Pre-Eclampsia Watch Dog on the loose. - Page 27

[myjulybabes]

Got my bloodwork results back finally. All the standard prenatal testing was fine, not anemic, no STDs, blah blah blah. But the tests for the MTFR (is that right, I was scribbling so fast I can't read my handwriting!) mutation and the antiphospholipid...thing....were positive. My OB is calling in a scrip for prescription strength folic acid, and I've got an appointment with the maternal fetal docs in a couple weeks. I may have to transfer to their care entirely. My OB does some high risk, but apparently, I may be too high risk for her even. She thinks I can avoid heparin and/or lovenox since I've never had problems with blood clots previously, but ultimately, it'll be up to the maternal fetal guys.

Looks like I have a lot of research ahead of me tonight.

[dynamicdoula]

Went to the University of Washington Hypertension clinic...

This is posted from an email so forgive me for any references to people you don't know.

I went to a pre-conception visit with my OB/GYN and talked with him about my history and whether he felt that I was at risk for developing pre-e again. He said he felt that my chances were very high and that with my history, I would be sent to the new maternal hypertension clinic at the UW with Dr. Easterling. He was very excited about this program saying that his clinic had seen a dramatic reduction in the number of women with pre-eclampsia, and those who did get it, it wasn’t as severe as it might have been in previous pregnancies.



After I got pregnant we discussed the clinic again. He said that I would go between 15-16 weeks to get baseline information and to talk about taking Atenolol, a blood pressure medication (beta blocker). He said that if I were to go on it that the chances were good that I could stave off getting pre-eclampsia all together, and that instead of a pre-e induction I would have an induction between 37-39 weeks, because this drug runs a risk of IUGR and placental aging. Basically, he explained, it reduces the blood flow through your body, and consequently through the placenta, leading to a small(er) baby. I said, “It would be hard to get me in here for an induction just because I had reached some arbitrary date by which somehow everything was supposed to go to pot… what about if I’m taking NSTs 2 or 3 times a week (or more?)” He said that NSTs weren’t a good indicator for health and that it wasn’t worth the risk that something was going on that we didn’t know about, that the NST didn’t catch.

I was pretty nervous about all of this and after reading up on the drug found that it is a Class D and not recommended for pregnant women, and the reason I found was because of fetal size. I was pretty nervous after reading this. I went to the preeclamsia.org site and asked a few questions and the women there were incredibly enthusiastic (like… jumping up and down, practically) over Dr. E and this protocol and how it ‘saved their pregnancies’ and sent me private emails off the board about how lucky I was to have this option so close, etc etc. Not a SINGLE negative story. Not one. That kind of scared me, to be honest- I want both sides of things and I got nothing but glowing support and enthusiasm from the women there. I wasn’t really convinced but they sent me links to a study that Dr. E did on this protocol. (http://www.greenjournal.org/cgi/content/full/93/5/725 and http://www.greenjournal.org/cgi/reprint/98/3/427). I was struck by the small samples and while it was good to see something published on this, I just was withholding judgment until I had a chance to meet with them and ask my questions and judge for myself.

I had my first appointment with them yesterday, here’s how it went (in case anyone has a client expecting to go to the clinic, women come from several states away to see this doc):

When I arrived and checked in, I was met by two nurses. One had me lie on a table and turned on a machine which measured blood flow, I believe. She held a wand to my sternum area for a few minutes and monitored the results while the other nurse asked me questions.

After that, another wand was held to the base of my neck, measuring flow through my carotid artery. This lasted 3 or 4 minutes or so as we continued talking. The nurse gathered the results right there in the room and placed my data on a chart. The chart showed the ‘high and low’ range of cardiac output between I think it was 4 and 7. My cardiac output was high at around 9, which meant that I was at increased risk for pre-eclampsia, based on their findings of how cardiac output relates to hypertensive disorders. She talked about my vasodilation and how that also was outside of a normal range and explaned how the Atenolol would put me into a closer to normal range for both cardiac output and vasodilation. I asked her if it was true that they want their patients to be induced between 37-39 weeks and she (the nurse) said, “Well there’s no benefit to the fetus to be in there longer than that so yes, we do recommend an induction.” I asked if that was based on individual patient circumstances or just a blanket recommendation, and she said it was a blanket recommendation. I started to cry… I think this was the whole thing I am hoping to avoid, is a ‘blanket induction’. So I cried for a minute and took some deep breaths and we went in to meet the doc. We didn’t meet with Dr. Easterling, but Dr. Carr who I had previously spoken with concerning joining a pre-eclampsia study they were doing before I conceived. She was just as warm and personable and down to earth in person as she was on the phone- very cool lady.

