called prediabetes. It's not a troublesome condition in and of itself, but rather a big flashing neon warning sign that I'm much more likely to develop Type 2 diabetes later in life, and am at elevated risk for heart disease and stroke.

Now, I already knew that based solely on family history. (Parent with diabetes? Check. Parent with heart disease? Check. Parent with hereditary coagulopathy? Check, please.) But now my doctors know it, too, including my primary care doctor.

My OB/GYN is a rotten goddamn tattletale, is what she is.

So now what's going to happen is that my primary care doctor, whom I couldn't pick out of a police lineup if she had "I am the real killer. Please catch me before I kill again" tattooed on her forehead, will tell me I need to exercise more and watch my diet. That's it. To delay or perhaps even prevent the eventual onset of diabetes, the sole prescription is to lose weight — which I don't need to do, thanks to a cool 20 I recently lost — exercise more, and eat plenty of baconless leafy greens and colon-scouring fiber...which we all should be doing, anyway.

Hey! Thanks for the help.

In other words, no surprises. The most disturbing thing about this revelation is the fact that I'll be expected to do a glucose tolerance test every year. That's an awful lot of bootie-knitters to glare at, you know.

08:29 AM in The doctor is IN | Permalink | Comments (51) | TrackBack

01/10/2006

Medical moment

On the advice of my OB/GYN after I failed my more-than-a-year-postpartum glucose tolerance test, I recently visited my primary care doctor for the first time in five years. Three things of note happened at this appointment:

  1. She glanced at my glucose numbers and barked, "That's not high. Why are you here?"

  2. When I told her I'd recently lost weight, she asked whether I intended to lose more. I told her I'd like to drop ten more pounds. "And you think you can do that?" she asked, sounding more skeptical than I strictly cared for. "Sure," I answered heartily. "I've lost twenty pounds already. Why not?" She parried with a question: "When was the last time you were at that weight?" During my twenties, I told her. "That was fifteen years ago," she told me sternly, glancing at my birthdate, and changed the subject.

  3. As we discussed Factor V Leiden, I told her my OB/GYN had directed me to stop taking the pill. "What are you doing for birth control now?" she asked. "Nothing," I told her. She looked incredulous, then said slowly, as if I were a very small, very slow child, "You know you could get pregnant."
So she doesn't think I can lose weight, but she does think I can conceive without assistance. I know: I'll show her. I'll lose ten more pounds and I'll fail to get pregnant, entirely out of spite.
...

I attended a long-awaited consultation with a hematologist about Factor V Leiden. Here is what I learned:
  • On average, the risk of developing a blood clot (or a DVT, deep-vein thrombosis) before age 40 is about 1 in 10,000. Because I'm heterozygous for Factor V Leiden, my current risk is somewhere between 4 and 8 in 10,000.
  • If I use oral contraceptives, my risk is 35 times higher.
  • If I use drugs that stimulate estrogen production, such as in controlled ovarian hyperstimulation, my risk is 100 times higher.
  • If I get pregnant, my risk is 7 times higher.
  • These risks are based on my status as having Factor V Leiden alone, without taking into account my family history of DVTs.
  • These risks are automatically compounded by increasing age.
Her conclusion: If I'm going to cycle again — a big if — I should do it now.
...

While lying on my chaise longue languidly eating bonbons and dangling a marabou-trimmed mule from one impeccably pedicured toe, I noticed that the most recent CDC stats are out. These numbers are for 2003, when I did three cycles at my local clinic, so I was eager to see how everyone else I saw dejectedly slumped in the waiting room did that year.

According to the clinic's reporting, which I have no reason to doubt, 52 fresh non-donor cycles were started for women in my age group. How many of those cycles ended with live births? 48%.

To contextualize that number, I'll point out that for the same year in the same age bracket, Cornell, widely regarded as one of the country's best clinics, came in with a 46.5% live birth rate. The nationwide live birth rate is a dismal 37%.

In summary, that year my local clinic kicked embryonic ass. But I know personally and intimately of three cycles that did not result in live births. So let's crunch the numbers. Say I'd gotten and stayed pregnant on my first cycle:

If, out of 50 cycles (52 actual - 2 of mine that failed), there had been 26 live births (25 actual + 1 of mine that hypothetically might have occurred), my local clinic's live birth rate for 2003 would have been 52%.

Say I'd gotten and stayed pregnant on my second cycle: the live birth rate would have been almost 51%.

Say I'd gotten and stayed pregnant on my third. 50%.

