She’s on a mission with no time to spare. Having been on a tryst with Chronic Kidney Disease (CKD) for over two decades now, Vasundhara Ragahvan solemnly vows to a make a difference in the lives of those suffering.
A Dubai-based sexagenarian NRI and former Secretary General of the Media Research Users Council (in 2005) after a decade with the industry body, in 2013 formed the Kidney Warriors Foundation (KWF)- as an Apex body to help in managing kidney diseases. This first All India non-profit NGO strives to assist families with a member suffering from kidney disease because Vasundhara believes that “this is a family crisis and not just an individual ailment.”
An undebatable ‘woman of steel’, Vasundhara has had a personal rendezvous with the disease when her younger son, Aditya, of just 15 years of age, was detected too late of a congenital condition. Watching him suffer from renal failure, leading to dialysis for over two years, she decided to be his donor. But fate had other plans.
Just a couple of days after she was all clear for the surgery, she was diagnosed with an ill-timed cancer. She found a big, lemon size lump in her upper breast.
Thus began, another ordeal of dealing with mastectomy, chemotherapy and radiations.
And while Aditya kept the creatinine levels just right, with timely medications, a curated diet and regular dialysis; the family united their forces to buy as much time as they could before Vasundhara was ready for the organ transfer.
It took a good three long years before Aditya could sense renewed relief from his mother’s kidney. Nonetheless, the challenges of living on a donor kidney stifled the next couple of weeks, with a spurt of hospital stays for serious infections and rejections for at least seven times, each almost ten days apart.
But this family was not to give up on hope, on life and living. They fought and he survived…..and life continued, with Aditya completing his undergraduate study, then masters at IIT, Powai and left for his doctorate in Physics at the University of Southern California, LA, USA.
Perhaps, lack of awareness coupled with misfortune found Aditya at the perils of yet another renal failure (rejection) in just a span of six and a half years’ time. This time better informed, having experienced this fatality once before in life, he decided to live on dialysis till he could find a donor. He managed.
He managed well, accepted the kidney rejection, decided to be on PD (Peritoneal Dialysis) for about the next four years, until the second transplant came about.
Managing and controlling the diet is one of the critical steps for a kidney patient particularly on dialysis. – Vasundhara Ragahvan
And yes, this time it was his elder brother, Dhananjay who came forward. As for Vasundhara and her husband, it was the most trying of times, but one that would resolve towards optimism, faith, hope, life, ….Aditya, 38, now has ventured into following his passion. He is now an artisan cheese maker, forager and co-founder of ‘ Danda Food Project ’ in Mumbai, India. Undoubtedly, life finds it way…
Meanwhile, Vasundhara turned a new chapter in her life. She chronicled her experience with CKD, at such close proximity, in her book Shades of Life – Sublime Joy is in Living, narrating her family’s experience with stages of the disease ending in two transplants. The mother turned author, tied her shoelaces and stepped up to write two more books – The Kidney Warriors and Who Lives Who Dies. She is already well on her way in writing two more books keeping in mind the diet for early stages, dialysis and post-transplant.
She insists that acceptance and management of a life-threatening disease is often beyond the common man’s understanding. And working towards making that a reality, Vasundhara now runs two closed facebook groups – The Kidney Warriors Foundation and Diet for Kidney Patients, especially to serve kidney patients in India. The first group has members – a mix of Stage 1-5, dialysis and post kidney transplantees along with caregivers. Members undergo a stringent screening process to be sure of legitimacy. People join the group in desperate need for information on how to manage and save themselves. Group members teach them to accept the disease with all limitations placed on them. Senior nephrologists are in the group and they clear many doubts for patients.
The second group has members from all over the world, including dieticians and health care workers. “Managing and controlling the diet is one of the critical steps for a kidney patient particularly on dialysis,” says Vasundhara. “We started with imparting knowledge of CKD diet, organised diet workshops with an expert dialysis patient where patients from all over shared their knowledge.”
She believes in taking baby steps. She, along with her KWF team, addresses issues in the larger ecosystem that prevents proper care from being extended to kidney patients. They endeavor to make the medical world and the legal framework for kidney transplants easier in India.
And without taking note of the sweat beads on her forehead, Vasundhara continues to take the foray ahead. Recently, she approached Shri Jagat Prakash Nadda, the Union Minister of Health and Family Welfare, India, requesting the government to recognize KWF as the Kidney Society of India. This will allow them to be representative at crucial government meetings, provide training to dialysis centres and technicians and approach for international funding. She awaits to hear back from the authorities at the helm of the affairs.
Vasundhara understands that her journey is of a thousand miles and she must continue her battle against the disease, steadily but surely, by lending relentless support and advise.
Listening to people, Yasmeen Maqbool acquaints herself to their life’s feature. What inspires and encourages, she’s always on the lookout for ‘passionistas’ and weaves their stories to bring to you the movers and shakers of today! Her only other true indulgence is spending quality time with her green fingers while listening to Jagjit Singh ‘ghazals’.