Giving thanks for my sister & the innovators that have kept her alive

Hillary Ginsburg

Hillary Ginsburg

Whether you corral big data or design hardware, as an innovator in health care perhaps sometimes you feel as though you work behind the scenes. May this story remind you that your contributions to health care and medicine are truly lifesaving and positively impact the way people live, both now and into the future.

I want to introduce you to the story of my younger sister. Medically, she has “been around the block,” “circled the drain” numerous times, and then “been around the block” again. Few people would deny that she is lucky to be alive. Due to the fragility of her condition, her survival relies upon a dedicated medical team, advances in biomedicine, and many of the literal products of healthcare innovation and design.

A glance at the front of her 23-year old body reveals more holes, scars, tubes, lines, and devices than the Operation figure. Underneath the thick, nine-inch scar running down the back of her neck lies impressive titanium hardware, bone grafts, and scar tissue, all resulting from numerous neurosurgeries she has undergone since 2010 to keep her head from crushing her deteriorating spine. Her G-tube, J-tube, central venous Hickman line, and permanent tracheostomy are other visual artifacts of her medical journey and daily life. Additionally, for the third year and counting, twenty-four hours a day she dutifully totes around her TPN infusion pump; she can practically maintain aseptic technique in her sleep as she administers medications through the lumens of her Hickman or connects herself to the TPN (total parenteral nutrition) that is her life-sustaining nourishment.

All of these devices, as well as the supplies, materials, and medications that innovators devote their life’s work to creating are what enable my sister and other critically ill individuals to live.

I share her story not to elicit sympathy or sobs. On the contrary entirely—I want to drum up appreciation for those people (the innovators) who create things that help make health care miraculous.

My sister’s condition has placed many limitations on her life (the least of which is not being able to eat any food during the Thanksgiving meal) but she is alive. That is something to be amazed by, and more than enough for me to be thankful for. This Thanksgiving, I give thanks for my sister, and the innovators that have helped keep her alive.

Hilary Ginsburg

Hilary Ginsburg

    Hilary Ginsburg is a proud future nurse, currently in school at the MGH Institute. She is aiming to become a nurse leader involved in health care as a clinician, thinker, innovator, and writer. Her clinical and research interests include palliative care, lifelong quality of life, interprofessional teamwork, and using innovation to optimize care delivery and the patient experience. One of her biggest pain points is the deficiency of nurse/doctor collaboration manifesting from the silo-ed growth of the medical and nursing fields. Her writing interests include innovation’s influence on the future of health care, giving voice to the patient experience, and capturing exemplary instances of clinical learning and patient care. She tweets as @Htotheinno

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