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Study: Increasing number of U.S. adults living with congenital heart defects

According to new research in the American Heart Association’s journal Circulation, more adults are living with congenital heart defects in the United States, creating the need for more health services and tracking systems to collect data across all ages, not just at birth. 


A new study estimates that about 2.4 million people – 1.4 million adults and 1 million children – were living with these medical conditions in the United States in the year 2010.  Nearly 300,000 of them had severe heart defects.  Compared with the estimates for the year 2000, these figures represent a 40 percent increase in the total number of people living with congenital heart defects in the United States and a 63 percent increase among adults. 

Click here to read more!

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Critical Congenital Heart Disease Awareness Week is February 7-14

In the United States, about 40,000 children are born with a heart defect each year. Congenital heart disease consists of various heart defects that are present at birth. About 40,000 newborns are diagnosed with this disease in the U.S. annually, and 25 percent of those cases are critical, meaning they typically require surgery in the first year of life, according to the Centers for Disease Control and Prevention. Congenital heart disease is also the leading cause of birth defect-related newborn illnesses and deaths in the U.S., according to the CDC.  During this Congenital Heart Defects Awareness Week, we appreciate the opportunity to share stories of those affected by CHD, and remember that everyone has a reason to live a healthier life. 

CLICK HERE for 'Born with Half a Heart' story. 

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Children's Hospital of Illinois Tour

Our Senior Director of Government Relations, Mark Peysakhovich, was honored to join Congressman Darin LaHood for a tour of the Children's Hospital of Illinois in Peoria on Monday. He got to see some of their youngest patients at the hospital’s amazing Pediatric Congenital Heart Defects clinic. Many thanks to the Children’s Hospital of Illinois in Peoria for the miracles they perform every day for these babies and their families! To see photos from the tour check out our Facebook page here! Remember Congenital Heart Disease awareness week is February 7th-14th!

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Survivor Spotlight: Owen Harris

Owen Harris South Dakota

Shortly after little Owen was born, their doctor told his family he had a very loud heart murmur and that they needed to do an EKG right away.  The doctor also said she would be consulting with a pediatric cardiologist from Sioux Falls.  A few days later, Owen’s parents met with the pediatric cardiologist and found out that Owen had bicuspid aortic stenosis. 

The plan was to watch him month by month and treat it with an angioplasty procedure. However, on June 12th Owen had a follow up appointment and he was sent immediately to the Children’s hospital in Omaha, NE. Owen’s aortic valve was narrowing and restricting blood flow.  Five days later, Owen had open heart bypass surgery to repair his aortic valve.  The following September, Owen was referred to a neurosurgeon for craniosynostosis but before he would do the surgery he wanted an okay from his cardiologist.

During his checkup with his cardiologist they found narrowing starting in his heart again caused by scar tissue. He was cleared for his surgery but would need to be checked monthly to watch his heart. In January Owen and his family got the news that the narrowing in his aortic valve had progressed and he would need a 2nd open heart surgery.

On February 3, 2015 Owen had his 2nd open heart surgery. They repaired his heart this time by using a donor valve.

Owen has recovered with flying colors. He is back on track and doing extremely well – living the life of a toddler! He will need to be monitored throughout his life, and possibly have more surgeries when he is in his teens or early 20's.

The Harris family credits all the research that has been done to diagnose and treat conditions such as Owen’s.  Amy and Scott hope that by sharing Owen’s story of treatment and survival, other parents will find hope and that early diagnosis of congenital heart defects can save young lives. 

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Kansas 2015 Legislative Wrap-Up

The 2015 Kansas legislative session recently came to an end after weeks of long and contentious debate. Thank you to our You’re the Cure advocates whose countless letters of support, e-mails, phone calls and visits with lawmakers were vital in helping us maintain heart healthy policies in Kansas! Below is a legislative wrap-up outlining all of the progress we made with your help.

