Monthly Archives: January 2012

no news update

I’m getting questions from enough people that I realized today I really should do an update on what’s going on. I also recently corresponded with two old friends about what we call “subsequent pregnancies,” and have been thinking I ought to say more here. Yet in some ways it feels like I’ve played out the script on this topic, four and a half years ago.

I’m often amused, or bemused, when people point out that I’ve done my “research” into preterm labor, preterm birth, and my options for medical care. I guess I’m enough of a PhD to think I haven’t done a bit of research, but have rather benefited from the real research of doctors and scientists. What’ve I’ve done is read their studies, their conclusions. Countless of them. As I told someone recently, I rarely just straight “google” something. I either google scholar or medplus it. This time around, as I’ll explain a bit later, I’m going to talk with people about “birth plan” options, but it’s not research, it’s talking, thinking, commiserating. I’m a snob, I guess. I’m fortunate enough to always be connected to a university with great academic search resources. The other day, for example, I read about 5 studies about cerclage length, after my most recent exam showed my cervix is a bit above 4cm. I’ve already read studies, but new ones popped up in my search. The prognosis is still pretty good. That wasn’t research though, that was comfort, a confidence builder, and information building.

Ultimately, both times Josh and I decided to “try again” since Natan’s death, I’ve felt the most accurate description of what I’ve done would be a metaphor: it feels something like when I used to jump off the high dive as a kid (only with obviously greater risk). I didn’t really like the feeling of falling, or of hitting the water at great speed, but the rush when it was over, and I realized I was alive and unhurt, was worth it all. So I’d just climb up the stairs, close my eyes, and try not to think about any of the bad things that could happen. They were unlikely anyway. The truth is, Natan’s dying was awful, painful, terrifying, heartbreaking. The whole thing, from the moment I thought something was going wrong to the moment we buried him and the days and weeks after. It’s the worst thing I’ve experienced yet. But it is statistically unlikely to ever happen to us again. Odds were always in favor of our having a living child. I knew the best thing to do was to just make the jump, Of course, once we’d done it, the fears I’d been stamping down came rushing back. But it’s too late. I’m in the breath holding stage right now, trying not to panic. Yet it will seep in, does seep in.

An update on my low platelets. The doctor has done all the tests he possibly can. It’s not a virus, and likely not a cancer. It’s not caused by my pregnancy, but it is probably aggravated by it. My spleen may be enlarged, or the ultrasound image might be distorted because of my uterus. If my spleen is enlarged, something is probably happening with my liver. But we can’t test any further while I’m pregnant because that would require a CT scan, a liver biopsy, and a bone marrow biopsy. And so we wait. Meanwhile, I will have CBC’s every two weeks and a prednisone shot if it drops too low at any point. I will definitely have a prednisone shot before delivery, and will probably be induced after 39 weeks because we need to know that my platelet levels are safe when I deliver (or I’ll be at risk for bleeding out). An epidural is not safe if my platelets are low. That means being knocked out if I need a C-section. C-section is also less safe in a woman with low platelets than a vaginal birth, because the risk for bleeding out is higher. Sigh. I don’t care much about my birth experience so long as the baby’s alive, but I’d prefer to be conscious and fully healthy. Chances are, I will be.

 

 

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easier than I thought

Some news today. My liver’s fine, but my spleen is enlarged. So, I have the opposite of what the tech said, but she’s not a doctor and an enlarged uterus affects shape in there. The spleen is only mildly enlarged. I don’t yet have any answers about what this means, because I haven’t talked to the doctors about it. Yet at least one piece of the puzzle is clearer for me.

My sister was right to go through my OB practice. I was due today for my progesterone shot. My doctor’s nurse (the one I referred to a few posts ago, whose sister-in-law and brother lost their baby) asked how I was doing. I was just honest, and told her I’m anxious because we still don’t have answers about my platelets, and that I’d gotten an ultrasound yesterday of my abdomen. Immediately, even before I finished the story, she said, “Let’s go look at these ultrasound results–but don’t tell anyone I let you see them.” She, by the way, is also the nurse I yelled at over my headache a few weeks ago, but since it turned out that that was legitimately bad, and since we talked about her brother and his wife, she’s been a great ally. So my situation’s not entirely dire. I feel so relieved that I can be myself in front of her, and not be judged unfairly. She printed out the U/S results and said she’d make sure Dr. H looks at them this afternoon, as well as the CBC results from my tests at the other doctor’s office. If Dr. H thinks this is something that can’t wait until next Wednesday, she’ll call me. So, progress, and I’m confident that if I don’t hear from them, it’s not something that demands immediate treatment or response.

