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LETTER FROM THE EXECUTIVE DIRECTOR  

 

Five weeks ago, the Preeclampsia Foundation led a historic gathering of nine companies, as well as some of the leading clinicians and researchers in the field of preeclampsia. We also had leaders and front line obstetricians from outside the "inner circle" to ensure we weren't doing too much naval gazing.

 

This Biomarker Consortium was evidence of several of our core values: we wanted to be influential, catalytic and bold. As the patient advocacy organization caring passionately about improving pregnancy outcomes, we were uniquely positioned to invite and get positive responses from every company who has or is investing in biomarkers as a more advanced technology to diagnose preeclampsia or screen pregnant women for future disease. 

 

I was energized by the ideas and commitment in the room, by the spirit of collaboration and the recognition that together we can do much to advance the momentum and attention on preeclampsia. A report is being developed now, but even better, participants are continuing to generate numerous ideas about how to grow the consortium and develop themes and projects we can rally around.

 

Warmest regards, 

Eleni Tsigas

PATIENT EDUCATION  

 

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 anonymousely 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.
IMPROVING HEALTH CARE PRACTICES

A nurse from the University of Illinois Medical Center asked the Preeclampsia Foundation, "What do you think we, as nurses, could do to support patients when they are in a situation (preeclamptic pregnancy) similar to yours?" 

We wondered aloud and nearly three dozen survivors responded via Facebook and our online Community Forum to share their experiences and provide their suggestions to the nursing profession. While there was very vocal appreciation for the majority of nurses who have cared for our women, there were also many helpful suggestions. Based on patient input, here are: 

Top 10 Ways Nurses Can Support Preeclampsia Patients: 

1. Know the symptoms, educate your patients. Know how dangerous preeclampsia can be, know the full breadth of possible symptoms, and be proactive about diagnosing and managing it. The Foundation's motto "Know the Symptoms, Trust Yourself" is targeted at pregnant women, but as healthcare providers, you can help those of us who may not know the signs and symptoms.
 
2. Be willing to listen and learn. We know your shifts are busy and your demands are many, but listen to us, your patients. Don't ignore symptoms we report. Be willing to be educated and educate us also. Tell us about the Preeclampsia Foundation so we can get additional support and more information. 

3. Don't be a victim to common medical errors. Medical acuity is always important in the hospital setting. With a syndrome as complex as preeclampsia, the details definitely matter! Common medical errors such as taking BP in the wrong position, retaking it until you find a pressure you "like", or not staying on top of delayed test results, can add stress to our already traumatic experience. 

4. Be sensitive to vulnerable emotional states. Don't hold it against us or inadvertently make it worse. With or without perinatal loss, there is often great emotional strain on the patient and family; different family members may be feeling different emotions from one another (e.g., fear, sadness, anger, relief, emptiness, joy) or be focusing on conflicting factors (i.e., mom vs. baby). We do appreciate the care you are giving to us, but may not be in the best frame of mind to make that clear to you. 

5. Shower us with compassion and kindness. Even though some patients may drive you nuts with their demands and "high maintenance", survivors of complicated pregnancies have additional physical and emotional traumas, are often in severe pain, and are usually shocked by any bad outcomes during childbirth. Please show us extra compassion and be patient with our needs. Your actions will be forever remembered. Remember that magnesium sulfate makes us feel horrible! "I think it was the little things that I appreciated, like helping change my daughter's diaper or helping me with her first bath. That is stuff we really want to be a part of when we are feeling better and strong enough." "One nurse in the ICU washed and braided my hair for me - it was a small gesture, but it did make me feel a lot better." 

6. Be aware of post traumatic stress disorder (PTSD) risks inherent in complicated pregnancies. Even without longer term PTSD, there will likely be short-term emotional pain, beyond post partum depression. And the dads are not immune, although they may look stronger in the short term. Even without a formal screening process, nurses can play an important first line of defense to help us be aware of the impact preeclampsia may be having. 

7. Be aware of the impact that your shift and location changes can have on patients. As with any hospital patient care, there are almost always opportunities to improve team communication among healthcare providers, especially during shift changes, to ensure standards of care are upheld. In addition, if we're transferred post-partum to another ward, the original labor and delivery nurses can play an important role in the transition by sharing sensitive emotional care information to other staff. 

8. Be honest with us. Tell the truth . . . but with compassion, friendliness, and caring. Don't tell us not to worry, but tell us what we should be looking out for. 

9. Help patients and their families cope with a loss or having a baby in the neonatal intensive care unit (NICU). Nurses can devise a way to alert visitors and all health care staff that there has been a loss (e.g, hang a small wreath on the door) or that baby is in the NICU, preventing inappropriate comments and questions. Similarly, please be sensitive to what we may overhear from nearby happy-outcome families. "I was put on the ward with women who had delivered healthy living babies...that was the worst experience of my life. I thought I would die just from the emotional pain." 

