Prepping myself for pregnancy after PE

[lei.in.the.sky]

Hi all,

I am new to the forum and wanted some advice from fellow moms. PE set in fast and furious in my first pregnancy(I had symptoms that went undetected by my doctor around week 20, mainly swelling and occasional indigestion, and then the day before i delivered i developed the whole list of symptoms) and I delivered our daughter Leilani by C-section on October 27th 2011 @ 23wks + 5 days( day 3 of our babymoon). She became our little angel an hour after her birth.

It has been a rough road this past six months. From delivering away from our home, somehow getting pounded at the hospital because i traveled in THAT condition (i had medical clearance to fly and travel), facing questions about how i did not know i was sick, and not being aware of the risks i was taking. Not only did i feel guilty for somehow being responsible for Leilani's death, i felt foolish for not understanding my body and believing my doctor when he said my swelling was normal.

I was told to wait at least 6 months ( i think more for my physical scars to heal) before TTC. During this time i have seen 2 OB-GYN, 1 internal medicine doctor. I have scanned my kidneys, had a heart ECG, done creatinine tests, full blood work, and tested for auto immune diseases, thyroid problems, nephrotic syndrome, and blood clotting disorders. all tests results came out good. I am also trying to lose some weight (i lost all my pregnancy weight after delivery, plus and additional 5 pounds, within days of the c-section) in order to be at a lower starting point ( i am not overweight, and i know this fits into the can't hurt but not proven to help). My BP is currently normal( it took about a week post-partum for me to be able to be stable enough to leave the hospital, and then it was 130/90 for the first month post-partum). it is now 110/70 @ home, and 120/80 @ doctor's office.

My doctor has given me the clear to start trying but both ob-gyn tell me my risks are high for recurrence (one puts it at 50%, the other at 80% due to the severity and early onset i experienced), I am taking 1000mg Calcium, a pre-natal vitamin, and LDA (81mg). His recommendation has been to take the LDA from preconception and during all the pregnancy. I must say I worry a little about taking aspirin during the first trimester thinking i may restrict baby's growth. But i am willing to take the LDA, hoping it will help delay the on-set of PE until much later in the pregnancy (my goals are to make it to 28 weeks/32 weeks/35 weeks/37 weeks)
No one has spoken about LOVENOX or LABETALOL to me, unless i develop high blood pressure i will not be on meds to control the BP.

So my questions are:
- Should i be advocating for LOVENOX and/or LABETALOL from the get go? i really have an aversion to meds and injections, but if this means i can have a baby that will thrive so be it.

- Are there any tests anyone has done to check if they will have PE? at the hospital they told me next time i should request a doppler scan of the uterine arteries at 20 weeks to determine if something is not right with the blood flow/placenta. One doctor i saw post PE told me he does not favor this because then what does one do with the information? it will be a waiting game since patient will know it is coming, but not when...i intend to request this because after my experience i feel like it is best to know everything.
any thoughts on this from people who have taken this scan? how about tests on Placental Growth Factor?

We will be TTC in a couple of months, i am terrified, but we both want a living child so much. Apart from exercising, eating health, taking the supplements and LDA, and trying to keep myself stress free i don't know what else to do. I have also listed cutting my workload after the first trimester, or even taking a leave of absence/resigning as a possibility. All in order to remain calm throughout the future pregnancy. I had a few hectic months last year at work, and my ankles would be like elephant ankles by the time i got home from work. i did elevate them at home, and would wake up fine in the morning.

Thank you so much ladies, any input is so very welcome. I know i need to follow doctor's advice, but your feedback is valuable as women who have experienced PE and then had PE-free pregnancies.

Hugs

[angieb]

- Should i be advocating for LOVENOX and/or LABETALOL from the get go?

If your blood pressure is normal, there is no reason for you to be on bp meds from the start. If you have hypertension, then yes, it is not a good idea to start a preg hypertensive.

