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Back n Black

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I was born with a congenital heart defect called Myocardial Bridge (MB). Though I experienced symptoms throughout my life, I did not receive a formal diagnosis of my MB until age 47. For as long as I can remember I’ve experienced AFib, numbness in my left arm, dizziness, hand tremors and on occasion, would pass out.

I was an active kid participating in athletics throughout high school and into college. My symptoms were at their worse when resting. Sitting the bench, halftime, and post games were a struggle. I later learned with my heart rate high, blood would flow normally through the bridge in my heart. At rest, the blood flow would reduce, causing symptoms.  

As an adult I remained active, becoming an avid runner over the years. Unfortunately, the  MB caught up with me later in life. As I aged my heart wall thickened blocking the Left Anterior Descending (LAD) artery at the bridge. After a second heart catheterization in 2010, (first in '04) I learned of the defect. My cardiologist at that time encouraged me to remain active, though he said, “that half marathon isn’t going to happen”. He also told me surgery may be an option in the future, particularly if the symptoms worsen. They did. In April, 2019, after yet another heart catheterization, it was determined surgery was needed. The surgeon planned to perform an “unroofing” procedure where he would ablate the heart wall (“the bridge”) and release the LAD so blood could flow freely. However, in the OR the surgeon learned the artery “tunneled” too deep into my heart. He chose to perform a double bypass instead. Seems the flow of blood through the LAD was so poor by this time it blocked a diagonal artery; hence the double by-pass.

 

In ICU the surgery team ordered a beta-blocker, which I rejected causing my heart to stop 14 times over the next several hours. I remember the first time it stopped, a monitor  sounded and an ICU nurse rushed into my room. She was talking to a tech who was monitoring my heart remotely. I could hear her say to the tech "are you seeing this"? Soon a crash cart entered the room and the nurse placed two very cold AED patches on my chest. She looked at me and said "just in case". Two things you never want in your life, a crash cart at the foot of your ICU bed and two cold as hell shock pads on your chest.

 

That day was a struggle to say the least. But I believe all those early morning miles over the years paid off, or I just wasn’t ready to go? I do not know, here I am!

During recovery I began to research my chances of returning to an active

lifestyle. A lifestyle that would include running again. Before surgery I had one

surgeon tell me "your running days are over". The surgeon who performed my

bypass said "you'll be fine, go for it". That was Dr. Toon and he's a stud! For my

own peace of mind I wanted to find evidence of like patients who battled back to a

normal running routing, which I did. I also found stories of others losing their

lives. Now under the care of a sports cardiologist at the Saint Luke's - Mid

America Heart Institute in Kansas City, I have begun running again.

Why I'm Starting BNB

 

While researching during recovery I began to learn about Sudden Cardiac Arrest, in particularly in young athletes. I was amazed to learn that kids are dying by the thousands each year. As I dug deeper I couldn't find a singular initiative or collaboration in Kansas to stop this killer. I'm starting the Back N Black initiative to stop SCA in its tracks. How?

  • Educating parents about the risk of undiagnosed heart defects.

  • Stressing the importance of accurately completing heart questionnaires.

  • Stressing the importance of knowing family heart history.

  • Advocating for voluntary heart screenings.

  • Educating others to recognize SCA when it happens.

  • Empowering and encouraging bystanders to take action during a SCA incident.

  • Empowering and encouraging bystanders to call 911.

  • Encouraging others to learn hands-only CPR.

  • Encouraging others to learn how to active a nearby AED.

 

Please become a BNB soldier and join me in the initiative to stop SCA in its tracks. I'd be happy to help you start a similar initiative in your community.

 

Do you need someone to speak at your community or school event? Or, just want to know how to help. Please contact me through this website.

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Our team

Barry weis

Husband, father, son, runner, open-heart surgery survivor. Heart health advocate.

I started the Back N Black initiative to save lives of young athletes. If you are someone diagnosed with a congenital heart defect or experienced open-heart surgery, I'm here for you also. Take action or reach out.

Education:

  • Sacred Heart High School Knight grad. 3 x State Champ

  • Kansas Wesleyan Coyote grad.

background:

 

Community minded marketing professional just trying to make a difference.

jANE q. pUBLIC

All-around great human being

This could be your photo if you chose to joining me on this mission. Come on, I dare. Make a difference in someone's life. It might just change your life.

Education:

  • Your high school

  • Your university

Certifications:

Tell everyone just how great you are.

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