Her diminutive frame belies the fierce energy that she brings to the patient advocacy group for kidney disease that she heads. It is called Kidney Warriors Foundation, and Mrs. Vasundhara Raghavan is the CEO and Warrior-in-Chief! It is involved in improving the lives of kidney patients, ensuring that their voices are heard, and extending financial support to them. We watched Vasundhara as she received The La Renon TANKER Foundation For the Sake of Honour Award from the Chief Guest Mr. M. M. Murugappan, Chairman, Murugappa Group and Dr. Georgi Abraham, Founder Trustee, TANKER Foundation. The occasion was TANKER Foundation’s 27th Annual Charity & Awards Nite held on 25th January 2020 in Chennai. Her eyes shut briefly, maybe in prayer or giving thanks, as the citation was being read, but one could feel her marshalling her forces to continue to wage war against chronic kidney disease. The citation applauded her spirit of dedication and determination in tirelessly striving to make a difference in the lives of patients and their families. Earlier she delivered the Mrs. Malathi Venkatesan TANKER Foundation Memorial Lecture on ‘The Kidney Warriors – A new outlook to the kidney disease challenge.’ She emphasised that people with chronic kidney disease were isolated and carried a much heavier burden than the general population. They needed support that was warm, genuine, and reassuring. And that was what the Facebook group The Kidney Warriors provided.

Through her books, Vasundhara has addressed the many issues that chronic kidney disease throws up. In her first book, Shades of Life she narrates and reflects on her son Aditya’s battle with chronic kidney disease, dialysis, two transplants and the physical and mental toll that all of this takes on the patient as well as the family. Vasundhara battled cancer, and then went on to donate a kidney to Aditya. This first kidney transplant worked well for six-and-a-half years, but then he had to go back on dialysis again. He received a second kidney transplant with his elder brother, Dhananjay being the donor. Vasundhara talks about Aditya’s ‘never-give-up’ spirit being their guiding light. There is a poignant description in the book of a moment shared by the two brothers and their mother on Venice beach, Los Angeles soon after the loss of the first kidney transplant.

She writes, “We stood looking at the distant horizon beyond the wide expanse of blue sea, the sky streaked with shades of orange, red and yellow as the sun shied away, ready to bid me goodbye. This image imprinted itself in my mind’s eye as one depicting the shades of life: Hope – seeing the wonderful waves soaring high as if wanting to touch the soft, white feathers of the seagulls; Anger – knowing that life was filled with trials and need for enormous energy to overcome them; Love of Life – deep sorrows caused by failures, happiness drawn from acceptance, and paying homage to the spirit of life. Success is learning to accept life with all its limitations and live cheerfully.”

Her second book ‘Kidney Warriors’ is a compilation of 56 hard-hitting stories of people who battled chronic kidney disease, people on dialysis, people who had a transplant, people who lost a transplant – each of them has a unique story to share, and these stories offer us a chance to understand their minds and hearts, and to draw courage from them. Vasundhara says losing a kidney after a transplant is akin to losing someone close to you. A bald “how did it happen” needs to be replaced with “understanding” the need for privacy. Her third book is titled ‘Who Lives, Who Dies with Kidney Disease.’ Kidney Warriors Foundation has also brought out two handy books on diet and kidney disease called ‘Nutritional Secrets’ with easy to follow flow charts, simple tips for a balanced renal diet, and 120 recipes completely evaluated.

Recently Vasundhara was appointed to represent the patient group in the reconstitution of the National Oversight Committee (NatCom) for the National Dialysis Programme. She says emphatically that patient and caregiver groups need to be involved when organ donation and transplant laws are being framed, that more young nephrologists need to be part of transplant teams to be better able to help patients with the disease. She flags the need for job opportunities and flexi-time in employment for patients with CKD so that they can continue to work and feel purposeful in society. It is also important she adds to have subsidised Reverse Osmosis (RO) plants in all dialysis centres with quality checks, decrease cost of dialysers, and facilitate better training of dialysis technicians. Kidney Warriors Foundation has recently embarked upon an educational series of talks and interactions with doctors and patients in different cities in India.

What started as a Facebook group in 2014 with Vasundhara reaching out to others suffering from the agony of ‘why me’, the guilt of ‘if only’ has evolved into the Kidney Warriors Foundation in 2017. This indefatigable tribe of more than 2000 warriors has fought many battles against chronic kidney disease - sometimes a victory, sometimes a loss, but they soldier on…

- Dr. Sumana Navin