Your Most Important Health Advocate by Jill Siegel

Posted in Raising Awareness and Fundraising on

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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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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