New here and really need support!

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here
onesock
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Re : New here and really need support!

Postby onesock » Tue May 19, 637998 11:26 pm

Hi Candy!! Welcome :) You will get lots of support and information here...we all know the scariness and fear of what you are feeling, so vent anytime!! I can particularly relate to the anxiety part...I never had it either until after my PE experience...I often think it is post traumatic stress, as no one (except everyone here) understands how traumatic, especially emotionally PE is. Glad you are here and that you continue to feel great :)

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caryn
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Re : New here and really need support!

Postby caryn » Sun Apr 26, 637998 11:52 am

Hi Candy, and welcome to the forums!

I'm just chiming in to agree that there's no solid data on prevention out there. There are some things that seem to lower risk somewhat, but we have posters here who've done all those things, and still developed PE.

Getting a MFM specialist who works in hypertensive pregnancies to oversee your pregnancy is the way to go. We know that PE and HELLP are pretty much just the result of your body's response to pregnancy, and in particular the pregnancy in which they occur. The best guess at this point is that they're an immune system response to that particular foreign placenta, where the mother's body begins to reject it (like it would reject a foreign kidney.) Sometimes this recurs in subsequent pregnancies, and sometimes it does not.

Eating right and exercising can get your body into good shape so that if you *do* experience problems, you're in the kind of physical shape that will let you recover more quickly from them, and MFMs have more tricks up their sleeves than regular OBs and will keep you from getting as sick as you got last time.

Here are some research links:

Vitamins C&E
http://www.preeclampsia.org/forum/viewtopic.php?t=21211
http://www.preeclampsia.org/forum/viewtopic.php?t=8612

Vitamin E alone
http://www.preeclampsia.org/forum/viewtopic.php?t=20508

Vitamin D
http://www.preeclampsia.org/forum/viewtopic.php?t=22897
http://www.preeclampsia.org/forum/viewtopic.php?t=24297

diet
http://www.preeclampsia.org/forum/viewtopic.php?t=24255
http://www.preeclampsia.org/forum/viewtopic.php?t=23462
http://www.preeclampsia.org/forum/viewtopic.php?t=20917

exercise
http://www.preeclampsia.org/forum/viewtopic.php?t=22704
http://www.preeclampsia.org/forum/viewtopic.php?t=13065

weight and multivitamins
http://www.preeclampsia.org/forum/viewtopic.php?t=17837

It'd be nice if there were something we could do "right", but I don't think anyone seriously suggests to people that anything short of immunomodulating drugs is going to keep their body from rejecting foreign hearts or kidneys, you know?

The fires didn't come too close to your house, I hope?

candysboys
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Re : New here and really need support!

Postby candysboys » Thu Apr 16, 637998 3:30 pm

Thanks Nicole! I can tell you so far that with the daily exercise and eating right I've been doing so far, I already feel much better than the last pregnancy. I'm hoping this feeling keeps up.

I'm in Santa Clarita, the Saugus area actually. Are you anywhere near by?


nborrayo
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Re : New here and really need support!

Postby nborrayo » Thu Apr 16, 637998 4:47 am

Hello Candy,
I had my second baby with no signs of PIH or HELLP. Here are my answers to your questions...
I know some (or all) of the things I did have not been proven effective in studies, but I did the following (with no support from my Doctor): I took baby aspirin in the 2nd and 3rd trimesters, got MUCH more exercise in my second pregnancy than in my first, took vitamin E, and tried to do the high-protein diet. The diet part I wasn't entirely consistent with because I just couldn't seem to fit all the food in... My midwife gave me a book to read on the high-protein diet, and it was from the 70's - ha ha
My personal feeling is that everything I did helped - especially the exercise - Also educating myself and getting copies of every lab that was done on me so that I could track it myself.
Best wishes! - BTW, I am in So. Calif. too! Where are you?



bellemama
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Re : New here and really need support!

Postby bellemama » Sat Jan 24, 637998 5:58 pm

Hi, Candy! I'm 28 weeks into my second pg after a scary HELLP story very similiar to yours.

No doubt about it, being pg after a near-death experience like that is stressful. My perinatologist told me something that made perfect sense to me: "You're never going to feel stress-free and relaxed about this pg. You're always going to be waiting for the other shoe to drop. And that's okay."

