In this powerful Kidney Warrior Story, host Dee sits down with Tony to unpack a decade-spanning journey through chronic kidney disease (CKD)—from a shock Stage 4 diagnosis of IgA Nephropathy (IgAN) to Stage 5 kidney failure, peritoneal dialysis (PD) with brutal drain pain, a transition to haemodialysis (HD), line infection and coma, the courage to self-needle with a fistula, and ultimately the life-changing gift of a kidney transplant.
Tony shares the practical and emotional realities few hear about: choosing PD vs HD, APD (overnight machine) vs manual gravity bags, bu...
In this powerful Kidney Warrior Story, host Dee sits down with Tony to unpack a decade-spanning journey through chronic kidney disease (CKD)—from a shock Stage 4 diagnosis of IgA Nephropathy (IgAN) to Stage 5 kidney failure, peritoneal dialysis (PD) with brutal drain pain, a transition to haemodialysis (HD), line infection and coma, the courage to self-needle with a fistula, and ultimately the life-changing gift of a kidney transplant.
Tony shares the practical and emotional realities few hear about: choosing PD vs HD, APD (overnight machine) vs manual gravity bags, buttonhole vs rope-ladder needling, home haemodialysis training, fluid management, and rebuilding confidence after hospital trauma. He explains how movement and sport (from 5K Parkruns to half marathons) helped his mental health on dialysis—and how he kept going after FIVE “dry-run” transplant calls before finally receiving his match.
Post-transplant, Tony competed at the Transplant Games (bronze in cycling!), then faced a sudden cycling accident with a broken talus—and still came back stronger with kidney function over 90%. Tony’s message? You’re not alone. With support, information, and small, consistent steps, more is possible than you think.
WHAT YOU’LL HEAR
• Early signs missed: high blood pressure and “white coat” assumptions
• Stage 4 to Stage 5 CKD: understanding IgA Nephropathy and next steps
• Peritoneal Dialysis (PD): APD vs gravity bags, real talk on drain pain
• Haemodialysis (HD): line infection → coma, then fistula and self-needling
• Buttonhole vs rope-ladder: how Tony overcame needle phobia
• Home HD routine + exercising safely on dialysis (5K to half marathons)
• Five transplant calls that didn’t happen—coping tools that helped
• The call that changed everything: consent, surgery, waking the kidney
• Transplant Games success—and recovery after a serious cycling crash
• Mental health: therapy, peer groups, and why talking saves lives
• Practical tips: fluid limits, pacing activity, and building back slowly
• Community resources: Kidney Care UK, young adult kidney groups
KEY TAKEAWAYS
• Movement is medicine—start with what you can manage (even 100 metres).
• Your effort matters—even when decline happens, you may be delaying harm.
• Build your circle: family, peers, clinicians, therapists, Kidney Care UK.
• Advocacy counts: read clinic posters, join groups, ask questions.
• Mindset + support = progress. Small daily actions add up.
If you’re newly diagnosed or supporting someone with CKD, browse our back catalogue for in-depth episodes on PD, HD, transplant prep, and mental health.
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SUPPORT & RESOURCES
Kidney Care UK
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KEYWORDS
kidney warrior, chronic kidney disease, CKD, IgA nephropathy, IgAN, stage 4 CKD, stage 5 kidney failure, peritoneal dialysis, PD, APD, drain pain, hemodialysis, HD, home hemodialysis, fistula, buttonhole, rope ladder, dialysis needles, dialysis access, kidney transplant, transplant recovery, transplant games, cycling injury, broken talus, mental health, fluid restriction, exercise on dialysis, Parkrun, half marathon on dialysis, Kidney Care UK, young adult kidney group, organ donation, patient story, lived experience, resilience, chronic illness
Disclaimer:
The information shared in this episode is for educational and informational purposes only and does not constitute medical advice. Always consult your doctor, consultant, or qualified healthcare professional regarding your individual health needs and before making any medical decisions. The views expressed by guests are their own and do not necessarily reflect those of the host, the Diary of a Kidney Warrior Podcast, or Kidney Care UK and are not intended to malign any religion, ethnic group, club, organisation, company, individual or anyone or anything.
