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Don’t Tell Me I Can’t Show Me How I Can – World Kidney Day 2024 – Renal.PlatoHealth.ai

Christina Gilchrist, from the US, shares a poignant account of navigating the complexities of kidney disease, the triumphs of successful transplants, and the challenges of rejection. Faced with skepticism and imposed limitations, Christina’s journey unfolds through various dialysis methods, culminating in the resilience found in home hemodialysis. Supported by a dedicated healthcare team and her unwavering spouse Michael, Christina advocates for patient-centric care, challenging norms and inspiring a shift towards innovative healthcare practices.

My journey spans over two decades, marked by the challenges of kidney disease, the highs of successful transplants, and the lows of rejection. It is a story of determination, resilience, and the unwavering will to live life to its fullest.

Initially, my battle with kidney disease led me through the cycles of in-center dialysis, each phase presenting its unique set of challenges. The turning point came when I was told that home dialysis was not an option for me. The reasoning behind this decision was grounded in skepticism about my capabilities as a visually impaired individual. I lost five precious years of my life and witnessed my daughter’s childhood slip away, all because of the limitations imposed by others.

Refusing to succumb to the verdict of “can’t”, I sought out a doctor who shared my vision of possibilities beyond conventional boundaries. With this doctor’s support, I embarked on a journey of home peritoneal dialysis (PD), managing both a stomach and a chest PD catheter. Against all odds, I thrived during this period, celebrating milestones like marriage and travel, proving that limitations were only as binding as one allowed them to be.

However, as the PD method eventually proved ineffective, a transition to hemodialysis became necessary, this time through a central venous catheter (CVC). Unfazed by discouragement from some medical professionals who believed home hemodialysis on a CVC was too risky, I advocated for my right to live life on my terms. Together with a supportive doctor, we formed a formidable team, dismantling the stereotypes that often accompany chronic illness.

The synergy between patient and doctor transformed my life. Home hemodialysis not only sustained me but elevated my health to unprecedented levels. When faced with the question of how I could feel even better, I embraced the challenge of home hemodialysis nocturnally on a CVC. The prospect of another transplant might remain uncertain, but the satisfaction of leading a fulfilling life on my machine makes me content.

I owe my well-being to my dedicated healthcare team, especially Dr. Michael Kraus, whose patient-centric approach made all the difference. My plea to healthcare professionals is to listen, empathize, and explore unconventional paths to help patients thrive. The essence of my favorite quote, “Don’t tell me I can’t, show me how I can,” encapsulates the spirit of my journey, a testament to the remarkable strides possible when doctors and patients collaborate as a team.

In the midst of this challenging journey, my care partner and husband Michael emerged as a crucial pillar of support. His unwavering dedication enabled me to navigate the complexities of home hemodialysis. He not only assisted me practically but also became a driving force behind the establishment of a support group, offering guidance and inspiration to thousands of other patients and care partners facing similar struggles. Additionally, he initiated a podcast where we share our collective experiences and valuable advice on kidney care, fostering a community of shared understanding and encouragement. 

In sharing my story, I hope to inspire reflection within the medical community, encouraging a shift toward innovative and personalized patient care. My narrative is unapologetic, and I extend an open invitation to those who doubted me to engage in a discussion, to see my story not as an exception but as a blueprint for empowering patients to thrive on dialysis.

Disclaimer: The blog series is intended for informational purposes only and is not meant to endorse or promote any specific drug, product, or brand. Each individual’s experience is unique and should not be construed as medical advice or a guarantee of similar results for others. Always consult a qualified healthcare professional before making any decisions regarding your health and well-being.