So, that’s where I’ve been….

15 05 2010

So my worst nightmare became a reality.

I had an attack.

While pregnant.

It started a couple of weeks ago I guess. Really, the second I found out I was pregnant, I started feeling shitty. But that’s pregnancy, right? I figured fatigue and nausea were par for the course, and even though I was getting hit harder than I did with Adelaide, I figured it was because I also have porphyria, and maybe it would just be a little more intense.

But then there was the pain.

I remember feeling a little crampy with Adelaide, and being freaked out by it. But this time, when the cramps turned into exercises in deep breathing, I scoured the internets to assure myself that cramping was perfectly normal in early pregnancy. Some is, of course. But not lots. So I thought, well, maybe it’s a UTI. I’m no stranger to those. And it’s pretty common to get bladder infections in pregnancy. So that must be what it is. Yes. UTI.

I went to a Patient First, and told the doctor that I had AIP, was about 7 weeks pregnant, and was having pelvic pain, but no bleeding, and I needed a urine culture. He promptly replied, “What’s porphyria? How do you spell that?” Great.

Culture came back clear as could be. But he said that the symptoms matched with a UTI, so why not try an antibiotic anyway? The first one he suggested was a big two-red-triangle no-no on the porphie unsafe drug list. So he panicked, and rather than rationally and calmly decide on the next best thing, he threw a bottle of amoxicillin at me.

I never took it.

I downed cranberry pills for the next several days, and convinced myself that the pain was easing up. It wasn’t really, though.

By this past Thursday, queasiness had turned into full-fledged nausea, and even a little vomiting, which I still tried to attribute to being knocked up. I took Adelaide to her homeschool co-op, and couldn’t eat because I was so nauseated, and I gritted my teeth through the morning, still in denial that the pain was bad bad bad. By the time we left school, I was so miserable that I cried the whole drive home.

I emailed my hematologist a couple of times that day. First to say that I was freaking out a little about having such strong pregnancy symptoms that were so perfectly mimicking porph symptoms, to which she replied that she was sure everything was fine, and we’d kick up the glucose infusions if we needed and if worse came to worse she’d suggest some pain meds that were safe during pregnancy.

Then I emailed to tell her that taking any pain meds made me really uncomfortable, and I’d rather get hemetin, since it’s “just” a blood product, and not something with neurological effects. She went along with that.

Then I emailed to tell her I was going to the ER because I give up.

So Thursday night, Eric drove me to the Bon Secours ER facility in Harbour View. The plan was to waltz in, announce that I have porphyria, am pregnant, and in increasingly severe discomfort, and required an immediate glucose drip and another urine culture for a UTI, and that I would NOT be accepting any pain meds.

I don’t know what I was thinking.

I did waltz in and do all of that, and explain to several clueless nurses what AIP is. And then the PA on duty swaggered into the room and said “So, when you were in the ER last fall, they were considering celiac sprue. Have they abandoned that idea?”


“Uh, I have porphyria. I need glucose.”

“Yeah, well there’s really no test for porphyria, so you can’t really know if you have it.”


“Uh, yes, there is. And I have it.”

“No, those tests come back with false negatives and positives all the time, so you can’t pay much attention to them.”


“I’ve tested positive twice, and I have Acute Intermittent Porphyria Type II. I NEED GLUCOSE.”

By the way. As for those tests. I looked up my hospital records from my attack in the fall. The preliminary urine tests they ran look for two things that would point to porph: ALA and PBG levels. A normal ALA range is 0-35, and my level was 157. A normal PBG range is 0-8.8. Mine was 130.  hmmph.

So, this was the first time I’d ER’d it since my diagnosis, and I always figured that in the event I needed emergency care, the docs would be glad that I was so educated and absolute about what I needed. I never guessed I’d have to prove to them all over again that I have the freaking disease.

It was obvious to me that this guy saw “porphyria” on my chart and googled it real quick. He ran his own battery of invasive, offensive tests, but as I continued to bombard him with AIP information and medical lingo, he sort of lost his resolve and finally gave in and admitted that I needed a push of glucose. Three hours after I arrived.

So then shift change happened, and doctor number two came in, and I had to do the same thing all over again (although, he was a little quicker to accept my story.) But by that time, I was in really severe pain, with a kickin headache, and I was really, really trying everything I could to get through it without meds. I had an ice pack strapped to my head and was rocking back and forth, trying to get in a trance. And crying. I cried a lot. I finally asked for some tylenol, which doc told me was perfectly safe during pregnancy (I don’t think I ever took any with Adelaide,) and it helped take the edge off the headache. Just enough to let the excruciating abdominal pain really shine through.

So doc starts trying to convince me to take something stronger. He told me that he used to work as an OBGYN, and that opiates are considered perfectly safe during pregnancy. He told me that, in fact, heroin is an opiate, and that moms who use heroin throughout their pregnancies give birth to perfectly healthy babies.

I had a feeling that his idea of healthy and my idea of healthy are two different things.

But after agonizing over the pros and cons of being in severe pain and distress, versus taking an opiate that medical science claims has no effect on a fetus, (and after thrashing and screaming and sweating and not being able to meditate through the pain anymore,) I gave in and accepted a 10 mg morphine drip.

