“She’ll never live.” Those were the first words my mother heard from her nurse after I was delivered. “Your daughter is blue, weighs only 3 pounds, and has some kind of heart defect. Don’t worry, you’ll have another.” This took place over fifty years ago. I’ve proved her wrong.
Growing up, I felt a sense of isolation with my undiagnosed congenital heart disease. Why couldn’t I be as active as the other kids? Why did I continue to gain weight? No one I knew had a congenital heart problem, much less the rare defect I possessed. When at the age of 19 I was diagnosed with Ebstein’s Anomaly, my whole world changed. What was the prognosis? Would I lead a normal life? I had more questions than answers
I’ve discovered that I am truly able to thrive, not just survive, with congenital heart disease. It has led me on quite a journey, leading me to be an active volunteer, advocate, and spokesperson for women’s heart health and congenital heart disease issues. I feel truly blessed to be able to use my disease to help others. Hence the publication of my book, A Journey of the Heart: Learning to Thrive, Not Just Survive, With Congenital Heart Disease.
I never envisioned writing a book when I started keeping a journal about living with heart disease. I started journaling well before surgery as a way to help me process what I was going through pre-surgery and would potentially be going through post-surgery. When I combined the writings about my pre- and post-surgery experiences and challenges, I realized I had quite a story to share with other heart patients.
On my heart journey, fellow congenital heart patients have encouraged me, motivated me, and shown me what is possible to accomplish even with a serious illness. I’m hoping this book reads like a conversation—one congenital heart patient sharing her journey with another, helping the reader realize that he or she is not alone with the worries and concerns that come with living with congenital heart disease. In some small way, my hope is that this book will inspire those living with congenital heart disease--or any illness--to also thrive, not just survive.
This is my story. It is my journey getting to and through adulthood with a congenital heart defect. It is a story of pain, perseverance, and triumph, and of denial, acceptance, and victory over congenital heart disease (CHD). And I am not alone. The estimated number of adults living with CHD—one million—equals or exceeds the number of children living with CHD.
“Celebrate each victory, no matter how small."
HEART JOURNEY GALLERY
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