Or, heck, say I hadn't cycled at all. 49 cycles, 26 births. 51%.

So...hmm, carry the three, divide by pi...yes. By doing three unsuccessful cycles, I personally was responsible for knocking three whole percentage points off my local clinic's live birth rate.

Jesus, no wonder they suggested I consider donor eggs.

10:51 AM in The doctor is IN | Permalink | Comments (43) | TrackBack

02/06/2006

Nobody does it better

In the comments on my last post, Erin asked, "Will an IVF clinic do another cycle for someone who has a history of HELLP?"

If I were feeling cynical, I'd answer, "Oh ho ho ho, my friend, you have much to learn about the fertility business."  Then I'd adjust my monocle, chuckle wearily, temple my fingers, and caress an exotic pet.  Next I would give a detailed explanation of my secret evil plan.  Then, apparently having concluded that while a well aimed shot from a large caliber firearm is practically foolproof, it lacks subtlety and panache, I would nonchalantly swagger out of the room while my burly henchmen strapped Erin to some whizbang high-tech spy-killin' machine.  Under no circumstances would I actually stick around to make sure she was good and dead.  And by and by, my sinister plan would be foiled, my empire of darkness would crumble, and naked lady silhouettes would gambol across the screen behind the closing credits.

But my house is clean, I'm down another pound, and Charlie's off at day care, so I'm feeling positively sunny.  This one, I'll play straight.  Erin, you may live.

If I know this, reproductive endocrinologists certainly do: infertile women who conceive after treatment have a higher rate of complications than the general population.  There are any number of contributing factors at play.  We're older, for one thing.  We have a much higher rate of multiple pregnancies, and therefore of complications stemming from same.  Many of us have suffered various insults to the cervix and uterus through treatment or recurrent losses.  Certain conditions such as ectopic pregnancy and bleeding are more common after IVF.  And, oh, yeah, let's not forget we're infertile, a condition that carries with it all sorts of plausible reasons to expect a bumpy ride. 

So any reproductive endocrinologist knows that the pregnancies he or she helps bring into being could be risky, more so when a patient's previous pregnancies have been complicated.  And yet they do it anyway.  Why?

I don't know.  My working theory is that they know that even given the worst case statistics, the chance of a good outcome is still greater than the chance of a poor one.  And that they trust their patients to educate themselves and evaluate their own best interests with sufficient care. 

This theory aside, I'm not worried, because I think I'm just too goddamned attractive — in an entirely clinical, impersonal, aboveboard sense, good people of the ethics committee — to be turned away.  By reproductive endocrinological standards, I'm a very good patient.  I comply with any and all instructions.  I maintain impeccable personal hygiene.  I entertain myself during long waits.  I make jokes to dispel the tension; when I do cry, I'm quiet, not sloppy.  When I fail, I'm at least interesting.  And I do get pregnant, which is, from an RE's perspective, the point.  My checks don't bounce and my feet don't smell.  I ask you, who could resist?

I've heard of women being turned away by REs for only a few reasons: age, high FSH, and previous failed cycles, all of which doctors might see as predictors of a poor outcome.  I've never heard of anyone being declined treatment because of previous pregnancy complications.  Have you?

If so, I need to know, and soon.  It will take some doing to divert some of my secret evil budget out of the "diamond collar for venomous lizard" cost center toward "amoral cadre of expert forgers."  Those medical records aren't gonna falsify themselves, you know.

09:33 AM in The doctor is IN | Permalink | Comments (87) | TrackBack

03/06/2006

Question time

Tomorrow is my next consultation with my maternal/fetal medicine doctor.  I haven't spoken with her since I got the diganosis of Factor V Leiden, and I'm eager to revisit our earlier questions in light of the information now at hand.  Please let me know if you think I'm missing anything important.

  1. With treatment, what outcome do you see most frequently for women with Factor V Leiden?

  2. ...women with FVL and a history of HELLP?

  3. ...women with FVL, a history of HELLP, and a prior premature birth?

  4. ...women with FVL, a history of HELLP, a prior premature birth, and infertility?

  5. Biscuit ...women with FVL, a history of HELLP, a prior premature birth, infertility, and a speaking voice that calls to mind nothing so much as a warm, golden slide of honey dripping down the steaming buttered surface of a homemade buttermilk biscuit?

  6. Am I annoying you yet?  Okay, just checking.

  7. Now that we know I have FVL and can make a treatment plan, would you care to revise your assessment of my risk of a premature birth?