He also recommended an antibiotic drip, since there was a tiny bit of bacteria in my urine, and he told me that UTIs are really dangerous in pregnancy, so treating them is essential.

After these two drips, the pain calmed down, and the puking began.

I puked all the way home, and all through the night. The urinary retention kicked in, too, so every 10 minutes I was on the toilet, pushing little squirts of pee out while Eric did pee-pee dances for me.

The next morning, I woke up and puked. Eric took Adelaide strawberry picking, which had been planned for a week and she was totally excited about, so I didn’t have the heart to tell her she couldn’t go. They came back with big smiles on their faces, and a huge bucket full of bright red, big, juicy strawberries. And red lips.

Eric tried to get a little water/food into me, but I promptly rejected even the most trivial amounts of anything that went in. I entered the puking-up-bile stage, until I was all empty of that, too, and just dry-heaved the rest of the afternoon.

I went to the hospital for my infusion of hemetin and glucose. Again, deciding to get the hemetin was heart-wrenching. There have been no studies on the effects of it on a pregnancy, and it’s recommended that it be avoided by pregnant women, save for only the most dire of situations.

This was dire alright.

Normally, in an attack, I’d get four doses in four days of the hemetin, but my hematologist was not comfortable with that. She only let me have one, in the hopes it’d give me the boost I needed, and we’d follow-up with lots of glucose.

So I knew it’d take a day or two for the hemetin to make any difference, and I went home to suffer. I told Eric I was absolutely NOT going to take any more pain meds, and that he’d have to just help me through it.

But he and my mom couldn’t deal with watching me writhe. My mom decided to get a hold of Jennifer, who was my palliative care nurse when I was hospitalized last fall. On the phone, she first tried to convince me to head to the ER, where I could receive pain meds under supervision. But I told her about my less-than-impressive experience the night before, and adamantly refused to go back. She understood. So she talked me through my options. She explained that receiving the 10mg drip in the ER of morphine was equivalent to about 30mg orally, so if I took 10mg orally at home, it wouldn’t knock me for such a loop. And we sort of hashed out the risks to my unborn that come along with me being in severe agony and distress and anxiety. That’s almost as bad (if not worse) than a chemical. (In fact, another pregnant mom friend of mine had recently told me of an article she read about a study showing that high levels of anxiety are more detrimental to a fetus than alcohol consumption. So we decided we should start a new trend of drinking up. For the sake of the baby.)

I gave in and took a 10mg of my liquid morphine, and it was the perfect amount to take the edge off the pain, let me rest, and not send me into complete lala land.

Rinse and repeat.

I think I took three or four doses over the next couple of days, and each time, I had to have my arm just about twisted off. Eric had to keep reconvincing me that I was making the right decision.

I’m still not sure about that. But what’s done is done.

I got three infusions of glucose this past week, and I’ll get three more next week. It’s not fun. It’s 500 grams of sugar being pumped into me over the course of 30 minutes. I leave the hospital feeling like I could lift cars, and then crash and burn an hour later. Only to then crave massive quantities of cheesecake and ice cream. Sugar is addicting, did you know?

But the pain is 100% gone. The nausea is mild, and what I’d associate with typical first-trimester gunk. I’m tired as hell, but there are ways to deal with that (like plopping Adelaide in front of the TV so I can nap. Several times a day.) Oh, and in the ER, they did an ultrasound of Babo, who appears perfect with a healthy heartbeat. And single. Thank god.

So I’ll raise my glass of sugar water to getting through that, and may it be the only time during this pregnancy I have to go through it. No more drugs for Babo!




4 responses

16 05 2010
Laurie Smith

Damn! I was so Hoping you would not have to endure this during your pregnancy! Hang on, Sabrina…you are a true hero and a warrior! Thank goodness Babo is fine! I agree with your family. Do what it takes to keep yourself as comfortable and calm as possible. When you are in distress – the liklihood that Babo is as well certainly goes up. Thank goodness your pain is gone! So glad to hear from you again!

16 05 2010

Thanks for the encouraging words. The more people who tell me that I haven’t horribly poisoned my child, the better. I welcome having as many people as possible justify my decision. I’m almost sleeping at night again. But not quite. I need more approval, people! More people telling me I’m not heinous = less anxiety for me = less possibility of an another attack = no more drugging my kid.

17 05 2010

I say if the morphine takes the edge off your pain, go for it! I know how hard it was for you to wean off the morphine after your first big bout of AIP, but somehow this still seems like the best plan — keeping the level of pain down and manageable may lead to a positive cycle of less anxiety and less pain.
I took pain pills after a severe uterine infection put me in bed for three weeks. Finally had the sense to talk to the doctor (after I got up to go to the bathroom and bounced off the wall — I mean bounced!) The doctor encouraged me to cut back on the dosage until I was comfortable but not to wait so long that the pain came back again before the next dose. It took a while to get that right!

15 06 2010

Hi Sabrina, I accidentally bumped into your blog because of my recent curiosity in porphyria, a result of a book I’m reading at the momemt, Paula by Isabel Allende.

Anyway I just wanted to write to you to say that my heart goes out to you and your family, even though we’re complete strangers.

Tears came to my eyes as I read through your posts.

Stay strong, thats all I can say… A hug from Portugal.

Best wishes.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: