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Update on Christian Lybbert

Aimee Lybbert, Mother of CHD (Congenital Heart Defect) Survivor, Christian, updates us on his life now and what she sees every day as a “Heart Mom”

You can catch up on Christian’s story from nearly two years ago here.

Christian will be three at the end of next month. He's been through two more open heart surgeries and four open abdomen surgeries and one surgery through his ribs on his diaphragm. He's now living at Seattle Children's and is currently on the waiting list for a heart transplant.

He has quite the collection of scars. We as his parents do too.

We have been at Seattle Children's for almost 5 months now with most of our time spent in the Cardiac Intensive Care Unit (CICU).

We have seen our share of families and children go through the CICU.

I've seen parents waiting anxiously for their surgery pagers as they wait for any update, I've seen parents hugging surgeons. I've seen rooms that have one little body in the room surrounded by scores of machines and staff working together to get the child through it all. I've seen parents cry with joy as their child had the breathing tube removed and they start to talk again. I've walked past rooms where moms are holding their children for the first time in forever as the nurse takes pictures. I've watched as they get transferred to the recovery floor, and I've watched parents take video of their toddler as he walked out the front door of the hospital after he conquered heart surgery. I've seen such joy at the many triumphs and miracles that happen here. 

I've also seen complete and utter despair. Sometimes things don't go as anticipated or as hoped.

Christian was like that. He had several emergency surgeries and he once bled out from a Gastrointestinal bleed and he had to be intubated and scoped while they transfused almost the entire volume of his blood. There were days that I didn't know how I could go on.

When my son headed off to one of his emergency surgeries I was a complete mess and was sobbing in the elevator on my way to the cafeteria. Another heart mom saw me. She asked me my son's name and told me that she saw me crying and couldn't leave me alone like that. She gave me a hug and said she'd pray for me.

She got off on her floor and I kept traveling down. The next day a card arrived with a note and a Starbucks gift card from her.

She had her own troubles and she took the time to look out for another person in need.

There are a surprising amount of kids and parents whose journey includes a hospitalization and or surgery in order to keep their CHD in check. Congenital Heart Defects are the most common birth defect. Approximately 25% of kids with a CHD will require a surgery or other intervention to survive. If you're on the outside looking in the most important thing to do is just to listen and quietly let them know you love them. If you're on the inside of the CHD storm it is important to realize that you're not alone.

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Update on the Healthy Idaho Plan

Guest Blogger: Erin Bennett, Idaho Government Relations Director

As part of the Close the Gap Coalition in Idaho, the American Heart Association/American Stroke Association (AHA/ASA) has been working hard to support the Healthy Idaho Plan, which would expand health care access to the 78,000 Idahoans who currently cannot afford health insurance, but do not qualify for Medicaid.  The Healthy Idaho Plan comes from a recommendation from the 2014 Governor’s Task Force, which examined ways to improve health care access and analyzed cost efficiencies.

Senate Bill 1205, introduced by Senator Schmidt, was heard in the Senate Health and Welfare Committee on Tuesday, February 2, 2016. This legislation introduced the Healthy Idaho Plan to the committee as the comprehensive solution that is most effective for providing adequate levels of care, as well as most efficient in use of state and federal funding.  The committee room was overflowing, and too additional rooms were opened to provide opportunity for those not in the room to listen to committee testimony. Most of the crowd showed support of SB 1205, and in the hour of committee testimony -- only one organization stood in opposition to the Legislation. Representatives from counties, doctors, hospitals, and other health care organizations were all in favor of seeing the Healthy Idaho Plan moved forward. Even a few tragic and personal stories were told, highlighting the need, and the devastation that comes without health insurance.

Despite the overwhelming support, the committee considered this an informational hearing, and did not make any motions or take any votes on the legislation. We continue to work with the Close the Gap Coalition to urge legislators to support health care coverage through the Healthy Idaho Plan in SB 1205. We know how important health insurance is to those with cardiovascular disease, or recovering from a stroke, and the many other Idahoans with chronic disease and other medical challenges.

At the close of the hearing, Sen. Schmidt stated, “I’m not sure you should be making public policy choices based on tragedy. You should be making public policy choices based on good policy. Tragedies do happen. And if we can make good policy to prevent them, that’s our job.”

We believe the Healthy Idaho Plan in SB 1205 is good policy, and we ask you to contact your legislators to support health care for all Idahoans.

