a half of a heart with a bright bird taking off in flight

A Wonderful Life With Half a Heart

I have congenital heart disease. Congenital heart disease does not have an outward appearance that others can see. One looks “normal” while possessing an underlying risk of heart failure. The right side of my heart never fully formed. 

A very fulfilling lifestyle

At first glance, one might think having such physical limitations would require one to live a less than “normal” life. On the contrary, such a condition presents different opportunities to have a very fulfilling lifestyle.  Everyone’s body is different. We all have different skills and abilities. I just had to figure out what things would be satisfying to make the best of what I had. That’s exactly what I try to do while remaining positive despite my so-call physical handicap.

What is a single ventricle heart disease?

Most people are born with four chambers in their hearts. Two atriums (holding chambers) and two ventricles (our pumping chambers). I was born with a left ventricle and two functioning atriums.

The right ventricle pumps blood to the lungs to oxygenate then returns the blood back to the left ventricle that pumps the blood to the entire body. In my case, I was not born with a right ventricle resulting in a reduced ability to oxygenate my blood. This heart disease causes shortness of breath, lack of oxygen (cyanosis), and irregular heartbeats. I could not walk more than a few steps without running out of breath before my surgeries.

My journey to better health

I was given my last rights on the fourth day of my life. In 1983, children with this disease had a low chance of survival past their first week of life. Passing this critical milestone, my projected lifespan was extended until age one. Still, with not very good odds, my parents frantically searched options, uncovering the newly approved Fontan procedures at the University of California Los Angeles (UCLA) Hospital.  

The Fontan procedure converts one’s right atrium into a quasi-right ventricle. In 1988, I was one of the few children initially approved for the Fontan procedure. The surgery lasted nearly 12 hours and was a complete success. I consider myself very blessed.

My new life expectancy was extended to my late teens. With by blood oxygen level now at a “normal’ range of 95%, I started growing and living a life of a normal young girl. I have one limitation. Elevations greater than 5,000 feet will cause me to go into heart failure. Camping in the Rocky Mountains is out of bounds. So what? I like the beach anyway. I can still fly since airplanes have pressurized cabins.

A second reconstructive surgery

Feedback gained from the numerous case studies uncovered that the original Fontan procedure puts excessive wear on one’s right atrium. At the age of 17, I had my second heart reconstructive surgery called the Fontan Revision at the University of California San Diego (UCSD) Rady Children’s Hospital. This surgery eliminated the right atrium and replaced it with a pacemaker (size of a silver dollar) and a Gore-Tex tube.

I now have two chambers in my heart, one ventricle, and one atrium. Both of these are functioning left chambers. Having surpassed all the doctors’ original expectations, my life expectancy has been extended to my sixties. My life expectancy will most likely increase again due to new technologies and better surgeries.

Living with a single ventricle

One tends to grow up fast spending lots of time in hospitals. You become a quick learner of life and death. Remaining grateful for what you have is important. Having a tenacious positive attitude also drives me so that each next day will be better than the last. I take precautions while quietly pursuing my life to its fullest. I dance, sing, play sports, and even hike. I look forward to sharing my many lessons learned with others.

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