In September I was able to attend the ACHA 7th National Conference. I got lucky that my work wife and fellow Fontan, Tracey, was able to attend as well. There were three different “tracks” at the conference. One track was geared more towards patients, while the other two were more for professionals: nurses, doctors, surgeons, medical students… you get the idea. So what were two pediatric cardiac ICU nurses/single ventricle patients to do? We were struck with a very important question: patient or professional?
Technically, I was a patient before I was a professional. But now I identify first as a nurse. I am a nurse more often than I am a patient. I don’t want to miss out on any important information that patients should know about – like my fellow blogger Christy’s presentation on insurance. But I don’t want to miss out on any new medical breakthrough or treatments that could help me and my fellow ACHD patients. At the same time I want to meet more ACHDers. Do you see how back and forth I was and how truly difficult this decision was for me?
So what is a nurse patient to do? She e-mails the lovely folks who work at the Adult Congenital Heart Association to ask if the conference is like a buffet where she can pick and chose from the different tracks. Or once you pick a track—then would I be married to it? Lucky me, this fantastic conference used the buffet approach. Tracey and I wouldn’t have to choose one of our split personalities!
I was learning about the use of different drugs, new surgical techniques, and research in the field. I was able to meet many ACHDers just like me. I was blown away when groups were split up into cardiac defects. There were so many Fontans/single ventricles in one room. It was amazing to see and really feel that I am not alone. I saw a friend from attending Advocacy Day a few years ago.
But my hands down favorite thing of the conference occurred at the beginning. It was a patient who was sharing his story—forgive me because I forget his name—when he said something that completely resonated with me. He said, “I just want to be old enough to die of something else.”
ACHDers want to prove people wrong. We want the things everyone else wants. We want to grow old, dream big, complete those dreams and just have an amazing life. Together with our doctors and each other, hopefully we can do just that and have an amazing journey along the way!
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