Share Your Story: Lexie Amerin

Meet Lexie Amerin!

My name is Lexie Amerin and I am a 17 year old senior at Southwestern Heights High School. My heart problems occurred while I was in my mother’s womb but weren’t realized until after I was born.

I cried once but then I stopped breathing and they had to resuscitate me. This is how I entered the world.  I was immediately airlifted to Children’s Mercy in Kansas City where they discovered my heart defect. I had been diagnosed with severe Pulmonary Stenosis plus a hole in my heart. My pulmonary valve’s opening was the size of the tip of a pencil. It was too small for my blood to flow through.

In my first 24 hours of life, I had a Heart Catheterization done to allow my blood to flow to my heart. I was in the hospital for 21 days, where twice I code blue and had to be resuscitated. I had severe acid reflux and had surgery to place a feeding tube in my stomach to prevent me from throwing up my food and allow me to gain weight and grow. I was tube fed until I was 5 years old.

As time went on, I grew and continued to thrive. I went to my cardiologist in Wichita every 3 years and my heart was doing well. I played sports such as volleyball and basketball, and I participated in gymnastics and dance. Everything was going great.

When I got to junior high I wasn’t feeling so great, however. I felt like my heart kept skipping beats and had an abnormal rhythm. We went to my cardiologist and they had me try numerous heart monitors but none of them seemed to work. I still didn’t feel right. I went back up to the doctor to do more stress tests where I was told I had to limit my exercise and I couldn’t play sports anymore.  I decided to become the manager so that I could still be a part of my team.

My oldest sister, Kaylee who also has pulmonary stenosis but not as severe, was seeing an adult cardiologist in Kansas City. He said that he would take me as a patient, so I made the switch as well.

My freshman year I was cleared to cheer and play softball at my own pace. I was the JV pitcher and I felt that I was improving throughout the year. I went to the cardiologist for an appointment and learned that I needed more tests. The next visit I was given the news that I needed open heart surgery to replace my heart valve. We decided on replacing it with a pig valve.

June came around and before we knew it, our journey began. We drove to Rochester, MN to the Mayo Clinic where they began running tests. When I was there, I found out that I have another rare heart defect called Ebstein’s Anomaly. This is basically that my tricuspid valve wasn’t formed normal and so it made my blood backflow, causing my heart to enlarge even more. My right ventricle was so enlarged, it was the same size as the rest of my heart. The day before my surgery, we decided to wait for my heart to enlarge a little bit more so the valve could be replaced with an adult sized pig valve which would last longer. They wanted to wait another year before the surgery.

But then sophomore year came. I had to quit cheerleading because yelling took too much of my breath away. Softball was where I, and everybody else, could really see me going downhill. I tried my best throughout the year but my body just physically could not take it. I couldn’t run my own bases anymore, I couldn’t pitch more than an inning. I couldn’t play summer softball because the heat took too much out of me. I would sleep for 12-14 hours to recover after a game or any activity.

One day at softball camp for the little kids, my mom came and told me that she got the surgery scheduled for July 16. I was happy but honestly I was so scared, it was so soon. Before we knew it, July was here.

We started on our 15 hour journey again. We got up to Minnesota and I went through the same tests that I did before. I knew it was for real this time. I was prepared for the surgery. My surgery was to replace my pulmonary valve with a pig valve, to fix my tricuspid valve, and to close the hole in my heart. The last thing that I remember is seeing bright lights, and the doctors looking over me, then I was out.

I woke up around midnight in the ICU. I had a breathing tube that had to be taken out which was one of the most difficult things I have ever done. When they moved me from the ICU to the PCU after surgery, I walked a wheelchair all the way up. Looking back, I have no clue how I did that. I stayed in the hospital for only 4 days. I walked up and down the hallway each day, progressing more and more. On day 3, I finally got to go outside. On day 4, I finally got released from the hospital. It took me about 6 weeks to get back to a full day of school, but finally I made it back.

I went to the doctor three months after my surgery for a post-op checkup where he cleared me to full activity and told me that my heart has shrunk down to a somewhat normal size. It still doesn’t feel like it happened but I feel so much better. This softball season will be the first season I’ll be able to play like a normal girl on the team. I’ll be able to run, pitch, and hit like everybody else for the first time in my life.

Having this surgery doesn’t mean that it’s over. The valve will need replacing in about 15 years.  By then, I won’t have to have open heart surgery, but rather just a one day surgery where they replace it with what is called a melody valve. I’m just one of the many examples of someone living with a congenital heart defect. Without my surgeries, I wouldn’t be here today. My surgery was the best thing that has ever happened to me, it saved my life.  I will go back for my 1 year checkup in July.  I encourage everyone to educate themselves and spread awareness of heart disease.