Personally, I have a similar history to you though our daughter had severe IUGR, I was on lovenox, it wasn't much fun, but the little boy asleep in my other arm was worth every injection. I do not have a known clotting disorder.

-

Are there any tests anyone has done to check if they will have PE? at the hospital they told me next time i should request a doppler scan of the uterine arteries at 20 weeks to determine if something is not right with the blood flow/placenta. One doctor i saw post PE told me he does not favor this because then what does one do with the information? it will be a waiting game since patient will know it is coming, but not when...i intend to request this because after my experience i feel like it is best to know everything.
any thoughts on this from people who have taken this scan? how about tests on Placental Growth Factor?

We had the doppler scan in my 2nd preg and it showed notching (not good, supposedly), but my pregnancy was pretty normal. A lot of unnecessary stress over nothing. That being said, in my first preg, the quad screen red flagged me for spina bifida (high afp levels)- she was fine, but they think that test picks up on something with growth/pre-e. In my 2nd preg, I did the quad screen and it was normal.


I have a bit more to add later, I have to get going for now though.

[angieb]

You mention seeing 2 different OB-GYN but unless I missed it, I don't see anything about an MFM or perinatalogist in there. Definitely, definitely, DEFINITELY get an opinion from an MFM or peri before you start TTC/ get pregnant, if you haven't already. This website has a good locator www.smfm.org . You don't necessarily *have* to see them throughout your pregnancy (though given that you had a 23 weeker, they likely will want to keep an eye on you through your pregnancy.) Even after I've had a healthy pregnancy after our 23 weeker, I've already seen my MFM twice and had 2 ultrasounds by 12 weeks. If your OB hasn't sent you to an MFM/peri yet with your history, honestly, that's pretty disappointing.

I wouldn't stress yourself out too much over weight. I was heavier with DS (relatively healthy preg) than I was with DD (23 weeker), it didn't make a bit of difference. They didn't especially want me exercising during pregnancy and I kept my usual diet (which is not that great but I do my best.) Both my doctors were happy I resigned from my stressful teaching job during my pregnancy with DS and I think that helped a lot (at least for my mental well being.) I know they say work stress doesn't play a huge rule but I was working from around 6am-10pm every day with only small breaks to eat and dealing with a ton of really stressful crap at work...the last week before I got sick with DD I had a bomb threat in my classroom, got chewed out by our wicked witch principal (who has since been fired), and a ton of other really ridiculous crap.

I would not worry about taking LDA. With DS, I took LDA from conception till about 34 weeks, he was a healthy 7.4 lbs at birth. I was also on lovenox from about 7 weeks till about 28 weeks. If anything, blood thinners should give you a bigger baby, not a smaller one. The only reason they had me wait was they wanted to give the embryo time to implant and then wanted to confirm a heartbeat before starting the injections. The reasons I am on lovenox is because our DD was severely growth restricted (10.5 ounces at 23 weeks) and because my placenta was full of infarcts (dead tissue/clots) and small. My MFM strongly feels that I likely have a blood clotting disorder that they don't have tests for yet or that isn't showing up on whatever tests they do have. This is my second pregnancy on LDA and lovenox and I've not had any issues with it. That being said, there are plenty of members who aren't on lovenox and don't get sick, although we also have those who have been on both. Different doctors have different opinions on it, for sure.

[lei.in.the.sky]

Thank you for both your posts AngieB. I live in a developing country, and I am trying to get the best referrals doctor-wise. I may be traveling couple of times to see a perinatologist in Johannesburg/Pretoria (S.Africa) but it is not too close so it may not be part of my ongoing "pre natal package"(in terms of frequency). That being said, the private health care i get does include ultrasounds at every visit (last pregnancy i had one from 8 weeks onwards until my last appointment at 21 weeks - they actually focus much more on screening through ultrasounds scans than physical examinations...probably why they missed my swelling or dismissed it), and all the screening tests we have mentioned. I am classified as a high risk for future pregnancy so my visits with the doctor will be more frequent.

