Kirsten Luttrell: HLHS, 28



Hi, my name is Kirsten Luttrell. I was born with HLHS at Swedish American Hospital on 2/13/91 in Rockford, Illinois. When I was one week old I had my first heart surgery where they widened my aortic arch with mesh and then did it again at 3 months.

Both of those surgeries where done by the Auxiliary Incision Method, (under my left arm). I’ve had multiple caths and procedures in between having the Ross-Konno, that’s when I got my first pacemaker, eventually replaced with an ICD (pacemaker/defibrillator) after some concerning arrhythmia. I currently deal with many issues, Mitral Valve Stenosis, sub Aortic Stenosis, Shones Complex, tachycardia, PTSD, anxiety and depression.

I have been seeking counseling recently, learning how to cope and working through it.

My home is in a small town in Illinois. I live with my longtime boyfriend, Austin and our dogs, Star and Nibbler. I love spending time with my family, I provide daycare for my cousin’s daughter and son. I love learning to sew and cook from my grandmothers.

My energy and endurance have always been limited. I’ve never been able to run or do anything too physical. Exercises that work best for me are yoga and walking my dogs.

I’m so thankful to my parents and my grandma for being there with me for every surgery and appointment. Mom would stay with me while Dad and Gram would stay at the Ronald McDonald House. I have an older brother Derek, he would stay with my Great Gram and visit on weekends.

I’ve been blessed to have great doctors and surgeons. My first was Dr. Bruce Hecht, I was very close to him, he moved to Arizona. Surgeon Carl Backer from Children’s Memorial in Chicago. I currently see Dr. Frank Zimmerman, he is an amazing man too. He is so patient with all of my question, great listener and very soft spoken.

I wish my parents had the resources and social media then that there is now, it was very scary for them, they felt very alone. There is so much more support these days, it’s great to see all the available resources and groups.

My advice to anyone dealing with this is to never be afraid to ask questions. The more you know, the better you will feel.

My favorite quote, that I found on one of Stephanie's blogs, is, “Behind every child who believes in themselves is a parent who believed in them first.”

I’d like to thank my parents for believing in each other and always believing in me.


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