Saturday, May 4, 2013

Preeclampsia Awareness: Preeclampsia and Denial

May is National Preeclampsia Awareness Month, yay!  I've already done posts on my personal experience with preeclampsia, so this time, in honor of Preeclampsia Awareness, I thought I'd write about "Preeclampsia: The Disease Nobody Wants to Have."

The Preeclampsia Foundation describes the symptoms of preeclampsia as follows:

Some women have no symptoms, and others have atypical symptoms like liver pain that presents in an unusual place.  Women like myself always have an impending sense of doom, so a sense of impending doom isn't really helpful as a diagnostic clue.  All of these symptoms are also experienced by some women who go on to have uneventful pregnancies.

The ordinariness, vagueness, and inconsistencies of preeclampsia symptoms present a lot of problems for pregnant women and health care providers.  When my blood pressure first started rising around week 24, my providers took notice, but they also suspected because it was so early in my pregnancy that I likely had PIH rather than preeclampsia.  They told me to take it easy, eat calcium-rich foods, and monitor my blood pressure at home.  They also ran a pre-e blood work panel, which came back fine.  In retrospect, I think I received good care, but I wish that they had had me come in for an office blood pressure check once a week.  It was too easy to explain away my high BP readings at home (I had the cuff too tight, I just walked up the stairs), and when at 27 weeks, I had an in-office reading of 160/100 I had absolutely no idea that I was doing so poorly.

  • I don't want to be a baby about it.  Looking back, my biggest symptom of pre-e was exhaustion, but I kept going.  I'd taken on extra work to build up our savings.  I did multiple weekend of work travel.  I don't think being crazy-busy caused preeclampsia, but I wished I had listened to my body more and rested more.  In the big scheme of things, none of that work stuff really mattered, but at the time, but I didn't want to be a baby and say "I can't do that because I'm pregnant and exhausted."  Note to self: don't lean in.

  • I'm healthy (thin, fit, eat a great diet, eat tons of protein, etc., so I can't have preeclampsia).  Being overweight is a risk factor for preeclampsia.  Many women, particularly in natural birth circles, extrapolate this fact to mean that thin women who eat a natural foods diet can't get preeclampsia, or that preeclampsia can be cured by eating certain healthy foods.  I am a thin, healthy woman, who ate a high-protein natural foods diet before and during pregnancy, and I got preeclampsia.  Any pregnant women can get preeclampsia and all the hard boiled eggs in the world won't change that fact.

  • I don't want to have to change my birth plan.  I did not want to have a c/s.  I did not want to have a medical birth.  Although I planned to birth in a hospital with midwives, I was terrified of the hospital.  And then I got very sick, and much like my worklife, my plans for the birth didn't matter as much as staying alive.  I consider myself very lucky to have been a baby friendly hospital where staff was used to working with women who wanted natural births.  If you are sick and have to change your original plans, do look for the best options in your area for providers and hospitals that respect women.  Don't deny/downplay/ignore your symptoms in hopes that you can stick with your original plan.

  • I don't want to be pushed into a c/section or induction.  As a patient you have the right to know your options and to receive factual evidence about those options.  You should not feel bullied or railroaded (another reason it is important to have a provider and hospital you trust).  There are doctors out there who might jump the gun too soon for minor symptoms of pre-e.  They might do this for understandable reasons-maybe their last preeclamptic case was a bad one, or for self-interested reasons-the classic combo of convenience and defensive medicine.  As patients it's not our job to manage all the complexities of pre-e, so you really, really need a qualified, ethical, and decent provider who will act with your best intentions at heart.  I did not have the birth I had wanted, but I always felt that my providers were acting in my best interest, and that made me feel better about the experience.

  • My doctor says I'm find and I don't want to be a whiner.  This wasn't my experience, but a significant number of women report being ignored or having their symptoms downplayed.  This story is a harrowing example with a happy ending.

  • That blood pressure reading was just a fluke.  Yeah, I said that a lot.  My retrospective advice: keep a log of your BP readings, ask to have an in-office reading at least once a week, and call your provider any time that your reading is over 150/90 (or whatever numbers they give you for your threshold).  Also call in and report any of the symptoms on the big list at the top of this post.  When in doubt, get checked out.

  • I feel fine.  Even though I was exhausted in the days before I ended up on hospital bed rest, I basically felt fine.  In the hospital, I basically felt fine.  I had no swelling, no headaches, just some bad heartburn.  I really don't like to think about how things might have gone, if I had trusted the way I felt rather than my blood pressure readings and blood work.  It was really only in the day before I had LB that I started to feel bad, and even then it was a non-specific bad, likely due to my rapidly dropping platelets.
I wish no one needed this post, and I wish that there were more resources for women with preeclampsia or possible preeclampsia.  The fact that this little blog gets so many hits from people searching for preeclampsia info suggests to me that there is still a dearth of information.  I'm wishing all of you safe passage this May.

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