High-Risk Pregnancy and Feeeelings

Well, it's back. Intrahepatic Cholestasis of Pregnancy, ICP. (In the past I've generally called it Cholestasis, which seems clearer than using an abbreviation, but... ICP is shorter to type.) As of a few weeks ago, the night of July 28th.

No, I haven't been back to the hospital yet. This is from my induction with Gracie. It just seemed... fitting.

Sorry, this is going to be long. Very. This should probably be split into four, but it all goes together so I'm going to leave it together, sorrynotsorry. I have a lot of feelings, and it seems like a lot has happened in the last few weeks. And some backstory is necessary. The "tl;dr:" version? High-risk pregnancy MESSES WITH YOUR HEAD. 'Tis a roller coaster.


This novel may appear at first to be all about me me MEEE, but be aware that even if you never ever come across another woman with ICP, the feelings are probably applicable to any high-risk pregnancy, even though the details change. Even applicable to some processing of chronic conditions in general, for that matter.

So here you go! Reading all about meee will TOTALLY help! \o/

Highlights

ICP is a relatively rare liver/bile condition, triggered by pregnancy hormones, that causes risk of stillbirth; a higher risk later in the pregnancy. But when treated the risk goes back down to the same as that of a typical, healthy pregnancy. On the other hand, part of the treatment is induction, generally at about 37 weeks, so it involves the milder risks of a not fully "cooked" baby. Among other things. It's complicated. But highlights, I'm doing highlights! (Ooh, here's one helpful infographic.)

There is no cure, other than giving birth. The treatment is a liver medication, plus induction between 36 and 37 weeks. And watching. Lots of watching to make sure the bile acid levels don't shoot up and the baby is still healthy. Unfortunately, unlike with most high-risk pregnancies, the danger is very sudden. The baby could be fine and kicking a lot in the morning and die in the afternoon. No pressure. But again, when treated, that particular risk goes back down to that of a normal pregnancy. Lower, even. The medication is very safe, and is often increased as needed. Some severe cases warrant earlier induction.

(From here on out I'm going to call the med Urso, even though that's one of the brand names and I'm on a generic. It's just easier.)

The ITCHING.

Let me stop and explain about the itching. There are a number of possible symptoms, but often the only one that's noticed is itching. So much itching. All over, worse in the hands and feet (normally), worse at night. No rash, nothing except the marks you cause by scratching yourself.

And the part I sometimes forget to mention when summarizing, that it's really bad itching -- nothing in my life compares except chicken pox, and that was so long ago it's hard to say for sure exactly how the two compare. I remember sitting on my hands to try to keep myself from scratching, so that seems about right.

Scratching doesn't help, not long-term or medium-term. But it does give at least a second or two of relief at the place scratched, which not scratching doesn't. It's a problem, late at night, when you kind of need to stop scratching yourself for just a moment if you want to fall asleep.

Otherwise there aren't really downsides to scratching, so whatever you do, please don't tell an ICP mom to stop scratching. With most itches, scratching spreads toxins under the skin and makes it worse. With ICP, the toxin is already all through our blood, activating our nerve endings. And it's impossible to ignore the itch. I've tried, it doesn't work. So.

I've had ICP before. Last time I only had to deal with it for a couple weeks, and I was so worried about my baby, all other negatives were drowned out. That does not mean the itch isn't a big negative, just that I was that worried. (I'll explain about that later, when I get into the backstory.)

Thank God that isn't the case this time.

As I said to one friend: Palms, soles, and fingertips ought not to itch. It's rude.

With the abnormally hot and dry summer we've been having in Oregon this year, we've had some ants scouting out our house very aggressively for water and food.

I realized one day, when my palms were particularly itchy, that it kind of feels like you have hundreds of ants crawling inside the skin of your hands and biting you inside. Not red ants or fire ants or anything (in my case, other ICP sufferers might disagree), just the little black ants common in much of the United States. And generally not the pain of a bite on an extremely sensitive area, like the web of skin at the base of your fingers, or on your eyeball (yes, it's a story I've heard), but still, Ants. All. Over. Inside. Your. Skin.