What I did differently this time is make sure that I found caregivers that had experience with high-risk pgs and were willing to both listen to me and work with me. I see OBs and also a perinatologist at the high-risk clinic. We set up a plan of action that included more monitoring, and had contigency plans in place. For example, I failed my 24-hour urine, so now I go every week. It hasn't been perfect (mostly because I see a team of OBs and one isn't quite on board) but I feel absolutely confident that between my own enhanced sense of empowerment (won't take "no" for an answer anymore!) and the drs. vigilance and awareness, things will not get as bad as last time.

As far as diet, exercise, supplements, etc. -- from what I've read, everyone here says, and my own peri told me, there's not much you can do other than just be generally healthy. This isn't about eating too many carbs or too much salt or not getting enough exercise. It's about your body's reaction to the process of pg. And high protein can be bad if you're body is prone to spilling protein anyway.

FWIW, my peri told me that because I have no underlying disorders (I went through an extensive pre-conception workup) my odds of getting HELLP again are less than 10% and my odds of developing PE and having another preemie are about 25%. Different drs. seem to give different odds, although most seem to agree that getting HELLP again is pretty rare.

The one thing I have done differently is try to de-stress as much as possible. Hard with work and a 3 year old at home, but it can be done. I personally don't think there's anything wrong with taking antidepressants or anti anxiety meds if you need them and work with your dr.

HTH!

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heather j
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Re : New here and really need support!

Postby heather j » Wed Jan 14, 637998 1:27 am

Candy,
Hi and welcome! Agreeing with Michelle about the protein diet; if it cured it or prevented it, we'd all be jumping on it! Seriously.

You're already seeing a peri, which is *the* best thing you could do in a subsequent pregnancy. The underlying disorder testing that Michelle mentioned is also something you would want to ask about if you haven't already. Aside from the trove of knowledge I collected before my second pregnancy, getting in with a good peri and being tested were absolutely critical in the success I experienced with #2. I was on lda once I day (and continue it today as a result of the thrombophilia issues) and lovenox once a day. Along with that, I received the best care around. Loved, loved, loved my team of docs this go 'round. The folks on this board and my peris are absolutely credited with Ella's arrival and my health in getting her here. Take some time, if you have it, and read through current and older posts - you'll find anything you need to know, and if you can't ... ask! Also, we'd love to see you in our 'pregnant again' forum; there are many girls over there who are sharing your experience right now. Take care of yourself, and I hope to see you around!

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julie f
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Re : New here and really need support!

Postby julie f » Wed Jan 14, 637998 1:22 am

Oh my goodness Candy - are we long lost sisters? I feel like I could have written many parts of your post...

I too was sent home from the ER when I had URQ pain, elevated liver enzymes, high bp and a +4 urine dip - docs said it wasn't a baby problem and I was just nervous... And, I can appreciate your health anxiety - I don't trust my body one bit. Also, I'm in Southern CA, maybe we were at the same hospital [;)]!

Anyway, you'll find that we can all appreciate your concerns and your fears here. Pregnancy after preeclampsia/HELLP is terrifying, the blissful ignorance is gone. My best advice is always to seek excellent medical care and to educate yourself about the disease - you're your best advocate. I know you are panicking about the what-ifs and believe me when I say we can all relate. Definitely discuss this with your doctor now though because there may be medications that might help you through this time. Also, while you are a high-risk patient, the "good news" about HELLP is that the recurrence rates are very low, around 5% I believe.

Have you been in to see a high-risk OB yet? If not, that would be my first suggestion.

Yep, definitely lots of conflicting information out there... Definitely don't do anything without talking to your doctor about it first. You'll find that we've had several discussions here on the high-protein diet that you've mentioned. I'll pull some links but if you do a search (upper right hand corner of screen) for "Brewer Diet," you'll find many links. Bottom line from my docs: higher than necessary protein is not a good idea, too much work on my already stressed kidneys. We actually have several women around here who have tried this and still ended up with the disease, I'm sure they'll be around to post soon.

As far as what can be done differently - a lot of it may depend on your personal situation. (For ex., Women found to have blood clotting issues are often placed on blood thinners, some are given baby aspirin.) Typically though, there isn't much in the way of prevention, more of reducing your risk factors I guess.

