“Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations.” – Jeremiah 1:5
Hi, I’m Gena. I am an executive assistant and office manager by trade, as well as a certified trainer, nutritionist, and public speaker. This website is here to share my everyday experience of being one of the oldest living, thriving patients with my rare congenital heart defect. My hope is to share my journey so that others like me may have a guide and a real perspective on what it is like to really live with ACHD. I want to bring light to a place that was very dark for me and give way to those behind me. That is why I am here sharing my actual mended heart with all of you. Not the technical stuff most of the time, the day-to-day real stuff.
At 38 years old I am very blessed to have family and friends who love me, help me keep it real and push me forward on a daily basis. 🙂 In my heart I believe that life isn’t about how much time you have, it is about how you are making each day a memory. Looking back I have learned a great deal of strength, patience, love and the importance of all things. I am sharing my story for everyone out there that needs support or information about health, fitness, congenital heart defects and heart disease. A lot of congenital heart patients don’t know that you can live a healthy and fit life or what to expect.
Over the last few years I have grown and learned that I want to share my journey and help all people. I want to be a voice for a younger generation of heart patients, and for people of all ages shapes and sizes. Heart disease does not discriminate.
Here is a little about my congenital heart defect.
My Diagnosis: (Boring, technical doctor stuff)
1. Heterotaxy syndrome with dextrocardia, situs inversus, RV dominant AV canal, pulmonary stenosis (valve and subvalve)
2. Bilateral superior vena cava
3. Interrupted inferior vena cava with azugous continuation
4. Status post modified Fontan – with bilateral bidirectional Glenn shunts, hepatic veins to left atrial appendage, lateral tunnel with 12 mm Hemashield, MPA ligation, and atrioventricular valve annuloplasty (6/92)
5. Left pulmonary artery stenosis
6. Status post LPA stent
7. Small aortopulmonary collateral vessel
8. Residual flow through MPA
9. Coil Occlusion of aortopulmonary collateral vessel
Each heart defect patient is unique. We all have our own story, our own quirks, and our own specific defect.
Wikipedia describes a congenital heart defect (CHD) as a defect in the structure of the heart and great vessels which is present at birth. Many types of heart defects exist, most of which either obstruct blood flow in the heart or vessels near it, or cause blood to flow through the heart in an abnormal pattern. Other defects, such as long QT syndrome, affect the heart’s rhythm. Heart defects are among the most common birth defects and are the leading cause of birth defect-related deaths. Approximately 9 people in 1000 are born with a congenital heart defect. Many defects don’t need treatment, but some complex congenital heart defects require medication or surgery.
For a list and detailed descriptions of heart defects visit www.heart.org.
My heart in 2016 looked like this:
So that is, as we say in the south, “the nitty-gritty” of it all in regards to my defect. It is a part of who I am. It does not define me. My life is made up of obstacles like everyone else. They are not necessarily harder, just different. But, if you read my blog, you’ll see! 🙂