Several times I've had to check my ankle before I scratched, to see if there was an ant there or not. I legitimately couldn't tell. There never was.

Also, cooking the other day, I decided it sometimes feels like there's jalapeño inside your skin.

Or think of the itchiest clothing you've ever worn, and it's on you, and you can't get it off. THE ITCHY CLOTHES ARE YOUR SKIN AND YOUR NERVE ENDINGS. (Add actual tight and itchy clothing to this mix, and nopenopenope. Maternity belly bands on pants and shorts, I'm sorry, you used to be so comfortable, but I think now we need to break up. It's not you, it's me. Well, maybe it is you, too. But it's more me? Yes, I'm seeing someone else. Someone called stretchy exercise shorts.)

Or, you know, think chicken pox. Baaad chicken pox, but without the marks, until you scratch yourself bloody.

Whatever. So itchy.

One day I wrote in my journal, "My irritation at the itchiness comes and goes. Sometimes I can concentrate on something else and it hardly bothers me at all, other times I feel like it's just completely driving me insane. One moment at a time, I guess. I'm trying to get back into my regular routine and structure a bit more, but it's hard sometimes. Especially with the heat, yesterday's high was around 102 or 103, and today's supposed to be... 99, I think?"

Now, I've actually had a lot of good days, without a ton of itching! Way more good days than I expected when it started, or even when I wrote the above in my journal! Yay!

But keep in mind all my above description, and multiply it, for many ICP moms. Compared to the stories and descriptions I've read and pictures I've seen, my itching has been quite mild. NOT mild compared to normal life or practically any other itch or uncomplicated pregnancy (counting PUPPP as a complication, never had that and don't know how they compare), but mild compared to other ICP cases.

So that's what it is. What it means to me... well, some background is in order.

I got it with my first pregnancy, with my Gracie girl, but it didn't show up until pretty late, until I was almost at 37 weeks already. I had no idea why I was suddenly itching so much or if I should be concerned, so of course I googled. I know doctors generally aren't super happy with the Internet and the googling of symptoms, but I'm glad I did. Because there just really aren't that many things that cause an itch all over in pregnancy, without a rash. Cholestasis was the only thing that really fit, and fit it did. Reading about it helped me know how to tell my HMO -- that it was relevant, for example, that the itching was worse on my hands and feet.

There are warnings on the ICP Care site about how some doctors will discount it because it's rare, and how carefully to bring it up, and so on, but I didn't have to deal with that. They took it very seriously right away. At least.

But there are a couple tests. The most reliable one takes longer, as much as a week to run, because apparently there are only a couple labs in the country that do it.

Somehow, my HMO managed, in spite of ordering that test, to either lose it or not actually run it. And once I left the hospital (as I'd been told to do) it came out of their system. And yet, though I called for status updates several times, the mistake wasn't caught until it had been a week. Now I was at almost 38 weeks.

And so, so, so mad. Rage.

The less reliable test had come back negative, but I was still itching. They were taking it seriously enough to give me Urso and order regular non-stress tests to monitor my baby, but the risk of stillbirth was still there, and growing daily. I'm sure they were worried they could be sued if they ordered an induction without a positive test result to back it up. Never mind my suing if I had a stillbirth because they lost the test...

Anyway. So I went back for another blood draw for the test, and a week later, at almost 39 weeks, just as I left the hospital with my mother-in-law from another non-stress test (they had ultrasounds at those, so she happened to come to this one), I got the message on my voicemail that The Test had come back positive. We turned around and got me checked in and began the long induction process.

Um, all that backstory to say...

Well, to map this out a little more clearly, let's look at the emotional pros and cons of having it again, shall we? Even though it's not like I get to decide.