  8. How about your assessment of my risk of pre-eclampsia and/or HELLP?  Because, doctor, not to put too fine a point on it, I thought those numbers sucked.

  9. Hey, where are your numbers coming from, anyway?  Choose one:

    1. a thorough review of the current medical literature
    2. the entirety of your long and varied experience
    3. the deepest recesses of your illustrious accredited ass

  10. Are HELLP and pre-eclampsia often associated with FVL?  Does having FVL raise my risk of developing either?

  11. Would losing more weight significantly improve my chance of a good outcome?

  12. Do I need to go on the gestational diabetes diet before pregnancy?

  13. Hahahaha, you're funny.  Seriously, now: do I need to go on the gestational diabetes diet bef...oh, you were serious?

  14. Let's talk previa.  Given that several of the risk factors — previous C-section, IVF, D&Cs, and advanced maternal age — now pertain, how worried should I be?

  15. Great.  "Like lightning striking in the same place twice"?  Thanks a lot for jinxing me, doctor.

  16. What happens if I get a blood clot during pregnancy?  I bet that's no big deal, huh?

  17. What would you say the chances are that I'd be on bed rest for any length of time?

  18. Assuming I got that far, what would my late pregnancy look like in terms of monitoring?

  19. What can that monitoring tell us?  And what might it miss?

  20. With my dazzling array of potential complications in mind, short of, um, dying, either in utero or soon after birth, what are the risks to a fetus?

  21. But none of that will happen, right?

  22. Promise?

  23. Am I creeping you out?

  24. Not even a little?

  25. [Turning upper eyelids inside out.]  Yeah, well, how 'bout now?  [Spooky noises.]  WooooOOOOooo!

11:32 AM in The doctor is IN | Permalink | Comments (79) | TrackBack

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.

11:08 PM in The doctor is IN | Permalink | Comments (107) | TrackBack

04/17/2006

And that was the cycle where you gave birth to a flock of snow white doves, right?

Ten minutes in, I was cackling.  I sounded hysterical, felt that way, too.  "I'm sorry," I apologized.  "This is all just so absurd."

We'd been playing a lively guessing game: my doctor was summarizing my reproductive career without consulting my file, and I was cheerfully correcting him as we went. 

"And then we transferred three," he said, nodding in remembrance. 

"Mmmm, no," I said, enjoying this hugely.

"Really?" he asked, starting to rifle through my file.  "I would swear we..."

That's when I started laughing.  "I've never made three," I said, and cackled.

It is absurd, all of it.  I have an encyclopedic, obsessive knowledge of my own medical history; my doctor had my file open on his lap; and yet we were still playing this ridiculous game of Go Fish.  ("And that was the cycle you got pregnant with that adorable litter of playful but cross-eyed Siamese kittens!"  "Uh, nooooo..."  "Are you sure?  Because I thought...")

Absurd, because despite what you might think, given my three pregnancies, I am terrible at IVF, barely squeaking by each cycle; but there I was, talking protocol at my local clinic.

And also because I am not good at pregnancy.  But here I am again, hoping, ready, asking, "Please, sir, may I have another?"

You can laugh.  It's okay.  It's funny.

I'm laughing — yes, at the absurdity of it all, because about a year ago I was pretty sure it would never come to this.  But also because I'm delighted.  I'm thrilled to know what I want, to have a plan, to be in a position to try.  Still pragmatic, because I'm not, you know, stupid, but also optimistic that there is a chance — just — that we could, if we are extremely lucky, eventually succeed in having another child.

So.  We talked protocol, we talked dates, and we did a cursory physical exam.  ("Oh, how I've missed this," I sighed, as the speculum slid home.)  My doctor deployed his stethoscope, and remarked with some satisfaction that my calm composure must be a front, because my heart was racketing along at about 120 beats per minute.

Can't fool the guy with the scope.  Can't fool myself, either: no matter how I try to caution myself that this cycle might fail, that a pregnancy might fail, that my body might fail in the end, my palms get moist and my heart beats hard and I smile when I think about it. 

I'm excited, and hoping, and laughing.

Okay, cackling.

11:45 AM in Notes from astride the stirrups, The doctor is IN | Permalink | Comments (132) | TrackBack

08/01/2007

Minnesota nice

Caroline Lake Quiner was born in 1839 in Brookfield, Wisconsin on what we may safely assume was a cold day in December.  At age 16, she became a schoolteacher, just as one of her daughters would, and married a neighboring farmer's son when she was 20.  One of seven children herself, she eventually bore five children.  (Presumably there were no fertility problems in that branch of the family.)

