Posted on in Health Information

<p>Awareness that good outcomes don't always happen helps us prepare while hoping for the best.<a href="/component/lyftenbloggie/2013/03/04/173-awareness-that-good-outcomes-dont-always-happen-helps-us-prepare-while-hoping-for-the-best" target="_blank"></a></p>
<p>Just because a pregnancy is classed as high-risk doesn't mean that it will become medically complicated - and just because a pregnancy is classed as low-risk doesn't mean that it won't. Many of us know this firsthand; we were low-risk right up until the complications developed in our first preeclamptic pregnancy, or went into a subsequent pregnancy classified as high-risk, only to breathe a sign of relief as we delivered a full-term healthy baby.</p>
<p>We've all seen the list of risk factors for preeclampsia: first pregnancy, personal or family history of preeclampsia, underlying conditions like chronic hypertension or lupus or autoimmune conditions, obesity, history of infertility or prior miscarriage. Awareness of your own risk factors is key to managing them prior to and during pregnancy and might lower your risk. For example, chronic hypertensives have a one in four chance of developing preeclampsia, and if they do develop it, their risk of stroke is probably lessened if they began pregnancy with well-controlled pressures.</p>
<p>Knowing how to access care providers who specialize in medically complicated pregnancies is another sort of awareness. Do you know where the closest NICU is? Do you know how to find a maternal-fetal medicine specialist who conducts research into HELLP syndrome? Do you want to plan to move closer to a particular hospital during your third trimester because of your history and the distance?</p>

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Be aware of your long-term health risk factors and communicate them.

We've all seen the risk factors for cardiac disease: high blood pressure, high cholesterol, inactivity, obesity, smoking, and history of preeclampsia. Awareness of your own risk factors is key to managing them as you age and might lower risk of cardiac disease.

A recent analysis of the accuracy of our recall of our pregnancy histories by a team of researchers at the Harvard School of Public Health showed that we may not remember our complicated pregnancies well enough for questions about them to be a useful part of a screening tool. For our recall to be useful as a clinical tool in screening for heart disease, we need to be mostly accurate in our recollections years after delivery. (Imagine a 55 year old in her internist's office this week, asked for details of her pregnancy 30 years ago...) But the analysis also showed that as severity of our pregnancy complications increased, accuracy of recall also increased.

Regardless of whether or not a question about our pregnancy history makes it into a formal screening tool, our awareness of our histories and the risks they pose, communicated to our care providers, is another key to good healthcare. Those of us who do remember, or who have our records, can communicate this risk factor to our care providers and ask for appropriate support.

Knowing how to access lifestyle management tools is another sort of awareness. Do you have a plan for gym time? Do you need statins? Have you had your health evaluated by an internist or cardiologist who knows of your pregnancy history and who understands that your history increases your risks?

 

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By Quincy Fleming ~ Physical activity is something that my husband and I have always enjoyed, so it is only natural that my children have also gravitated towards endurance sports. It takes a lot of time and creative scheduling to get workouts in, but instead of trying to keep the workouts and family time separate, we find all kinds of crazy ways to include our two children. In fact, my husband and I are currently training for an Iron Distance Triathlon. Why, you might ask?

My children and I are preeclampsia survivors. And while we are lucky to have escaped with our lives, our health, our sanity, I know that we are at a heightened risk for heart disease, diabetes, obesity. It seems every lifestyle disease out there carries an extra punch for us. So we asked ourselves: why not embrace healthy lifestyles and exercise as part of our everyday family time?

Unfortunately, because the life that includes raising small children is demanding and time consuming, physical activity often becomes viewed as an adult selfishness to be discarded in favor of doing "more important" things for our children. But taking care of yourself IS doing something for the children. And more importantly, is setting an example for your children.

So from our active family to yours, here are some strategies to get the whole family moving:

1. Go somewhere fun for the kids and have Mommy and Daddy take turns getting in a workout. Summers at the beach is a great opportunity: one of us will start out with the kids building sandcastles and playing in the waves, while the other one goes for a swim, bike, or run, then switch. And be sure to remember to spend some time together, too!

