A Personal Journal To Better Know Your Congenital Heart Defect.
Hello, I have created a comprehensive journal tailored for individuals with congenital heart defects. The goal is to empower patients to communicate effectively with their cardiologists, enabling them to better understand and manage their unique CHD. This journal will be a valuable tool to facilitate discussions about important topics that may otherwise be overlooked during doctor-patient consultations. This journal encourages the CHD patient, to delve deeper into their heart health, enabling them to record essential information obtained during medical appointments and examinations. By utilizing the prompts in this journal, patients can better understand their condition, fostering a collaborative partnership with their healthcare providers to optimize cardiac care.
Note, I too am a congenital heart patient. My parents were first told I had Blue Baby Syndrome. The doctors later diagnosed me with Transposition of the Great Vessels, with symptoms of Tetralogy of Fallot. Over time, I underwent several medical procedures, including two open heart surgeries, multiple cardiac catheterizations, stents, ablations, and ICD’s. My primary objective in creating this journal is to offer a tangible, enduring resource that will accompany congenital heart patients throughout their life’s journey. In my own experience, I relied heavily on my parents’ knowledge and their recollections, but the absence of a written record meant crucial information could be lost or forgotten.
Maintaining a detailed and organized journal can preserve essential information for future reference, ensuring that one’s medical history remains accessible and informative. This journal is an invaluable resource that empowers CHD patients, allowing them to take control of their heart health and foster a collaborative partnership with healthcare providers as they navigate the complexities of living with a congenital heart defect.
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