Not Cured

Hi readers, my name is Tracey, and I write to you today as a 49-year-old woman with tricuspid atresia (TA), hypoplastic right heart syndrome, atrial septal defect, and ventricular septal defect. I have had three heart surgeries: the BT shunt, the Waterston shunt, and the RA-PA Fontan (on the surgery front, I also have scoliosis and wore a Milwaukee brace for 5 ½ years, then had a Harrington rod placement surgery in 1983).

I spent my childhood, teen years, and some of my young adulthood with clubbing fingers, cyanosis, and low energy. My Fontan was performed in 1988. I came out of college to have the surgery, and finished college with a BS in microbiology the following year—and I thought I was cured. I was excited I was “pink” and I had so much more energy.

After college, I ended up in Washington, D.C., and found a regular adult cardiologist. I felt I was always doing well. I felt well, and I was none the wiser. After I moved to D.C., I decided to get my degree in nursing.

Post-graduation, I worked in an adult cardiac surgical ICU for many years, then I moved to a pediatrics CICU. I learned as a nurse that pediatric cardiology and adult cardiology were vastly different. I had a pediatric cardiologist who I saw for several years until she passed me to her colleague, who cared mostly for adult CHD patients. I still thought I was cured, and I think all my physicians felt I knew about future complications because I was a nurse.

It was during my pediatrics CICU orientation that I learned about the different types of Fontans, why they were changed, and complications that could and would occur. While I worked with adults, I cared for two women who also had TA, as well as a Fontan—they were there for heart transplants. I couldn’t understand why they needed a transplant. My sister had a friend in California who also had TA. She had a pacemaker and was on Coumadin. I thought she must have a different condition than I had because I had no problems, and I was only on a baby aspirin.

After working several months at that job, I cared for a baby with TA. I told his parents that I too have TA, how well I was doing, and that I have not had complications for almost 25 years. I wanted to give them hope that maybe their baby would do well. Soon after, I sat down to chart, and my heart started to beat really fast and didn’t stop. The tachycardia had never happened before. I put myself on the monitor, and I was in atrial flutter. I couldn’t believe that was my heartbeat and rhythm!

In 2013, I was in the hospital at least five times with a flutter. I was cardioverted, ablated, and had a physician want to place a pacer in me while I was visiting Detroit. I was given several anti-arrhythmic medications until they found the right one. I was also put on a blood thinner, and I chose Xarelto because I am a vegan. I have been free of atrial flutter for two years now; however, I now live life knowing I have to decide if and when I will have the Fontan revision.