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Julie Smith Nebraska

Heart disease has always been of importance to me even before I became a nurse.  My parents both had cardiovascular disease identified when they were in their 50s.  It affected their lives then and as they aged.  Being from a rural area, when my father had his first heart attack at age 52, a service from a boarding state was the closest EMS we had and they were a volunteer service.  Their answering the 911 call and driving on the dirt roads in the middle of the night made the difference for my Dad.

That is one reason I am so passionate about my work with Mission: Lifeline in Nebraska and the work toward the Statewide STEMI (ST Elevated MI) System of Care.  It allows me to help those type of services continue to be there for their rural neighbors.

Mission: Lifeline through the American Heart Association offers the opportunity to identify the continued gaps in rural areas where funding and education are needed to bring the latest equipment and quality care to our rural residents.  As a registered nurse, I continue to see the necessity for public education, improved systems of care and collaboration between EMS and healthcare, both urban and rural.  There remains a need for coordination of the many projects and initiatives that are going on throughout the state so we can maximize the use of our sometimes limited resources.

Our work with the STEMI Task Force which includes stakeholders from across the entire state is allowing Mission: Lifeline to pull together those resources and work towards a cohesive Statewide STEMI System of Care. This group is learning from other systems in a model sharing approach, and also continues to identify needs throughout the state.  Funding and possible legislation will be needed in the future to help sustain the great work of the Task Force and these stakeholders.  We are not able to fund all the EMS services in the state that respond to 911 calls in rural areas and the work of grassroots and advocacy groups will be needed to continue to move forward with this initiative.

Mary Michaels South Dakota

My Dad is Why.

It was the month of May; I finished my second year of college and moved back home for the summer.

I was a kid that actually loved hanging out with my parents. As the youngest of 6, I was raised going everywhere with them – concerts, plays, community events, or trips to visit family. I was looking forward to getting back to my summer job and having time to relax with my parents.  Less than a week after I got home from college, however, our world turned upside down.

It was a Tuesday morning, and my mom and I were awakened by a loud bang.  My dad had collapsed against the door of the bathroom. My parents had recently downsized from a house to a condo, and I knew there was a doctor in the building. I first called 9-1-1, and then went to find help while my mom started CPR.

It was sudden cardiac arrest. He was only 57. He was gone.

I think my dad is why … through an interesting twist of fate many years later … I was led to a job with the American Heart Association.  I know my dad is why I became so passionate about healthy living and health promotion.

My family and I enjoy getting out and being active – whether at home or when we travel. Our son’s initials are JIM, in honor of the grandfather he never got to meet.

When I joined the American Heart Association, I wanted to do my part to raise awareness about heart disease and keep families together longer … to keep other daughters from losing their dads and not being able to share special events like college graduation, a wedding and the birth of a grandchild.

Through my work with the American Heart Association, I was able play a role in ensuring high school students have physical education to teach them the benefits of life-long physical activity, in protecting residents and visitors from secondhand smoke through our statewide smoke-free law, and in helping our very youngest South Dakotans get screened for congenital heart defects right after birth.

Today, I work with Live Well Sioux Falls – a community-wide initiative to help our residents Breathe Well, Eat Well, Feel Well and Move Well. It is rewarding to see individuals make healthy lifestyle choices, to help employers invest in their employees through worksite well-being and to work with great community partners (like the American Heart Association!) to create a healthier place to live, work, learn and play.

Written by Amy Norton, Spencer's mom

You NEVER think “it will happen to you” but… “it” happened to my family, my son. At only ten weeks old my son was fighting for his life. This is his story…

Spencer was born at home, on 11/08/13, with a team of experienced midwives. He was a healthy 9.1lbs., and appeared completely typical. He was perfect. Absolutely perfect. Except he had a secret, Congenital Heart Disease. He kept this secret for a long time. Almost too long.

At 24 hours postpartum, our midwives came back to our house to check on Spencer. Again, everything appeared typical, no physical signs of distress. Therefore, no oximeter was ever placed on him.

On day 7 Spencer was seen by our family doctor. Again, he appeared typical. He was back to his birth weight. Latching on and eating well. His body was doing an amazing job at compensating for his lack of oxygen. Too good of a job. No one ever thought it medically necessary to check a “healthy” boy’s oxygen level. So, he continued to hold on to his secret.

December 21st, Spencer caught his first cold along with my husband, daughter and myself. We got better after a few days. Spencer stayed sick, in fact, he was getting sicker. Worry set in.

I took Spencer back to the doctor.  He was now 8 weeks old. At this appointment I expressed my concern about his cold. I emphasized that something didn’t seem right. I asked, “could it be allergies or asthma?” I didn’t know to ask if it could be heart disease, I wish I did. Spencer had only gained 6 ounces over his birth weight. STILL no oximeter was placed on him. I was advised to come back in two weeks. However, Spencer didn’t made it two weeks.

My husband and I had had enough. Spencer was still sick, his skin started to look dusky and we knew something was wrong. We called the local children’s hospital and spoke with a consulting nurse. She immediately said to call 9-1-1. The medics arrived. This was the first time an oximeter was placed on my son!  He was now 10 weeks old.

Trauma began. Things progressed from a phone call to an airlift in a matter of hours. Before we knew it, we were standing over our happy baby in an induced coma at Seattle Children’s Hospital. This is where, literally, at the eleventh hour, we learned of Spencer’s secret. Our sweet boy was born with Congenital Heart Disease.

Things quickly went from bad to worse! ONE day after getting our son to the hospital he was placed on life support. He remained in the hospital for 6 weeks. Fighting for his life.

If an oximeter was placed on Spencer at 24 hours old, he never would have got as close to death as he was. Yes, he still would have had heart disease. Yes, he still would have needed open heart surgery. But he never would have suffered the way he did. If my husband and I were not advocates for our son I am afraid his outcome would have been different. An unbearable reality.

An oximeter test is so simple. It saves babies lives! As a mother who has lived through the unbearable, I ask, why is it not a statewide requirement that every child not tested? No matter where a baby is born in Washington, it should be protected from a tragic story like Spencer’s. Spencer is a miracle. We are blessed he survived. NO baby should suffer like him, not when it is so simple to detect.