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Heart on the Hill 2016

Guest Blogger: Marc Watterson, Utah Government Relations Director

This past Friday volunteers from across the state gathered at the Utah State Capitol as we celebrated National Wear Red Day with our annual “Heart on the Hill” Lobby Day. Advocates just like you had a chance to listen directly from State Legislators as they discussed important legislation that impacts cardiovascular health: Tobacco Use, Affordable Healthcare, and Safe Routes to School. You’re the Cure advocates then had a chance to take their message to their legislators as they discussed these important policies with them.

A special feature this year was an opportunity for us to celebrate the 40th Anniversary of the Utah Indoor Clean Air Act. Working with Representative Paul Ray and Senator Ralph Okerlund we were able to streamline the passage of HCR 2, which recognizes this important anniversary as well as honoring the men and women who made it available, in particular the late Representative Gerald Woodmansee and David Hughes Horne. We were honored to have David Horne with us as well as many members of both families – some who had traveled as far as California to be here with us!

The day culminated with a very special signing ceremony for HCR 2 with Governor Herbert and his staff. We were pleased to also be joined by Dr. Joseph Miner, Director of the Department of Health and Alan Matheson, Director of the Division of Environmental Quality. A very special thanks to Governor Herbert who was very gracious with his time and stayed so all of our volunteers could have their picture taken with him.

A very special thanks to AHA Staff who helped put the event together, members of the local Board of Directors who supported the event, Western States Affiliate Board President Dr. Kirk Knowlton who was in attendance and addressed our advocates, IASIS Healthcare who provided breakfast and health screenings, and the many volunteers and family members who took the time to make this event an overwhelming success! In all we had nearly 100 attendees for this amazing event – and it all is thanks to the support we receive from our active volunteers from across the state. It was truly a moment to remember that when we are all committed to a singular goal that we can all be the cure for cardiovascular disease and stroke!

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Little Hats Big Hearts Utah

The Little Hat, big Hearts campaign has volunteers from all over Utah picking up their knitting needles. More than 800 hats will be donated to babies and children at Utah hospitals to promote awareness about heart disease and congenital heart defects during American Heart Month in February. One in every three deaths is due to heart disease in America, making it the #1 cause of death. Many babies are born with heart defects. In fact, congenital heart defects are the leading birth defect in infants.

Thanks to our volunteers, including members of Intermountain Healing Hearts, hundreds of tiny babies will feel the warmth this February. Every baby born in February at a participating Utah hospital should receive a red hat. Little Hats, Big Hearts started in February 2014 in Chicago, Illinois. Since then the program has expanded to 29 states, including Utah. The American Heart Association uses the increased awareness to provide funding for research in support of congenital heart defects, which affect 1 out of every 100 babies born and can result in dozens of surgeries and procedures for each baby.

The number of donations this year has been outstanding. With the original goal of 200 hats, more than 800 hats were donated. More babies then ever will be able to go home with special red caps and warm heads. Caps will be distributed to Primary Children’s Hospital, LDS Hospital, Intermountain Medical Center, Alta View Hospital, St. Mark’s Hospital, Salt Lake Regional Medical Center, University Hospital and Lakeview Hospital. Little Hats, Big Hearts is making a big statement in our community about the importance of research and awareness of heart defects.

Pictured is four-year-old Jaxon Jensen is a congenital heart defect survivor. His grandmother, Rachel Gordon and her co-workers knitted 100 hats to support other children in Utah with heart problems.

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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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This years legislative session looks like it will be a busy one

Guest Blogger: Marc Watterson, Utah Government Relations Director

I hope everyone had a wonderful holiday season these past few weeks! I had a chance to spend some wonderful time with my family and recharge my battery as we now prepare for the busiest season of all: Legislative Session!

As you are aware, the State of Utah will begin our annual legislative session in a few weeks. While every session has its moments, this year looks to be quite busy as our elected officials debate several issues that could have a profound impact on many Utahns. Often the American Heart Association is asked to “weigh-in” on several of these issues. As our top volunteers I wanted to give you a chance to see a bit of what goes on behind the screen and see where we sit on what continues to be one of the top issues in the state: Affordable Healthcare Coverage.

By now, it would be hard to find many people in the state who have not heard of Governor Herbert’s “Healthy Utah” plan (in its various iterations) that would improve the access to affordable healthcare coverage for many in our State. We commend the state of Utah for trying to find an option that best suits the needs of all Utahns in regards to medical insurance coverage.