One of her children would later make her famous.  Laura Ingalls Wilder, daughter of Caroline and Charles Ingalls, would characterize Ma in her Little House series as cheerful, kind, hard-working and warm.

I couldn't help but think of Caroline as I faced our new doctor across her desk last week.  She was all of those things, heavy on the warm, to the point of making me vaguely uneasy, the sort of person who asks, "Isn't that nice?" and then waits for an answer.  "You've been through so much," she crooned, folding her hands on top of my file, the one I'd neatly organized and ruthlessly abridged so as not to exceed the airline's baggage weight restrictions.  "I'm proud of you."

Now what is the connection?  It is not that the doctor, an attractive and maternal-looking blonde, bore more than a passing resemblance to actress Karen Grassle, who brought Caroline Ingalls to television life.  It is that I detected in our doctor an implacable Midwestern niceness, an almost aggressive pleasantness, so strong and obvious an urge to be accommodating that I felt irredeemably rude for declining the water, tea, and coffee she offered...twice.

I am talking about Minnesota nice.  And although Laura Ingalls Wilder spent only a scant handful of years there, I strongly associate her with Minnesota.  The way Michael Landon told it every Monday night on NBC, her family's stay in Walnut Grove lasted decades.  Of course, the way Michael Landon told it, Walnut Grove was actually located just outside Los Angeles; a teenage Laura wore Cover Girl and probably Love's Baby Soft (and, by the way, hubba hubba, Half-Pint); Charles and Caroline adopted a moppety Shannen Doherty, sadly unaware of the monster she would become; and weird rapist mimes slunk around the prairie attacking anything in a pinafore.  What can I say?  Those were impressionable years.

SpamBut back to Minnesota, Land of 10,000 Lakes, the North Star State, and the Gopher State.  That is where we'll be doing our next cycle.  And because for me, Minnesota stands for only a handful of wildly disparate things — Julia, Spam, Mary Richards, and the Ingalls clan — when faced with the soft voice, almost stubborn kindness, tidy shirtwaist, and frontier can-do-ism of our new doctor, I could only think of Caroline.

Which made the subsequent sonohystogram uncomfortable.  It wasn't just because of the cramping, although, Lordy, the cramping — you'd think someone had just shoved a catheter past my hermetically sealed cervix and filled my uterus with frosty cold saline or something.  What was more uncomfortable was the cognitive dissonance inherent in the procedure.  It was like nothing so much as getting fisted by Ma.

...

I'd prepared a top-line summary for the doctor to help her make sense of my file.  For each cycle, I included the demoralizing facts: kind of suppression, type and amount of gonadotropins, peak E2, and, if the cycle got that far, number of eggs retrieved, fertilization, grade and number of embryos transferred, and eventual outcome (bad, bad, nothing, good, sucked, sucked, suuuuuucked).  Seven cycles' worth, bullet pointed, bold-faced, really fucking grim.

I watched her face as she read it.  Her expression went from puzzlement — "But it looks like you responded just fine on your first cycle.  I don't understand what..." — to a look of kindly condolence by the time she got to the end.  "Well," she said softly, then paused.  Then, "You should feel good.  You've really tried everything.  So good for you."

And then waited for an answer.  Well, hey, yes, I guess: good for us.

...

Here is how nice Minnesotans are, how serious about making sure that everyone is accommodated but no one is uncomfortable: Paul reports that in the, 'ow you say, wankatorium, the porn was concealed in a folder bearing a label that read,


WARNING
Contains sexually explicit material

Next time I'll tell you about the social worker.  I promise there's a payoff.  Meanwhile, will you tell me what's in your clinic's, er, gentlemen's enclave?

10:49 AM in Minnesota nice, The doctor is IN | Permalink | Comments (114) | TrackBack

01/30/2008

Coffee, no sugar, dollop of low-fat milt

Back to the caffeine for just a moment.  What?  Only half a cup?  They always used to like my coffee...

I spent most of yesterday morning crafting a masterly summation of the study I mentioned last week.  Then I belatedly read the link kindly provided in my comments by Sandy.  I found this to be the most piquant part:

The public understandably believed that this new study must, indeed, be important since almost no medical professionals were heard contradicting the news reports.

But, there is a reason why:

Because the study had not yet been published in the medical journal or been made available to medical professionals. Anyone who might critique the study hadn’t seen it. It was released to the media before doctors and medical professionals with paid subscriptions had even had a chance to read it!

Gosh, no wonder so many of you wrote to say you couldn't track down the article.