Pro: I knew I might have Cholestasis again. The odds are anywhere from 60% to 90% of recurrence. On the other hand, they can't tell you whether it will be better or worse than the last time, or when in your pregnancy it will show up compared to before. Apparently there's no way to know. And I was sort of wondering, since I hadn't even known it existed the first time until I was suddenly super itchy and did some looking, if it was possible for it to start out more gradually and then get worse?

In other words, every time I got a little itch I wondered if This Was It. At least at first. I was getting better about it. But still, given that I'd probably have it, I wasn't sure if it wouldn't be better to just go ahead and get it over with and know instead of waiting and wondering for a long time. At my last appointment before the itch started I even asked if I could go ahead and be tested at 36 weeks, whether I'd developed symptoms or not, just to ease my mind. And my awesome doctor was like, you're getting blood drawn today anyway, why don't we just test you now? And we can always test you again later if you get itchier.

(And then it was negative but like four days later I became SO ITCHY This Is It, and for some odd reason they didn't want to draw blood from me and check again that soon. Still, I was diagnosed based on my history and symptoms, though there was some miscommunication and I wasn't told that right away. Still I got started on Urso. Yay.)

So... I mean, given that the stillbirth risks aren't any higher when this is properly treated (and people don't go losing important tests), I'm... kind of glad to have it? A little? Con: Yes, the itching is sometimes horrible, I have good days and bad days. Possibly started out worse this time, though has been a little more on and off, maybe more good days, hard to say, memories are slippery and subjective. And I have... somewhere around five more weeks of this. Possibly getting worse as my pregnancy hormones go up and up, constantly fighting that with higher dosages of Urso (only as prescribed by my doctor, of course)... O_o

Con: Also I wondered a little what it's like to go into labor on your own, with a live, full-term baby, something I've never experienced. With the odds as they are, it's probably something I'll never experience, even if I have a bunch more kids. Which is kind of weird. Though not as bad as having to get a C-section every single time.

But. Pro: Not only is it a relief to know, instead of wondering when, but sucky as induction might be, it's a suckiness I know. No fear there, really. I know what to expect, I know I can do it. (With the help of wonderful, wonderful drugs.) And hey! This time we can probably even schedule the induction! (Though not a ton in advance.) How awesome is that? And I won't have to experience all the discomfort of pregnancy after 37 weeks, yay!

Just... you know. The discomfort of itching, and abnormal-even-for-late-pregnancy lack of sleep because itching, and of "right upper quadrant" (RUQ) pain (more on that later), and the annoyance of an abnormal amount of preterm contractions (also more on that later). And the extreme pain of induction. But then it's over. Induction can last a long time, but not weeks. So there's that, at least. It would be interesting to get to personally compare induction with a more "natural" birth and confirm whether or not induction is really much worse, but meh.

(And, as I'm beginning to realize not all inductions are created equal, any more than all pregnancies are the same, let me clarify that we're not talking about giving labor a little kick-start here; this is early induction, and means getting things started from a full stop. Unless your body's already working on preterm labor, as it is in many ICP cases. But which didn't seem to help, in mine. On the other hand, though medically necessary, it isn't an emergency where every hour counts, like some inductions, so they try to take it slow. As far as I can tell, from my limited experience of these things. Also to help prevent too much fetal distress, which was certainly a Thing with my first labor, and is apparently one of the things associated with ICP in general. Though who knows if she was in distress because Cholestasis, or simply because cord wrapped around neck.)

ANYWAY. So I'm... kind of relieved, and all, "finally." No condolences needed on that front? But the itching... you can definitely give me condolences for that. Heh. But the Good Drugs seem to be helping for now, both with reducing the itch somewhat, and, maybe a little bit with making me drowsy, which helps with sleeping at night. Yes, when my prescription is increased I have less trouble sleeping for a time, YAAAAAY.

Feelings, Part Two

Er... That was how I felt about it last week, more or less. Hoo boy. Now where to start?

