As we begin to deconstruct the stigma surrounding organ donation it’s essential for us first to acknowledge the misconceptions and misinformation. Acknowledgement allows us to inform any concerns surrounding a topic correctly. We asked Paul Caine to share his experience through his inspiring story as a receiver of two organ transplants, one of which came from his brother.
Paul, who previously worked as a community development worker, now volunteers as an organ donation influencer. He has been able to experience first-hand the progression and development in infrastructure of the unit’s supporting patients in Cumbria. Paul at the young age of 11 was diagnosed with glomerulonephritis and began taking steroids. During the interview, he shared that this high dosage of medication palpably saved his life and kept him going for the next seven years until he encountered his next struggle, whereby he began to feel indescribably weak and fatigued. At 18, he started continuous ambulatory peritoneal dialysis, also known as CAPD; this is when the peritoneum, a membrane in the abdominal cavity, is utilised for kidney function when the kidney fails to carry out its role (NIDDK, 2019). Over time, with the cumulative infections paired with the lack of appropriate treatment in Cumbria in the 1980s, Paul headed to Newcastle to receive vital care. With his now damaged peritoneum, CAPD was no longer an option, so he was then being treated with haemodialysis, whereby a fistula is fitted and blood is diverted into a machine to filter waste products and fluid, for the blood to then passed back into the body (Kidney Care UK, 2020). A kidney transplant was required for him to continue living. During this time of distress, Paul recounts feeling lost and scared trying to navigate the early stages of organ donation.
Due to Paul’s first-hand experience with organ transplantation, we asked if he encountered any misconceptions about organ transplantation. Paul stated that most misconceptions were often “the same”, the most recent and often disputed misunderstanding is that registered donors who are hospitalised are less likely to receive the same level of treatment and care compared to those who are unregistered. He argues that to treat a patient with such disregard and carelessness would be equivalent to murder. Furthermore, he emphasised the importance of how public perceptions towards donor research can be heavily influenced by the media. He remembers the decreasing donor rates in the 1980s due to the release of a movie that “fed” into the public fears based on how organs were being wrongly removed and sold. He explains passionately observing the decline and noticing the increased deaths as fewer people were inclined to donate their organs. As Paul described the common misconceptions, he acknowledged the topic’s sensitivity and advocated for public awareness of the procedures and assessments required during organ donation. Never being the one to only say things he helped his hometown in West Cumbria in 2022, supporting a newly appointed organ donation liaison nurse. This mirrored the Spanish model of organ donation (1979) used to encourage knowledge of organ donations internally and externally in the hospital. Thus, overall ensuring that understanding of both donation and transplant is widespread.
Additionally, Paul’s conviction for increasing the visibility of Living Donors at a national level led him to approach the royal family members, the Princess of Wales and the King. Though they were unable to support his request they showed interest and acknowledged the idea was important and could be implemented by the NHS Blood and Transplant service. In September 2023 Paul worked with the North Cumbria Care Integrated Foundation Trust, renal services, to plan a local Living Donor Celebration. An event first of its kind, andsupported by two representatives from the NHS Blood Transplant and Transplant Service who attended the event.
As our interview closed, Paul reflected upon the social and mental challenges he faced during the 1980s. He described the looming uncertainty and palpable fear of patiently waiting for his kidney transplant approval, which came alongside the uncertainty of whether the new organ would debilitate him any further or be successful at all. With further introspection, Paul explained his change in perspective. Looking back, he describes that the tough regimes of dialysis were challenging and during that moment he despised the process. However, he states, “The extra 7 years I got from when I was 11 saved my life”. This conjured a sense of gratitude and appreciation for the hardships he had faced for his survival is inspirational.
Today, Paul is an enthused advocate for organ donation and engages with politicians to create changes in the organ donation sphere. His effort, combined with that of others, meant that he was able to raise over £23,000 and was able to get a kidney dialysis machine, meaning the trajectory of so many patients’ lives could be positively impacted. We hope that the fruits of Paul’s labour continue to deconstruct the stigmatisation surrounding organ donation and encourage a new shift in perspective and attitude. Has your opinion shifted?
Authors Note:
To further engage in the expanding world of organ donation do not hesitate to contact the Donor Research team!
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Reference List
NIDDK (2019). Peritoneal Dialysis | NIDDK. [online] National Institute of Diabetes and Digestive and Kidney Diseases. Available at: https://www.niddk.nih.gov/health-information/kidney-disease/kidney-failure/peritoneal-dialysis.
Kidney Care UK (2020). Haemodialysis access with an arteriovenous fistula. [online] Kidney Care UK. Available at: https://www.kidneycareuk.org/about-kidney-health/treatments/dialysis/haemodialysis-access-arteriovenous-fistula/.