A Patient's Journey in Curating Her Medical Team for Whole Person Care

Twenty-nine years ago I was born with Short Bowel Syndrome, which required me, from birth, to depend on feedings through a gastrostomy tube and central line. To this day I require IV nutrition daily. I am not yet thirty years old, and I have had 65 surgeries, including a small intestine organ transplant, and bilateral hip replacements. I understand how the medical system works—and where it fails. I now have an incomparable level of knowledge and first-hand experience with our healthcare system that I hope to use to enlighten and educate.My care for the last three decades has not been whole-body. Instead, it has been fragmented highly subspecialized care, leaving me doing well in the short term, but with no cohesive long-term plan. I had discussions with my current medical care providers, I left teams that were inadequate, I inquired opinions of new doctors from around the country and curated my own team of professionals from 3 states in order to LIVE not survive in a hospital. The result: Whole person care with me as the driver and coordinator.I will impart pieces of my experience to understand what it takes to create the “pit crew,” the healthcare system was not providing me, and how you as a medical provider can be the best advocate for your patient on their “pit crew.” Hear real examples of patient-provider interactions, the vital importance of shared decision making, and the details behind true compassion that inspire whole person care.