Abstract: PUB079
Patient Experience of Key Innovations in Kidney Replacement Therapy: A History
Session Information
Category: Educational Research
- 1000 Educational Research
Authors
- Frost, Livia Ann, Baylor College of Medicine Margaret M and Albert B Alkek Department of Medicine, Houston, Texas, United States
- Eknoyan, Garabed, Baylor College of Medicine Margaret M and Albert B Alkek Department of Medicine, Houston, Texas, United States
Background
The history of renal replacement therapy is often told as a story of clinical and technological advancements, where survival, not the patient's experience, was the primary measure of success. Monumental progress has been made, but the journey toward truly patient-centered care remains unfinished. This narrative traces the evolution of renal replacement therapy through the lived experiences of patients, guided by major technological shifts.
Methods
We curated firsthand patient accounts from archival documents, oral histories, memoirs, journalism, and video testimonies (1960–2000), weaving them into a collective narrative.
Results
The Scribner shunt made maintenance dialysis possible. The first patient described his first dialysis as "just like turning on the light from the darkness." But the miraculous symptomatic relief soon settled into a complex reality. Patients appreciated the dedication of their teams but endured the gamut of complications. Home dialysis offered freedom from the hospital but placed life-sustaining responsibility on families. One mother described the toll as "extreme, emotional, psychological, and mental fatigue." The 1972 Medicare amendment transformed dialysis from a privilege for the few into a right for all, but one patient testified he felt like "just another money cow." Peritoneal dialysis developed more slowly, but eventually moved dialysis into the rhythm of everyday life. One patient recalled "a normal kid during the day" while dialyzing at night. Transplantation presented the hope of leaving the machine behind. One patient articulated: "It's the best thing that ever happened to you... It saved my life. It's a very tough thing to live with a transplant. It's not a cure... it takes its toll."
Conclusion
The patient journey has never been a linear path toward a cure, but an evolving dialogue between the body and the technology that sustains it. Innovation must be measured not only in years of life added, but in life added to those years, moving beyond survival toward a form of living that feels truly reclaimed.