I will have to definitely make a birth plan prior to conceiving - and this may mean where to be evacuated for in an emergency. I have even thought about moving to my husbands' home country (Sweden) and remaining there in order to benefit from their healthcare( i have family there). I am researching all the neonatal care that can be provided in case i am in the same situation again. I think that is key, because all the monitoring that can be done at hospital/clinic or at home we will do...but we need to deliver in a place that has adequate NICU if we are faced with the same prognosis. South Africa does have high standards of health care( private sector), obviously the price is exorbitant as well (we are saving as much as we can).

Thanks again,

Hugs

[angieb]

Oops, my bad for assuming you are in the US. Sorry about that.

It sounds like for a developing country, they have a decent amount of specialists and testing available, that's a good thing. That being said, we spent 2 years on a remote island (Azores) while my husband was in the US military, the healthcare available there was very very basic--the military sent people off island to Spain (a several hour flight) for nearly all medical procedures,even basic stuff like MRI's because the local hospital did not have adequate equipment. I am pretty certain had my first pregnancy happened there, I would have been dead before they even had a clue something was wrong. So that has me pretty biased based on my own experiences and being spoiled with the US medical system and facilities available. I personally would not even consider a subsequent pregnancy somewhere that does not have a level III NICU, capable of caring for babies 24 wks and up, within less than an hour's drive or travel. Hopefully it will not be necessary (it certainly wasn't with my 7.4 lb 36 weeker), but I personally would need to know it's there, just in case, even for me now after a relatively healthy pregnancy. I don't know what is available in your area or not, but I believe that most of our highest maternal morbidity rates come from developing countries, so in your shoes I would definitely consider moving to Sweden for the duration of your pregnancy, especially 2nd trimester. As you know, this disease can move extremely fast, my platelets dropped by 100,000 and my liver enzymes more than doubled in 6 hours. How fast could they emergency evac you if things get ugly? I would definitely travel to see the peri first before trying again, but honestly, it is hard for me to imagine a high risk dr being comfortable with the risks in a place with limited medical capabilities with a history like ours.

For what it's worth, they gave me about a 70% chance of getting pre-e and 12% chance of HELLP in my next preg. Neither ended up happening, though I think it was good we delivered when I did, I was starting to get awfully swollen. Don't let the odds stress you out too much, but I would be prepared for what would happen if you get sick from 24-32 weeks...from my understanding, Sweden has excellent neonatal survival rates, even lower than the US rates.

[kerisue]

Hello,
I'm so so sorry for what happened to you and baby Leilani. I bet you miss that sweet angel every single day. PE deprived my little baby of her life as well and it's the worst possible thing.

I can't believe that anyone tried to blame you for what happened. Your disease was probably already developed by the time you travelled anywhere so don't feel guilty for that at all. So many symptoms- like swelling- can be found in normal pregnancy so it can be difficult for docs- let alone us- to know and interpret their meaning.

It sounds like you've done everything possible to prep yourself for another pregnancy. Like you I was given high odds (60%) for PE happening again. Because docs don't know exactly what causes PE, this is a best guess they've made for you based on your situation. However, even if you do get it again, it could very well be later in the pregnancy. Doc's advice about LDA varies widely, but for what it's worth I started preconception too. I believe research has shown that IF aspirin is going to do any good it tends to be better to start it earlier in the pregnancy. I asked my docs about Lovenox and both MFMs told me NO, that the research does not support its benefits over its risks. That said, there seem to be a lot of women on this forum who do take it.

Good luck with trying to conceive again.

[aajatwins]

I'm so sorry for the loss of your precious baby. I'm glad you've found this forum for support.

Keri is right - you cannot blame yourself for the situation you found yourself in. PE is tricky in that sometimes it is cut-and-dry and easy to diagnose and sometimes it looks just like pregnancy and blindsides you. I agree with what has been said about the meds. The only thing I would add is to ask your doctor about possibly taking extra folic acid. It is in your prenatals, but higher doses are sometimes given. It is another "might help, can't hurt", but you do you want to be taking it before conception (IF your doc thinks it would be a good idea) as it is most useful before you even get a positive test.

