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Elizabeth Cohen, a senior medical correspondent for CNN and preeclampsia survivor who spoke at Saving Grace - A Night of Hope in Washington, DC in 2008 has authored a new book entitled The Empowered Patient: How to Get the Right Diagnosis, Buy the Cheapest Drugs, Beat Your Insurance Company, and Get the Best Medical Care Every Time. Expectations spoke with her about the book and how it came to be.
You, like the Preeclampsia Foundation, make a strong case for patients being active advocates for their own care. As a woman who experienced a pregnancy gone awry, what advice do you have for pregnant women, particularly first-timers, who may not know what "being pregnant" feels like?
What I learned from my experience is that if you don't feel well, you should go to the doctor. I felt terrible but I figured it was because I was 8 months pregnant. It was Atlanta, it was hot. I just had this sudden change and I had to haul myself into work and I usually have a lot of energy. Friends and my husband told me to go to the doctor. In my mind, I just saw the doctor 2 weeks ago and everything was fine. I didn't realize how quickly things could go wrong. At one point, I had to go back to the maternity store every two days, but I just thought I was eating too much. Looking back on it, I should have known. Now if my friends aren't feeling well, I tell them to go to the doctor - you will never regret it.
What were you thinking when you were immediately admitted to the hospital? What should patients keep in mind as they try to deal with sometimes unexpected, troubling information being thrown at them and maintain the role of advocate?
I didn't feel like a lot of information was being thrown at me. In the very beginning I was in denial. I had had such a perfect pregnancy that I couldn't understand how things could go wrong. After the birth when things went worse and I couldn't move my limbs, my husband and I realized how horribly things could go with the pregnancy. At the hospital, it took them way too long to get me the calcium. But, we figured that they knew what they were doing, but that wasn't the case. They just goofed and that happens at hospitals more than we think.
How has being a preeclampsia survivor aware of long-term outcomes on cardio-vascular health impacted your relationship with your own doctors and the care you demand from them?
I am very careful to do two things: keep my weight down by exercising a lot and going to the doctor for checkups. I have read studies about what happens to women in later life. But it doesn't help to sit here and think, "I am doomed." I eat right, exercise, and get cholesterol and blood pressure checks. I don't want to freak out about these things.
You presented a very compelling case for being an empowered patient to a very responsive audience at Saving Grace in 2008; have you gotten similar reactions from other groups? Do you find certain types of patients in greater need of your advocacy message?
People who have unusual diseases really need to work hard to get to the right kind of doctor. Also, people with diseases that have multiple ways of treating need to learn about all of their options. What your doctor says is not the only option. Asking, "Are these all my options? Is there anything else," is very important. Patients should let their doctor know that they understand what the provider would like them to do, but also that they want to know what the other options are - including ones that the provider may not do. Sometimes doctors explain just what they do, not what all the options are.
There is a way to partner with your doctor and you want to work with them to explore all the options to get the best care you can. If your questions are offending your doctor, you may not have the right doctor. The truth is the truth. In my case, a wonderful doctor saved the day. Sometimes doctors save the day. Doctors have saved my life; but sometimes they goof. We should all feel comfortable saying that. Rather than feeling offended we should talk about how to figure out how to make sure it doesn't happen again and that patients get the best care possible.
One thing that was so powerful for me about the Saving Grace event where I spoke was that, until that moment, I had only spoken to one other preeclampsia survivor. I met her 13 years ago when I was still in a wheel chair because I was too weak to walk on my own. I was trying to read my daughter's chart and this other young woman had had her baby even earlier than me and she came over and helped me read the chart. She told me, "You will feel better. I know how you feel now, but you will feel better." That was so powerful for me. One of the things that I learned is that it is so powerful to talk to other survivors and hear their stories. It is wonderful that the Foundation exists. In 1997, the Internet was only beginning, so it is fabulous that the website is such a resource now.
Women's Health Registry Alliance
April 6-7, 2017
Alliance for Innovation on Maternal Health
April 10, 2017
Association of Women's Health, Obstetric, & Neonatal Nurses
April 25, 2017
Monroe Township, New Jersey