A few people have written to tell me about their friends who had low platelets in pregnancy. This problem has come to light because I have an attentive OB practice, but it actually is separate from, although probably aggravated by, my pregnancy. So it’s a bit more complicated. I’ve been preparing myself to hear the worst, not because I’m a pessimist but because I haven’t really found it helpful to assume the best. I’d rather be pleasantly surprised than shocked.

Even before my shot, I found it easier today to not think about my anxieties than I would have imagined when I was beside myself yesterday. That’s the benefit of letting myself get REALLY UPSET about something rather than trying to relax and not think about it. I sometimes think I must seem hysterical to those who don’t know me well (and sometimes to those who do). Yet it really does help for me to give in briefly to my worst fears, and any anger that comes with them. Losing it for a few minutes is such a release. Letting myself acknowledge that I feel hopelessness at times helps me get past it and keep going. I think I should write the Anti-Secret and or finally should at least read Ehrenreich’s Bright-Sided.

It’s obvious that my immune system is compromised. I was really pissed off to find out that signs were apparent, if minor, in 2009. Because I have been struggling with energy and have been getting colds and other illnesses more often than used to be normal for me. I had a much harder time getting over the dog bite than I should have considering I was on antibiotics. This could all be related. After the doctors in Ohio effectively dismissed me, I just accepted that it’s all situational, or emotional, that I’ve just been struggling to adjust to my new surroundings, to the stress of my first year teaching (in OH) or to the unease I have living here. I thought it was because I’d quit working out, so I started going to boot camp workouts (which actually helped a lot, but then the dog, then the pregnancy.) And my issues haven’t been constant, just enough to really irritate me and make things tough. Speaking of which, I’m really tired right now. Too tired to proofread this post. Off to rest for a few before I pick up the room in anticipation of Samuel’s arrival home.

sometimes I just really want to go home

I really have no reason to blame the region where I live for what’s going on. After all, the doctors have caught that there’s something going on, and are trying to figure out what it is. I trust them to figure it out, and to recommend treatment. Today’s doctor’s appointment, to the hematologist’s office, revealed a slightly higher platelet count–81,000. That’s some 60,000 below the minimum threshold for normal. So not good, but not as worrisome as it would be if it were below 50,000, or imminently dangerous, if it were blow 20,000. 

More disturbing? The bloodwork from 2009, when I lived in Ohio, showed low platelets. So this is a long term condition, predating my pregnancy. What’s funny about that is NO ONE SAID ANYTHING back then. During the fall of 2009, I had a few episodes where I was horribly, miserably sick with pain and digestive issues. I even went to the ER in the middle of the night. Diagnosis: nothing. Maybe an ovarian cyst. No mention of anything looking off in a test at all. Although a radiology tech told me she saw a strange “shadow” near my gall bladder but then the doctors said that was nothing. I was really miserable a lot for a month or so, but then it was gone. Although I have needed more sleep, have felt more tired, and have had more of a tendency to feel down and lethargic since around then than would have been my old normal, I didn’t have any more episodes of massive pain. Of course, we’ve had major life changes since then, including moving to the South, where I often feel like an unwelcome foreigner. So who knows what’s what here. I could be writing a cause backward, or these things could be related.

So why the title of this post? I also had an ultrasound today of my abdomen. I don’t know the results yet, but the tech mentioned my liver was “not really bad.” I asked what she meant, and she said, “It’s not the biggest I’ve seen; it’s about 17.” I asked what that meant, and then she hedged a bit saying, “it’s hard to tell because your uterus could be affecting its shape,” and then nothing. This was at the radiology center, before I went into the doctor’s office and had the better CBC. I had my blood drawn, and then we were sitting in the hallway. The doctor came along and told me my CBC looked better but that he had my records from 2009. He said we’d talk about it next week when we have all the records gathered. I tried to express how nervous I was about the U/S results, and he said he’d have to get the radiologist report first. We were in the hall, with other people, other patients milling by. So here’s where I miss being up north, and especially in Michigan.

