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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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Share Your Story: Jolene Tesch

Jolene Tesch Shakopa, MN

A poet once wrote of a dear friend’s death, “…‘tis better to have loved and lost than never to have loved at all.” On August 11, 2010 I truly understood the depth of this quote. The life-long pain of loss can be eased by the memories you shared with your loved one and the love you will always have in your heart for them.

I never contemplated doing advocacy work until after the arrival of our second child, David Dwayne. David was born a seemingly healthy baby on May 21, 2010. He had good color, good weight and a great appetite. However, in the evening hours of his birthday and the early morning hours of the day that followed he didn’t seem quite the same. It was a frantic turn of events in those early morning hours that lead David’s oxygen starved body to multi-system organ failure and into a NICU bed. He was diagnosed as having a rare congenital heart defect called Hypoplastic Left Heart Syndrome - a condition that needs immediate medical intervention. After multiple surgeries, plenty of complications, a roller coaster of emotions and 2 ½ months in the hospital we were finally able to bring our little monkey home – a day we aren’t likely to ever forget. In the late morning of August 11, 2010 David took his last breath while napping. The love I have in my heart for him and every memory I have of him are what get me through each day without him.

It was that love for him that began my path of advocacy work for those affected by congenital heart defects. Since David’s death, I have had many fantastic mentors that have taught me so much about congenital heart defects, pulse oximetry and pre-natal detection. But it was Annamarie Saarinen who led me to the American Heart Association during their help to get every baby born in Minnesota screened for critical congenital heart defects through use of pulse oximetry. During the 2013 legislation committee hearings I was able to share David’s story and highlight the importance of early detection for critical congenital heart defects using pulse oximetry. After this initial introduction to the American Heart Association, I realized it is more than just David’s story that has made an impact on my life – it is the loss of a brother from a congenital heart defect, the loss of an aunt from sudden cardiac arrest, the loss of a grandmother from a stroke, the loss of my father-in-law from a heart attack, an uncle and a nephew living with a congenital heart defects, many family members and friends that have dealt with the aftermath of a heart attack and the deep seeded belief that my two earth babies, Charlie and Raina, deserve a healthier world to live in. All these reasons led me to volunteer for the State Advocacy Committee. I have so much to learn and so much to do and I have found the right people to help teach me more along the way. I am hopeful that David’s story and my passion will help save lives for generations to come.

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Kansas Hospitals Not Required to Administer Lifesaving Pulse Ox Test to Newborns

A simple test could save a child’s life, but hospitals in Kansas are not required to offer it.  This inexpensive, easy, lifesaving test to detect critical congenital heart defects, known as pulse oximetry, is required in more than 30 states across the country including Missouri. The Kansas Department of Health and Environment currently recommends that pulse oximetry not be incorporated in the statutorily required screenings. 

“In partnership with the Kansas Department of Health and Environment (KDHE), the American Heart Association, along with other organizations across the state, and passionate congenital heart defects families, are currently working on a quality improvement program focused on pulse oximetry that they hope to unveil later this year,” said Kevin Walker, regional vice president of advocacy for the American Heart Association.  “While our association supports the development of a quality improvement program, we do not believe it should delay mandatory testing of all newborns.” 

Pulse ox screening is a non-invasive, inexpensive test that can potentially save a child’s life by detecting more than 90 percent of all critical congenital heart defects. 

Kansas (Concordia) resident Kim Reynolds had an uneventful pregnancy.  Following the birth of their third daughter Breckyn, they noticed something wasn’t ‘quite right.’  However, no one at the hospital seemed concerned and they sent the Reynolds home with their newborn baby girl.  Weeks later, the entire family attended their local Harvest Festival when Breckyn turned blue.  Horrified, Kim Reynolds remembers walking up to the local physician saying, “What’s wrong with my baby?!....please help!!”

Breckyn was immediately transported to the local hospital then sent by ambulance and flat-lined multiple times on her way to the airport.  Quickly thereafter, she was life-flighted to Children’s Mercy in Kansas City.  “I found myself envisioning her funeral instead of kissing my baby as she woke up,” Kim noted.  “Her organs were failing her and my newborn baby was dying in front of my eyes.” 

“When Breckyn arrived at Children’s Mercy, we discovered she had a critical congenital heart defect know as transposition of the great arteries,” noted Dr. Stephen Kaine, pediatric interventional cardiologist with Children’s Mercy in Kansas City. “Most often, this type of heart defect can and is detected within the first 48 hours of life IF a pulse oximetry screening is performed.   