We talked mainly about the drug and the studies that I had seen and my husband and I asked lots of questions about why the samples were so small, how often they were seeing IUGR, etc. She said that they had never seen a ‘very small’ baby, but that in the study, small babies were reported 4% of the time. She went on to explain that the data in the study could be a bit misleading because as a double blind study, the patients and docs didn’t know who was taking the meds, so the meds could not be adjusted for each patient depending on how she was reacting to it. So the women who had experienced lower fetal growth would have had their meds adjusted earlier on to avoid a smaller baby, whereas in the study that wasn’t possible. She also said that there was a small number of women in the study who went on to get pre-eclampsia anyway, but they tended to be the patients who started the drug later in their pregnancies and who also were not being adjusted to meet their individual needs- everyone was given 100mg.

I asked about induction at 37-39 weeks and she said the same thing, that there was no ‘benefit’ to the baby to be in any longer than that, but that if the NSTs were good that she would be comfortable going to 40 weeks. She said they got worried when a patient wanted to go 41 weeks because ‘there was no point’, as the baby was well developed and why stay pregnant longer than necessary and take on all the risk of stillbirth that she said increases at that time. I said, “Wait a second. I’m having a really hard time swallowing this “there is no benefit to staying pregnant” story. While the baby might not be growing a liver or getting more brain cells at that time, there is absolutely critical development going on. I’ve seen babies come out at 35 weeks and I’ve seen them at 41 and I can tell you hands down which baby is ready for life outside the womb.” She was taken a little aback I think, but not in a bad way- I think maybe from her perspective, getting a surviving baby with the ability to breathe and survive outside the womb was the highest priority, and anything else (like ‘secondary’ development, I’ll call it) was expendable or not even on the map. She took my comment seriously though, she didn’t argue with me at all about it and just said, “it’s really your choice- we don’t want to induce you unless your cervix is favorable and you WANT to be induced, if we don’t see anything wrong with the baby.” I felt MUCH relieved after that. She said that they have midwifery patients in the clinic who also don’t like to be induced in those early dates and that it’s not their desire or intention to force an induction on a woman who doesn’t want one. *whew, relief*

She gave us the prescription from Atenolol and set up an appointment for next month when I’ll be 20 weeks. She said that it was up to us what we wanted to do, they weren’t going to push us… and that made me feel better too. We agreed to discuss it more at the next appointment.

We left feeling much more clear on what we were looking at. The one question she couldn’t answer was whether there were long term effects on the babies due to the use of this drug during pregnancy. She said they’d like to do that study but they aren’t quite there yet, they need money/staff/etc but it’s on the list of things to do, basically.

We are definitely leaning toward taking the Atenolol but not starting until 20 weeks. I’ll have several ultrasounds during the pregnancy to check on fetal growth but as long as my NSTs are coming back okay, there’s no reason I have to be induced unless I want to be. I don’t know what this means for a homebirth at all, but will talk with the midwife about that when we meet in a couple of weeks.

[flyingspaghettimama]

Wow, dynamicdoula and myjulybabes, it sounds like y'all are making some great progress in your detective work. Good for you, being so proactive in your health care.

DD, I'm glad it sounds like they're very open-minded about later-term care. The only thing I would caution about is that preeclampsia board. Sometimes it's helpful, and sometimes it becomes a closed loop of hysteria and groupthink. If you know what I mean. Just mention the word "homebirth" if you really want to get them on a roll.