 

 

Tobacco Tax

  • The Kansas Legislature approved a 50-cent increase to the state’s tobacco tax.
  • The new tax on a pack of cigarettes will be $1.29.
  • This is the 30th highest in the nation and roughly, 25¢ below the national average.
  • The tax will raise an estimated $40 million in additional revenue for Kansas while reducing smoking rates by nearly 7%.
  • 8,400 Kansans under the age of 18 will avoid becoming adult smokers.
  • 8,600 adult smokers would quit smoking with this increase.

Tobacco Prevention

  • American Heart Association advocated for additional prevention funding. We believe a stronger foundation was established and will continue to build on these efforts next session.
  • Less than $1 million is currently allocated for prevention from the state.
  • The CDC recommends Kansas spend $27.9 million on a program modeled after the best practices for prevention and cessation initiatives.
  • Adequately funding tobacco prevention programs in Kansas is critical to long-term, sustained reductions in tobaccos usage.

E-Cigarettes

  • Lawmakers approved several new provisions regarding electronic cigarettes.
  • Approved language establishes a tax on the nicotine-based refills for e-cigarettes.
  • The AHA is cautious of the language that could reduce future FDA regulations of e-cigarettes that is being developed nationally.
  • There’s still a lot unknown about long-term health implications of e-cigarettes and their efficacy as a cessation tool.
  • With so much unknown about the product it is dangerous to pass legislation, as Kansas did, without formal discussions and hearings.

Critical Congenital Heart Disease Screening (Pulse Ox)

  • A bill establishing standards for CCHD screening using pulse oximetry did not receive a hearing in the committee this year.
  • The Kansas Health Department and Environment announced all Kansas newborns are being screened.
  • The AHA is pleased that all newborns are reportedly being screened but we are concerned that compliance is voluntary. We will continue to push for legislation or administrative rules to ensure newborns are screened using pulse oximetry testing with recommended standards.

Thank YOU! Please stay tuned to your e-mails on how you can help us with our life-saving mission. As always, thank you for everything you do. We appreciate your advocacy efforts and support of the American Heart Association!

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Share your Story: Alli Sidel

Alli Sidel Michigan

Hi! My name is Alli.

I was born on May 12th, 2012 in seemingly perfect health. My parents and big sister Emma were so excited to meet me. On July 20th, 2012 my family took me to our family doctor for my regular 2-month well baby visit, and while there – my doctor heard a loud “whooshing” noise while listening to my heart. From there we went to see a cardiologist (a heart doctor) who ran an EKG* (electrocardiogram) and echo* (echocardiogram) on my heart.

My cardiologist discovered that I had a large VSD* and what appeared to be a small ASD* as well as aortic stenosis.* She explained what these were, and that while the aortic stenosis may be okay without intervention, the VSD and ASD would require open heart surgery, in the near future. Before we left her office, she had consulted with the cardiac team at C.S. Mott Children’s Hospital and I had a surgery date of August 1st, 2012.

I was 11 weeks old when I had surgery to repair my congenital heart defects. The VSD was quite large and required a Gortex patch between my ventricles. What appeared to be a small ASD was actually many tiny holes, which required my surgeon to cut out and repair with another gortex patch. It was determined that the aortic stenosis should be fine without any intervention once the holes were patched. My surgery lasted almost 4 hours, and I stayed in the hospital for 5 days. The typical stay for this type of surgery can be anywhere from 1-2 weeks, or longer if there are complications. I was lucky that I recovered so quickly and was able to go home with only a few daily medications.