A routine procedure can correct the issue within the first few weeks of life, but in Breckyn’s case, it was too late.  Dr. Kaine explains, “There is a small window in which a correction procedure can be performed and have effective life-long results.  Unfortunately in Breckyn’s case, while we continue to do everything we can, she has a terminal diagnosis associated with a lack of early detection.  Simply put, if Breckyn had been given a pulse oximetry screening within the first 48 hours of life, treatment of her heart defect would have been very different and likely allowed her a long, healthy and vibrant life.” 

To date, Breckyn Reynolds has undergone four open-heart surgeries and 11 heart catherization procedures.  She is now five years old living with a terminal diagnosis – doctors don’t know what the future holds or how long she has to live.  She takes medicine twice daily, is on oxygen nightly, can’t run, play sports or be around anyone sick and is seen by the cardiologist every three months.  Additionally, the Reynolds family has medical bills totaling more than $2 million. 

When Breckyn asks her mommy and daddy, ‘Why did God make me with a broken heart?’ Kim replies to her daughter, “In hopes that you will pave the way for other babies to have brighter futures and to give other mommies and daddies the assurance that their child will be okay.”  

The American Heart Association plans to continue their work with KDHE and their CCHD Work Group on the pulse oximetry quality improvement project, but notes that mandatory testing and a quality improvement program are not mutually exclusive.  Walker explains, “They can, and should co-exist.  A quality improvement program will certainly improve testing and data collection but does not guarantee ALL babies born in Kansas will be tested.  That is why the American Heart Association supports required testing and it should begin immediately.  The delay in rolling this out means we are placing the littlest lives at unnecessary risk, like that of Breckyn Reynolds.” 

“Pulse Ox screening can help detect problems before symptoms appear,” explained Dr. Kaine. “Oftentimes, the symptoms of those conditions are not evident at birth. With infants going home sometimes as early as 24 hours after they’re born, they may not start showing those signs of turning blue, having a heart murmur that can be heard or having breathing issues before they leave.” 

The test consists of sensors placed on a newborn’s hand and foot to check blood oxygen levels. If levels are too low, additional tests may be conducted that aid in detecting critical or possibly life-threatening heart defects that might otherwise go undetected.

“The equipment is in the hospitals. It takes less than five minutes, less than $4 to administer and is as invasive as a Band-Aid. It just makes sense,” Dr. Kaine said.

One out of every 100 babies is born with a congenital heart defect, the number one birth defect and a leading cause of infant death in Kansas.  According to the Centers for Disease Control and Prevention, about 7,200 children are born with critical congenital heart defects each year. As many as 1,000 of those are discharged without the defects being detected.

If Kansas residents want to learn more or want to be more involved with this issue, contact the local American Heart Association at (913) 652-1913 or visit www.heart.org/KC.  Expecting parents should ask their birthing facility if they currently test all newborns for congenital heart defects using pulse oximetry. 

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A big win for Wisconsin!

On Monday March 3rd, Governor Scott Walker signed Senate Bill 523 into law.  This bill gives the Department of Health Services (DHS) the authority it needs to add congenital heart defect screenings to the list of screenings that all newborns receive before they leave the hospital.   The American Heart Association will continue to work with DHS to ensure that Pulse Oximetry testing is officially added to the newborn screening list.

You can check out all the pictures from the bill signing event on our Facebook page: https://www.facebook.com/AmerHeartWisc and be sure to give them “likes”!

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If We Can Save a Child's Life With a Simple Test, Shouldn't We?

Recently the New York Times published an article talking about Pulse Ox titled “The Simple Test That Saved My Baby” stating that “The new screening is recommended by the United States Department of Health and Human Services, the American Heart Association and the American Academy of Pediatrics. Yet more than a dozen states — including populous ones like Massachusetts, Pennsylvania, Florida, Georgia, Wisconsin and Washington — do not yet require it.”  

Kansas is among those states that do not require it.  

So what is Pulse Ox and why should you care?  This basic test consists of sensors placed on a baby's hand and foot to check for low blood oxygen levels - a significant indicator of heart issues in babies.  It’s quick, painless and inexpensive.  

While the test is not currently required in the state of Kansas, many hospitals have taken the initiate to do this test on their own accord.  However, if it were performed on EVERY baby prior to leaving the hospital additional lives would be saved because congenital heart defects are the most common birth defect in the U.S. and the leading killer of infants with birth defects.     

We need your help.  Efforts are under way to encourage the non-participating hospitals to start voluntarily performing Pulse Ox on all newborns, but in the meantime you can: 

Bottom line is this: When a baby is born, there is so much to be excited about. Is it a boy or a girl?  Who does she look like?  What color is his hair?  But at the end of the day, parents just want a healthy baby. If we can help save a child’s life with a simple test, shouldn’t we?

