What was your experience with preeclampsia?

In my first pregnancy I wasn't worried about PE at all; everything was going smoothly until 31 weeks when, at our last childbirth class on a tour of the hospital's Labor & Delivery (L&D) ward, I started having painful contractions. We ended up calling my OB from the hospital parking lot and she told us to go back up to L&D where they hooked me up and determined - yes - these were real contractions & I was starting to dilate. Many hours of monitoring and couple shots of terbulaline later they sent me home. I ended up at my 37 week appointment, being sent over to L&D for an induction because of preeclampsia.

How aware were you about preeclampsia before/during your pregnancy?

I'd never really heard of preeclampsia before my first pregnancy. During my pregnancy as I started having high BP sometime around 34 weeks it got mentioned and I knew there were some things to watch for and to call in about. But no one ever mentioned that upper right quadrant pain was not normal.

My 2nd pregnancy was pretty uneventful, and even with mild high blood pressure, I made it to a planned induction at 38 weeks. I wasn't planning a 3rd pregnancy but a couple weeks after our 2nd daughter turned 2, we found out SURPRISE, I was pregnant! I was kind of panicked about a pregnancy starting with chronic hypertension, so I went looking for information and stumbled across the Preeclampsia Foundation forums.

Unfortunately, even on BP meds, my BP kept rising. Around 32 weeks, I started getting headaches and at 34 weeks I made my 1st trip to L&D because of it. They monitored me for a while, gave me pain medication & said it looked like things were heading downhill. It was Christmas and I desperately wanted things to be "normal" and be at home with our two other girls who were 4 and 2 so I took Darvocet to deal with the persistent headache and stayed home. In hindsight, this was a totally stupid plan!! I just thought if I could hold out until the 26th everything would be ok.

On Dec. 26, we went to my 36 week appointment and my OB took one look at me and sent me straight over to L&D. Our baby was born just after midnight early on the 27th. Her lungs were mature & she never needed any help breathing. I was discharged with really high BP (even on my BP meds) with the nurses telling me it was just because I was stressed about leaving my baby there. I ended up going back to the ER the next night with a headache worse than anything I'd had while pregnant (which I didn't think was possible!) and really high BP. We spent all night there, I got IV BP meds and morphine shots (which just took the edge off the pain) and went home in the morning with a prescription for an additional BP med. Over 4 years later, I still take a high dose of 2 BP meds. Last year I was diagnosed with Rheumatoid Arthritis so it's possible that was an underlying factor in my having PE 3 times. But our 3 girls are healthy and for that I am truly grateful.

Why do you volunteer for the Preeclampsia Foundation?

I volunteer because the Forums were my lifeline for information, support and sanity during my 3rd PE pregnancy. I know how much they helped me and I see how much we help families every day.

What are your goals and dreams for your involvement with the Foundation?

We live in Oklahoma City and I am very happy that we are getting our own Promise Walk this year! We've done the walk in the Dallas-Ft. Worth area for the past 2 years and plan to do it again in May. My mom and dad donate and come to walk with us because they are so grateful to the PF for what they've done for our family. I can only hope that our fundraising efforts can find a cure.

What has been your most gratifying moment as a Foundation volunteer?

There have been several times as a forum moderator that I have checked for updates first thing in the morning, or stayed up late hoping for an update from one of our posters going through a difficult PE pregnancy. I worry about them like they are family. But it makes me realize how much good we're doing when a member says that she credits us (the forum and the Foundation) for saving her life and/or the life of her baby with the information and support we gave her.

 

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Our Foundation has a growing mission to emphasize the need for monitoring and care for hypertensive moms postpartum for physical AND emotional needs. We asked our Facebook Followers these questions, in the wake of THE DAILY BEAST's recent article: "Why Are America's Postpartum Practices So Rough on New Mothers?"

  • Are the US's postpartum practices too trying on new moms?
  • What did you think of your postpartum experience?
  • What would you have done the same or differently?

We received multiple comments on Facebook and then set up a discussion in the Community Forum on our website. Many of you had both good and bad experiences during your postpartum period. For example:

I was lucky to have my mother in law's support for two months. Severe postpartum PE took nearly all the wind out of my sails.
I spent the 60 days after an emergency c-section under general anesthesia going back and forth to the NICU to visit my child. Restful, recuperative--no. So stressful.

We heard reports of going home from the hospital after preeclampsia and delivery only to have to return days later with postpartum preeclampsia. We heard reports of blood pressure becoming a chronic problem after delivery and concern over lifetime blood pressure challenges. And, there were reports of grief and depression. For example:

At my 2-week postpartum checkup, my doctor said everything looked fine. The very next day I was in the ER with kidney failure and congestive heart failure.

