How to distinguish between superimposed pre-e and severe pre-e?
December 10, 2018 9:37 AM Subscribe
My doctors aren't sure whether my pre-eclampsia presentation should count as "pre-eclampsia with severe features." They're also discounting some symptoms because they don't happen at the exact same time as a high blood pressure. Because of this confusion, I'm struggling to make the right choice about when to push for early delivery.
I am 34 weeks pregnant and was diagnosed a few days ago with pre-eclampsia.
I've had HBP on and off since week 30 or so. I have a complicated medical history, which leads reasonable people to disagree on whether my pre-eclampsia is the "superimposed" type or not. MFM now says if it's determined I have pre-eclampsia with severe features, they'll deliver me that day. They say that the guidelines are not clear for when people with pre-existing HBP qualify as "with severe features." But because high blood pressures (as high as 182/87) are responding to IV medication when needed, they're comfortable waiting a bit longer, as long as I stay in the hospital and am monitored throughout the day.
I don't know if that's the right thing to do or not.
I have had some right upper quadrant pain, sometimes sharp and intense, but it comes and goes, and when they checked immediately after a spell last night, my BP was normal.
I had lightning flashes in my vision the other night, but again, BP was normal. It had been in the 180's earlier that evening, but the lightning flashes happened after IV meds were used to stabilize it.
Today, I have blurred vision RIGHT NOW, but my BP is fine.
All of these things are in the guidelines for diagnosing "pre-eclampsia with severe features," but because my blood pressure isn't high the minute they're happening, the doctors and nurses don't seem to think they're relevant. I don't know if they're right or not. I'm in the hospital for monitoring, and we went back and forth enough yesterday that they agreed that if I really don't trust that it's safe to be pregnant, they'd be willing to move forward with delivery now. But I'm scared to make that call and have something go badly for the baby because of being born earlier than necessary. (I'm also scared not to make that call and have lasting damage from the pre-e, or have a stroke or something).
Does anyone have an experience with this? The diagnostic criteria for pre-eclampsia with severe features does seem to be murky when pre-existing high blood pressures are part of the puzzle. That pre-existing HBP was more than 5 years ago before I lost 130 pounds, so I'm not sure whether it really counts or not. I did not have HBP prior to this pregnancy, nor did I have HBP or pre-e with my first pregnancy 3 years ago. Do symptoms like blurred vision only count as indications of a current high blood pressure, or are they still indicative of a problem even when BPs are stabilized? There's so much going on here, and so much at stake. I'm really struggling with the right way to move forward.
I am 34 weeks pregnant and was diagnosed a few days ago with pre-eclampsia.
I've had HBP on and off since week 30 or so. I have a complicated medical history, which leads reasonable people to disagree on whether my pre-eclampsia is the "superimposed" type or not. MFM now says if it's determined I have pre-eclampsia with severe features, they'll deliver me that day. They say that the guidelines are not clear for when people with pre-existing HBP qualify as "with severe features." But because high blood pressures (as high as 182/87) are responding to IV medication when needed, they're comfortable waiting a bit longer, as long as I stay in the hospital and am monitored throughout the day.
I don't know if that's the right thing to do or not.
I have had some right upper quadrant pain, sometimes sharp and intense, but it comes and goes, and when they checked immediately after a spell last night, my BP was normal.
I had lightning flashes in my vision the other night, but again, BP was normal. It had been in the 180's earlier that evening, but the lightning flashes happened after IV meds were used to stabilize it.
Today, I have blurred vision RIGHT NOW, but my BP is fine.
All of these things are in the guidelines for diagnosing "pre-eclampsia with severe features," but because my blood pressure isn't high the minute they're happening, the doctors and nurses don't seem to think they're relevant. I don't know if they're right or not. I'm in the hospital for monitoring, and we went back and forth enough yesterday that they agreed that if I really don't trust that it's safe to be pregnant, they'd be willing to move forward with delivery now. But I'm scared to make that call and have something go badly for the baby because of being born earlier than necessary. (I'm also scared not to make that call and have lasting damage from the pre-e, or have a stroke or something).
Does anyone have an experience with this? The diagnostic criteria for pre-eclampsia with severe features does seem to be murky when pre-existing high blood pressures are part of the puzzle. That pre-existing HBP was more than 5 years ago before I lost 130 pounds, so I'm not sure whether it really counts or not. I did not have HBP prior to this pregnancy, nor did I have HBP or pre-e with my first pregnancy 3 years ago. Do symptoms like blurred vision only count as indications of a current high blood pressure, or are they still indicative of a problem even when BPs are stabilized? There's so much going on here, and so much at stake. I'm really struggling with the right way to move forward.