1) More Knowledge

Hmm. Well. Since it isn't such a whirlwind this time, I've been able to do some more reading. Reading the facts and research about it, on the ICP Care site. Reading personal stories, like on this ICP blog I love, which I wish had more posts, except I don't, because I don't want her to have more material and more happening to her. Reading some individual posts, like this one. Interacting with other ICP moms in the ICP Care Facebook group, asking questions, reading questions, getting answers, encouraging and commiserating with each other.

And... yeah, even being treated properly, with the stillbirth risk more or less out of the picture, this thing is such Serious Stuff. And uncomfortable. And serious. And unpredictable.

I really really like this link that expresses many of the frustrations of being an ICP mom. Yep, I can relate. It's not all universal, necessarily, but... yeah. Definitely. With the relating.

Oh hey! The author works with ICP Care, which you may have gathered runs the site that's given me so much of my info about ICP. It's all based on the latest medical research, but is very accessible for new patients hearing about it for the first time. Hello, Hilary! ICP Care is awesome and I'm so grateful! *waves*

2) Other Symptoms

This isn't exactly separate from the above, but deserves its own section, too. I've realized, going through the material, that I've probably had a couple other ICP symptoms without realizing it.

Last time, I thought I just happened to have an "irritable uterus" and then ICP as well. Unlucky. Weird pregnancy, weird birth. Sometimes five-minute long contractions, or longer. Which is always fun in the Braxton Hicks version, and then it gets even MOAR fun when you're really in labor. Ha. Contractions back to back with little pause in between -- not in transition, at the end of a birth, but at only 1cm -- also Fun. Haaaa.

Have I mentioned how very very much I love the epidural?

So, it turns out, according to this Patient Brochure,

"ICP makes our bodies more sensitive to oxytocin, which produces contractions. Spontaneous pre-term delivery (meaning not induced) occurs in 20-40% of cases."

And from the Toxic Mom blog, "Top 10 Misconceptions About ICP,"

"Well, it turns out that bile acids make our uterus more “irritable” – it is more sensitive to the hormone oxytocin, which is what causes contractions."

Oh.

Well that explains some things. Which is cool, because now I'm not weird in one area and then another, weirdness on top of weirdness; no, my body makes sense. Awful sense, but sense. Which is nice.

Then there's the RUQ pain. Going back to the Patient Brochure again,

"Some women experience pain in the area of their livers, but this is frequently mistaken as pain from their babies pushing against their ribs. RUQ pain is most commonly felt under the ribs on the right side, but may also be felt under the tip of the right shoulder blade."

Hahaha, YEEEAAAAHH. Um. So, it didn't help that I first had that RUQ pain in my first pregnancy before I ever started itching or had even heard of ICP. Given that, yes, I first attributed it to her kicking, and then, as it got more extreme, to my many many Braxton Hicks contractions (or whatever you want to call them when you're often having more than eight an hour, but they're completely ineffective) pushing my ribs outward. Especially since Gracie liked to hang out with her feet against those ribs, and then the uterus would especially contract wherever she was. (For those who haven't been pregnant before, or haven't made it that far in a pregnancy, "contraction" makes it sound like everything would get smaller, but think flexing a muscle. Smaller in some ways, but it bunches up and sticks out.)

And sure, if there's already soreness there, it's gonna hurt if a baby kicks it or contractions push on it.

In retrospect, it makes more sense that this pain is, uh, not normal. Maybe mild compared to some other ICP cases, but not normal. With my current pregnancy I started getting some sharp pain against those ribs when Baby could barely even reach them yet, let alone do much damage. I... okay. If you've ever given birth, you know that feeling that you might have had at some point or other in labor, like you'd been impaled, and there was a vertical rod through your uterus? Well, it isn't a constant pain, but sometimes the ribs right there hurt in my front, and then also the ribs in my back at the same place, and what's in between, and it's like there's a sharp horizontal rod piercing my right side. Except moving a little feels less like I'll just be impaling myself further, and there isn't as much Muscle. Tense. Rock. Or the rock is against the area rather than being the area. But sometimes it feels like that when I'm not having a contraction or anything. Especially when sitting in a car.

