That was my goal with the once-in-a-lifetime opportunity I was given to present one of three President's Program lectures at the American College of Obstetricians & Gynecologists' Annual Clinical Meeting.

"Patient Perspectives on Preeclampsia" - or as I joked, "lessons from this side of the stirrups" - was well-received by the standing-room-only crowd in the main auditorium of the San Diego Convention Center. More importantly, the many comments I received after the lecture satisfied me that I achieved my objective - to reach their hearts with compelling, real-life stories illustrating the impact preeclampsia has on mothers, fathers, and babies; and to reach their minds by inspiring clinical practice behaviors that include educating each and every expectant mother with non-alarmist, but sound information about the signs and symptoms of preeclampsia, as well as addressing the psychological and long-term physical impact of the disease. (Presentation available for purchase)

If you have ever shared your experience with us, know that you, and the stories of 10,000+ other women, were with me in spirit on May 7. The ACM News wrote about my presentation and the other two preeclampsia lectures (delivered engagingly by renown preeclampsia researcher Dr. James Roberts and clinician Dr. John Barton).

The awareness and education theme was echoed in a Foundation news announcement at the San Diego Promise Walk. With co-authors Dr. Doug Woelkers and Ms. Jennifer Carney, we announced our official list of the Top 10 Pregnancy Guidebooks. This report was created using five criteria designed to ascertain how well the books treated the topic of preeclampsia in a way that would be useful to the one in 12 pregnant women whose pregnancies become complicated by it. Several of the top guidebook authors have already contacted us, thankful that their diligence has been recognized, even while women's real-life feedback has reinforced our findings that the bestsellers aren't always the best books.

And although I'm no Twitter expert, it was fun to join College staff and two Ob/Gyn physicians on a Twitter Chat on preeclampsia that resulted in tens of thousands impressions, and to shoot a quick interview that was aired onsite for the 5,000+ people in attendance.

By all accounts, the entire experience left us all exhausted, but exhilarated. We frequently tout the importance of a patient-provider relationship and it was abundantly evident that the country's leading Ob/Gyn organization shares this goal. We are very grateful.

 

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The October 2011 issue of Expectations (featuring patient-centered care month) highlighted two powerful, silver-screen accounts of parents confronted with the unthinkable: a child's health crisis with no known cure leading doctors to tell them "there is nothing more we can do." Those simple words - and the prospect that there was no hope - prompted these every-day parents to take on the most important "projects" of their lives: saving the lives of their children.

These extreme examples of patient advocacy provide a humbling reminder of how important our own voices - and understanding of our conditions - are in our individual health care (during pregnancy and otherwise).

In thinking about patient advocacy in relation to my own pregnancy, I am ashamed I didn't ask more questions when I was ordered to take my first (and then second!) 24-hour urine test. I didn't know that a 24-hour urine test wasn't routine, and my doctor was certainly not offering up any unsolicited explanation. I was too shell-shocked to ask any intelligent questions when she took my blood pressure a few days after I returned my second urine sample and simply told me I had "earned a vacation in the hospital." In my recollection - and that of my entire family, who shared in all the details of my pregnancy and have since been grilled on this subject - there was no mention of the word preeclampsia or HELLP syndrome until much later.

Those were the opportunities I missed. It wasn't until weeks later when I had come out of a coma and begun recovering from multiple organ failure that I saw a glimmer of my ability to advocate for myself. Growing tired of the feeding tube that was giving me sustenance (and a very obvious indication and reminder of my less-than-hopeful situation), I became committed to getting it out. I lobbied my doctors for a follow-up swallow test in the hopes that this would be the one that I would pass. I did, the feeding tube was removed, and it wasn't much longer until I was home, caring for my baby daughter, and back to a "normal life." Ultimately it was an important milestone representing the first step I could take toward setting my own recovery process.

CNN medical reporter and author Elizabeth Cohen advocates for making sure we get our business "DUN" when at the doctor's office: find out our diagnosis, understand the plan to make us better, and learn the next steps toward feeling better. She recommends the following simple questions to get the ball rolling and to gain clarity on our personal health status:

  • What's my diagnosis?
  • Which drugs should I take, if any?
  • Are there any other treatments or instructions?
  • Do I need a specialist? If so, do you have a specific recommendation?
  • How long should I wait for this treatment to work?
  • If my problem doesn't get better in that time, what should I do?
  • Am I awaiting any test results? If so, when are they due back in your office?


And, during pregnancy, the following questions may be important to ask:

  • What was my blood pressure?
  • How much protein was in my urine today?
  • Does my weight gain over the last few weeks seem okay?
  • What other symptoms should I be looking out for?

I asked none of these questions and didn't appreciate enough how the age of managed care, rushed doctor's visits, and healthcare reform might be affecting my pregnancy. It wasn't until much later when I needed hope that I began advocating for myself. Now more than ever, though, we all need to prepare to work with our doctors to get the best care we can - and to have hope that there can be a positive outcome.

 
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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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Findings from several studies support the hypothesis that stress caused by a traumatic pregnancy and delivery can often override the ability to emotionally cope, leading to psychiatric complications such as post-traumatic stress disorder (PTSD) and post-partum depression (PPD). The combination of suffering a serious illness, combined with an unexpected caesarean section, birth of a premature child, or infant loss, is a heavy burden to bear both physically and psychologically.

Preliminary research findings, including a study initiated by the Preeclampsia Foundation, suggest that women who have endured traumatic pregnancies such as severe preeclampsia, eclampsia and HELLP syndrome have a higher incidence of PTSD and PPD than women without these complications. More research is needed to help move this information to clinical practice, but anecdotally enough of our survivors are impacted, that we offer these recommendations based on general trauma recovery practices.

Be patient. Recovery is an ongoing process with a different pace for everybody. However, if you are unable to care for your children or basic responsibilities of life, you should seek professional help. Coping mechanisms that may work for you may not work for your spouse or other family members, and vice versa. Healing doesn't mean you will have no pain or bad feelings when thinking about the pregnancy experience, but that you can develop more confidence to be able to cope with your memories and feelings.

Understand your pregnancy experience. Communicate with health care providers to understand the medical and emotional aspects of the experience. If necessary, ask to be referred to a qualified counselor. Whether you are dealing with the loss of a child, the loss of your health or the loss of your “sought after” pregnancy experience, mental health professionals can help you recover normal functioning in life skills. Plus, the Preeclampsia Foundation has great online and print health information resources for you and your family.

Stay connected. Research shows that good social support is vital to recovery. Stay connected in particular with your family and friends. You might also consider joining a support community, whether it is signing up for the Foundation’s Community Forum (www.preeclampsia.org/forum) or contacting your local health department or hospital services for a grief support group. Also, don’t forget that if you are in a relationship or married, severe trauma can be challenging to both partners, so be proactive to strengthen that vital relationship.

Find a great hobby. Not only does it boost your self-esteem, you will connect with people who share interests that are outside of your pregnancy experience. Find a subject about which you are knowledgeable and passionate. For instance, many women find comfort in the life-affirming aspects of nature: go for walks, start a gardening project, or volunteer at a local park or animal sanctuary.

Keep a journal. By writing things down, you can temporarily dissociate yourself from the world and start to chart your road to recovery. Write in it every day, even if it is only to state three good things that have happened that day.

Set goals. Start by setting small goals and commit to doing it. Make a list of all the things you used to enjoy and revisit them. Decide which one you are going to focus on and make a small start. Someone close to you can help you be accountable for your progress… or even join you to complete those goals!

For more information about PTSD or PPD research, or citations for these recommendations, please email info@preeclampsia.org.

 
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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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