Best answer: It seems like your medical team are not 100 % sure either. Would it make sense for them to consult with a more experienced center?
posted by M. at 10:23 AM on December 10, 2018 [1 favorite]
posted by M. at 10:23 AM on December 10, 2018 [1 favorite]
Best answer: I was hospitalized with pre-eclampsia at 33 weeks. I delivered at 34 weeks exactly by emergency C-section when I complained of tracers and blurry vision.
I was 45 when I delivered, history of mild hypertension. Baby was in NCIU for 21 days just to learn how to eat. I did get a steroid shot at 32 weeks to speed up baby lung development. He is currently a healthy 4 yr old refusing to go to preschool.
So...34 weeks is good. They are monitoring the baby, right? A second option is definitely warranted. Trust your instincts. Get a trusted someone at the hospital to help talk to the doctors. Hugs.
posted by Arctostaphylos at 10:54 AM on December 10, 2018 [2 favorites]
I was 45 when I delivered, history of mild hypertension. Baby was in NCIU for 21 days just to learn how to eat. I did get a steroid shot at 32 weeks to speed up baby lung development. He is currently a healthy 4 yr old refusing to go to preschool.
So...34 weeks is good. They are monitoring the baby, right? A second option is definitely warranted. Trust your instincts. Get a trusted someone at the hospital to help talk to the doctors. Hugs.
posted by Arctostaphylos at 10:54 AM on December 10, 2018 [2 favorites]
Best answer: 34 weeks is near-term. If baby's growth is solid I would push for delivery early. Source: Lost a baby to poor decisions; had a subsequent baby at 34 weeks who is a healthy 7 year old (I had steroids at 29 weeks).
posted by warriorqueen at 11:10 AM on December 10, 2018 [9 favorites]
posted by warriorqueen at 11:10 AM on December 10, 2018 [9 favorites]
Best answer: My wife experienced vision issues due to magnisium used to control her blood pressure. Her experience was different she was 38 weeks when diagnosed so they induced as soon as it was confirmed.
She was concerned she had a stroke because of the vision wonkiness (double vision and blurred vision). She was fine and the baby was fine. Soon as they lowered the dose and some of it got out of her system her vision returned to normal.
But 34 weeks is early but not scary early. It is really up to you and your team. Can you get the doctor to explain to you in detail what they are thinking? Ask them questions, let them talk you through their decisions.
No matter what this is not your fault. Don't take blame on yourself for a medical condition outside of your control. You are paying people lots of money to take care of you because this stuff is super complicated. Take gentle care of you.
posted by AlexiaSky at 11:36 AM on December 10, 2018 [1 favorite]
She was concerned she had a stroke because of the vision wonkiness (double vision and blurred vision). She was fine and the baby was fine. Soon as they lowered the dose and some of it got out of her system her vision returned to normal.
But 34 weeks is early but not scary early. It is really up to you and your team. Can you get the doctor to explain to you in detail what they are thinking? Ask them questions, let them talk you through their decisions.
No matter what this is not your fault. Don't take blame on yourself for a medical condition outside of your control. You are paying people lots of money to take care of you because this stuff is super complicated. Take gentle care of you.
posted by AlexiaSky at 11:36 AM on December 10, 2018 [1 favorite]
Best answer: I don't see why your "history" of HBP should be remotely relevant, but I'm not a physician so I'll leave that question alone.
I too delivered at 34 weeks, no steroid shots (timing didn't work out), and yet the baby was only admitted to the NICU because hospital guidelines said it was mandatory. It was reassuring to be there with all the monitors and 1:1 nursing, but ultimately no interventions were needed beyond bottle feeding instead of going straight to nursing, and we left at the end of a long weekend. I gather that that's not a very typical outcome, but I starkly remember being prepped for the c-section while a parade of people told us about all the potential difficulties we needed to be prepared for, as well as an awful poster in the bathroom about the importance of full-term deliveries, and I wish someone had said "but maybe none of that will be necessary" even if the odds of it were very low. Our baby was teensy but strong and healthy, did great on the breathing/eating/staying warm fronts, and seems to have suffered not at all from the early arrival.
posted by teremala at 12:11 PM on December 10, 2018 [1 favorite]
I too delivered at 34 weeks, no steroid shots (timing didn't work out), and yet the baby was only admitted to the NICU because hospital guidelines said it was mandatory. It was reassuring to be there with all the monitors and 1:1 nursing, but ultimately no interventions were needed beyond bottle feeding instead of going straight to nursing, and we left at the end of a long weekend. I gather that that's not a very typical outcome, but I starkly remember being prepped for the c-section while a parade of people told us about all the potential difficulties we needed to be prepared for, as well as an awful poster in the bathroom about the importance of full-term deliveries, and I wish someone had said "but maybe none of that will be necessary" even if the odds of it were very low. Our baby was teensy but strong and healthy, did great on the breathing/eating/staying warm fronts, and seems to have suffered not at all from the early arrival.
posted by teremala at 12:11 PM on December 10, 2018 [1 favorite]
Best answer: If you don’t already know it, consider reaching out to the Preeclampsia Foundation message boards. There are researchers there with more experience than we have.
