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Caitlyn: Truncus Arteriosus, 28

Hello! My name is Caitlyn MacKay. I was born with Truncus Arteriosus. I was born in 1990 and am 28 years old. I underwent my first major open-heart surgery at the age of 3 months old; I live in Columbus, Ohio but at the time they were not doing the procedure I needed so I was flown to Boston Children’s Hospital. At the age of 13 years old I needed to have my ticker upgraded so we went back to Boston. In September 2017 I underwent my 3rd open heart surgery; we went to DC National this time because my original surgeon was transferred there a little while ago. During this most recent procedure I was given a bovine valve; before this I only had 3 valves. I have been fortunate enough to not have any other organs affected by my CHD. The majority of my life I have also been fortunate enough to not be on any medications. Since my most recent surgery I am only on 1 baby aspirin a day. I try my best to eat healthy.

About 5 years ago I found “clean eating.” Clean eating is the eating of whole foods and staying away from fast food and processed foods. When I was growing up I never was able to exercise. However, in the more recent years I was cleared to start exercising! A family friend of mine is a personal trainer and she was more than happy to start working with me. We discussed my heart background and she helped me to find my love of working out without getting my heart rate too high. To this day I still see her about once a week but the majority of the time I do at home workouts.

I also was able to attend college: I have earned 2 degrees; a bachelor’s in psychology and master’s in healthcare administration. My daily life is a pretty busy one. I have a full-time job with The Ohio State University helping faculty & staff work on their own health & wellness goals. My hobbies include hanging out with friends, working out, singing in community choir and church choir, playing drum set and being a ballroom dancer.

In regards to children: my doctors have always told me that if I did decide to have children it would put me in an extremely high risk situation. But personally, I have never felt that “pull” to have children that most women feel. I have decided to not have children; nor to adopt but rather be the fun aunt & fur mama! My parents divorced when I was 6 years old - My parents continue to support me and my CHD; even when I was growing up. No parent wants to have an unhealthy baby. Since my parents were divorced at a young age it was mainly just my mom and me. My mom attended every appointment, every treatment, every surgery. She has been my biggest supporter and advocate over the years. Both of my parents are remarried – which means I have an even wider support group to lean on. I am so thankful for every one of them.

I have many favorite quotes but one of my favorites is “Sometimes the bad things that happen in our lives put us directly on the path to the best things that will ever happen to us.” I think this represents CHD patients perfectly; to most CHD is a “bad thing” however without it I wouldn’t have found this community and some of my best friends.

My advice to anyone involved CHD children is to never give up, remember CHD requires lifelong care and you are not alone. I have always lived in Columbus, so growing up I saw my pediatric cardiologist here in town. He retired last year but I was already in the process of being fully transferred over to the Adult Congenital Heart Team here in Columbus with Dr. Curt Daniels. Since my surgeon; Dr. Richard Jonas; moved to D.C. I gained another cardiologist; Dr. Russell Cross and his cardiac team there. The only thing I wish hospitals would do better is care coordination between different locations. Some CHD patients, like myself have to go out of state for care, but we have to coordinate our own care between facilities. This includes getting multiple copies of reports and sending them over ourselves. Hospitals should have a coordination team in place to help us with this process. But I know that’s wishful thinking. I was lucky enough to grow up during the technology era; this helped my family and I a lot. I wish my parents had a better support system for them in place because not having the support from other parents of CHD kids can be rough.

My final thoughts are if you have a chance to meet other CHD patients or to attend a National Adult Congenital Heart Association Conference. Do it! Meeting fellow heart patients helped me to feel not alone and some are my best friends; even though we are spread out across the country. Thank you to Stephanie for allowing me to share my story and I hope my words help to motivate other CHD patients to tell their story.

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