2. Plan a day trip or vacation around physical activity. I am not suggesting you take the kids biking in the Alps here. (Actually, I am... that would be awesome! Can I come along?) But you could definitely tour a place by walking or biking, or, incorporating physical activities into your trip. I am all for relaxing. And eating. But I try to keep it in smaller proportion to moving.

3. Move together.
Take the stairs, park far away, walk somewhere you would normally drive. Put on some music and dance. Go to the school playground and shoot some hoops. Or kick it with a soccer ball. Toss a football around. Play tag. Roll down a hill. Take a flashlight out and do a nighttime walk. Have underwater tea parties at the pool. It doesn't have to be earth shattering or a monster workout. Just do something that makes you move more than you normally would: because it beats sitting on the couch!

4. Compete. Play games with your kids and don't always let them win. Encourage them to try to be the best at something. Kids are awesomely egotistical and competitive. They are actually kind of fun and funny this way. Enjoy it, feed off of it a bit, because trust me, they will LOVE it!

5. Sign up. Most kids can run/walk a 5k...so can most adults. If they are too little to run/walk, they can ride in a stroller... so why not sign the family up for a family race? Many events have themes, support and post-race activities and are geared towards families (including your local Promise Walk for Preeclampsia!). Even if your 7 year old complained the whole time, he will proudly proclaim he has run a 5k once the race is over. And for the rest of their lives, they will know they can do it and will be much more likely to do it again.

I'm not encouraging everyone to run out and sign up for some crazy endurance event (leave that to me). But I am encouraging you all to get out with your families and MOVE a little bit. Walk, run, swim, bowl, dance, jump, climb, whatever gets you active. And whatever it is, do it together!

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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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Last month, we posted a lengthy article titled Screening Tests for Preeclampsia. On August 14, a press release from PerkinElmer announced the launch of its new screening test for early onset preeclampsia, Preeclampsia Screen™ | T1. This month we posed questions to PerkinElmer Labs/NTD. These are the answers we received to five of the questions, which are representative of the questions you asked us.

How much will the screening test cost?

The list price of the test is $495. This will be billed to a patient's insurance, if available. If the test is not covered by a patient's insurance and the patient takes advantage of applicable payment options, they can expect to spend approximately $200 out of pocket for the test.

Will my insurance cover it?

This is uncertain, at this time, as the screening test just launched on August 1, 2013. It is our plan to submit to insurances and work with them on reimbursement for these new claims.

Will it be available everywhere in the U.S., and can any doctor or midwife order it for me?

It must be ordered by a qualified health care provider who is able to order laboratory tests and who has set up an account with PerkinElmer Labs/NTD. It is available to all qualified healthcare providers in the country.

Is it available outside the US?

Yes. Samples can be received at PerkinElmer Labs/NTD from outside the U.S., as long as they conform to all sample and shipping requirements, including any international regulations.

Will the screening test tell me when I might start getting sick, if I'm going to get PE?

The test will not tell you or your healthcare provider when you may begin having symptoms of preeclampsia. What it can tell your healthcare provider is whether or not you are at increased risk of developing early onset preeclampsia, which is preeclampsia that results in the delivery of the fetus before 34 weeks gestation.

 
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Adelaide C. Ward Women's Heart Health Center at University of Kansas Hospital is making a difference!

Left to Right in Photo: Karin Morgan, Program Coordinator for Hospital City; Sonya Parashar, Research Assistant; and Dr. Ashley Simmons, Medical Director of the Adelaide C. Ward Women's Heart Health Center at the University of Kansas Hospital shared with us this news.

The Preeclampsia Foundation's brochures have been fundamental in our quest to better serve our patients at the Adelaide C. Ward Women's Heart Health Center at the University of Kansas Hospital. Recently, we have started a preeclampsia and heart disease service that seeks to better educate preeclampsia patients about their increased risk of developing heart disease and stroke. Using the Foundation's preeclampsia and heart disease brochures, we are able to not only reach out to many women during their hospital stay but also to send them home with a reminder. Additionally, we are making a concentrated effort to screen Spanish-speaking women using translated materials.