This said, the lack of clarity you describe from your doctors worries me. As does the URQ pain you describe. That’s a HELLP symptom and While I have to assume they’re monitoring you for HELLP it gives me flashbacks just to hear it. Pree is nasty and dangerous and it is not called the great pretender for nothing. Keep telling them your symptoms, do not feel bad about advocating for your own care. Get help from family and friends is needed to make sure they are taking you seriously.
The good news is that at 34 weeks you’re in relatively good shape. You’re in the hospital and being monitored. Can you ask for a second opinion to put your mind at ease? Particularly if they don’t really specialise in Pree.
Hugs from half a world away and a pree/HELLP survivor...
posted by frumiousb at 3:13 PM on December 10, 2018 [4 favorites]
This said, the lack of clarity you describe from your doctors worries me. As does the URQ pain you describe. That’s a HELLP symptom and While I have to assume they’re monitoring you for HELLP it gives me flashbacks just to hear it. Pree is nasty and dangerous and it is not called the great pretender for nothing. Keep telling them your symptoms, do not feel bad about advocating for your own care. Get help from family and friends is needed to make sure they are taking you seriously.
The good news is that at 34 weeks you’re in relatively good shape. You’re in the hospital and being monitored. Can you ask for a second opinion to put your mind at ease? Particularly if they don’t really specialise in Pree.
Hugs from half a world away and a pree/HELLP survivor...
posted by frumiousb at 3:13 PM on December 10, 2018 [4 favorites]
Best answer: I reached out myself to a friend who is not a mefi member and who works with the Preeclampsia Foundation. She is not a doctor. I am not a doctor. We are not your doctor. Your doctor might be doing everything I'm about to write. I just can't tell, so I'm passing it on.
She said to please make sure they're responding to your symptoms with blood work, not just BP. It's not possible to tell from your description if they are doing this or not. Not all worstening disease symptoms track with blood pressure.
Are they doing regular labs and fetal monitoring as well? Again, I'd post your questions directly to their message board. Take care.
posted by frumiousb at 4:42 PM on December 10, 2018 [4 favorites]
She said to please make sure they're responding to your symptoms with blood work, not just BP. It's not possible to tell from your description if they are doing this or not. Not all worstening disease symptoms track with blood pressure.
Are they doing regular labs and fetal monitoring as well? Again, I'd post your questions directly to their message board. Take care.
posted by frumiousb at 4:42 PM on December 10, 2018 [4 favorites]
Best answer: I am an obgyn resident. At my hospital, we would almost certainly recommend delivery at 34 weeks for you.
posted by i_am_a_fiesta at 2:33 AM on December 11, 2018 [3 favorites]
posted by i_am_a_fiesta at 2:33 AM on December 11, 2018 [3 favorites]
Best answer: Not a doctor, diagnosed with preeclampsia at 32 weeks, delivered at 34 weeks by c- section when I developed severe preeclampsia. However, the other thing with me was I had IUGR and my daughter wasn’t moving around much (I didn’t have a ton of amniotic fluid).
Have you had the steroid shots to help your baby’s lungs develop? Lungs develop last for some reason but they can give you two steroid shots 24 hours apart that help speed it up. My little one, despite being 3 lbs 15 oz at birth was never on oxygen, which I attribute to those shots.
I thought my team might have been over-cautious with when to deliver. It sounds like your team may be under-cautious. But since your symptoms come and go (I know URQ pain is scary though), I’d look at the health of your baby and your blood/urine test results. I had URQ pain but I also had tests showing my liver was not doing great. And if you’re ever freaked out, go to the ER.
Btw my daughter was in the NICU for 16 days, mostly because she was little. It was hard but on the plus side, I got to heal from surgery while a team of experts took care of my kid. So it could have been worse. Hang in there and good luck!
posted by kat518 at 3:49 AM on December 11, 2018
Have you had the steroid shots to help your baby’s lungs develop? Lungs develop last for some reason but they can give you two steroid shots 24 hours apart that help speed it up. My little one, despite being 3 lbs 15 oz at birth was never on oxygen, which I attribute to those shots.
