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Organ Wait Time Varies Wildly, Patient Finds
20 Oct
Summary
- Patient's transplant wait exceeded predictions by years.
- Organ offers were rejected multiple times by her local hospital.
- Seeking care elsewhere drastically shortened her wait time.
A car crash in May 2022 left Katherine Screws without a small intestine, making her dependent on IV nutrition. Her initial prediction for a transplant was six months, but she waited three years.
This extended wait was partly due to variations in how hospitals accept or refuse organs. Screws discovered that her local organ procurement organization, OneLegacy, had made nine offers for her in 2024, all of which were rejected by her transplant team for various reasons.
She learned that some transplant centers perform far fewer rare transplants, like intestine transplants, than others. Data showed a 16-fold variation in how quickly patients receive transplants at different centers.
Screws eventually sought care at MedStar Georgetown University Hospital in Washington, where she received a new intestine from a donor in Chicago within weeks of "double listing." This new organ was longer than typically transplanted but fit successfully.
The experience underscored Screws' frustration with the lack of clear, centralized information for patients navigating the complex transplant system and the subjectivity involved in organ selection.
