Standing Ovation!
“At first they thought it was anxiety,” Melissa Thomason began her deeply moving and inspirational story. Melissa’s first pregnancy was complicated by preeclampsia, requiring delivery 5 weeks early by C-section. Her elation was short-lived when she experienced “a bulldozer sitting on her chest and shortness of breath” two hours after her Cesarean delivery. She was told that anxiety is frequent after child birth.
“Thankfully, my OB listened to me and ordered a CT scan of my chest.” A nightmare: The severe pressure, pain and shortness of breath were caused by eminently life-threatening dissection of her thoracic aorta. Melissa was taken to a regional medical center where she underwent emergency repair of her aorta. Melissa expressed profound gratitude for the skillful surgeon and caring team that brought her back to health. When she was discharged and on her way home, reunited with her newborn son and husband, “The sky looked bluer and the air smelled sweeter.”
The nightmare recurs, even more pernicious. Melissa is told by her primary care physician that she has a very rare genetic disorder, Loeys-Dietz syndrome, that accounted for her aortic dissection and would now require a complete rebuilding of her entire aorta. “If you think having your chest cracked open is bad, try having your entire chest and flank opened, with 108 staples needed to close the wound,” she said good-naturedly.
Fast forward three-plus years. Melissa spoke with great sincerity, humor and resonance to several hundred clinical leaders and health care administrative executives at the Patient Centered Primary Care Collaborative Fall Conference. She inspired us and reinforced vital lessons on the criticality of building trust between patients and their families and their health care teams. Melissa spoke convincingly of the improvements in health care delivery and patient outcomes that may be achieved by actively involving patient advisers and patient councils to offer feedback, be involved in quality improvement initiatives and, thereby, positively transform health care. We gave her a well-deserved standing ovation.
Steven R. Peskin, MD, MBA, FACP, is associate clinical professor of medicine at Rutgers Robert Wood Johnson Medical School and is governor of the American College of Physicians, New Jersey South.