The Importance of Early Diagnosis

United States

The Importance of Early Diagnosis

My name is Jason Conway and I am a husband, father, and a teacher. I am 50 years old and have lived a normal, healthy life. I have always been active and have taken care of myself. I am also an amyloidosis patient.

My life changed drastically in January of 2015. I was with my daughter at my son’s basketball game and I started having cardiac problems. Being a guy, I just wanted to ignore the racing heart and the difficulty of walking up the bleachers. My daughter didn’t ignore the symptoms and made sure to tell my wife when we got home. In hindsight, I’m glad she did because the next day I was admitted into the hospital with cardiac related concerns. The doctors originally diagnosed me with cardiac myopathy. Dr. Wheat, a cardiologist in Valparaiso, Indiana, disagreed with this diagnosis because cardiac myopathy is hereditary and there is no one in my family who suffers from it. Dr. Wheat pushed to have a cardiac MRI done. I am thankful that Dr. Wheat crossed my path, I can only imagine what my life would be like today if fate didn’t put Dr. Wheat and me together. A Cardiac MRI is such a simple procedure, but for me it was a life saver. Eleven days after showing symptoms, I had my diagnosis – Amyloidosis. That cardiac MRI was crucial to my chances of survival.

That cardiac MRI was crucial to my chances of survival.

Amyloidosis quite often gets misdiagnosed. However, that was not the case for me. My diagnosis occurred exactly 11 days after my first symptoms. Dr. Wheat read my MRI and diagnosed me with amyloidosis. I can still vividly remember the day that this occurred. Libbi, my wife, and I sat in Dr. Wheat’s office. I knew something was really wrong with my heart, but I figured my diagnosis would include a change in lifestyle and medicine. I was not prepared for the onslaught of new words and phrases that included amyloidosis and oncologist. I was 44 years old and my life was flipped upside down.

The road to recovery has not been easy. Since my diagnosis I have received 16 weeks of chemotherapy and a stem cell transplant at Northwestern Memorial Hospital. This was in conjunction with multiple medications and very long hospital stays. Currently, I am in hematologic remission and receive maintenance chemotherapy every 12 weeks to maintain remission.

Living with amyloidosis is challenging. Most days, I feel as if nothing is wrong, but I am aware that I do have an incurable disease. Some days, I just don’t feel right. I am way more fatigued than someone of my age should be. Often, the simplest of tasks becomes a major chore. The complications associated with amyloidosis are too numerous to list and different for every patient. However, I take solace in knowing that without Dr. Wheat and his early diagnosis of my amyloidosis, my life would be exponentially more difficult.

The Importance of Early Diagnosis – Jason – UNITED STATES