In December 2008, my life took an unexpected turn. At just 38 years old, I was diagnosed with Immunoglobulin A Nephropathy (IgA Nephritis), a rare autoimmune disease that severely damaged both my kidneys. I vividly remember the moment my doctor delivered the diagnosis — it felt like a bomb had been dropped on me. My world came crashing down in an instant.
I was only three years into my marriage, and my wife was just 29. The fear of the unknown consumed me. Questions swirled relentlessly in my mind:
What’s going to happen to me?
Will I be bedridden for the rest of my life?
Can I still work and provide for my family?
How long do I have before this disease takes over completely?
Is it even fair for my wife to stay with me?
I was terrified, overwhelmed, and utterly lost. Back then, there was little accessible information on kidney failure, and I struggled to find answers.
But even in the darkest times, there’s always a flicker of hope. That hope came in the form of my friend and fellow Rotarian, Dr. Navin Patel, a pathologist who owned Lablink. He was the first person I turned to after my diagnosis, and he immediately referred me to the nephrology department at Hospital Kuala Lumpur — one of the best in the country.
There, I met Dr. Ravi and Dr. Rosnawati, who became pillars of strength during my early treatment. They explained my condition in detail, performed various tests (biopsy, ultrasound, MRI, and extensive blood work), and confirmed that my kidney failure was caused by IgA Nephropathy, unrelated to common risk factors like diabetes or hypertension. I knew I was in good hands.
The Struggle at Home
While I was coming to terms with my diagnosis, my wife was devastated. Watching her emotional breakdown was more painful than the disease itself. In a moment of despair, I told her she was free to leave me and start a new life. She refused. She stood by me — unwavering, strong, and resilient.
Still, the future looked uncertain. I was determined to provide a stable future for her, no matter what. Just when we thought things couldn’t get worse, I lost my job in September 2009 due to “poor performance.” It was a crushing blow. Fighting both a legal battle and a health crisis, I filed a wrongful termination claim in the Industrial Court. After a long, draining four-year legal battle, I finally won the case.
Turning Setbacks into Success
Despite the chaos, I refused to let my health or circumstances define me. With over a decade of experience helping kindergarten entrepreneurs, I decided to start my own kindergarten business. I encouraged my wife to leave her job and become the Principal of our new school.
It was the best decision we ever made. We launched our kindergarten brand in 2010, and it became an instant success. But success in business wasn’t enough to fill the emotional void caused by our shared struggles.
In search of deeper meaning and joy, we decided to start a family. In the same year, our son, Thaksheel Nair, was born — our miracle, our light in the darkness. His arrival transformed our lives. For the first time in a long while, I saw true happiness in my wife’s eyes. He was our reason to keep going.
The Battle Intensifies
I managed to delay dialysis for four years through strict lifestyle management and medical care. But in 2011, I made a decision that still haunts me today — I tried an unproven “miracle” health product from Korea that claimed to reverse kidney damage. Within six months, my creatinine levels skyrocketed to 1200, and my urea levels surged to 25.
I had no choice but to begin dialysis. In January 2012, my life changed once again as I started my first dialysis session. It felt like starting from scratch.
But giving up was never an option.
Becoming a Voice for Transplant Advocacy
Looking back, my journey has been filled with unimaginable challenges, but it has also been one of resilience, love, and purpose. My experience ignited a passion in me to help others navigating similar struggles. This calling led me to co- found Wira Transplant Malaysia, a non-profit organization dedicated to advocating for organ transplants, raising public awareness, and supporting transplant patients and donors. Through this initiative, I aim to:
Provide guidance and motivation to transplant patients.
Organize sports activities for transplant recipients.
Raise public awareness about organ donation and transplant needs.
Collaborate with key organizations like the Malaysian Society of Transplantation, Rotary Club of Melawati, and the National Kidney Foundation.
Support transplant athletes in participating in the World Transplant Games.
Why Advocacy Matters
Organ transplantation is often misunderstood in Malaysia. Many people suffer in silence due to misinformation, stigma, and fear. As a patient-turned-advocate, I hope to bridge this gap by sharing real stories of survival, resilience, and the impact of organ donation.
I believe that no one should ever feel alone in their battle against kidney failure. There’s a need for more public education, better access to resources, and a supportive community where patients and families can find hope, just as I did.
What’s Next?
My journey is far from over. This article is only the beginning of my story. In the next installment on Vital Signs, I’ll share how life changed after starting dialysis, the emotional toll, and the inspiring people I met along the way.
If my journey has taught me anything, it’s that life’s greatest challenges can also be its most profound teachers. It’s not about the struggles we face, but how we rise above them.
