Hi, this is my story
My name is Jane Ennis and I was born on January 5th 1995 with my aortic and pulmonary arteries twisted, so I had a transposition of the great vessels at birth. When I was two and a half I was having a routine checkup cath and I started failing on the table. I was having a massive aortic leak so a mechanical valve was put in the aortic position. I also have pulmonary stenosis in both the left and right arteries which are now both double stented. My first OHS was in Chicago and my second and third were in Tampa.
My mechanical valve has been doing well which I am very thankful for however, the narrowing in my pulmonary arteries is an ongoing debate. It isn’t anything urgent but it is something my doctors have been keeping a close eye on.
Physically I am doing okay right now but mentally is where I am struggling. My anxiety has been higher in the last couple of years which I have been taking medication for. I think the medication helps but I also try to exercise 6 days a week and do breathing meditations when I can. I also take heart medication, coumadin. This is supposed to change my diet but I am not great at following the food rules. I am supposed to be consistent with the greens I eat, like spinach and kale, because it makes my coumadin levels fluctuate.
I am a 24 year old University of Central Florida graduate currently working two part time jobs until I can save up to move to NYC. I love makeup and I have a small YouTube channel - CyborgBeauty that I also use to cope with some of my anxiety. Filming and editing is a good distraction for me when I am feeling overwhelmed or needing an escape. Special effects makeup is something I am experimenting with and I love trying new looks, beauty and gore!
My energy was at its worst from fifth to ninth grade, about age 10-15. This is when I was growing out of the mechanical valve that was put in when I was two and a half. My valve was replaced at age fifteen so after a good year of recovery my energy levels were back up. Luckily, I haven’t felt that way in a long time now but anxiety and depression definitely affect my energy.
I have an amazing support system of family and friends that I have been lucky enough to surround myself with. My mom is the person in my life who doesn’t let the nurses and doctors off the hook until they explain everything and make us understand why they need to do what they do. I believe every CHD patient needs that in their life.
My mom once had the anesthesiologist play a meditation while I was being put under and I woke up the calmest I ever had. She always had the doctors walk me through the surgery rooms and recovery rooms before surgery so I wasn’t anywhere unfamiliar. My older sister is the person in my life who makes me feel like the coolest person in the world. My whole life she told me how awesome my scar is and that the ticking noise my valve makes is her favorite sound. She always wants her friend’s to listen to it when I first meet them. My dad is the person in my life who never lets me forget how proud he is of me. Between sports I did as a kid to school to personal achievements, he always reminds me how strong and brave I am. And lastly, my best friend is the person in my life that takes my mind off all of this. She plans the trips we take and the adventures we go on and I would not have half of the stories or memories I have without her in my life. She makes me laugh in a way that no one else can and understands me better than almost anyone.
My advice to CHD parent’s (including my own) is to let themselves off the hook. There is no guide book on what do to for parenting in general and there definitely isn’t one for kids with CHD so whatever felt right to you at the time, was right. You didn’t parent too much or not enough, you didn’t ask too many questions or too few, you didn’t cause the anxiety we feel from CHD, you did everything you could to make my life amazing and you succeeded. None of us asked to have CHD but you helped us get through it and that is the most important part to us. Whether you didn’t know what to do or say in certain moments didn’t matter, the fact that you were (and are) by our side, is what matters to us.