Utah is known for its culture of hard-working and compassionate people. We feel that the Healthy Utah Plan finds the right balance. In 2011, hospital charges for cardiovascular disease alone exceeded $600 million in Utah. And in 2013, more than 4,000 Utahns died from cardiovascular disease and stroke, the number one cause of death in Utah. There is no question that if there was an increased access to care and an opportunity for individuals to affordably visit their healthcare provider, many of these lives would not have been lost.

While there will be many issues that the legislature will discuss in the coming months, few have the potential to effect so many lives as this does.

I hope that you will join us during this session for our annual Heart on the Hill Lobby Day on February 5th! It looks to be an exciting time for our staff and volunteers to assemble and have a chance to speak with our legislators about issues that our close to our hearts. Please bring your family and friends who are able to attend and don’t forget to RSVP for the event here.

See you then!

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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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Get Social With Your Members of Congress

Will you be on Facebook or Twitter today? Your Members of Congress and their staff will be, and it's a good place to reach them according to a report released in October by the Congressional Management Foundation (CMF).

The CMF report, #SocialCongress, says Congressional offices are listening to social media chatter and it takes relatively few posts or comments to get their attention. That's good news for us!

So, how can you use the Facebook newsfeed or Twitter timeline to get the attention of lawmakers and help pass heart healthy policies?

  • Follow your members of Congress, as well as state and local elected officials on Twitter. ‘Like’ and ‘Follow’ their pages on Facebook.
  • Tweet about our health policy issues, tagging the appropriate legislators by using the @ sign and their Twitter handle. For example: I’m from Pennsylvania, so I’d tag my U.S. Senators by including @SenBobCasey & @SenToomey in my tweet.
  • If they allow it, you can post about our issues directly on the Facebook pages of elected officials. Frequently, that feature is disabled but you are able to comment on their posts. According to #SocialCongress, Congressional offices typically monitor those comments for a limited period of time. Your best bet is to comment within the first 24 hours after a post.
  • Rally your friends and family members to tweet, post or comment about an issue on a single ‘day of action’. CMF’s survey data shows just 30 or fewer comments can be enough to make a legislative office pay attention.
  • Be sure to use the campaign hashtag if one has been created by your advocacy staff partners. The #hashtag allows all the relevant posts to be woven together to tell our story, and makes your post searchable by others interested in the issue.    

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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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Advocate Highlight- Heidi Stewart

Hi my name is Heidi. I might look like your average college student but what you can’t tell just from looking at me is that I am a survivor.

Growing up I was very active. I began competitive swimming at 8 years old. Everything seemed fine until my junior year of high school. The first sign that something was wrong was when I passed out after a swim meet. My parents took me to the doctor to see what could have caused me to pass out and after seeing a specialist and undergoing many tests I was diagnosed with anxiety.

My dad suffers from anxiety as well so he taught me how to deal with it and how to control the attacks. But on February 12, 2013 my life changed forever. I woke up tired but headed to school anyways. I began feeling weak and thought an anxiety attack might be starting so I spoke with my first period teacher who knew about my attacks and he gave me a pass to go to the library to study. I don’t remember what happened in my second period class. Third period was my leadership class and I really did not feel well at this point. I remember feeling worse and worse as the day went on. Knowing I needed help I headed to the school office. I barely made it before collapsing just inside the door.

Thankfully my school had an AED and within moments CPR was being administered and the AED was being used. The administration, security guard, and school nurse performed CPR for 10 minutes, and shocked me 3 times with the AED.

After I arrived at the hospital and they stabilized me, the emergency room staff proceeded to perform an ECG but found nothing wrong. They sent me to have an MRI to see if there was any brain damage; during the full body MRI is where they found the problem.

They had found a large sum of scar tissue on the bottom right ventricle of my heart which is a sure sign of Arrhythmogenic Right Ventricular Dysplasia/ Cardiomyopathy (ARVD/C for short).  ARVD is a form of cardiomyopathy in which the heart muscle of the right ventricle (RV) is replaced by fat and/or fibrous tissue. The right ventricle is dilated and contracts poorly. As a result, the ability of the heart to pump blood is weakened.

On February 14th, 2013 they placed an Internal Cardiac Defibrillator (ICD) into my chest. It works as a pacemaker and a defibrillator in the case of emergency. I am also on two heart medications: a beta blocker and an antiarrhythmic/ beta blocker.

Since that day I have made many adjustments. At one of my first follow-up appointments I was handed a list of physical activities that I could no longer do. I love to be active and thankfully have found new ways to remain active without putting my life at risk.

The American Heart Association funds life-saving research; research that saved my life and the lives of so many others.

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