And if anyone wants any inspiration, check out my homebirth story, which turned out great (and pre-e free, although my midwife was monitoring very closely for it without being paranoid): http://www.mothering.com/discussions...d.php?t=433339

This was five years after my first birth, which was Pre-E starting at about 28 weeks, induced at 34 weeks, one seizure, and HELLP throughout the birth and post-partum with the usual cocktail of drugs (mag sulfate, pit, epidural, etc). It was a big bowl of bad.

[taradt]

Originally Posted by myjulybabes

Got my bloodwork results back finally. All the standard prenatal testing was fine, not anemic, no STDs, blah blah blah. But the tests for the MTFR (is that right, I was scribbling so fast I can't read my handwriting!) mutation and the antiphospholipid...thing....were positive. My OB is calling in a scrip for prescription strength folic acid, and I've got an appointment with the maternal fetal docs in a couple weeks. I may have to transfer to their care entirely. My OB does some high risk, but apparently, I may be too high risk for her even. She thinks I can avoid heparin and/or lovenox since I've never had problems with blood clots previously, but ultimately, it'll be up to the maternal fetal guys.

Looks like I have a lot of research ahead of me tonight.

For MTHFR you will also want high levels of B6 and B12 and get your homocysteine checked out, you want it to be pretty low (under 5 is what we were aiming for)

tara

[myjulybabes]

Originally Posted by taradt

For MTHFR you will also want high levels of B6 and B12 and get your homocysteine checked out, you want it to be pretty low (under 5 is what we were aiming for)

tara

Aah, good to know, thanks. How high for the B6 and 12? I'm already taking 100mg of B6 for nausea, along with my prenatal when I can choke it down. Probably not quite enough, hmm? I'll ask the MFM guys about homocysteine levels.

My OB is also very insistent on a particular brand of the omega fatty acids. Anyone know off the top of their head if "Expecta" brand is really better than the others? I'm already taking fish oil, and I like the ones I have because they have a special coating so I'm not burping fish.

Seriously, cross your fingers that I can get by on just the baby aspirin. I was reading up on heparin and lovenox today and was literally in tears at the thought of multiple daily shots. I have a waaaaay beyond normal phobia of needles. :

[Kailey's mom]

Found a myth

GOssamer[/QUOTE]


8. Preeclampsia has little to no impact on the baby.
Preeclampsia can cause intrauterine growth restriction and is the #1 reason doctors choose to deliver early. Preeclampsia is the leading known cause of prematurity accounting for 15% of preterm births in the US or approximately 60,000 premature births. It is also a leading cause of neonatal and infant death.


My daughter was literally starving in my womb, she had IUGR, and was born at 36 weeks just over 4lbs when we brought her home. My ob's were brushing it off, and had me on bedrest for the last 2 months, I knew something was very wrong. When she was born she had breathing problems, very low blood sugar, heart murmer and jaundice and had to be in the NICU..I don't know if it's related, but she still suffers from acid reflux (gerd) , which was so painful for her during the first 7 months. I don't know when she stopped growing, but when she was delivered the neonatologist said that she looked like a 32weeker. I don't know what "could' have happened if I didn't insist on a ultrasound, I was going to go elsewhere and pay for a 4D if the ob didn't do one. Thank god things are okay now..Pre_E/eclampsia is scary. My urine protein was a plus4, and my b/p's were running on average 210/140 until 6 weeks post partum.

[taradt]

I am in no ways an expert, but my natropath had me on 50mg B6 2x a day, 1000mcg B12 once a day, and 5mg folic acid.
I took my same fish oils I always do (begrudginly because I am vegetarian, but anything for a healthy baby), and the baby asprin.

Thankfully I was negative for the antiphospholipid so I know nothing about the shots.

[dynamicdoula]

Originally Posted by flyingspaghettimama

DD, I'm glad it sounds like they're very open-minded about later-term care. The only thing I would caution about is that preeclampsia board. Sometimes it's helpful, and sometimes it becomes a closed loop of hysteria and groupthink. If you know what I mean. Just mention the word "homebirth" if you really want to get them on a roll.

You know, I did bring that thread up about a year ago. A very passionate debate ensued where I got lots of private emails that were gently but firmly stating that I shouldn't put my birth experience before my life (well DUH). The women there are very, very knowledgeable. All 100% enthusiastic women who believed with their whole hearts that this protocol had saved their lives and their babies. I still haven't heard a negative story yet about this protocol (which I will be starting, I've decided- what do I have to lose, it's a chance at avoiding pre-e all together) and honestly I like to hear both sides so that I can have a balanced view to use to make my decisions. I'll keep searching.