I'm not sure if that's a good description or makes sense at all. Maybe that's still normal... Uh, non-ICP moms, especially ones who've had a lot of Braxton Hicks, what do you think??

(*goes on with day and drives around wondering if it really is normal* I mean, there are a LOT of contractions pushing there. And the pain in my back is lower than described in the quote above, not right under my shoulder blade. And it's mostly just when I drive in a car. *stabs of pain begin right below the tip of the right shoulder blade* FINE. I'll stop wondering if this is normal, and you stop stabbing me. Deal? *takes the cessation of pain a few moments later, a little bit after getting out of car, as acceptance of deal* Note to self: DO NOT QUESTION IT. Totally not normal from now on. ___ I don't like it when it's angry.)

So... all that to say, it's nice to have One Thing that's weird, and that explains all these symptoms and problems. But it's not nice to have them, and to be practically guaranteed they will stick around in every repeated pregnancy and I'll never get to experience "normal."

3) Events and Up and Down and High Risk

I don't exactly know what to call this section. Obviously. But you know how I said my doctor had diagnosed me with ICP based on my history and symptoms, after I started itching again and called in? And how I hadn't been told?

I was told I'd be tested again at my next appointment, and at first I was fine with that. I figured we'd still have plenty of time before I'd be induced anyway, and I was already on Urso, so whatever. No rush, no biggie.

But then I started reading more, and I found out how much monitoring is normal. I thought I'd just had so many non-stress tests last time because I was diagnosed so late. Nope, standard. And I saw recommendations everywhere to retest every 1-2 weeks when symptomatic, as a negative test result doesn't actually rule out ICP, it's quite possible to start itching before the levels elevate on a test.

So that was a little worrisome, and I messaged my doctor. And got a worrisome info-gathering call from an advice nurse, before she talked with the doctor. With questions like whether or not I'd tried lotions. I hoped she was just covering her bases, but was frustrated at the implications she explicitly voiced, that I might just have a little bit of regular pregnancy itchiness, from dry and growing skin. I tweeted,

I don't want to discuss itch treatment. I want to discuss retesting and, you know. Monitoring my baby to make sure she doesn't die.

— Marcy (@quettandil) August 14, 2015

But she asked, if my doctor did decide to go ahead and retest, would I be able to come in the next day? I said yes, and got a call the next day, and then the clarification that I was already diagnosed, but yes, we could retest. (I'm wondering if the first time she called, the nurse had seen my question in my message but hadn't looked at my chart. But anyway.)

I came in, got blood drawn, talked with my doctor. She apologized for the misunderstanding, we talked some about the plan going forward. I definitely won't be going past 37 weeks. I'm getting non-stress tests every week. We didn't schedule it, but we can keep checking my bile acid levels occasionally (as they don't always correspond to the level of itchiness, and can shoot up suddenly).

Feeling a lot better about that, now. Back to officially very very much liking my doctor. And reminded that, as I said at the very beginning: even when you're receiving awesome care and treatment, high-risk pregnancy MESSES WITH YOUR HEAD.

And then! They got the test results back on Monday, and called me. My liver function levels are elevated now, where they were normal before, so we've increased my Urso dosage. The liver function numbers, as I understand it, don't have as much to do with actual danger to the baby (although they can correlate with the other measurements, and danger), they just show how your body's dealing with it all. When they get really high, you'll probably feel pretty sick. I think.

She asked if I had any questions, and I asked what my total bile acid number was this time. No big deal, just curious. (Because I could look it up on the website later, anyway.)

1-10 μmol/L is normal. Over 10 μmol/L indicates ICP, over 40 μmol/L is considered severe ICP.

On my first test, from four days before I started itching, I was at 9 μmol/L.

My test results came back Monday at 44 μmol/L. Well then.

