Posted in Volunteer Happenings on January 10, 2013 by Administrator
It is the time of year where I spend quite a bit of time reflecting. Since our son's angelversary was December 28th, it's natural to think not only of the past year, but also of the time our lives changed forever. It has been 7 years now since that day and I can honestly say that I would have never believed I would be where I am today. A few weeks after the loss of our son, I was researching on the internet to figure out what happened to me when I found the Preeclampsia Foundation. It was perfect timing to bond with other bereaved parents on the forums. I found healing through the community of sharing our losses and our grief. It was easier to bare knowing there were others I could turn to that had experienced the same devastation. I spent alot of time on the forums and through my time there was where I felt the need to give back. I made it through the blackest of days thanks to those ladies. I knew if I could do it, so could others. I not only wanted to help families avoid my ...
A nurse from the University of Illinois Medical Center asked the Preeclampsia Foundation, "What do you think we, as nurses, could do to support patients when they are in a situation (preeclamptic pregnancy) similar to yours?"
We wondered aloud and nearly three dozen survivors responded via Facebook and our online Community Forum to share their experiences and provide their suggestions to the nursing profession. While there was very vocal appreciation for the majority of nurses who have cared for our women, there were also many helpful suggestions. Based on patient input, here are:
Top 10 Ways Nurses Can Support Preeclampsia Patients:
1. Know the symptoms, educate your patients. Know how dangerous preeclampsia can be, know the full breadth of possible symptoms, and be proactive about diagnosing and managing it. The Foundation's motto "Know the Symptoms, Trust Yourself" is targeted at pregnant women, but as healthcare ...
Keri developed severe preeclampsia at just 24 weeks pregnant and was forced to deliver her baby shortly thereafter.
Her baby girl Millie was extremely premature and weighed just 1 lb. 1 oz. She needed intensive medical care and Keri was by her side day and night.
A few days after Millie's birth, Keri set up a CaringBridge site to stay in touch with loved ones. "I had so many friends, co-workers and family members who wanted to know how to support me and who were asking for information about how Millie was doing," said Keri. "One hundred percent of my time and energy - emotional, mental and physical - was being spent on my baby and I had nothing left with which to reach out to people."
CaringBridge patient websites make is easy to share health news and receive support from everyone who cares. Using ...
The "Ask the Experts" section of the Preeclampsia Foundation's Community Forum has 318 questions answered by members of our medical board - top researchers and clinicians in hypertensive pregnancies.
Readers often visit this section, not for definitive answers to any one particular question, but to provide spark ideas about other topics or terms to search, and especially new questions to ask your doctor. The Experts answer anonymously and do not give medical advice on any specific case, but they do contribute to the ongoing discussion of preeclampsia-related topics. Information in the older links may not always reflect current understanding of the disease or today's management practices.
Here are Forum Director Heather Curtis' top 5 tips for using our ...
Encore Public Relations was named a Bronze Stevie Winner in the PR Campaign of the Year/Community Relations category in the 9th annual Stevie® Awards for Women in Business on November 9 for their work with the Preeclampsia Foundation. Encore Public Relations lead strategy efforts and execution for a multi-platform campaign that raised awareness during the 2012 annual Promise Walks for Preeclampsia across the country.
"Ironically, it was during this same weekend last year when we had the good fortune to meet Laurie and Elaine in New York City," said Eleni Tsigas, Preeclampsia Foundation's executive director. "The women were in town for another honor they were receiving and via wonderful circumstances, we were brought together at Saving Grace, our annual benefit gala."
Laura Archbold, principal of Encore Public Relations, upon receiving their award, said. "We humbly accept this honor on ...
Posted in Volunteer Happenings on December 05, 2012 by Administrator
What was your experience with preeclampsia?
On February 17th, 2005 I was so blessed to become a mom to a beautiful, blue-eyed, baby boy. Roddick was born 2 weeks early, by emergency c-section, due to my blood pressure staying elevated, even with bed rest. My husband was out of town for work, so he missed the birth of his 1st child. It was crazy, nurses and doctors running around trying to get me into surgery and deliver my son. Much of the delivery was a blur. They had me on and off mag sulfate to control my bp. I felt so awful, I kept thinking that this surely couldn't be what it felt like to be a new mom. I felt so bad that I didn't even have the warmth and compassion I ...
Posted in Health Information on December 05, 2012 by Administrator
By Dr. Anne Wallis ~ Who remembers the first season ER episode "Love's Labours Lost"? The answer: pretty much anyone who ever watched ER! In the episode, a pregnant woman presents to the emergency room with a complaint of bladder problems, has a seizure and later dies. This was my first exposure to the hypertensive disorders of pregnancy. Eclampsia is, thankfully, rare, but it carries a high case fatality rate for the mother and/or the infant. Gestational hypertension and preeclampsia are far more common, affecting between 5% and 8% of all pregnancies in the US. Moreover, these conditions are on the rise and globally, these conditions are a leading cause of maternal and infant illness and death.