That post raised enough questions in my mind that I crumpled up my own masterly summation and added it to the compost with the morning's clumpy grounds.  Look, I'm not a scientist.  In fact, I am so not a scientist that I am too embarrassed to ask Paul, who is, whether I drain my iPod's battery faster by listening to it loud.  (I was not too embarrassed to ask him why radio reception is worse when it rains, and that should tell you something right there.)  So you would probably do better to read the study (PDF) yourself, talk to a real live doctor about it, and form your own conclusions.  Because at this point I'm not touching this one with a ten-foot one tablespoon scoop.

I am, however, currently enjoying my customary morning latte, but a single instead of a double.  Make of that what you will.

A tip of the portafilter to Sandy at Junkfood Science; another Sandy who pointed me there; and Jen, Cindy, Jeanette, Maureen, and PRC, who went on a helpful paper chase.

...

Yesterday I had the opportunity to ask a real live doctor myself about caffeine, but I didn't take it.  I was too busy learning how to dose myself with insulin.  ("So you take one of these teeny syringes..."  "Yeah, I think I have this part covered."  "Then you take the alcohol swab..."  "Wait, you take the what, now?")

I knew it was likely that I'd end up on insulin sooner or later, as insulin resistance tends to increase in gestational diabetics as a pregnancy advances.  I did not expect that it would be so soon, but after ten days on the standard diet, my doctor took one look at my postprandial blood glucose numbers and said, "Wow!  You failed these good," then reached for her prescription pad.  I am mildly concerned, because I know from our experience with Charlie that infant RDS, which can be exacerbated by diabetes in pregnancy, is no trivial matter.  But of all my past complications that may recur, this was the most likely, and is happily the most manageable.  So I am perfectly comfortable managing it.

That said, it was not without alarm that I read up on the kind of insulin I've been prescribed, a long-acting variety called NPH.  Now, it used to be that insulin came solely from animal sources — to be precise, cow or pig pancreas.  (What a selfless, noble animal, that medically minded pig.)  But apparently there have since been advances.  Through the use of recombinant DNA, insulin can now be synthesized to be virtually indistinguishable in effect from human insulin.  As I mentioned above, I'm no scientist, so I'm not sure exactly how this is done — genetic engineering, nanobots, or big pharma's secret shame: enormous slave colonies of leaf-cutter ants — but it turns out that the brand I was given is made using Escherichia coli.

Wait, it gets better.  What makes NPH long-acting?  Why, it's "the addition of protamine obtained from the milt or semen of river trout."

Pig juice, E. coli, and fish spunk.  Strange, all of a sudden I'm not so hungry for my mandatory mid-morning snack.

...

Being somewhat securely with child, I have posted my last at REDBOOK's Infertility Diaries.  If you know of a blogger whose story you'd like to read there, why not go on over and throw her name into the ballot box?  Thanks.  I'll buy you a cup of coffee next time I see you.  (And then lunge across the table to knock that steaming cup of certain fetal death out of your trembling hand.  God, what are you, crazy?)

12:12 PM in Jane, you ignorant slut, The doctor is IN | Permalink | Comments (50) | TrackBack

05/06/2008

Open mouth, insert speculum...I mean foot

Luchamask When you get right down to it I do feel a little bit sorry for my doctors.  They've been nice people, all of them, well intentioned and caring, but let any one of them utter a single phrase that is less than exquisitely calibrated and I go all lucha libre on their competent white-coated asses.

But only in my head.  In person, I am almost faultlessly courteous.  (I only add "almost" because I know I've allowed myself the odd impolite guffaw here and there.  It's usually been immediately after I've been asked if I'm aware of the risk of high-order multiples, or prodded for a decision about how to handle any leftover embryos.  I excuse myself this lapse in manners only because I think those doctors have been in on the joke, having seen my ovaries in action.  Uh, in inaction.)

Lovely people, all.  If they have occasionally made a gaffe, it has usually been a mild one, kindly meant and easily forgiven.  (Usually.  I make an exception for the doctor I'd asked for birth control pills, who actually leaned in close and whispered, swear to God, "Just in case, or is there someone whispering in your ear?")  Some of them have even been people I think I'd have liked to be friends with, like the long-ago gynecologist who looked at my piercings, regretfully told me I'd have to remove them for my laparoscopy, and then reminisced wistfully about her college days, when she'd had a mohawk and a lip ring.

Believe me, I recognize my great good luck in this and appreciate it, especially having heard some real lulus from some real bozos.  A friend inside the computer pointed out Radar's "