Original parts: Aging and reckoning with cystic fibrosis related kidney disease

Abstract

Kidney disease increasingly impacts people with cystic fibrosis (CF) as adult patients continue to survive longer. Yet the literature on CF related kidney disease focuses little on amplifying the voices of people aging with the condition. This article presents perspectives on CF related kidney disease from a medical sociologist who is themselves managing these issues. It (1) gives an overview of relevant literature and trends in epidemiological data on kidney disease and CF, (2) details the author's own process of adjusting to progressive changes in renal function, and (3) outlines opportunities for clinicians to make a positive impact for patients by centering their voices.

The Salt without the Girl: Negotiating Embodied Identity as an Agender Person with Cystic Fibrosis

“…Both discussions with friends in the CF community and explorations of broader representation projects have helped me to reflect on my own experiences with surgery and scarring. As of yet, I have not undergone organ transplantation surgery (Nowakowski 2018). Although it appeared likely in my early 20s that I would eventually need a lung and/or kidney transplant, changes in my treatment and my positive response to those alterations appear at present to have bought me substantial time (Nowakowski 2018).…”

“…As of yet, I have not undergone organ transplantation surgery (Nowakowski 2018). Although it appeared likely in my early 20s that I would eventually need a lung and/or kidney transplant, changes in my treatment and my positive response to those alterations appear at present to have bought me substantial time (Nowakowski 2018). I remain both open to transplantation in the future and conscious of how it would require me to renegotiate my body in both general and gendered context (Nowakowski 2018).…”

“…Although it appeared likely in my early 20s that I would eventually need a lung and/or kidney transplant, changes in my treatment and my positive response to those alterations appear at present to have bought me substantial time (Nowakowski 2018). I remain both open to transplantation in the future and conscious of how it would require me to renegotiate my body in both general and gendered context (Nowakowski 2018). That said, complications from my own CF have already led me to undergo a variety of other surgeries that acclimated me to the process of adjusting to dramatic changes in the appearance of a particular body part (Nowakowski and Sumerau 2019) and the unique dynamics of those negotiations for me as an agender person (see (Willis et al 2001)).…”

Coming Full Circle: Reflections and Inspirations from a Cystic Fibrosis Patient Scientist Panel

“…I found it comforting on a personal level to know that despite decades of poor management, I still had a fighting chance at better health going forwards. 20 But perhaps even more exciting to me was the prospect of sharing research experiences and building kinship with someone who understood me so well.…”

“…As individuals, we enjoyed proving people wrong about what we could safely do and the impact we could make in the process. 20 But we also spoke of a tremendous sense of isolation and loneliness—of being the only ones like us. I remember telling my colleague, “I knew there must be others like me out there, but unless our friend had introduced us I don’t know that I would ever have found you.”…”