I thought my team might have been over-cautious with when to deliver. It sounds like your team may be under-cautious. But since your symptoms come and go (I know URQ pain is scary though), I’d look at the health of your baby and your blood/urine test results. I had URQ pain but I also had tests showing my liver was not doing great. And if you’re ever freaked out, go to the ER.
Btw my daughter was in the NICU for 16 days, mostly because she was little. It was hard but on the plus side, I got to heal from surgery while a team of experts took care of my kid. So it could have been worse. Hang in there and good luck!
posted by kat518 at 3:49 AM on December 11, 2018
Response by poster: In case any of these additional details are relevant, based on people's questions, here's a bit more information.
I am 35 years old; this is my second child. I am using insulin to control what may be best thought of as gestational diabetes. Like the HBP from before my surgery, my Type-2 diabetes is basically non-existent when I'm not pregnant, but I was severely insulin resistant at my highest weight. The diabetes is and has been well-controlled throughout the entire pregnancy. So well-controlled that they're willing to set this aside as a non-issue as far as baby's growth, placental health, etc.
This time around, I was diagnosed with intrahepatic cholestasis of pregnancy at 9 weeks. This is also well-controlled, insomuch as it can be. It's a liver disorder that is not at all well-understood, but I've been on the appropriate medication to keep my bile acids in check, and levels have never gotten higher than 20. (10 is diagnostic criteria, 40 is severe, 100 is emergency). We already planned to deliver at 37 weeks due to this diagnosis. My son was the same, though I wasn't diagnosed with ICP until 35 weeks with him.
These types of BPs flared up for the first time at 30 weeks, and we suspected I was on the road to pre-eclampsia. They showed an abundance of caution and admitted me to the hospital for 6 days to make sure that my handful of scary high blood pressures were, in fact, as isolated as they appeared. My labs were "remarkably un-preeclamptic," in the words of one doctor. The BPs were isolated incidents. Without meds, they fell back to the normal range, and I was sent home with instructions to monitor BP at home. For the following month, I'd record maybe one number a week in the 150/160s range, but it never stayed elevated 15 minutes later. I had twice weekly NSTs (no issues) with BP checks. I also had growth scans at 30 weeks and 34 weeks showing a healthy, growing baby.
I was admitted to the hospital last Thursday after a high BP (180/100) spike and labs turned up protein in my urine for the first time. They administered labatalol IV to bring the BP back down into range and started oral meds. I continue to be monitored in the hospital, checking BPs every 4 hours, adjusting the labatalol dosage to try and prevent the "breakthrough" BPs that keep popping up close to when a new dose is due, and doing daily NSTs. They also listen to the baby's heart rate every 4 hours when they take my vitals. They've drawn pre-e labs nearly every day I've been here, and they continue to look good (liver enzymes are not elevated; kidney function looks good).
They have checked for hyperreflexes, and I don't have that going on. I had a course of steroid shots when I was in the hospital at 30 weeks, because they were concerned even at that point that things might take a turn for the worst.
I didn't mean to imply that I'm not being monitored. I am. A lot. So is baby. Labs are good. I'm just concerned because when I was first diagnosed, they acted like I might be having a baby in just a day or two. Then it was "things seem stable, but if X, Y, or Z happen, then we'll move to immediate delivery." Now that X, Y, and sometimes Z are happening, they're still saying they're comfortable with the status quo.
I'm in a very good hospital, with a very good MFM team, associated with an exceptional NICU. I'm willing to believe I'm just being overly cautious, but again, I can't quite shake the idea that they're going to miss something or something is going to go wrong.
posted by terilou at 9:09 AM on December 11, 2018
I am 35 years old; this is my second child. I am using insulin to control what may be best thought of as gestational diabetes. Like the HBP from before my surgery, my Type-2 diabetes is basically non-existent when I'm not pregnant, but I was severely insulin resistant at my highest weight. The diabetes is and has been well-controlled throughout the entire pregnancy. So well-controlled that they're willing to set this aside as a non-issue as far as baby's growth, placental health, etc.
This time around, I was diagnosed with intrahepatic cholestasis of pregnancy at 9 weeks. This is also well-controlled, insomuch as it can be. It's a liver disorder that is not at all well-understood, but I've been on the appropriate medication to keep my bile acids in check, and levels have never gotten higher than 20. (10 is diagnostic criteria, 40 is severe, 100 is emergency). We already planned to deliver at 37 weeks due to this diagnosis. My son was the same, though I wasn't diagnosed with ICP until 35 weeks with him.