Obstetric providers are acutely aware of the dangers of preeclampsia because of its potential severity and rapidity of onset and progression, making high-quality prenatal ...
Posted in Volunteer Happenings on September 30, 2012 by Administrator
1. What was your experience with preeclampsia?
I developed HELLP Syndrome in 2009. Not knowing the symptoms of HELLP delayed my response to getting help faster. I went to the ER after three days of right upper quadrant pain (which I was told by the doctor on call that it was probably my gall bladder even though I was on bed rest for high blood pressure), difficulty breathing, and a sense of just not feeling well. I was told by the Labor and Delivery nurse I had made it just in time. When I arrived my platelets were dangerously low, my liver was enlarged and my blood pressure was high. They feared I was going to bleed out during delivery and prepped me for a transfusion. There is no scarier feeling than feeling like you might die during what is supposed to be the happiest time in your life. I delivered my son, Cooper, at 36 weeks. He was only 4lbs 13 oz. Although he was tiny and his platelets were low, he miraculously did not have to go into the NICU. We ...
Preeclampsia Foundation volunteers in different parts of the country have been taking advantage of Perinatal Outreach Educator Networks to disseminate information about the Preeclampsia Foundation and advocate for more patient education.
An unexpected outcome from one of these discussions came from Maripat Zeschke, RNC-EFM, MSN, LC who is the Perinatal Network Administrator at the University of Illinois Administrative Perinatal Center. She asked a simple, but powerful, question of the preeclampsia survivors who were presenting: "What do you think we, as nurses, could do to support patients when they are in a situation similar to yours?"
Zeschke said that her question "comes from a long history of being committed to patients. Nursing is the perfect blend of art and science, and being at the bedside is the essence of the art. I've seen so many patients with devastating preeclamptic stories, and I think it's amazing when survivors can relive it on a regular ...
Posted in Research on September 30, 2012 by Administrator
Principal Investigator Nihar R. Nayak, DVM, PhD, Stanford University, recently reported successful progress in his efforts to better understand the role of certain placental proteins in the development of preeclampsia. His 2011 Vision Grant research project aimed to see how proteins act in the placenta during preeclampsia. In Nayak's multi-stage investigation, he first needed to develop a new method using a mouse model system to study the roles of specific proteins in placental function and disease, as well as testing novel therapeutic approaches to preeclampsia. In his model, protein expressions can be seen in all stages of pregnancy.
Nayak's team has also developed a way to study how genes act in the placentas of mice. Genes play an important part in the development of the placenta during pregnancy. Better ways to see how abnormal genes act will help us learn more about what causes the amount of certain proteins to be higher ...
A recent study in the September 2012 issue of Obstetrics & Gynecology took a look at the seasonal flu vaccine, recognizing that many women are concerned (check out our forum posts about it, here and here) about introducing any drugs or vaccinations during pregnancy.
During the 5-year study period, over 10,000 women received the seasonal influenza vaccine while they were pregnant, a few ...
By Dr. Linda Burke-Galloway ~ October is Patient Centric Care Month, a term you will likely see more of as our healthcare system moves further into the 21st century. What does 21st century healthcare look like? It means that all of your records will be computerized and not on paper. It means that you will receive your "chart" on a flash drive so that when if you leave your physician's office and go to a hospital, your health records remain with you. Gone will be the days when your labs will have to be repeated because no one can locate your prenatal chart. Repeating labs is not only annoying, it's costly.
"Patient Centric Care" means that the emphasis will no longer center on your physician. Or a hospital. Or an ambulatory care center. It will be centered on you, the patient. Why? Because at the end of the day, if you're not well, if the outcome was less than expected, then the system has failed. The $2.3 trillion dollars spent each year on healthcare has not ...
Patient-centric care, a buzzword in healthcare reform, should be the obvious goal for any health care system. "What a concept," I utter with a hint of sarcasm. Put the patient at the center of the decisions, resources and desired outcomes?!
However, patient-centric care is also dependent on a related concept: the "empowered patient," a subject CNN medical correspondent and fellow preeclampsia survivor Elizabeth Cohen writes about in her column and book, The Empowered Patient, available in our Marketplace.
An empowered patient is one who has the information she needs to act proactively upon her preeclampsia symptoms. She also has an effective relationship with her care provider(s) so she can communicate her concerns, ask questions, comply knowingly with agreed upon treatments, ...
