The Lived Experience of Peripheral Neuropathy after Solid Organ Transplant

Abstract

Background The immunosuppressants required after transplant cause peripheral neuropathy with an incidence of 10% to 60%. Peripheral neuropathy adversely affects health-related quality of life in other populations. Objective To describe the lived experience of peripheral neuropathy after solid organ transplant. Design A qualitative phenomenological study with semistructured interviews. A purposive sample of 7 solid organ transplant recipients with peripheral neuropathy was recruited from 2 transplant clinics at a large Midwest tertiary care center. Interviews were audio taped and transcribed verbatim. Data were analyzed line-byline and coded by using HyperResearch 2.0. Results Although participants' experiences were similar to those reported by others with peripheral neuropathy, there were also unique differences. Unique to this population was unexpected onset, rapid escalation of symptoms, lack of provider monitoring, and poor provider response to reported symptoms. Their experience demonstrated that peripheral neuropathy diminished health-related quality of life. Four themes emerged from the data: (1) nothing is supposed to happen after transplant; (2) neuropathy causes me more problems than my heart; (3) maybe there is something that could help; and (4) I've learned to live with certain limitations. Conclusion Development of or worsening of peripheral neuropathy after solid organ transplant may decrease health-related quality of life. Follow-up care should include vigilant monitoring for signs of peripheral neuropathy. Providers need to provide early treatment, education, support, empathy, and understanding.