A Patient’s Perspective
I was born with a condition called coarctation of the aorta and bicuspid aortic valve. Around 5 days of age my parents noticed I was breathing fast and took me to the local hospital. I was life-flighted to the children’s hospital and one day later had corrective surgery. As a result of this life-saving surgery, I have been able to lead a very normal life with only some limitations. For example, as a child and teenager I had wanted to play football like my older brother, but was restricted from playing football or other contact sports because of my congenital heart disease. Though this was hard for me at the time, as an adult I’m glad that I didn’t play those sports that could have not only been hard on my heart but hard on my body as well.
As a child, I saw my pediatric cardiologist annually and would also get an echocardiogram to ensure my heart was doing well and my aorta had not narrowed. At 14 years of age my aorta narrowed again which required a balloon angioplasty to expand the aorta. As an adult, I first went to an adult cardiologist but they are not trained to care for adult patients with a congenital heart defect (CHD). When I moved to Salt Lake City, I transferred my care to the adult congenital cardiologists at the University of Utah. The adult congenital cardiologists were familiar with my diagnosis, how to care for me as an adult, and the most common complications that should be monitored and anticipated.
I am not the only person in my family affected by CHD. My brother and my oldest son were also born with coarctation of the aorta and a bicuspid aortic valve. It was emotionally taxing when our oldest son was diagnosed with coarctation of the aorta but having lived with it myself provided a lot of comfort. Standing by his bedside I remember thinking, I have the same thing and I’m right here, he is going to be okay. My wife and I have three other children. Our son is the only one with a heart defect, but our daughter had a part of her brain that did not form and subsequently has developmental delay. For personal interests, I enjoy playing board games, cycling, paintballing, and pretty much anything outdoors.
Ever since I was young I have had the desire to work with children with CHD. I have a bachelor’s in nursing and am currently enrolled at the University of Utah in the doctorate of nursing practice program. For my doctoral project, I am creating a transition of care program that will help teenagers with a CHD manage their care and transition to adult providers.
I felt that my transition from adolescent to adult care was lacking and returned to a pediatric provider to get the necessary care until I found an adult provider trained in adult congenital cardiology. The transition program will provide more than just finding an adult congenital cardiologist. The program will include topics such as ensuring the adolescent understands their medical condition and medications, becoming comfortable talking to providers, learning how to make appointments and contact their providers with concerns, understanding insurance and how to obtain it, future employment and education considerations, how to prevent complications of their disease, and family planning. When I complete my education I hope to continue to work in the congenital cardiology clinic in some capacity.