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Safer Routes to Schools means safer, healthier kids

Guest Blogger: Erin Bennett, Idaho Government Relations Director

Safe Routes to Schools (SRTS) means safer, healthier Idaho kids. SRTS is a project that provides funding to improve infrastructure and non-infrastructure projects that encourage walking and biking to school. Over the past several months, we have been working closely with partners to help educate policy makers on the need for funding SRTS.

Since the 1960s, the percentage of kids who walk or bike to school has decreased from 47% to approximately 12%, while those riding in personal vehicles has increased from 12% to 45%. Research shows that each hour per day spent in a car increases likelihood of obesity by 6%. We know that increased physical activity throughout the day helps reduce obesity and the associated health risks, and walking and biking to school is an easy way to boost the amount of active time in a child’s day.

Safety concerns for kids walking and biking on highly trafficked streets, as well as things like lack of sidewalks, walk or bike paths, and crosswalks are often cited for this dramatic change in how kids get to and from school. This is where SRTS funding is essential. SRTS provides dollars to school districts to support infrastructure changes, as well as non-infrastructure improvements, such as a program manager, or volunteer training for walking school buses.

Along with improved safety and health outcomes, we know that increased activity has a positive effect on academic performance. After physical activity, students show improved test scores, demonstrate better classroom behavior and reduced discipline issues, experience less absenteeism, and indicate a higher level of comprehension.

We will be focusing on SRTS in our youth advocacy efforts during the 2016 Legislative Session, because of the health, safety, and academic improvements that can be seen when Safe Routes are implemented effectively. We hope you’ll join us by reaching out to your local district, administrators, parents, and legislators, and encouraging everyone to support Safe Routes to Schoo

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Advocate Highlight - Sara Hoffman

Hi my name is Sara and I am 37 years old. This year should have been one of the happiest times of my life. On April 18, 2015, I was married on a beach in Mexico. Like any bride, I spent months planning the wedding and could not wait to celebrate with our friends and family. The shocking part of this story is that I suffered a major heart attack during the flight on my way to Mexico.

I felt fine in the morning and for the first four hours of the flight. All of the sudden I started experiencing burning in my chest, jaw and arm pain. I instantly knew something was wrong. After about 20 minutes of experiencing symptoms, I asked the flight crew to land the plane. I knew that my age and the fact that we were on the way to our wedding could make people think I was just having a panic attack so speaking up for myself felt more important than ever.  I was later told by my cardiologist that I would have died on the plane that day if we had not landed the plane.

We did an emergency landing in Louisiana where I was wheeled into the ER with my wedding dress in tow. I had an Angioplasty and a stent placed in my left anterior descending artery. My heart stopped twice during my procedure and I had to be defibrillated both times. My poor husband thought he was going to be a widower and we weren’t even married yet.  Amazingly, I was cleared to fly to Mexico just two days after my procedure. The day of our wedding was amazing but and I felt so lucky just to be alive and standing there.

We cancelled our honeymoon so I could come home and recover. I had not felt well while in Mexico and ended up getting re-hospitalized the day after we came home. I was in congestive heart failure and was experiencing terrible side effects from my medication.

My recovery has been hard but I am learning so much about heart disease along the way. I knew my father had a heart attack at age of 36, but I can honestly say I never considered myself to be at risk. I was healthy, I used to run full and half marathons, I don’t smoke, and I am a vegetarian. I thought everything I was doing would counteract my family history.  I didn’t understand the power of genetics.

I hope my story can encourage other women to schedule a Well-Woman Visit and talk to their doctor about their family history and personal risk.

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Youth and e-cigarette exposure

About 18 million U.S. middle and high school students – 70 percent – are exposed to e-cigarette (also known as e-cigs) advertising online, in stores, newspapers, magazines and movies, and on television, according to a report released by the U.S. Centers for Disease Control and Prevention.

E-cigarettes deliver a nicotine-containing aerosol popularly called vapor by heating a solution usually made of glycerin, nicotine and flavoring agents. An American Heart Association policy statement said that e-cigarettes target young people and can hook people on nicotine and threaten to “re-normalize” tobacco use.

In a recent statement, AHA CEO Nancy Brown said:  “The tried-and-true methods to attract a new generation to tobacco must be reined in,” “Otherwise, more and more young Americans will put themselves at risk for heart disease, stroke or even an early death as a result of taking up tobacco in any form.”