This is going to sound crazy to northern readers and probably to southern ones, and maybe even to other transplants. But one of my biggest issues here has been my inability to communicate. Seriously. Obviously we all speak English–I’m not talking about that. But there are ways of doing things down here that confuse me, make me unsure of how to navigate situations. Things turn abrasive, unpleasant far more quickly than I can understand. Supposedly Southerners are more polite, but I’ve had more bewildering responses to simple comments just in the 1.5 years I’ve lived here than I have had in my entire life. That estimate includes my two years in Israel and my visit to Russia. I’ve majorly pissed people off just by asking for whip cream on my hot chocolate after I ordered it that way and it came without. I don’t like going into my bank anymore because of a confrontation with an employee there when I simply asked her why their website isn’t compatible anymore with Quicken. I swear I did these things politely-I’ve had no history of unpleasant confrontations before and I’m used to being considered very smiley and friendly. It seems the local culture doesn’t take well to “complaints,” even when actually they’re just what I’d see as inquiries. 

So, I’m not happy about waiting until next Wednesday to hear the results of the ultrasound given the tech’s comments. Really not happy. I’ve spent all day trying not to continually google terms about large livers and low platelets, although I have done a little. They’re not happy searches. Anyone would be nervous of course. But combining this with a high risk pregnancy, where I’m sedentary and alone with my thoughts so much anyway? Combining this with trying to teaching next week, when I’m already anxious to not be doing that, and extremely nervous about how I’ll manage 7 and a half hours of lecturing by sitting in a chair? I really feel like it’s too much for me to bear. I feel really close to my personal edge. Which I know is presumptuous given that there are cancer patients every day in the hematologist’s waiting room, some of whom look really, really sick. As well as all the other typically really sick Mississippians milling about. 

If I were back in Michigan, or Boston, or IL, I feel like I’d know what to do. I’d call up the doctor’s receptionist and honestly plead my case. But when I call up someone here, the most likely result is that I’ll have to repeat myself at least twice because they never understand me. And then, they’ll likely think I’m demanding something special and criticizing some policy, rather than pleading fear and vulnerability. And finally, appointments for anything are tougher to come by here, so they really might not have anything. 

Not to mention the biggest kicker, despite being faculty at a major research university, our insurance is abysmal, and every time I whine myself into an extra appointment, we’re set back a few hundred dollars. So I have to wonder, is my fear and paralysis worth that, when we’re only just now earning a little more than we spend? Would it make any difference in the long run in terms of treatment and response? Seriously, my pregnancy already cost $2000 last year just to get out of the first trimester, after insurance paid its paltry amount (and don’t ask what the premiums are) and that was with only one panic-induced appointment. The clock started over on January 1st. Have I mentioned before I think insurance companies are criminals?

Update: I’m going to take my sister’s suggestion and call the OB nurse tomorrow, tell her how anxious I am, and see if that’ll get a phone call from my ob/gyn to speed up the appointment. She agreed (and has reason to know these things) that I’ll likely not get very far calling a receptionist who doesn’t really know my history.

some better news

I had a better day. My cervix measured over 5cm. So, chances are my bladder does hang low and affect the measurement when it’s full (which it almost always seems to be but this time I’d just emptied it). That makes me much relieved. The baby also had full appendages, a great spine, and all other elements in order.

Phew. Huge, huge relief.

No new news in terms of me and my platelets. But they were low in the first CBC, 115,000, just not low enough to worry about at that point. So it’s been downward continually since Sept. So we’ll see.

trying to wade through

When Josh and I decided to try again, I really thought this time would be easier. The safeguards, my cerclage and progesterone, worked so well last time that I got to 40 weeks with Samuel. Granted, I spent most of those 9 months on my couch (futon, it was back then in our teeny one bedroom apartment), which I could do because I was writing my dissertation and I didn’t have a 4 year old. This time around, I knew it would be different because of Samuel and because I have a job. But I thought, my cervix stayed closed for a full month after the cerclage was removed, I’ll manage. I only teach two days a week, so I can work from my position on the couch from home 3 days a week. Plus, by the end, I really believed it was the progesterone that made the difference.

I should know better than to be so sure of something.

I am really worried. This time, I’m not only worried about the baby’s health and survival, but my own. This problem doesn’t seem to have first appeared during pregnancy. The first indication something was off was after the dog bite, when I came down with the more serious infection. Blood tests also showed my platelets were down to 125,000, from the normal of 150-400,000. A short term drop can happen after a trauma in which you lose a lot of blood, so when I began to feel better, my GP didn’t pursue it. And I didn’t think to mention it to my OB. I just realized in typing this, that no one’s mentioned what my platelets were at when I had my first blood work done during this pregnancy. I think I’ll ask today. The possibilities are so wide, there’s still no point in commenting upon them specifically, but since even the mildest problem isn’t minor, these next few weeks are going to be really, really hard.