I am now 2.5 years old. My heart repair was completely successful, and I have no medications or restrictions. I have no physical indicators of my defects or surgery, other than my scars. There are so many types of congenital heart defects. Many require multiple surgeries, medications, machines, and hospital stays. Many CHD’s are discovered in utero, and require surgery within a day or so after birth. Congenital heart defects are the most common birth defects in the United States. About 1 in 100 babies are born with a CHD. Approximately 40,000 babies are born in the U.S. with a CHD each year. CHD’s are the leading cause of infant deaths in the United States. Cardiovascular disease is the second leading cause of death for children 15 and younger. Up to 1.8 million Americans alive today have a CHD. More than 50% of all children born with a CHD will require at least 1 invasive surgery in their lifetime. Nearly twice as many children die from CHD’s than from all forms of childhood cancer combined. The number of adults living with CHD’s is increasing. It is now believed that the number of adults living with CHD’s is at least equal to, if not greater than, the number of children living with CHD’s. Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.

Thank you for reading my story.

Alli “Gator” Sidel

 

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Share Your Story: Stephani Remetta

Stephani Remetta Indianapolis, IN

Stephani was born with a congenital heart defect that went undiagnosed until she was 27. Told she had a heart murmur, the more serious condition was finally diagnosed after the birth of her son. The diagnosis, accompanied by the news that she would not be able to have more children, led to a dark time for Stephani that included depression and weight gain. In 2012, she made the decision to get healthy in body and mind.  She began eating a healthier diet, drinking more water and committing to exercise. She ran her first 5K in 2012 and is training to run her first half-marathon in 2015.

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Meet Doug Chew!

My name is Doug Chew and I'm a survivor and an advocate for the American Heart Association's "You're the Cure" community. I'm writing a blog about myself and my work as an advocate with the hope that something I say or do will save a life. I'm also hoping that you'll reach out to me about how you can help further our mission to build healthier lives free of heart disease and stroke. There's no better feeling than working with others to make a difference in people's lives. I will share a story about a life that was saved through advocacy, but first let me tell you a little more about myself. 

On Christmas Day of 2007, I was walking around Gray's Lake in Des Moines, ignoring an odd ticking sensation I had felt, when suddenly I grabbed my chest, unable to breathe, and my body went into a fetal position. For the longest minute of my life, I thought this is what it feels like to die. No more hopes or dreams, just this vise-like pressure on my chest. Luckily, after that minute, shallow breaths returned and my hopes and dreams once again had substance. My road to recovery included open heart surgery, and cardiac rehabilitation. One of my nurses was named Ann: she is part of the story.

For the past two years, I have worked with others to pass legislation to require the testing of all newborns for critical congenital heart disease. I have heard mothers speak of heart wrenching battles to save their child's life. I heard pediatric cardiologists speak to the efficacy of a simple, inexpensive test with a pulse oximeter that could detect a defective heart in newborns and allow for immediate, life-saving treatment. I added my presence and my voice whenever asked to urge the quick passage and implementation of this life-saving legislation. We were successful. Lives will be saved. 

And now the rest of my story. A few weeks ago I was working out at my local YMCA which is affiliated with Mercy Health (where I had my open heart surgery and cardiac rehab). For the first time in almost 8 years I saw Ann, who was still working with heart patients, and reintroduced myself. I told her of my work with "You're the Cure" and our success with legislation to test for newborn heart defects. She then told me her niece had recently given birth and the newborn was given the pulse ox test. A heart defect was found and the child was able to receive immediate treatment. That is one life that now will have hopes and dreams. I know there will be others.

Well, that's my story! As the Advocacy Team Leader for congressional district 3, I want to know more about each of you. Do you have a personal story that you want to share? Do you want to get more involved with our efforts to create a more heart-healthy Iowa? We welcome people who share our passion to make a difference. Let me know. I'd love to chat with you about ways you can get involved. You can reach me at jdchew1@aol.com.

I look forward to working with you in the upcoming legislative session and beyond. Together we make a difference!

Thank you for your time,

Doug Chew

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Share Your Story: Angie Eoff

Angie Eoff Saint Louis Park, MN

At the age of 25 I was diagnosed with Idiopathic Cardiomyopathy, a rare but serious condition that causes the heart muscle to become inflamed and to work less efficiently.  Over the next 6 years, I was implanted with an ICD twice and gave birth to a son in 2007.  I was placed on and off the transplant list throughout the years.  After tweaking the medicine I seemed to rebound, but in 2009 I started having issues with my stomach.  After going in and out of the hospital for stomach issues and having my gallbladder removed in February 2010, my cardiologists told me it was my heart.