The e-cig ads are following a familiar tobacco marketing playbook of old with themes of independence and rebellion that are aimed specifically to addict the next generation.  E-cig advertising to young people “is like the old time Wild West,” said CDC Director Tom Frieden in a media briefing. With no regulations and growing ad budgets, spending nearly tripled in one year from $6.4 million in 2011 to $18.3 million in 2012, according to a study in the American Journal of Preventive Medicine.

The CDC said that manufacturers of e-cigarettes also target youth through advertising on social networks. Online ordering makes it easier for kids to purchase e-cigs and related products.

In 2014, e-cigs became the most common tobacco product used by middle and high school students. The most recent CDC data shows that from 2011-2014 e-cig use by high school students increased from 1.5 percent to 13.4 percent. Among middle school students it rose from 0.6 percent to 3.9 percent. This sudden and dramatic rise in youth use sadly illustrates the effectiveness of unregulated advertising for these products. 

For the full story, please visit here.

We are working to raise awareness on the issue at the local, state and federal levels on this growing public health issue.  If you want to get involved locally, please contact Josh Brown for more information.

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The 2016 Legislative Session Will Be a Busy One

Guest blogger: Erin Bennett, Idaho Government Relations Director

The 2016 Idaho Legislative Session is gearing up, and the AHA has plenty of work to do on all our policy priorities.

Over the interim, we worked with the Department of Education on improving Physical Education content standards in K-12, to help improve the quality and thoroughness of PE in Idaho. We will work with the Department as they go forward in presenting those changes to the Legislative Committees. Once the improved content standards are approved and implemented this session, the intent will be to move legislation to make PE a requirement in the 2017 session.

We will also be finalizing the rules for the Time Sensitive Emergencies (TSE) System, which we have been working on with the Governor’s TSE Council. TSE deals with heart attack (STEMI), stroke and trauma, where the amount of time it takes to receive care is crucial to the outcome for a patient. These rules provide the structure and process for hospital stroke and heart attack center designation and creation of a data registry for performance improvement.

Putting the Time Sensitive Emergencies system in place will help improve care in Idaho by coordinating emergency medical services, first responders, hospitals, and others involved in the health care system. It will allow all parties involved to communicate more effectively and efficiently, getting patients the care they need in time, improving outcomes and survivability.

We are also working with the Close the Gap Coalition, a group organized to support the Healthy Idaho Plan (HIP). The HIP would allow low-income Idahoans who do not qualify for health insurance subsidies, but have incomes too high to qualify for Medicaid, the opportunity to access health insurance. The plan would also reduce the need and cost for indigent and catastrophic care plans in the counties and state, while ensuring that all Idahoans have access to care.

The Millennium Fund Committee is reviewing grant applications for smoking education, prevention, and cessation programs, and we will once again support our partners in the effort to reduce the poor health impacts of smoking. We will encourage the Committee to increase funding from $4.7 million last year -  over 25% of CDC recommended funding, to $7.8 million, or 50% of recommended funding. This is in correlation with our local efforts to pass smoke free city ordinances throughout the state.

We have a lot to do, and going into an election year, it will likely be a short session. Advocates will be crucial to our efforts to help people live healthier lives, have access to health care, and improve outcomes for all Idahoans. Your help will reduce the risks of stroke and cardiovascular disease and I look forward to working with you to provide all Idahoans the opportunity to live healthier lives.

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Eric Price - advocate highlight

Eric Price’s instinct for CPR response kicked in when Skyler Nelson collapsed of cardiac arrest at West Jordan Middle School on Oct. 14. Price is vice principal at the school in West Jordan, UT, and had completed a CPR refresher course just a few days before the 14-year-old went down while jogging with PE classmates around the gym.

KUTV in Salt Lake City featured the story, including gym surveillance video, which shows how officials at the school responded immediately. They called 911. Special Education Teacher Lucia Evans tried to find Skylar’s pulse and Price began CPR compressions. School Resource Officer David Hood assisted with compressions until Skyler’s heart began beating on its own.

The American Heart Association recently honored their teamwork with our HeartSaver Hero Award. Skyler was also on hand to help present the award and, although he doesn’t recall much of the event, he is grateful to his lifesaving team. "I'm feeling fine. I'd just like to thank all the people who supported me through this," he said. Doctors have determined that Skyler was born with a genetic heart defect that had gone undetected and he underwent surgery to have a defibrillator implanted in his chest to prevent future problems.

The lifesaving incident has led to CPR training at the school. Jordan Valley Medical Center and its owner IASIS Healthcare purchased CPR in Schools kits in the past and will use these to train eighth-grade students during their health class on Dec. 8.

