Impact of simultaneous pancreas-kidney transplantation: patients' perspectives

Abstract

Background:Few qualitative studies of simultaneous pancreas-kidney transplantation (SPK Tx) have been published. The aims of this study were to explore from the perspective of patients, the experience of living with diabetes mellitus type 1 (T1DM), suffering from complications, and undergoing SPK Tx with good outcome; and to determine the impact of SPK Tx on patients and their social and cultural environment.Methods:We performed a focused ethnographic study. Twenty patients were interviewed. Data were analyzed using content analysis and constant comparison following the method proposed by Miles and Huberman.Results:A functioning SPK Tx allowed renal replacement therapy and insulin to be discontinued. To describe their new situation, patients used words and phrases such as “miracle”, “being reborn” or “coming back to life”. Although the complications of T1DM, its surgery and treatment, and associated psychological problems did not disappear after SPK Tx, these were minimized when compared with the pretransplantation situation.Conclusion:For patients, SPK Tx represents a recovery of their health and autonomy despite remaining problems associated with the complications of T1DM and SPK Tx. The understanding of patients’ existential framework and their experience of disease are key factors for planning new intervention and improvement strategies.

Perspectives of solid organ transplant recipients on medicine-taking: Systematic review of qualitative studies

“…They felt they were viewed differently and misunderstood, because of the stigma of being ill so preferred to take their medications discretely or to miss a dose 21‐28 . Women, in particular, felt a loss of self‐esteem because of accelerated ageing, weight gain, excess sweating, skin bruising or gum hyperplasia, and hair growth/loss, which they attributed to their immunosuppressants including steroids and calcineurin inhibitors (particularly cyclosporine) 23,25,29‐45 . Side effects, related to sexual performance caused frustration and insecurity in intimate relationships, particularly for men 46 .…”

“…Patients felt “fantastic to be alive” after transplant 40,78 and were willing to endure the side effects and complications of medication 22,30,32,47,52,65,117,122 . As such, they felt both sick and healthy, “just being held together.” 61 Medication complications and side effects were regarded as a “necessary evil,” “a price” to pay for the transplant, and believed it was “better to live with side effects than not to live.” 31,37,40,42,52,56,61,62,66,84,85,90,100,102,119,122 …”

“…Taking medication was a way to overcome the constant fear of graft rejection 21‐23,30,31,34,39,42,49,52,53,60,71,76,93,95,99,102,115,129 . Some were uncertain of “how long [they had] before the rejection set in” and strived to “do the right thing [take medications at the right time].” 21,23,24,32,76,97,118,130 Recipients with transplants other than kidney felt more aware of the dire impacts of graft failure as “you wouldn't be seeing me around” because there are no long‐term alternatives 22,116 .…”

“…Some patients shared their experiences and immunosuppressant medication supplies with other transplant recipients and developed a sense of community where they felt supported and a sense of belonging 29,50,51,57,58,66,87,98,99,116 . Patients felt family and caregivers who were supportive of medication‐taking were actively involved in encouraging medication regimens such as providing reminders 21,31,32,36,55‐57,87,93,99,111,114 . Other patients found spiritual beliefs and support groups helped with medication‐taking, particularly during recovery from rejection episodes, feeling their situation was “in God's hands.” 32,75…”

Waiting, strange: transplant recipient experience, medical time and queer/crip temporalities

“…As a small sample, transplant surgeon Thomas Starzl speaks of transplantation as ‘miracle’ ( Starzl 2003, 3 ), surgeon and historian Paul Terasaki declares that ‘Transplantation is the miracle of 20th century medicine’ ( Terasaki 1971, 7 ) and the term features in medical journals such as British Journal of Surgery, The New England Journal of Medicine and the British Medical Bulletin , including articles titled ‘The miracle of liver transplantation’ ( Tzakis 2013 ), ‘Transplantation: a medical miracle of the twentieth century’ ( Morris 2004 ) and ‘The miracle of face transplantation after 10 years’ ( Siemionow 2016 ). The language of miracle also extends to patient experience: in interviews with transplant recipients, Pera et al identify a consistent theme of ‘living a miracle’ ( Pera et al 2012, 599 ).…”