A life without shortness of breath, a feeling of actually getting air when taking in a deep breath, and being able to exercise without being discouraged by my mind wanting to push harder and my body saying, “Uh, no, we’re not doing that” is such a trivial yet, amazing feeling.
Did you know, according to the American Heart Association, heart disease is the leading cause of death for men and women in the United States? And heart defects are the most common birth defects, according to the Adult Congenital Heart Association. Almost one in 100 babies are born with some kind of heart defect.
I was born with the heart defect tetralogy of Fallot. “Tetra” meaning “four” and Fallot being the last name of the French physician who recognized these four heart problems.
I believed that shortness of breath, heart palpitations and a racing heart was all a part of life with a congenital heart disease. Little did I know that it was not over. Little did I know that my pulmonary valve would disappear. Little did I know that I would have open heart surgery AGAIN. Little did I know that I would need special treatment for the REST OF MY LIFE.
Since developing congestive heart failure in 2014 which led to an implantable cardioverter defibrillator (ICD or pacemaker), an ablation and pulmonary valve replacement, I have learned more about cardiac disease than I thought I ever would. I had four corrective open-heart surgeries as a child then went about my business. I have lived a life of traveling, living alone, working full time, graduating from college, sometimes even working two jobs while going to school, completing 5k races and mud runs (by walking mostly), becoming SCUBA certified and more. Through it all I would breathe heavy, be short of breath and have to slow down but I did it all with perseverance.
Since my fifth open heart surgery in late 2014, I feel better than ever. I never knew life could be like this. I have yet to experience any shortness of breath or gasping for air unless I’m exercising. I think, is this what a “normal” person feels when they are exercising? Is this what it feels like to be “normal?” I wouldn’t know and every day it is a very strange concept for me to grasp.
But there is more than just the physical aspect of living with a heart defect. There is an emotional side as well. It’s beyond frustrating when your mind is wants to do one thing but your body wants to do another. I would have to say though, the past three years have been the toughest.
Because I believed that the trauma of multiple surgeries was behind me and the surgeries as a child “fixed” me, it never occurred to me I would ever become “sick”. When it did happen, it was such a shock, some would say I was in denial. Yes, I agree I was partly in denial and partly, I truly believed I was healthy.
Allow me to paint a picture of the six weeks leading up to finding myself in the emergency room early one morning. I had been laid off from my job and since I had always wanted to visit Alaska, I decided to work in Alaska for the summer. One night, half way through the summer season, I didn’t get much sleep and the next morning I was nauseous. As the weeks progressed, I wasn’t able to lie flat, I had chronic edema and I could barely eat. I was also chronically sleep deprived.
On my way home to California, I flew into Seattle to visit my best friend. My flight landed in the wee hours of the morning and we headed straight for the emergency room. From there, another journey began.
I write about my story today to bring awareness to the millions of adults living with congenital heart disease. Thanks to technology and medical advancements, we are able to live longer. But a healthy emotional body is just as important. If you believe you are well, then you are.
Some disabilities are not visible to the naked eye but they are just as important. With awareness and education, many more lives can be saved.
You can read more of my story in my book…I Didn’t Know I Was Dying and How I Live(d)