I also began this pregnancy with a concern not entirely based upon reason. After the dog bite, I was on doxycycline and another antibiotic (and had a really lovely full blown allergic reaction to it). Doxycycline is NOT recommended for pregnant women, but well, given my dates, it really didn’t seem possible that I’d be pregnant. I was, though, about 24 hours pregnant at the time. Apparently, my entirely reliable cycle did something really wonky in September. Ironically, when the dog bite first happened and my doctor gave me the doxy and told me not to get pregnant, I was seriously disappointed because I thought September was the perfect month to try–a June due date would be ideal. Ha.

Warning: DO NOT tell me this is an indication that this pregnancy was meant to be. I find that really, really annoying and presumptuous. I also don’t like to be told people “know” things will go well or that God has a plan for something/someone. All this means is that the doctor and I should not have assumed anything.

Anyway, doxycycline. It’s probably fine. Most of the warnings say to avoid it later in pregnancy because it affects teeth development (the baby’s teeth will be yellow). One study showed a slight statistical chance that bone development could be affected, leaving the baby with arms that end below the elbows. So I’m damn anxious to see this child’s hands at the anatomical scan (which is today, by the way) at 2:30. I should not worry about it, but I have been.

And for the final concern, at my last cervical ultrasound last week, my cervix measured 3.45cm. I don’t like that number. I was at over 4cm until well over 30 weeks with Samuel. My doctor reassured me that she’s not worried, and told me that my bladder, has dropped, which is very normal in a 3rd pregnancy to get well into the second trimester, and especially when Samuel was so big. She’s the voice of evidence-based medicine. I’m the voice of, well someone has to be the unlucky one, and I’m waiting for the more reliable personal evidence: what length is my cervix today? If it’s not changing, as it shouldn’t be at this stage, I’ll accept that my bladder dropping just means it’s shorter in the first place, not opening.

So….this is not my most creative post. It’s more of a ranting list of worries.

That said, I have one good thing to report. I am thinking my placenta is not on the front of my uterus again as it was with Samuel, because I can actually feel some kicking at times. Last time, I rarely felt anything, which didn’t help much at all with my anxiety.

Not a good day

I got some fairly scary news today. I’ve been too anxious to really talk about what’s been going on. On the day I had my spinal headache, my doctor was disturbed by my low platelets–in the 80,000s. I was referred to a hematologist, and had to wait until today for an appointment. Today my numbers were 68,000. That’s really not good. “Normal” ranges from 150,000 to 400,000. They took, literally, about 10 more vials of blood from me today, and I’ll have an ultrasound next week of my abdomen and repeat blood work. So far, we have no answers, but the best  we can hope for is Idiopathic thrombocytopenic purpura. That’s a “diagnosis of exclusion,” and probably means no other problems. It would, however, be a problem for delivery, because it puts me at risk for bleeding, so I’ll have to go on prednisone to get my platelets up. “HELLP” was mentioned, but nothing else specifically because the possibilities are so endless. We really have no answers of any kind, just an indication that something’s really rather wrong.

I noticed the doctor asked me three times when I’m due. I wish I could be an optimist and figure this will work out, but if I’m honest with myself, I’m not confident. 

As if the middle second trimester of a pregnancy doesn’t suck enough for me. I wish I had more of that courage someone once accused me of.

One last thing–I didn’t publish this post really widely on Facebook. I’m feeling a bit reticent until I know more.

January 3rd, 2012–5 years

Eleven years ago right now I was living in Israel on a kibbutz. I met a marvelous woman, who I’ll call Rose, who had been one of the founding members. She was well educated, an artist who had spent most of her life as a teacher in the extraordinary kibbutz education system she had also helped to found. Even as the kibbutz system was collapsing, she and her equally amazing husband remained committed socialists, and were heartbroken over the privatization of their home. I spent a lot of time with them listening to their stories about the founding (which was before the birth of the state), about the early years of Israeli statehood, and about how they had forged relationships and friendships with Israeli Arabs, Muslims, and Christians in the area.

 Rose told me one story that I appreciated, but didn’t ask much about, because it didn’t really touch me then. I wish now that I had asked more. She had been active in the Israeli feminist movement. She had formed a coalition with a number of Orthodox women to get rid of advertising posters plastered on the bus stops and kiosks around Israel which they considered pornographic and dehumanizing. She, as a woman and an artist, was disgusted by images of scantily clad or unclad women’s body parts being used to sell beverages, cigarettes, and other random products in the 1970s and 80s. The coalition was (temporarily) successful in setting public standards and rules for advertising. She was a leftist, Atheist, independent and outspoken woman. I thought of her as uncompromising, and yet she managed to work with and form a successful coalition with women who were very much her opposite.