Just a sec, let me say this out loud to myself: I have a severe case of Cholestasis. Though on the low side of severe. (IIRC, I think I've seen stories of extremely severe cases where their numbers were up in the 600s or something insane like that.) Huh.

(Yes, it does feel like there should be some kind of "moderate" label in between "mild" and "severe" ICP, but for medical and research purposes, they only really need two categories. Severe is riskier than mild, though all should be delivered by 37 weeks, as they're both riskier than a normal pregnancy, otherwise. See misconception #4 in the previous link.)

I've had another appointment and talked with my doctor since then, and we've increased the dosage again, as the earlier increased dosage wasn't helping with the itching yet. I'm curious how this works -- I know the itching doesn't always necessarily correlate with the severity, but starting on Urso did seem to help with the itching initially, so maybe they will consistently correlate, for me? If so, I'm also rather curious what my levels were between the two tests, when I'd started itching but hadn't started taking anything yet! And my increased itching recently is as of after the last test was taken. Meh.

At any rate, sounds like I'll get another blood test next week to see if my levels stabilize.

There are EVEN MOAR feelings that come with having a severe case, now. I don't know if I will stabilize, or if my bile acids will keep rising. Either type of scenario is very possible. Not that that's ever known, but still. When I was asking for the second test and they clarified that I'd already been diagnosed, my doctor said it's rare for a mild case already on Urso to change very quickly, this early. But still, sure, they'd go ahead and do the test now. Well.

This changes my plan of care a little bit, though not a ton for now. More Urso. BPPs (biophysical profiles, a special kind of ultrasound) every week, in addition to the weekly NSTs (non-stress tests) I already had scheduled. Maybe more blood tests. Depending on how those go, maybe even earlier induction.

My preterm contractions never did anything last time, but if they're connected to ICP and my ICP is worse this time, that's definitely something to watch, too.

And whereas I've read the recurrence rate for ICP in subsequent pregnancies is 60-90%, according to the infographic it's simply 90% for severe cases. Oh joy.



Maybe this week, I am not so relieved to just get it over with and know I have ICP again. I guess if I was going to get it again anyway, it's good to have some time to learn about and absorb this stuff. Knowledge is helpful. But bleh. This week, grateful as I am for this baby, for my wonderfully healthy two-year-old, and for awesome health care... I'm grieving an intangible loss. Or I'm attempting to. The loss of low risk in my pregnancy and pretty much any hope, practically speaking, of ever having a low-risk, simple pregnancy.

Yes, before you mention it, I know God can do miracles. But I have a feeling God is going to keep the miracles for the safety of my babies, not for making this easier on me, ya know? I know He's capable of both, but, yeah... Emotional healing, now, that may happen. Especially in regard to my experiences with healthcare professionals. But that doesn't mean easy.

Prayers for this baby would be good. Not just that she'll live, though definitely that, very low risk or not; but for her health. That the bile getting to her wouldn't make her too sick. That her due date is accurate and they won't be accidentally inducing her birth dangerously early. That my bile levels don't go up so high that it looks less risky to induce before 36 weeks than to wait. Wisdom for my doctors, for me to ask the right questions, and for the whole doctor-patient relationship, which I desperately want to continue to be so much better than it was with my doctors in California. (It's looking great! So far, so very good.) That I won't naturally go into preterm labor and she won't pass her meconium in utero, other risks associated with this condition. That even without the full time to cook, she'll be okay. Gracie was in there 39 weeks and was still tiny and had a little bit of initial trouble, but her bilirubin levels went down nicely, she gained weight, and became a very healthy baby, if small. Prayers for her little sister, that she'll be and end up as healthy. She's certainly lively now!

Here's my prayer for myself, and for other Itchy Moms:

O heavenly Father, you give your children sleep for the refreshing of soul and body: Grant me this gift, I pray; keep me in that perfect peace which you have promised to those whose minds are fixed on you; and give me such a sense of your presence, that in the hours of silence I may enjoy the blessed assurance of your love; through Jesus Christ our Lord. Amen.  -The Book of Common Prayer