[flyingspaghettimama]

Originally Posted by myjulybabes

My OB is also very insistent on a particular brand of the omega fatty acids. Anyone know off the top of their head if "Expecta" brand is really better than the others? I'm already taking fish oil, and I like the ones I have because they have a special coating so I'm not burping fish.

Seriously, cross your fingers that I can get by on just the baby aspirin. I was reading up on heparin and lovenox today and was literally in tears at the thought of multiple daily shots. I have a waaaaay beyond normal phobia of needles. :

Well, you'd probably just get used to the shots, you know? It would become a new sort of normal. I totally get you though, I had no worries about needles until after my first Pre-E experience and the every-half-hour blood draws. Since then...blech!

I took Carlson fish oil, because they screen for heavy metal contamination. I would just double-check that?

Originally Posted by dynamicdoula

You know, I did bring that thread up about a year ago. A very passionate debate ensued where I got lots of private emails that were gently but firmly stating that I shouldn't put my birth experience before my life (well DUH). The women there are very, very knowledgeable but scary sometimes in their fanatacism. It was interesting when I asked about the UW clinic the reactions I got were ranging from how very lucky and blessed I am to have this option to "I'll give you a ride and sit with you at the appointment". All 100% enthusiastic women who believed with their whole hearts that this protocol had saved their lives and their babies. I am not saying that isn't true, but the enthusiasm without doubt was what worried me. I still haven't heard a negative story yet about this protocol (which I will be starting, I've decided- what do I have to lose, it's a chance at avoiding pre-e all together) and honestly I like to hear both sides so that I can have a balanced view to use to make my decisions. I'll keep searching.

Yeah, I guess for me it was this strange dichotomy of birth experience VS DYING! It's not necessarily the case that having a positive birth experience must be at odds with staying alive, or that one must take everything a white-coat-dude says as gospel. For me, at least, having a good deal of control over my entire experience - down to taking my excessive vitamins every day and exercising - that control was something that helped me to process the negatives of my first experience (where I felt like I was expected to be a passive participant in my child's birth).

I just remember visiting and feeling very depressed afterwards and like I was doing myself and my child a great disservice by attempting homebirth. And I didn't want to live in that place of fear throughout my entire pregnancy.

I think it sounds like you're on the right path, DD! If it seems like you truly can't find any contraindicating information, and you can do ultrasounds without them using them against you (BPPs can be like that, as I'm sure you know). I find it a little surprising that they said that a BPP wouldn't give you the info on whether or not to induce - I thought they could visualize calcification of the placenta.

[myjulybabes]

Latest update: Saw the MFM specialist today. He didn't really tell me anything I didn't know. I am going to have to do the Lovenox, but thankfully, the doseage he figured for me makes it a once a day thing. I've heard of twice a day (or 3 times for regular heparin). Also, dh went with me and learned to give the shots, so at least I can just close my eyes and get it over with rather than agonizing over sticking myself. Plus that opens up more areas to inject into...spread out any bruising and hopefully find some spots that aren't too painful. The nurse did the back of my arm today and it was NO GOOD. Still hurts.

Originally Posted by flyingspaghettimama

Well, you'd probably just get used to the shots, you know? It would become a new sort of normal. I totally get you though, I had no worries about needles until after my first Pre-E experience and the every-half-hour blood draws. Since then...blech!

Yeah, I'm hoping. I was never good with needles, but I could deal, until the first bout of pre-e and all those blood draws. I swear I left the hospital looking like a drug abuser...needle marks and bruises all up and down both arms.

Turned in my baseline 24 hour urine and got that blood draw (2 sticks in one day...dh felt sorry for me and took me out to lunch. ). Anyone remember off the top of their head how long those results take? My bp was down, yay. I think it may be the beginning of the standard second trimester drop, I'm 13w2d today. But I'll take it. No meds for that yet.