If there is anything that I can be of help with here in So Ca, please don't hesitate to email, julie@preeclampsia.org



emersons mom
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Re : New here and really need support!

Postby emersons mom » Tue Jan 13, 637998 11:56 pm

Candy,

just wanting to say welcome!!! I have heard of the high protein diet theory and that there is no real data to support the claims....I went through major guilt while my son was in the NICU with the "what could I have done to save him 2 months in the hospital" thing...and every supposed link to pre=e and hellp that I was guilty of made me feel worse! I try to focus on the fact that my son and I made it through as proof of miracles.....but also read enough to realize that my pregnancy was bad from the get go....i was lucky that i was sent to a peri that was knowledgeable about what tests to run and know that if i was ever pregnant again i would only consider a peri! Best of luck with your pregnancy! were you tested for underlying disorders?

candysboys
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New here and really need support!

Postby candysboys » Tue Jan 13, 637998 9:08 pm

Hi everyone! My name is Candy and I live in So. Calif. I have 2 boys, Austin who is 6 and Tanner who is 4. My first son was born at 40 weeks, although the last month I ended up with PIH, but with monitoring and bedrest I was able to make it to 40 weeks with no complications. My 2nd son was a whole other story. Like many of you I went through the nightmare of HELLP. It started off with upper back pain that was so bad it would keep me up at night. Then came a nosebleed, not like the little ones I get from my sinus problems, but a real gusher. Then came the worst pain ever..the epigastric pain. After dr.'s writing off the back pain as "normal pregnancy problems" I finally had enough when the epigastric pain started and told my husband something was very wrong and he needed to take me to urgent care. EVEN though I went in with high blood pressure and was doubled over in pain, the dr. looked at me and said I had acid reflux and that the high blood pressure was from the stress of the acid reflux. I looked right in his eyes and said "you mean to tell me that people with acid reflux are in this much pain?!?! He said sometimes people can get it pretty bad and sent me on my merry way and told me to elevate the head of my bed and take Tums. I felt like a whimp thinking I was in this much pain from acid reflux (come to find out that of common misdiagnosis of HELLP). That was Friday. Over the weekend it just got worse, and then started the nightsweats and vomiting. I saw my regular dr. that Mon. morning, and as soon as they got the results from my urine sample, I was rushed off to the hopital. Then like so many of you, I had the platelet transfusion before delivery, was completely knocked out during c-section and then afterwards spent 3 days in ICU and needed 2 blood transfusions. At 37 weeks I gave birth to a healthy 5 lb. boy and realized how lucky I am to be alive. In the months afterwards i started having severe health anxiety and after running to my dr. for every sneeze and cough and being so sure I had every form of cancer you can think of, he finally put me on Paxil, which truly changed my life.

So fast-forward 4 years and here I find myself pregnant again and I am so scared. It was not planned, but my husband and I thought we would give it one more shot and are praying for a healthy pregnancy. I have found a great new dr., one that is very proactive and puts me at ease. I know now that I need to take charge of my health, and would never let another dr. brush me off again. I'm also in the best shape of my life right now, I'm eating right and exercising daily, so I'm praying maybe that will make a difference with my outcome. I also am going to see a Peri on Dec. 5th and have a huge list of questions for him. I obviously came off the Paxil, but now my emotions are going haywire, and I feel like I'm going to have a panic attack everytime I start thinking of what "could" happen. Btw, I never had panic attacks before until after I had HELLP. Anyway, reading your stories, especially those who have gone on to have succesful pregnancies after HELLP, has made me feel so at ease. I'm hoping to find comfort here...I've tried to join other prenancy boards but no one really understands my anxieties or what I've been through.

I do have a question for those who have had succesful subsequent pregnancies...did you do anything differently the 2nd time around? Different diet, exercise or vitamins? I've done research and have read so much conflicting information. I also found a sight called Blue Ribbon Baby that claims a high-protein diet can help prevent pre-eclampsia and HELLP. Anyone heard of it? I really wish more dr.'s were more informed about HELLP.

Anyway, thanks for letting me vent. My due date is May 13th, so I'm hoping to find support here during that time.


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