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We're Feeling Grateful

As AHA Advocacy staff, we get to work alongside the most remarkable volunteers- like YOU! We get to see lives improved and lives saved as a result of the work we’ve done together, and for that, we're grateful.

As You’re the Cure volunteers, you share personal stories of loved ones lost too soon, of survival, or of triumph over heart disease or stroke- all because you know your stories will make a difference in someone else’s life. It is often those stories that convince lawmakers to pass the policies making our communities healthier.

Because of you, more babies are being screened with Pulse Ox and having their heart defects corrected before it’s too late. Because of you, people in communities around the country have been saved by students who learned CPR in school. Because of you, people are getting better stroke care, families have safe places for active play, fewer people are smoking, and kids are eating healthier food at school.  The impact you’re making is incredible, and our communities are better places- because of you.

You make us cry. You share your joy. You inspire us. You amaze us. And we’re just so grateful for all you do.

We’re including YOU as we count our blessings this month, and we wish you a wonderful Thanksgiving with family and friends!   

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Idaho Children Deserve Quality Physical Education

Guest Blogger: Erin Bennett, Idaho Government Relations Director

Physical education is crucial to our children’s health. Research has shown that a high quality physical education program can not only reduce the rates of childhood obesity and associated chronic diseases, but can also help children develop interest in physical activities that carries throughout their lifetime. Unfortunately, during tight financial times, many schools look to physical education as one of the first programs to cut in order to save money. But we know this is a mistake, as the benefit of physical education is more than just improved health.

Studies show that physical activity also benefits children (as well as adults!) by elevating brain activity, increasing attention span and ability to focus which can lead to improved academic performance, and reduced disciplinary problems in the classroom. The effects of a high quality physical education program extend well beyond the gym, which is why the AHA/ASA supports quality PE in schools.

Many Idaho schools have struggled to sustain their PE programs, and during the 2016 Legislative Session, the AHA/ ASA will be working to ensure every child has access to a high quality physical education, which includes a minimum number of minutes for moderate to vigorous activity as well as certified instructors. We will also work with each and every legislator to help them understand how PE benefits children now, through improved academic performance, as well as in the future long term health improvements and cost savings.

We will also continue our work with the Department of Education, the State Board of Education, the SHAPE Idaho organization, and many other community partners to help strengthen support for every school to have a high quality PE program. We know the results of Physical Education will help students academically, as well as establishing lifelong healthy habits that allow active kids to become active adults.

Please contact me at Erin.bennett@heart.org if PE in schools matters to you. We need your help!

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Brenda Pollard

For the first time in my life I’m spending a lot of time in bars.  Much to the surprise of my family, I know every bar in the community and enjoy my visits with the owners, employees and customers finding out how they deal with secondhand smoke. 

I’m Brenda Pollard, the Pocatello grassroots coordinator for SmokeFree Idaho, a coalition of businesses, organizations and individuals that believe no one should have to choose between a job and good health!

All of my adult life I have been involved in community organizations, mainly focusing on neighborhoods and community engagement.  Community organizing is a natural outcome for a party planner that loves organization and healthy living environments. 

After losing an aunt and an uncle to causes related to smoking I determined it was time to be more vocal about the devastating effects of tobacco use.  I was thrilled to find an organization where the American Heart Association, American Lung Association and American Cancer Society teamed up to advocate for the health of Idahoans.  I learned that there is NO SAFE LEVEL of exposure to second-hand smoke.  

Now I work to share that information with folks in Pocatello and Chubbuck.  I have visited small businesses, community leaders and city councils.  I present at schools, service organizations and association meetings.  I have enjoyed calling Bingo at the Senior Center, sharing alarming facts such as- for every seven people that die from tobacco use, they take one nonsmoker with them.   I promote SmokeFree workplaces at health fairs and community events, chamber of commerce meetings and fun runs. 

Some of the highlights of my work include visiting with Don Aslett at his Museum of Clean where he told me of a book he wrote titled, “Why I Would Rather Clean up after a Cow than a Smoker.”  Also, the photo booth shoot at Poky High School organized by their Idaho Drug Free Youth Club and sponsored by McCord Orthodontics where students posed with signs reading, “I Support SmokeFree Idaho.”  Currently I am working with students from each high school to promote a campaign to “Blow Bubbles – Not Smoke”  Check out the inspirational ad that inspired our theme.

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