I may switch my care completely over to this doc. I really like my current OB for most things, but since I've had 2 previous sections she just wants to schedule another for 39 wks. This guy said because of the issues the clotting disorders can cause with the placenta, he feels it's better not to go past 40 weeks and defintely not past 41. So he wants to pick a date that we'd go no later than, schedule the section, but if I go into labor naturally before that, he implied he'd be ok with VBA2C. He just won't induce, and I agree, I would not choose to be induced after my own research on VBA2C. It's not perfect, but at least his plan makes sense. He also asked if I planned to bf, and when I said YES! told me that was great, we'd just switch to Coumadin after the baby is born, since I'll need blood thinners for 6 more weeks, but apparently Lovenox and heparin are no-nos for bf.

Scheduled the big u/s for the end of June, now I just have to get back in to see my regular OB before that and decide if I'm sticking with her or transferring care.

DynamicDoula, how are things going for you?

[chilliepepper]

Originally Posted by myjulybabes

He also asked if I planned to bf, and when I said YES! told me that was great, we'd just switch to Coumadin after the baby is born, since I'll need blood thinners for 6 more weeks, but apparently Lovenox and heparin are no-nos for bf.

Hmmm, I thought it was Coumadin that was a no no for bf. I hope Lovenox is ok, because I injected it for 5 months while pg and nursing my toddler, and for 2 weeks postpartum while bf my newborn! None of the docs or my research indicated any problem with it.

Did I get it all wrong?

[NZmumof2]

So who else is around having a pregnancy after major complications last time from PET? I'm 17 weeks pregnant with my second pregnancy, had severe PET / HELLP last time, GA -section at 28 weeks, 4 days of high dependency unit for me...
I'm taking aspirin, high dose folic acid, b12 injections, will have 3 weekly growth scans from 24 weeks.
Anyone else in a high risk pregnancy?
Anna, crunchy rural doc, partner to Leah for 10 years, mums to Bede 7 (28 weeker) and Emmett 3.5, expecting another in Jan 08

[dynamicdoula]

Originally Posted by NZmumof2

So who else is around having a pregnancy after major complications last time from PET? I'm 17 weeks pregnant with my second pregnancy, had severe PET / HELLP last time, GA -section at 28 weeks, 4 days of high dependency unit for me...
I'm taking aspirin, high dose folic acid, b12 injections, will have 3 weekly growth scans from 24 weeks.
Anyone else in a high risk pregnancy?

Hi Anna,

I'm in high risk pregnancy as well- I am working with the hypertension clinic at the University of Washington and as a result I'm taking atenolol and clonidine to control my cardiac output. My last pregnancy ended with a 5 day long induction, during which I barely, BARELY escaped having a cesarean. I did not have HELLP but I have had onset of hypertension much earlier this pregnancy (I started atenolol at 15 weeks 50mg per day and was fine when I started it, but after 2 months of taking it I found my blood pressure was 165/79 (pulse 89), so the atenolol was increased.)

The atenolol is doing doing its job but I am still vasorestricting, hence the clonidine (.025 x3 daily). I take my blood pressure 3x per day and it's been really reassuring that things are working as they should. No protein, but I have noticed in the last few days seeing some lights/spots... eek I go to the UW for one of my 4 consults today so I'll mention it to them. I'm getting NSTs every week from here out and the goal is to see me get to full term at least, and my personal goal is to NOT be induced, but I'm not holding on too tightly to it.

I am not taking any other supplements with the medications.

I'm glad you found the thread and I also invite you to check out www.preeclamspia.org (some of the women from that site also visit here), they are incredible women who are so knowledgeable it astounds me. You would definitely find support/information there to supplement that which you'll also find here. Some really caring women on both sites!

Anyway, I'm sad to have to welcome you to the thread but welcome it is...

[ksera05]

I had my now 1 year old at 24w5d last year due to severe pre-e and am now 12 weeks pregnant again, so I really should be paying more attention to this thread

We found out yesterday that I have the MTHFR mutation. The perinatologists are putting me on a very high dose of B6/B12/folic acid(?) but said that I don't need Levanox shots, etc. So at least I don't have to do shots... I'm also on baby asprin.

