A Patient’s Perspective

Joseph’s Story

My name is Joseph and I was born with CHD (Congenital heart disease). My first open heart surgery was the day I was born. I had my second surgery when I was just over 1 year old and my 3rd when I was 7. To be honest, I don’t remember much of those surgeries. Right after my 3rd surgery I had started 2nd grade. During 2nd grade I had to carry around an oxygen tank with me everywhere I went. I missed a lot of school that year due to my health problems and about half way into 2nd grade I had a pacemaker put in. It was the only time I spent my birthday in the hospital. Even after I got my pacemaker I still got tired really easily and my lips would turn blue (a sign of low oxygen in the body) when I would exercise very much. My health problems never kept me from acting like a normal kid. I played with friends, went to school and even participated in PE. Even though I felt like a normal kid I couldn’t quite keep up with my friends and peers. For the next several years I had little to no problems with my heart. I acted, was treated, and felt like a normal kid. Then in 5th grade my pacemaker had one of the wires go out so I got my pacemaker replaced. After that I went back to being in good health and acting like a normal kid for about 2 years. Between 6th and 7th grade my family moved to the next town over (so not far from where we were). Due to the move I made some new friends. Since I was around 12 years old I was supposed to be growing, but because of my heart I wasn’t. Around the beginning of 7th grade I developed protein losing enteropathy (PLE). PLE is a condition where your body does not store protein. After being diagnosed with PLE I was put on a high protein diet and was put on steroids. Unfortunately, I did not like protein since my body didn’t want it and the steroids didn’t work to get rid of the problem like they were supposed to. I tried a few other types of medication to help solve my PLE (one being an injection I had to give myself) and none of them worked.  The only other option for me was to get a heart transplant. At this point I had finished 7th grade and was heading into 8th. My body had become really weak where it was exhausting for me to sit through school and I wasn’t allowed to participate in PE. Due to this extreme exhaustion I dropped out of school and became home schooled. In November of my 8th grade year I was put on the heart transplant list and I received a transplant just 2 months later. After the transplant I was in the hospital for 3 weeks. By the end of the 3 weeks I was ready to get out of my little room. For the next 4 months I wasn’t allowed to go anywhere but the hospital and my house. I could have friends and family come over and visit (if they weren’t sick). I had weekly biopsies and doctor appointments to make sure my body was not rejecting my heart. There was a ton of medication I had to take to keep my body from rejecting my heart. I was allowed to go back to school for 9th grade and I was even allowed to participate in PE. I finally felt like a normal kid again and I even started growing. Since my transplant (10 years ago) I became an eagle scout, I went on a LDS mission, am now married, and going to nursing school. I still have to go see the doctor every 3 months and I get a big work up every year. Now I feel more normal than I ever have.