I am thinking about Rose right now in part because today marks 5 years since Natan’s death. I’ve never really known what to do with the day (I don’t like to read/hear “birthday” greetings, and I’ve never wanted to make a cake). Every year since then, we were somehow bogged down with a major work/school event: the annual job-search conference or the start of a semester. Soon we’ll be on the road, driving back from seeing family. I’d pretty much like for the day to just fly by without notice. 

But since I don’t pretend it didn’t happen, since our lives are more settled and I’m thinking more and more about how January 3, 2007 changed me, I decided to expend some lines thinking more about what I wish I could do with the experience. I wish I could figure out how to bridge the divides between people over women’s health and reproduction. I wish I could talk to Rose about ideas on how to do that with the talents that I do have.

On my last post, a few friends chimed in with their thoughts about why friends and neighbors of the couple I described might have felt justified verbally attacking them. Angela and Rachel pointed to the tactics of anti-abortion groups, and questions of selective or insufficient understandings of the science of reproduction and the real options women have when they face complications in pregnancy. Courtney described misogyny, and the many ways a woman, in the eyes of others, loses primacy of self and bodily integrity when she becomes or decides to try to become pregnant. I certainly think the points have large grains of truth in them. But I don’t think they show us a way out. It’s also important to me that the pro-choice movement isn’t exactly golden, either. (I can say more about that later; it would take a lot of space.)

Those of us who lost babies to prematurity get wrapped up in this discussion for so many reasons. Ironically, the very advances in the treatment of preterm birth and preterm labor that I celebrate create some of the problems for those of us whose children didn’t survive. From the cutsie Cabbage Patch “preemie” dolls of the 1980s to the twenty-plus weekers featured in People Magazine to the birth of Josie Duggar, to the multitude of stories of women being told they’re in PTL or their cervixes have shortened and yet they make it term anyway, popular culture promotes the happy endings and the other ones vanish from polite conversation.

Certainly the news stories mention statistics. Yet somehow unless you’re listening to a doctor quote them about your own child’s chances, it’s not easy to comprehend fully what it means that a baby born between 20 and 22 weeks has at best a 10% chance of survival. From there the numbers don’t reach 50% until 25 weeks, and 90% at 28 weeks. That means someone has to be on the wrong side of all those statistics. Someone has to be in the 90%, the 50%, and the 10%, not to mention the multitude of health problems and disabilities that plague most survivors before 32 weeks.

The people who end up unlucky can’t always be easily distinguished from the lucky ones in terms of their behavior before the birth, although they may very well differ from one another in terms of where they live and what they can afford, and thus they might have very different levels of access to healthcare and medical expertise. It is inevitable that many pregnancies will end without a living child.

Yet I would like to think that we could at least try to do everything humanly possible to improve those statistics, that we could find a better way to take care of pregnant women and children no matter who they are, where they live, and what conditions they’re living in. I’d like to think the better way wouldn’t demonize women and might also involve useful conversations about sex in culture. I’d especially like to think we could take a broader view of women’s reproductive health that wouldn’t be so easily polarized around the issue of elective abortion. I’d like to think we could see our current fights over abortion as the symptom of a few problems—first, that women and children (really, people in general) are not valued highly by American culture and society; and second, that we are too quick to look for ways to blame people for their own suffering. Feel free to add others.

I’d like to think that those of us who feel passionately about women’s reproductive health and children should all share, I think we could all share, a few common goals: making sure that many many more children born in this country are wanted, that many many more children born in this country survive and are cared for, and that many many more mothers survive and thrive after their pregnancies. I think our current abortion debate and our debates over the economy (part of the so-called culture wars) only succeed in making it impossible for us to move forward as much as really ought to be possible given our scientific and medical knowledge. We’re not doing a good enough job at giving girls, women, and children sufficiently fair access to high quality obstetric and gynelogical care no matter who they are and where they live in this country. Why wouldn’t we want to do that? I’m not saying give them all cars and mansions—just access to knowledge about their bodies, and to skilled doctors and nurses and well equipped hospitals. I want to imagine a coalition of women from multiple faiths, backgrounds and political leanings, talking about pregnancy and women’s healthcare without falling into the trenches of the abortion debates, or culture wars.  When it comes to the real options we have for saving women and children, those of us who really care really ought to be on the same side.