What's not fair is losing my baby due to severe preeclampsia and then not only do I not have a baby here with me, but now I have blood pressure issues. Constant reminder of my baby being gone because of preeclampsia. On top of high blood pressure has been everlasting depression.

One thing we know from the tens of thousands of posts made by participants of our Community Forum is that you really appreciate the support of others who have had similar experiences. Another thing we know is that you like the advice of other moms, not just medical experts. We recommend you visit the conversations in Ask the Experienced, and share your postpartum experience at Postpartum Experiences in the US: Are they too trying?
 
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"Loss makes artists of us all as we weave new patterns in the fabric of our lives."~ Greta W. Crosby, Author of Tree and Jubilee, a book of meditation

Writing about any situation will help you gain perspective on it. Many people find they can identify and express their feelings through journaling. This expression not only contributes to our self-awareness, it also contributes to healing through the letting out of emotions, self-acceptance, and the identification of any negative self-talk patterns that we should and can intentionally replace with positive thoughts.

We get to revisit and revise our thoughts as they ebb and flow. We get to acknowledge our sorrows; speak to, honor and love those we have lost; and find meaning so we can move forward with hope and strength. Writing need not be confined to prose. Prayers, poems, favorite quotations, and drawings often take wing on the pages of our journals.

We invite you to share your writing in the Writing Heals Forum on www.preeclampsia.org.

 
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The "Ask the Experts" section of the Preeclampsia Foundation's Community Forum has 318 questions answered by members of our medical board - top researchers and clinicians in hypertensive pregnancies.

Readers often visit this section, not for definitive answers to any one particular question, but to provide spark ideas about other topics or terms to search, and especially new questions to ask your doctor. The Experts answer anonymously and do not give medical advice on any specific case, but they do contribute to the ongoing discussion of preeclampsia-related topics. Information in the older links may not always reflect current understanding of the disease or today's management practices.

Here are Forum Director Heather Curtis' top 5 tips for using our free service, "Ask the Experts":

1. Read the topic "headlines" for the questions that have been asked. When I first started reading I would just browse and read through the links that looked interesting, that were similar to questions I had in my own pregnancies, or that brought up concerns for me for future pregnancies. For example, Current thinking on low-dose aspirin? and Surrogacy and preeclampsia.

2. See if your question is a Frequently Asked Question (FAQ), first topic in the list. That's a rich repository of solid answers that may meet your need without looking at some of the other more unusual topics.

3. Look at the number of replies. Most topics have only one reply - and often only one is needed. But I always enjoy the topics with more than one reply, to see how the experts agree or disagree, who is able to write most clearly, who touches on the more complicated aspects of the disease and treatment, and who tries to make their answer the most clear while glossing over the complicated variations. It's like watching a live political debate! Topics that have 7+ responses are common questions with often contested answers. These situations allow the Experts to share their opinions and data, rather than depend on individual experiences with doctors who may not be aware of the most current research and clinical practices.

For example, many doctors still prescribe lovenox/heparin, but the Experts' opinions range from guarded acceptance in only certain cases, to limited hope that it will make a difference, to one Expert who noted that for current clinical use "Any suggested benefit will be based on junk science and dogma."

4. Search using keywords other than just "high blood pressure" or "proteinuria." I've found interesting information using "superimposed" preeclampsia, and "unmasked" chronic hypertension. Sometimes I remember keywords from previous browsing sessions. Often silly words like "Wyoming" or "flight" or "full deal" will get me to the answer I remember more quickly than a more common term.

5. Search using keywords from Forum questions. New questions in "Ask the Experienced" or other areas of the forum will make me remember an "Ask the Expert" response or will spark my interest to start new searches. A recent question made me think of "kidneys" as a keyword. The search returned 22 options. I read them all to get an overview and to find commonalities in the answers such as terms and information. I then drilled down to figure out what keywords to search next.

Searching on "kidneys" demonstrates why an oft-repeated myth can be dangerous. Many women report that their protenuria decreases while on bedrest. This link explains why and cautions against false reassurance. Searching on "kidneys" also gave me links to share with women who have been afraid of lasting kidney damage from preeclampsia.

Finally, the Experts volunteer their time so we have a "gatekeeper" system to keep the same questions from being asked repeatedly. In those cases, we answer frequently asked questions with consolidated information previously provided by the Experts. You can also ask your question in the "Ask the Experienced" section of the forum and your fellow survivors will share what they have read and experienced.

How have you used the "Ask the Experts" archives? What have you learned from reading their responses? What are your favorite links?

Heather Curtis is the Community Forum Director and provides a wealth of history and information about preeclampsia. Visit the Forum to learn more from her and the other trained moderators.

 
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The Preeclampsia Registry

    The Preeclampsia Registry is a "Living Database" bringing together those affected, their family members, and researchers to advance knowledge and discover preventions and treatments for preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy.

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