Ultimately, our goal is to not only educate women about their risk but also help them make positive lifestyle changes. Our clinic offers a 90-minute personalized heart health risk assessment, which evaluates each patient's risk. During the assessment, our cardiac nurse practitioner uses each patient's results to make customized recommendations to help lower her risk in the future. Using the Preeclampsia Foundation brochures, our clinic has been able to seek out a higher risk population, educate them, and potentially help them reduce their risk in the future. These brochures have been a great tool and asset to us, and more importantly, to our patients.

 
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If you're a new mom, your own heart health may be the furthest thing from your mind, but if you're a preeclampsia survivor, it's something you and your physician should discuss. Why? Because research has shown that preeclampsia, along with a few other pregnancy complications such as fetal growth restriction and preterm birth, may predict your future heart disease.

Studies have found the following associations between pregnancy complications and cardiovascular disease:

  • A history of preeclampsia increases future risks of high blood pressure, heart attacks, stroke, blood clots, and kidney disease.
  • Women who have repeat or severe preeclampsia, or preeclampsia accompanied by still birth are at greater risk of cardiovascular disease than women who have high blood pressure only and during a single pregnancy.
  • Women who had growth restricted babies or who delivered preterm were found to have higher blood pressure 18 years after delivery.
  • The risk of pregnancy complications and later cardiovascular disease is cumulative. Women who experienced preeclampsia, preterm birth, and fetal growth restriction were found to have 7 times the risk of hospital admission or death from coronary artery disease.

This and other pregnancy and heart health information can be found on Seconds Count, the patient information website of the Society for Cardiovascular Angiography and Interventions (SCAI). Experts there suggest 6 questions you should ask your healthcare provider about pregnancy complications and heart disease:

  1. I had high blood pressure during pregnancy. Are there steps I should be taking now to monitor my heart health?
  2. I had a fetal growth restriction complication or delivered a preterm baby. What should I be doing for my best cardiovascular health?
  3. What risk factors (unrelated to pregnancy) do I have for cardiovascular disease, such as diet, family history, etc.?
  4. Do any of my test results indicate risk factors for heart disease, such as high cholesterol?
  5. Do my overall risk factors or risk factors related to pregnancy suggest that I should be referred to a cardiologist?
  6. Are there lifestyle or medication changes that would benefit my heart health?

Sadly, a study by Rana, et al (2011) found that a substantial proportion of internists and OB-GYN physicians at a major hospital in Boston were unaware of any health risk associated with a history of preeclampsia. The authors concluded that this deficiency may affect the clinical care they provide. That means that as the patient, you may need to print out this information and take it to your physician so they know why your pregnancy history matters.

It's unlikely you will need stents or bypass surgery, but a good number of preeclampsia survivors report difficulty getting their blood pressure to return to normal and may need, even temporary, medications to normalize their BP.

John P. Reilly, M.D., FSCAI, editor-in-chief of SecondsCount.org and Vice-Chairman of the Department of Cardiology at Ochsner Medical Center in New Orleans said, “We are committed to informing our patients and other healthcare providers about the link between preeclampsia and future heart disease, and the importance of managing cardiovascular risk factors in preeclampsia survivors.”

However, without solid evidence for what post-preeclampsia follow up care should include, what should you do? Experts in the field have helped us develop these common sense guidelines to reduce your risk of heart disease:

  • Eat a heart healthy diet and get regular exercise.
  • Stay at a healthy weight, specifically a BMI of 25 or less.
  • Don't smoke.
  • Talk with your doctor about your specific family health history, your pregnancy history and the benefits of taking low dose aspirin.
  • Know your numbers - blood pressure, cholesterol, and blood glucose - and ensure these stay in the healthy range.
 
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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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