Kidney Week 2025 Early Program - Care of Kidney Transplant Candidates and Recipients-Challenges of Living Well with a Transplant: 'The Quiet Burdens'

Video Transcription

Video Summary

Valen, a long-time transplant recipient and patient advocate, shares what it means to “live well” after transplant beyond lab results. Diagnosed with polycystic kidney disease at age 10, she has lived 23 years with a kidney transplant and seven with a liver transplant. She describes four “quiet burdens” that often go unspoken: uncertainty (ongoing fear about health, results, and the future), isolation (the misconception that transplant is a cure and the social limitations of immunosuppression), guilt (survivor’s guilt and the impact of illness on loved ones), and medication side effects (visible and invisible complications that reshape daily life). Through personal examples—career and family decisions, infections, sepsis, skin cancer, and complicated healing after skull surgery—she urges clinicians and researchers to acknowledge these burdens and provide person-centered support. She emphasizes partnership, listening, and care that honors recipients’ full lives, not just their organs.

Asset Subtitle

Valen Keefer

Meta Tag

Module TRX

Speaker Valen Keefer

Keywords

transplant recipient lived experience

polycystic kidney disease

kidney and liver transplant survivorship

immunosuppression side effects

patient advocacy person-centered care

psychosocial burdens uncertainty isolation guilt