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My favorite e-patient t-shirt and my favorite son

@yogileana in #epatient tshirt and her son – the result of being an e-patient #s4pm

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Regina Holliday’s Two Stories Jacket and Preeclampsia Awareness Month

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Regina Holliday #thewalkinggallery

One more time last night, I was in tears, tears of joy and disbelief. Tears that my baby is six, and as healthy as can be. Tears that he can sing and make jokes and play with his friends and be told by girls that he’s so cute.

It happens to me at every party and school concert and every milestone.

See, I have two stories in my mind all the time. Due to Regina Holliday and her #TheWalkingGallery I also have them on a jacket and I’m proudly wearing them at every health IT conference that I go to.

But back to my story… On my first pregnancy, I had preeclampsia. For me this was the disease that happens at the end of pregnancy and makes “them” decide to do a c-section instead of a vaginal delivery. Even though I was at risk for it, I was not told what to look for and what it is until I got into the hospital at six months with dangerously high hypertension. My first baby was stillborn and I was in the hospital really sick for another week after that.

One can imagine the fear, trepidation and amount of reading that we went through before and during our second pregnancy. My second son was delivered safely at 8 months and is as healthy as a kid can be. I still had high blood pressure throughout my pregnancy, but always knew what symptoms to look for.

 The Preeclampsia Foudation is an amazing organization where we went for information and emotional support. They are a source of engagement and empowerment of women to learn and know more about their health during pregnancy and beyond. It is Preeclampsia Awareness Month. Please head over and learn a thing or two. You might help a pregnant woman in her time of need!

A nice touch was the last ACOG meeting that recognized the importance of preeclampsia.

E-Patient or not?

A discussion on the Society for Participatory Medicine’s list serve (http://participatorymedicine.org/) made me realize that I used to have white coat hypertension, but I don’t anymore. It might be that I am old enough that my doctors are about my age or younger, but I think it’s more of the kind of e-patient I became. I would have always called myself an e-patient because I always looked up my conditions and drugs on the Internet. But how engaged was I in reality?

In my first pregnancy, I thought I read everything that I could get my hands on: books, websites, etc. We  used to say that “we did everything right”: had a physical before getting pregnant, ate well, started doing yoga, met my ob-gyn, took prenatal vitamins. I did not realize that I easily overlooked the warnings, and simply listened to the optimistic messages in pregnancy books and on websites that preeclampsia happens at the end of the pregnancy and that you just get a c-section and it’s all fine. Whenever a test or doctor report mentioned preeclampsia, I brushed the thought away because I was not at the end of the pregnancy! I never explicitly looked up details. I brushed off the doctor’s reports about “poor prognosis”.

After the end of my pregnancy, we learned all that we could about preeclampsia: we poured over the Internet, talked to others that had it, read the research, found the best doctors specializing in the disease. Again I would call myself an e-patient, and I knew so much more this time… But still, this was the time of my “white coat hypertension”. While some doctors encouraged my participation and made me feel at ease co-managing my pregnancy, other nurses and doctors tried to demonstrate that my charts were not necessary and that I was overly anxious over no problems. I wasn’t overly anxious about my pregnancy, but I was about my relationship with my doctors, and I realized that this caused communication issues that could lead to problems.

Finally, I now have no white coat hypertension, I found doctors that would listen to me, that I communicate with well. Again I’m calling myself an e-patient, but what a difference from my old self that just read whatever was convenient or my other self that wouldn’t complain or communicate to her doctors. 

And I still think I have a fourth level of activation ahead of me: the one where my communication to my doctors is seamless, happens in and out with a simple email or electronic messaging, with online tracking tools, where my doctor would know how much I exercise, how much I weigh, what by blood pressure is, what my blood glucose is or any other measurements that are important for me… I could get encouragements outside the visits, I could ask for advice as I need it.

My physician colleagues at the Society for Participatory Medicine (http://e-patients.net/) will tell me that there are not enough doctors to do this kind of monitoring and communication, but I can still dream!