On April 30th, 2010 I was admitted to the hospital and placed on the transplant list.  And every week in the hospital I was implanted with a new swan catheter in my neck.  Then on July 4th at 9 am the team came in telling me they think they had a heart, by 5 pm that night they said it was a match and by 9:30 pm that night I was wheeled out of my room and brought down for the surgery.  Since the surgery I am doing great and able to play again with my son and my husband doesn't have to watch over me 24/7.  I have been able to share my story through the Go Red For Women campaign and also help pass important legislation in Minnesota through my work with advocacy.

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My Story: Jimmy Leiter

Jimmy Leiter Deerfield, IL

I was getting ready to play football during my senior year of high school.  I had to see my family doctor to get my physical done, and because of a heart murmur and some other heart issues from when I was younger, the doctor insisted I get an echo. He told me that he wouldn't sign-off on my physical until I got an echo done. After a few tests they determined I have a serious heart defect called hypertrophic cardiomyopathy also known as HCM. So I was put on major physical restrictions which included no football. I decided to get another opinion done, at the children's hospital in Chicago just before my 18th birthday.  I had a bunch of tests done including an EKG, echo, stress test, and my least favorite, a heart MRI. And unfortunately the first doctor was right, I have HCM. I was so heart broken and very upset. My mother was in shock.   She had told the doctor that I had no symptoms and the doctor looked my mother right in her eyes and said the only symptom is dropping dead. I had to quit football which was the hardest thing to do, but my coach didn't let me go that easy.  He decided to make me team manager. I accepted the offer and even though I couldn't play, I could help. It wasn't easy sitting on the sidelines watching the others play, but I did know that God had a reason for it all.


Over the next couple of months I started getting really depressed because of not being able to do much of anything, I felt as I was on house arrest, but worse one wrong move could kill me. After high school I decided to follow my other dream of being a computer tech, since I couldn't do college ball or the military. So I attended Robert Morris University and finished my Associate’s within degree within two years.  I had a great job, but still had the bad heart. After some time and more life transitions, I had started noticed some major physical changes. I was getting shortness of breath, tiredness, and dizziness. My doctor ordered more tests, and this time the stress test had found that when my heart is under a lot of stress I have ton of blockage.  So they decided to sign me up to receive a defibrillator.  But after talking with the specialist for my defibrillator and telling her about some other symptoms I was having, she had mentioned it to my doctor and again more test were ordered.  It was determined that I needed to have open heart surgery to remove some of the muscle off the heart. I was devastated by the news and broke down.  I was completely scared out of my mind. This surgery wasn't rare, but it still one that is pretty risky. After a month of waiting for surgery day, I had said all my good-byes and see you on the other sides. The first surgery lasted for eight hours, followed by three hours for the defibrillator placement.  When I woke-up, I was in ICU and the doctor said everything went as according to plan. After spending just under a week in the hospital and being able to see and touch the Stanley Cup thanks to Coach Q and the Blackhawks, I was out and heading home.


The weeks that followed the surgery were not always easy. There were days were I felt as I could take on the world and then days were I felt as I was hit by a train. After a lot of prayer and advice I decided to go back to school, my doctor was very shocked that I "recovered" within three months of having the surgery, but the battle only was beginning. I had a rough start at school, but once I signed up for tutoring and got a new job at a local athletic club, I was able to drop 80 percent of my stress AND got myself in better health. By working at this health club for about four months I already had lost over 20 pounds and my blood pressure is better than ever.  My self-esteem is also better than it has been in years. People look at me and wouldn't even guess I had open-heart surgery because of how active I am active as well as the joy I have in my heart. And it is all because of one little angel, my doctor, telling me to get checked up and that checkup it ended up saving my life.

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