Posted in Health Information on September 04, 2012 by Administrator
A recent Preeclampsia Foundation survey reveals that most women feel that books that provide complete and accurate information about preeclampsia would help them approach their pregnancies as empowered patients. The survey, conducted as a follow-up to the May release of the Preeclampsia Foundation's Report on the Top 10 Pregnancy Books, asked women about the pregnancy books they used during their pregnancies and about their feelings regarding the preeclampsia information contained in those books.
All respondents were entered into a contest to receive a signed copy of one of the top 3 books and a Preeclampsia Foundation gift basket. Congratulations go to Melissa S., Teri P., and Laura R. for winning the random drawing!
Not surprisingly, the majority of respondents (69%) reported that they relied on the bestselling What to Expect When You're Expecting by Heidi Murkoff and Sharon Mazel ...
Posted in Volunteer Happenings on September 04, 2012 by Administrator
What was your experience with preeclampsia?
I had severe preeclampsia (PE) and borderline HELLP syndrome with my first pregnancy at 35 weeks. I had warning signs as early as 30 weeks that I reported to my doctor, but he blew me off as a first time mom who didn't know what pregnancy was like. By the time I was diagnosed, I was in heart failure, cerebral edema, and had platelets low enough to qualify for class II HELLP. I was in really bad shape. I was transferred to another hospital, and the doctor there said we should pray the induction worked because a c-section would kill me. My first daughter was born mildly IUGR. She's almost 9 and doing well today.
I found a new doctor who monitored me closely for my second birth. I started showing the same early warning signs at 32 weeks, and was induced at 37 weeks with mild PE. My second daughter was also mildly IUGR and ...
Posted in Research on August 05, 2012 by Administrator
Every two years, the International Society for the Study of Hypertension in Pregnancy (ISSHP) World Congress brings together the top researchers and clinicians in the field of hypertension in pregnancy to share innovations and encourage collaborations in research and clinical practice. As in year's past, the Preeclampsia Foundation participated in the 2012 meeting held July 9-12 in Geneva, Switzerland.
Like the current Olympics which inspire us to "Citius, Altius, Fortius" (Latin for "faster, higher, stronger"), the World Congress inspires participants to demonstrate new found knowledge and skills, and to push each other forward. In the enthusiasm of science-swapping and networking at a meeting like ISSHP, sometimes the larger purpose of our endeavors - saving lives and improving health outcomes of mothers and babies worldwide - may be forgotten by those racing from one intriguing lecture to the next.
That's where the Preeclampsia Foundation comes in. It is a ...
Posted in Health Information on August 05, 2012 by Administrator
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, ...
Posted in Volunteer Happenings on August 03, 2012 by Administrator
What was your experience with preeclampsia?
I had preeclampsia with both of my pregnancies. With my first child, I was not made aware of the symptoms of this condition, so when I started having side pains, I just thought I had a cramp, nothing serious. I had gained a significant amount of weight, but had no basis of comparison, so I believed it to be just the nature of being pregnant. I went from 115 lbs to 180 lbs and assumed that was normal. I was swollen, short of breath, and generally unhappy. By the time the high blood pressure became a threat, it became significantly high. Because my proteins showed up during a routine visit and at about 28 weeks, I was put on bed rest, and was administered Labetalol to manage my blood pressure. After I gave birth at 35 weeks with my eldest daughter, I was told I had been preeclamptic but that it was "not a big deal." I was reassured it does not necessarily happen with every pregnancy, so I was told, for my next ...
This month, we highlight the volunteer efforts of Stacy Vallely, whose fundraising team "Ty's Team" raised an astonishing $10,300 for the Boston Promise Walk! Stacy raised $5850 herself, making her the highest individual fundraiser of all the Promise Walk participants. We asked Stacy a couple questions about her involvement with the foundation.
1. What was your experience with preeclampsia?
I started to swell pretty early on. I remember thinking that I couldn't believe that I had to take my rings off before the 3rd trimester. Then when I started to feel funny. I called my midwife and expressed concerns about preeclampsia because of the swelling. She asked if I had any headaches? No. Any vision changes? No. She told me that they don't usually worry about preeclampsia until 36 weeks and I was just 26 weeks. My blood pressure at our last appointment was fine, so I should "put my feet up and I will see her in a little ...
Posted in Heard on the Hill on July 02, 2012 by Administrator
Last week, the Supreme Court upheld the constitutionality of The Patient Protection and Affordable Care Act, otherwise known as the "health reform law." This means that implementation of this landmark legislation can continue to move forward. However, the law continues to be the subject of debate through this year's presidential and congressional election cycle, and depending on the election results could be altered by Congress and the White House in the future. As it currently stands, the law directly benefits childbearing women and newborns by:
- prohibiting the use of pregnancy as a preexisting condition by health insurance providers;
- widening access to certified nurse-midwives by eliminating inequities in how they are reimbursed under Medicare;
- paying for home visits by nurses for at-risk families during or after ...