10. Remember that your patients may be struggling with feelings of guilt for having failed at pregnancy. Nurses may directly or inadvertently contribute to this misplaced guilt by suggesting that we could have eaten more/less/different foods, exercised more/less, weighed more/less, etc.  "Bugging me over the should/would/could haves will only make things more painful!"  
PATIENT SUPPORT  

 

Keri developed severe preeclampsia at just 24 weeks pregnant and was forced to deliver her baby shortly thereafter. 


Her baby girl Millie was extremely premature and weighed just 1 lb. 1 oz. She needed intensive medical care and Keri was by her side day and night.

  

A few days after Millie's birth, Keri set up a CaringBridge site to stay in touch with loved ones. "I had so many friends, co-workers and family members who wanted to know how to support me and who were asking for information about how Millie was doing," said Keri. "One hundred percent of my time and energy - emotional, mental and physical - was being spent on my baby and I had nothing left with which to reach out to people."  

 

CaringBridge patient websites make is easy to share health news and receive support from everyone who cares. Using CaringBridge reduces time and emotional energy spent on repeated phone calls and emails and connects a person's entire support community. By following a few simple steps, a personalized website complete with privacy options can be started in just minutes. 


"Millie's page on CaringBridge was invaluable to me. It allowed me to easily share pictures of her and provide information about her status in the NICU," said Keri. "Even more important than that it allowed me to get support from so many others."


Every night after Keri returned home from the NICU, she would read the messages in the guestbook and take comfort in the words left for her there. "Never before did a few words from so many people mean so much to me," said Keri.


Millie put up a huge fight to stay alive. She made it through two surgeries, countless other medical procedures, and 25 days in the world when she should have still been in the womb. Unfortunately she passed away from renal failure brought on by extreme prematurity. Her CaringBridge site is now a bittersweet journal of her life.

   

"I would have no hesitation in recommending CaringBridge to other parents of preemies or to anyone facing a serious health event," said Keri. "I appreciate that even two years after my baby's death her page is still 'open' and there's no pressure to close it."

 

To learn more about creating your own CaringBridge site, visit www.CaringBridge.org. 

PATIENT SUPPORT  

Where Would I Be Without the Preeclampsia Foundation

 

It is the time of year where I spend quite a bit of time reflecting.  Since our son's angelversary was December 28th, it's natural to think not only of the past year, but also of the time our lives changed forever. It has been 7 years now since that day and I can honestly say that I would have never believed I would be where I am today. A few weeks after the loss of our son, I was researching on the internet to figure out what happened to me when I found the Preeclampsia Foundation. It was perfect timing to bond with other bereaved parents on the forums. I found healing through the community of sharing our losses and our grief. It was easier to bare knowing there were others I could turn to that had experienced the same devastation. I spent alot of time on the forums and through my time there was where I felt the need to give back. I made it through the blackest of days thanks to those ladies. I knew if I could do it, so could others. I not only wanted to help families avoid my heartache, but help those that that unfortunately found us the hard way. In doing so I found out that I healed more and more myself. The hard days became fewer and farther apart. Then once I started, I couldn't stop. I had to do more and more. Every time I read of another loss, I get mad and my determination doubles.


This past year, I was asked by a reporter where would I be without the Preeclampsia Foundation. I didn't have an answer for her and I've spent many months trying to put the response into words.  I can guarantee that I would have become a very bitter person towards anyone with simple and successful pregnancies. The volunteer work that I do has given meaning not only to my life, but to Cooper's. I refuse to let his life be meaningless. That desire has fueled plenty of sleepless nights thinking of ways to change the world. I have met any amazing group of women across the country that are now some of my closest friends. Even though most of them didn't suffer a loss, we are still bonded by harrowing pregnancy experiences. Almost like our own sorority. These ladies know deep down what it's like to have zero control of your situation. And I know that if I ever have another pregnancy, the members of the Preeclampsia Foundation will be there to support me no matter the outcome.  

 

Volunteer Nicole Purnell is the Preeclampsia Foundation's 2012 Volunteer of the Year.

JANUARY 2013
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Upcoming Activities

The Pregnancy Meeting 
Society for Maternal Fetal Medicine
Feb.11-15, 2013 

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Contributors

  
Heather Curtis
Angela Little
Melissa Maggio

Laney Poye

Nicole Purnell

Jill Siegel

Eleni Tsigas

 

Mission Moment

"Thanks so much for all that you do! The first time I had preeclampsia in 2000, I was 17 and I thought my extreme facial swelling was just
part of the weight gain of pregnancy. Since then your website
has helped me and others realize
that's not normal and that other pregnant women still looked like themselves other than their
bellies growing."

 

~ Rindy Reeder

via Facebook

YTD Volunteer Hours

It's only the beginning of January and our volunteers have already
reported a total of

88

hours

Thank You!

"When I Wish..." gifts from friends and supporters are so important to the health and progress of the Preeclampsia Foundation.

Thanks to you, we realized a

33

percent

 

growth in end-of-the-year gifts!

We're now poised to make an
even bigger difference in 2013.

 

You can still make a donation here.