Annaleci was taught at a young age how to speak up for herself. She found, as she grew up, just how important that is , especially when it comes to her healthcare and advocating for her needs.This week, Anna shares her story with us.
My life growing up, from an outsider’s point was hectic, but this was my family’s normal. From the moment I was born nothing went as planned. The two young parents were expecting a healthy baby and instead 8 hours after I was born, were told that their child only had a 10% chance of living. Little did my parents know, that moments like that will be their normal for the rest of their lives. Even though I survived the first 2 surgeries after so many complications, my family and I have always lived on our toes. Just waiting for the next 6 month checkup to see if we were in the clear or if it was time. While I grew, I became more and more conscious of myself and that what I was born with will never go away.
My parents were the type to always answer my questions with complete honesty. Along with that they pushed for me to have a great understanding of myself. I don’t just mean the medical definition of my defect, but how to tell if something was wrong with my body. My mother, especially, taught me how to put how I was feeling into words, which, in return, taught me how to really talk to my doctors myself. From a very young age, I remember my mother telling me how important it is for me to do the talking at appointments. I am extremely thankful for that now because when I go to the doctors, I go in by myself and have the ability to sit down and advocate for my health.
I was not warned very much about the transition into adult care. In the beginning, I felt as if I was going to be clumped into a group of adults with acquired heart problems. I was nervous that I would be over looked, but I made my worries apparent during appointments. I was given a choice between staying with my cardiologist or switching to an adult CHD specialist. I decided to go with the specialist, and so far I’ve noticed that during my appointments we talk a lot more about my social life and what my future looks like. Also usually there is a social worker with us, who talks to me about transition, the mental emotional sides of things, and future plans/goals. During these recent appointments I have learned how important it is to be able to speak for myself. Along with that, I have gained a greater appreciation for all of the hard work that my parents have put into giving me the best education and medical care growing up. It’s not easy juggling everything from appointment planning to navigating the medical system. There are support systems put in place that really do help you navigate, what feels like a never ending pile of paperwork and questions. I have learned this past year the importance of knowing myself, and to accept that this is my normal, and that’s ok because I am extremely lucky to be where i am in life today.
Annaleci Lamantia is18 years old and lives in Western New York, in a small town named Avon. She was born with a complex CHD called Truncus Arteriosus Type 2. Her first open heart surgery was at only three days old, a second surgery was at two years old, and her most recent was at twelve years old. Annaleci has struggled throughout her life with chronic pain, a weakened immune system, and depression/anxiety. School wasn’t easy, but with determination and support from her family and peers, she graduated last year. Now at this point of her life, Annaleci is trying to figure out this difficult transition into adult care and working on managing her health on her own.