At what point in your pregnancy do they start checking your homocysteine levels? I forgot to ask.

Did anyone else spill protein really early in their pregnancy? They did a 24 hour baseline urine test at 7 weeks and I was already spilling trace amounts of protein, which makes me slightly nervous. Every time my urine has been dipped in the office since then I've shown up as having trace amounts, also. Anyone else have any experience with that?

[NZmumof2]

Hey Sarah,

As far as the protein goes, do you know if you were spilling any when you weren't pregnant? Trace amounts of protein are frequently not significant (I'm also a family doc) but a change in levels is important. Did you have a classical incision with your first? Just wondering cos you're having an elective LSCS this time.

I don't know about the homocysteine thing, it's not routinely tested here in NZ, nor is the MTHFR mutation - gene testing especially often has to be sent overseas from here and would take months to get a result.

[ksera05]

Originally Posted by NZmumof2

Hey Sarah,

As far as the protein goes, do you know if you were spilling any when you weren't pregnant? Trace amounts of protein are frequently not significant (I'm also a family doc) but a change in levels is important. Did you have a classical incision with your first? Just wondering cos you're having an elective LSCS this time.

I don't know about the homocysteine thing, it's not routinely tested here in NZ, nor is the MTHFR mutation - gene testing especially often has to be sent overseas from here and would take months to get a result.

Yeah - I had a classical...trust me, I'm not exactly ecstatic about this "elective" repeat c/s but it seems safest from all the studies I've read. Ugh.

I'm fairly sure I wasn't spilling any before I got pregnant but I'm not 100% sure on that. I am wondering though if maybe it could just be simple dehydrating. Morning sickness has been rough this time around and getting water down me has been hard. I do know I wasn't spilling any protein this early in my pregnancy with DD#1 but on the other hand my kidneys did take a beating during her pregnancy and postpartum period.

And along those lines, off to get another glass of water.

[NZmumof2]

I'd make exactly the same decision if I'd had a classical incision Sarah! I was warned I may well need one when I had Bede, but they did manage to do a lower segment one so if I get to term I'll have a vaginal birth if possible. That said I won't consider induction or augmentation so I'm trying to get te balance right between preparing for a labour and not feeling like I've wasted my time if I have a cs. Ultimately I'm pretty clear that getting baby and I through all alive is really my only aim.

When you're dry your urine is very concentrated which does increase the chances of picking up protein.

[ksera05]

Originally Posted by NZmumof2

I'd make exactly the same decision if I'd had a classical incision Sarah! I was warned I may well need one when I had Bede, but they did manage to do a lower segment one so if I get to term I'll have a vaginal birth if possible. That said I won't consider induction or augmentation so I'm trying to get te balance right between preparing for a labour and not feeling like I've wasted my time if I have a cs. Ultimately I'm pretty clear that getting baby and I through all alive is really my only aim.

When you're dry your urine is very concentrated which does increase the chances of picking up protein.

Oh I know what you mean about induction. Some doctors are actually willing to induce VBACers, I think that's insane

[buzzjen]

Hi all -

I've only gotten through a few pages of this thread, and I'd like some help from all of you. With my first pg, I had PIH (no pre-e that could be detected) diagnosed at 26 weeks, with bedrest from 30 weeks to delivery at 38 weeks with an awful, long, painful induction with failed forceps and vacuum extraction. With my second pg, I changed drs and took as many actions as I could to avoid PIH/pre-e. I did and dd was born at 39 weeks with a natural, drug-free birth.

Now, almost 3 years later and pregnant again, I can't remember what I took in terms of supplements with dd's pregnancy. I know I took baby aspirin, but can't remember at what week I started and think I took calcium. Are there other supplements I'm missing. Are there better brands of prenatals? We've since moved and therefore, I have a new doctor (who I generally don't trust a whole lot). Any links to research would be helpful - I was a grad student with my other two pregnancies, so was able to do research right at the library - not so with this one and I don't know where to start online.

Thanks for your help!

[gossamer]

Hi Jen,
A good place to start researching and asking questions would be preeclampsia.org. There is a lot of information on that board. COngratulations on having one uncomplicated pregnancy and I hope you have another.
Gossamer