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KCTV: Local Photographer Receives Transplant After Diagnosis of Rare Hereditary Heart Condition

February 26, 2020


Five years ago when Robert went to his primary care provider, his doctor was concerned about some of his symptoms and sent him to the hospital.  It turned out Robert had experienced a mild heart attack and was completely unaware. He was referred to Saint Luke's Mid America Heart Institute's cardiology specialists. He had swelling and high blood pressure that they couldn't get to come down as well as other symptomatic signs and was sent to Dr. Bethany Austin, advanced heart failure and heart transplant cardiologist. 

"She referred me to Dr. Austin, and that is when an angel walked into my life," said Robert. 

After she made adjustments to his treatment plan his symptoms seemed to improve.  However, still unsatisfied with results Dr. Austin requested additional testing because she suspected he might have amyloidosis, a rare condition where protein builds up in the tissue and organs. Further testing proved Dr. Austin’s suspicions.  Robert had hereditary amyloidosis. Up until this point, he never knew he had this disease. This is where Robert met Dr. Brett Sperry, a Saint Luke's cardiologist and an expert in amyloidosis. 

Amyloidosis is a rare condition, affecting fewer than 200,000 people in the United States per year. Amyloidosis is when an abnormal protein called amyloid, which is produced in your bone marrow, and builds up in your tissues and organs. When it does, it affects their shape and how they work. It is a serious health problem that can lead to life-threatening organ failure. Hereditary amyloidosis (familial amyloidosis) is an inherited disorder that often affects the liver, nerves, heart, and kidneys. In our patient Robert's case - it was his heart. 

"One of the challenging things with amyloidosis is that often by the time it is diagnosed, substantial injury to the heart has already occurred," said Dr. Austin. "Fortunately, in the time since Robert's diagnosis there has been huge growth in options for treatment of cardiac amyloidosis, and the hope is that with increased awareness more patients will be diagnosed earlier."

Dr. Sperry has built Saint Luke's Amyloid Program at Saint Luke’s Mid America Heart Institute and made it a comprehensive center for testing and treatment. 

On Labor Day weekend, 2019, after exhausting all other options, he went to Saint Luke’s and underwent the screening process to see if he was a candidate for the heart transplant list. Even though it was a holiday weekend, he was able to see every physician, financial and spiritual aid worker, and more, and complete all the necessary tests and was approved to be put on the heart transplant list the Tuesday right after the holiday. On September 30th, only 28 days later, Robert received his new heart and became heart transplant recipient number 841 at Saint Luke's.

Robert says he "traded days for years," and is so thankful for the staff that helped give him a second chance at life. 

Robert was honored during heart month at The Kauffman Center for the Performing Arts as Saint Luke's Survivor Seat for his incredible story, tremendous attitude in the face of adversity, and his journey back to health.