Vasundhara Raghavan, a 69-year-old Indian, shares her story as a mother who witnessed first hand her son’s kidney disease and subsequent two kidney transplants. From this experience, she began to dedicate part of her life to helping patients with kidney disease and created the Kidney Warriors Foundation, which aims to provide support to those facing the disease.
Chronic kidney disease leaves a lasting impression on people and families affected. My fifteen-year-old son faced end-stage kidney disease in 1996, and between periods of learning, understanding, and developing a survival strategy, we incurred humungous medical expenses: with my brush with breast cancer, its complete treatment, son’s dialysis, and his transplant surgery with my kidney. While my son pursued a Doctorate in Philosophy at USC, an episode ended his first transplant due to an antibody-mediated rejection and he went back to dialysis. He finally graduated and had a second transplant but moved from academics to follow his passion for developing an artisan cheese enterprise in Edmonton.
A failed attempt to treat bed-wetting due to an ill-advised, “wait for puberty he will outgrow,” by a Urologist left me with huge guilt to contend with. Seeking to save lives, I published my book Shades of Life, Sublime Joy in Living.
The book did little to calm my nerves.
I started a kidney patient support group on Facebook, called The Kidney Warriors, unleashing the power of emotional support and counseling that encouraged patients to openly talk about the disease.
For the first time, patients found a place to share their deepest secrets and a community that gave them unconditional acceptance. Evenings and weekends were memorable, while late-night emergency messages kept us alert.
Very early, we had invited nephrologists to participate in the group. It worked two ways. Patients unburdened their concerns, and doctors slowly sat up to realize that behind the façade, patients felt defeated by the complexity of the disease, faced a sense of isolation from friends and relatives, and shuddered with a loss of identity.
A movement had begun to build Patient Advocacy for India.
Managing CKD depended largely on diet. A second group, Diet for Kidney Patients was established in September 2014. We encouraged patients to discuss, share, and offered suggestions on basic concepts by referencing articles from NFK (Editor’s note: National Kidney Foundation) and food nutrition data. A Diet workshop on “How to Maintain Creatinine” was conducted to get international patients to share their knowledge.
But our knowledge of nutrition was too superficial in order to guide patients.
By 2017 we had grown in strength and embarked on Educational Series in Pune and Bangalore. Support from senior nephrologists enabled us to kick-start a Diet Project. Our aspirations were fructified when hospitals “gave” us renal dieticians. We were lucky to have chosen intensely involved and committed nutritionists who support us unflinchingly even today.
“Nutritional Secrets” is a diet book designed by a patient, written in a simple language. It is now published in English and eight Indian languages. A book with over 130 recipes completes our dietary support for patients in India.
On 20th December 2017, we registered ourselves as Kidney Warriors Foundation with a mission to serve kidney patients and find some relief for them. The underprivileged receive monthly assistance, kids with acute kidney injury are paid a lump sum, and we distribute protein supplements annually. Sporadic assistance for fistula, transplant surgeries, and other hospitalizations is provided too.
2018 marked the release of our book, The Kidney Warriors, which changed the narrative from medical study to patient journeys in style of a heart-to-heart communication. Issues beyond the symptoms of illness were considered, so real-time issues of financial stress, unemployment, divorce, and matrimony received attention.
Between 2019 and 2021, the work on patient education grew with a focus on preventive work, ripping open every topic on dialyzes, such as wet and dry weight, fistula management, and more, handling sensitive topics on transplants like why a transplant fails, facts around BK Virus, choice of medicines. To nip in the bud, a full-fledged conversation on “Salt, Sugar, and UPF for kids” attempting to push entry-level kidney disease from youth to elders and save kids.
In 2022 we will look at kids with the disease, rare kidney diseases, and language workshops.
For more information on our work, please go through our website https://www.kidneywarriorsfoundation.org/.
As the adage goes “The only impossible journey is the one you have never begun!” We have taken baby steps in the right direction but have a long road ahead.