These types of BPs flared up for the first time at 30 weeks, and we suspected I was on the road to pre-eclampsia. They showed an abundance of caution and admitted me to the hospital for 6 days to make sure that my handful of scary high blood pressures were, in fact, as isolated as they appeared. My labs were "remarkably un-preeclamptic," in the words of one doctor. The BPs were isolated incidents. Without meds, they fell back to the normal range, and I was sent home with instructions to monitor BP at home. For the following month, I'd record maybe one number a week in the 150/160s range, but it never stayed elevated 15 minutes later. I had twice weekly NSTs (no issues) with BP checks. I also had growth scans at 30 weeks and 34 weeks showing a healthy, growing baby.
I was admitted to the hospital last Thursday after a high BP (180/100) spike and labs turned up protein in my urine for the first time. They administered labatalol IV to bring the BP back down into range and started oral meds. I continue to be monitored in the hospital, checking BPs every 4 hours, adjusting the labatalol dosage to try and prevent the "breakthrough" BPs that keep popping up close to when a new dose is due, and doing daily NSTs. They also listen to the baby's heart rate every 4 hours when they take my vitals. They've drawn pre-e labs nearly every day I've been here, and they continue to look good (liver enzymes are not elevated; kidney function looks good).
They have checked for hyperreflexes, and I don't have that going on. I had a course of steroid shots when I was in the hospital at 30 weeks, because they were concerned even at that point that things might take a turn for the worst.
I didn't mean to imply that I'm not being monitored. I am. A lot. So is baby. Labs are good. I'm just concerned because when I was first diagnosed, they acted like I might be having a baby in just a day or two. Then it was "things seem stable, but if X, Y, or Z happen, then we'll move to immediate delivery." Now that X, Y, and sometimes Z are happening, they're still saying they're comfortable with the status quo.
I'm in a very good hospital, with a very good MFM team, associated with an exceptional NICU. I'm willing to believe I'm just being overly cautious, but again, I can't quite shake the idea that they're going to miss something or something is going to go wrong.
posted by terilou at 9:09 AM on December 11, 2018
Response by poster: For anyone looking for a follow-up...
MFM debated on what to do and had disagreements among the team. This lead to a lot of mixed messages and stress for my husband and I as we tried to figure out what was the best route to take.
In the end, at 35 weeks, they decided that the benefits to the baby were marginal to stay in any longer relative to the potential risks to me. There was a lot unknown and unknowable, but I was on a lot of meds to keep my BP’s stable and there were concerns that I was needing to increase the meds every few days. Had we maxed out the dose of oral labetalol, they would have had a harder time treating an emergency spike. Ultimately the team felt more comfortable delivering sooner than waiting for another emergency level BP spike, which most were sure was going to happen at some point.
Our baby girl was born the next day, spent a week in the NICU, and was home with us by Christmas. That whole experience was stressful and heartbreaking in its own way, but everything worked out well.
My BP is back to normal after delivery. I’m recovering well, and we’re settling into a routine at home. Our daughter is small but strong and growing stronger every day.
Thanks to everyone who commented. I appreciated everyone’s thoughts, in part to validate that I wasn’t totally crazy for being worried!
posted by terilou at 4:10 PM on December 30, 2018 [4 favorites]
MFM debated on what to do and had disagreements among the team. This lead to a lot of mixed messages and stress for my husband and I as we tried to figure out what was the best route to take.
In the end, at 35 weeks, they decided that the benefits to the baby were marginal to stay in any longer relative to the potential risks to me. There was a lot unknown and unknowable, but I was on a lot of meds to keep my BP’s stable and there were concerns that I was needing to increase the meds every few days. Had we maxed out the dose of oral labetalol, they would have had a harder time treating an emergency spike. Ultimately the team felt more comfortable delivering sooner than waiting for another emergency level BP spike, which most were sure was going to happen at some point.
Our baby girl was born the next day, spent a week in the NICU, and was home with us by Christmas. That whole experience was stressful and heartbreaking in its own way, but everything worked out well.
My BP is back to normal after delivery. I’m recovering well, and we’re settling into a routine at home. Our daughter is small but strong and growing stronger every day.
Thanks to everyone who commented. I appreciated everyone’s thoughts, in part to validate that I wasn’t totally crazy for being worried!
posted by terilou at 4:10 PM on December 30, 2018 [4 favorites]
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My induction failed and I had a c-section at 34+6 and my son was in the NICU for 20 days (mostly just for a feeding tube). He's 8 months old now and doing awesome. I wish he could have stayed in and cooked a little longer, but I wouldn't mess around with your health or your baby's health. After my experience, I would definitely go along with delivering early.
posted by disaster77 at 9:48 AM on December 10, 2018 [2 favorites]