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It's Official: Pulse Ox Screening Required for All Illinois Newborns

Governor Quinn signed HB 2661, our bill requiring that all newborns in Illinois be screened for critical congenital heart defects via a quick, cheap, and non-invasive pulse oximetry test!  This bill ultimately took just over a year to pass, beginning with the terrific work of our dedicated volunteers on a special advisory committee to the state, continuing with no fewer than nine committee and floor votes in the legislature, and ending with the Governor’s signature.  Thanks to all of that work, all Illinois’ newborns will now be screened for critical congenital heart defects, a practice which will help save lives for years to come. 

Check out this great letter to the editor from passionate advocate Joe Goldzweig that appeared in the Chicago Tribune.

Remember that saying thanks is also important!  Please take a moment and send a message to Governor Quinn thanking him for protecting the littlest hearts in Illinois.

This is a big victory for families across the state, and it is also yet more proof that we can make great things happen with your help!   You ARE the Cure! 

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Share Your Story: Sara Chrzanowski

Sara Chrzanowski Marengo, IL

When I was 6 months old it was discovered I had a heart murmur.  A catheterization was done to determine the issues.  The defect was not determined to be severe enough to repair it at that time.  Shortly after I moved to Illinois from Michigan with my family.  My heart was monitored over the years seeing my cardiologist regularly with minimal medication, no restrictions, and lived a normal life.

When I was 13 I began sleeping a lot more and tired easily.  I went to see my cardiologist and was told everything was fine.  My parents wanted a second opinion because of concern over my sleeping habits.  I went to my next cardiology appointment and it was found that my heart was not keeping up with an active and growing teenager.  It was time that the heart murmur be repaired.  Just after my 14th birthday I had another cardiac catheterization to repair the murmur.  After being injected with dye so my heart would glow the doctors discovered even more problems.  Two more major congenital heart defects that went undiagnosed for years.  An arterial septal defect, which in short is an opening in the wall between the right and left atrium letting oxygen-rich blood flow through to mix with the oxygen-poor blood in the right atrium.  They also found a defect with one of the pulmonary veins that was returning 50% of my blood to the wrong side of the heart and not to the rest of my body.  After discovering these new defects the repair of the murmur was then aborted. 

I awoke instinctively asking if I was cured only to be told that I now needed open heart surgery to fix bigger problems.  After the initial shock, I learned that not repairing my heart would have left me with a life expectancy of my early-twenties and risk dying at the drop of dime under strenuous physical activity.  As you can imagine, this was a lot for a 14-year-old to take in.  A year later I had my open heart surgery at in Chicago.  This time when I awoke I was told it was a success! 

Today I am a successful interior designer.  I travel often and spend my time enjoying being with my family and friends, and I have a long full life ahead of me with no restrictions.  I still have a mild heart murmur and a scar; that I have come to see as beautiful reminder of how lucky I am to be alive.

Because of the generous donations to the American Heart Association, amazing research and technology advancements continue.  Which is why, years later I’m still here.  And will be for many more to come.

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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 - Lynn Paulson

Lynn Paulson South Dakota

For two years, I played a dangerous game with my heart. I kept experiencing a racing heart and shortness of breath episodes that lasted a few minutes at a time.

With my busy work and travel schedule, I just chalked it up to normal anxiety and stress, but when my symptoms worsened, I went to the doctor. They placed me on a portable heart monitor and diagnosed me with atrial fibrillation, a disorder found in about 2.2 million Americans.

To rid my heart of the extra electrical connections that were causing my heart to beat irregularly, doctors performed a cardiac ablation. Today, I am back to my normal self, working out regularly and enjoying life.

As a volunteer for the American Heart Association, I am sharing my story with others – especially women because, like me, we have a tendency to ignore the signs and symptoms of heart disease – so that other lives can be saved.

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Pulse Ox screening in the news

Check out this recent article from the Milwaukee Journal Sentinel about the efforts to ensure that all babies in Wisconsin are screened for congenital heart defects before they leave the hospital. The article leads off with a story from one of our You're the Cure advocates:

Hope Patchak thought maybe she was just being overzealous when she kept telling doctors something was wrong with her baby.

"When he was born, he was very blue — crazy blue," said Patchak, 33, of Oak Creek. "I asked, 'Why is he so blue?' and the nurse said, 'Oh, he'll pink up.'"

Patchak took her baby, Simon, to the pediatrician three or four times over the next two weeks. Finally, the pediatrician put a pulse oximeter on his hand and foot to measure the oxygen saturation in his blood.

A healthy saturation is 95% or greater. His was 65%.

Click here to read the rest of the article.

 

If you'd like to help the American Heart Association thank the bill sponsors in the Senate and Assemby, please click this link to take action: http://yourethecure.org/aha/advocacy/composeletters.aspx?AlertID=33472

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