Patient Stories

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Jaycee Elliott is CardioSmart

Despite living with a congenital heart defect for over thirty years, Jaycee Elliott has learned to be grateful for each day and to face life's challenges with a positive attitude.

Jaycee Elliott stays on top of her condition through a team-based care approach with her cardiologist and pacemaker/defibrillator team.
Going through such a life-altering event gave Jaycee Elliott a perspective on what life is really about and taught her to appreciate the simple things

The challenges I've endured have made me the person I am today.

Jaycee Elliott: Congenital Heart Defect patient

While listening to my heart during a routine doctor’s visit, the pediatrician heard a rare sound that led her to believe I may have an abnormality. She immediately told my mother to take me to the hospital, so we headed to OU Children’s Hospital in Oklahoma City. At two and half months old, I was diagnosed with a congenital heart defect known as Tetralogy of Fallot with Pulmonary Stenosis, a very complex defect.

I had a quarter-sized whole in my heart and my arteries were very small in diameter. My pulmonary valve and artery were narrow at the distal ends and there was a thickening in my right pumping chamber. In addition, I had a small connection between my pulmonary artery and my heart.

I have had seven open heart surgeries and other procedures in hopes of correcting the abnormalities. My surgeries began at three months old, when an attempt was made to enlarge the opening between my pulmonary artery and my heart. At six months old, doctors placed an artificial shunt on my left side to increase blood flow to my lungs. Then, at 18 months, an artery from my right arm was used as a shunt to further increase blood flow to my lungs.

One of my biggest surgeries came when I was 3 years old, when I received a homograph piece in order to try to increase blood flow that was being hindered because of small arteries. At age 10, a routine catheterization turned near fatal. As my doctor turned the corner of my artery with the catheterization wire, it punctured the pulmonary artery and blood went into my chest. I had to have immediate emergency surgery to repair the hole in the artery. I lost several units of blood and was put in a medically-induced coma for almost three weeks.

What doctors thought was going to be a grave outcome became yet another chance at life. I had to go through extensive therapy in order to learn how to walk, write and gain strength back in almost every part of my body. Going through such a life altering event gave me perspective on what life is really about and taught me to appreciate the simple things.

Unfortunately, the homograph piece I received at age 3 calcified when I was 18. I had to have a pig valve placed in the soft tissue below the homograph piece to take over the workload that the homograph piece could no longer do.

Shortly after, my heart began to beat at a very fast rate and I was subsequently diagnosed with ventricular tachycardia. My heart rate has reached over 250 beats a minute during episodes of tachycardia. As a result, I had a pacemaker/defibrillator (ICD) implanted. Since the implantation, I have been shocked three times, all while still conscious.  While the pain of being shocked is extremely unpleasant, my ICD has saved my life on more than one occasion.

I am 30 years old now. I graduated from The University of Oklahoma with a Bachelor’s degree in Communications in 2008 and got married to my amazing husband in 2009. We have been married for six years and bought our first home together three years ago. Due to my condition, I am unable to have children, so we recently got a dog that we treat just like a human.

Since my life expectancy was predicted to be very short, milestones like graduating from college and getting married were very special and exciting. These milestones were not only exciting and special to me and my family, but also to my doctors. While my fight with a congenital heart defect will never be over, I have learned to take it one day at a time and be grateful for each day. I try to make the best of each day I am given and I am thankful to God for giving me the gift of life. I pray my story inspires and uplifts others going through difficulties in life.

How do you work with your doctors and care team to stay on top of your heart condition?

Through regular check-ups with my cardiologist and the pacemaker/defibrillator team, I am able to stay on top of my heart condition. I try to make note of any issues I am having and present them during my appointments or over the phone if needed. Because I take several medications daily, I have regular blood tests and wellness assessments done to ensure correct dosage. My doctors are very receptive to any concerns I am having and we work as a team to make decisions about my healthcare.

What lifestyle changes did you make to improve your heart health?

As a result of my heart abnormality, I have quit consuming all caffeine and have worked with a nutritionist to learn about healthy eating habits. I try to take walks and exercise when possible, but am aware when I am pushing myself too far.

What challenges do you face? How are you able to overcome them?

When I was young it was difficult seeing other children play and run, knowing I would get too winded to keep up with their pace. Even though I was limited at times because of endurance, my parents always encouraged me to try new activities. If I was unable to participate, I found an alternative. I have also struggled with self-image issues, because of my scars. However, I was taught to embrace my life and my “battle” scars and not compare myself to others.

Who is your support system?

I have an absolutely wonderful support system that undoubtedly begins with God. He has given me this life to live and I can always go to Him in prayer through any situation I face. I also have wonderful family, friends and doctors who uplift and encourage me through every obstacle. The people in my life, including my doctors, always give me the strength to keep going when I feel like I’ve had enough.

Do you have a personal motto? What inspires you?

My motto is found in the Bible in Philippians 4:13. It reads, “I can do all things through Christ who gives me strength.” I couldn’t make it in this life without my faith. The challenges I've endured have made me the person I am today. I have learned that there is a story behind every face. Their story may not be the same as mine, but it’s inspiring to see others handle difficult situations with grace and positivity. I hope to overcome every obstacle I face in the same manner and inspire others with my story.


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