I was also blindsided by hypertensive issues, but much later in my pregnancy. All the symptoms were there, but mimicking typical pregnancy symptoms. Just nosing around on these boards, you'll hear that it happens more often than you know, all around the world. Even in well developed countries.

[sam10]

Hello and welocme!

I am sorry you lost your precious Leilani! The first year is so very difficult.

I wanted to let you know that similar to Kerisue's doctor, my doctor also let me know that Lovenox would not be necessary for me, as there is not enough scientific evidence to justify the risks over the benefits. I don't have any clotting disorders either. I should start with LDA with a positive pregnancy test. BP medications would not be given unless presented with higher pressures than normal. And apart from taking all the vitamins and medications as prescribed, and living a health lifestyle, getting all the pre-conception testing done, there is not much one can do.

What I found very important for myself is to be comfortable with the care I'd receive in a subsequent pregnancy. This includes the doctors and his staff and available medical care.
A subsequent pregnancy after experiencing PE and the loss of a child can be emotionally a very difficult time. Finding comfort in your every day life, and the right kind of emotional support I think is equally important. You seem to be doing all these things to get ready for trying for another baby. I hope you'll find the best solution for you and your family, so you'll feel comfortable and know you will be in a good place.

[lei.in.the.sky]

Thank you angieb, kerisue, aajatwins, sam10 for your responses and insightful advice.

angieb - did you pick up any portuguese in the Azores? I speak Portuguese. My evacuation could be set up quite quickly (again, if you got the resources, getting an ambulance is fast) and it would take 3 hours travelling by road to get to a NICU (in south africa) that can take a premie 24 weeks, and attempt to keep the premie alive. Plane evacuation is probably out of our budget (we would do it, but get into serious lifetime debt), and it would take less than an hour to arrive in johannesburg.

and yes, unfortunately the burden of pre eclampsia/eclampsia on maternal mortality is high here @ 16%. For the most part, public healthcare has limited resources (health centers sometimes face even sphygmomanometer shortages...to the tune of one to be shared by pre-natal consultation, post-partum consultation, triage) and a lot of hardships are faced by the local population of pregnant women (especially in rural areas and anywhere outside the capital city).

kerisue - Both doctor and I are hoping if PE sets in that it be later in the pregnancy...and he has warned me that I probability is high that i will not get to 40 weeks. So target for a full term baby in my case would be 37 weeks gestation. I am comfortable with that, it would be a blessing to avoid the 28 week mark and the 32 week mark .Thank you for the Lovenox advice. I am not against taking it, but it is good to know that since i do not have hypertensive issues now, that it is ok to receive meds only when the BP starts rising.

aajatwins - Congrats on your baby born @ 39 weeks and VBAC. Like i mentioned above, i have been given 37 weeks as max. time of gestation in the future....and VBAC, let me tell i am not sure i could attempt it. So it makes me happy to know you were so brave (in my book). I am on extra folic acid supplement (close to 800 micrograms during preconception), and doctor may increase once i get positive test and go to my first pre-natal visit. i am also taking 1000mg calcium (during my pregnancy the dose was 500mg).

sam10 - I am comfortable with my doctor, however, i must say that due to my loss i have a certain distrust built in...sucks to admit. My husband feels secure with him, which is good as well, and we have his contact details to reach him directly if needed (not the case with the prior pregnancy where anything required an appointment and sometimes this meant a delay in seeing the doctor). For what it is worth, i do feel in my gut he has my best interest at heart. He has asked that i settle for one doctor once pregnant, because if i begin to get conflicting advice, how will i proceed? He has a point, but i will probably be seeking second, third opinions anyway (in particular in the second trimester). to double check everything is fine. Paranoid, i know.


I feel very supported already by everyone in this forum, despite the fact i live so far away. I will be a regular reader of the forum, rooting for everyone to have healthy pregnancies, and thriving babies.

Hugs

Leilani's Mother