His fight with kidney disease is inspiring quality treatment for thousands moreDeepika Rao
Encouraging the belief that people living on dialysis can lead normal lives, NephroPlus is a country-wide organisation helping thousands realise that quality of treatment and positive attitude can beat the disease.
Dependence on dialysis doesn’t mean being resigned to one’s fate for Kamal Shah who has been battling Kidney Disease for the last 21 years.
Diagnosed with Atypical Hemolytic Uremic Syndrome, Kamal believes that a positive attitude and quality treatment can change lives of those who undergo dialysis. This is the message he now spreads across the country to help thousands more like him.
After graduating from chemical engineering in 1997, with a gold medal from his institution in Hyderabad, he was all set to embark on a journey to the US for a Masters’ degree. With just two weeks left before travelling, Shah felt nauseous right after taking his mandatory vaccinations for Typhoid, Hepatitis B, Measles, Mumps and Rubella (MMR).
“I was aware of the side effects but when the nausea continued to persist for two-three days, I was a little worried about travelling. A family physician conducted blood tests and found out that my kidney functions had significantly declined,” Kamal Shah recalls.
After consulting nephrologists at a local hospital, he was immediately admitted to undergo dialysis. The treatment would require him to spend at least four hours, thrice a week to maintain the process of blood cleaning, which his kidney was unable to now perform.
Atypical Hemolytic Uremic Syndrome, a rare genetic disease affects approximately one in two billion people across the world.
According to the US National Library of Medicine, Atypical HUS causes abnormal blood clots to form in small blood vessels in the kidneys and can cause renal problems (among others) if the clots restrict or block blood flow.
“I had to shelve my plan of going to the US and started dabbling on different kinds of treatments alternating with dialysis. I tried homeopathy, Ayurveda, acupressure, acupuncture and more over the next one year.”
In 1998, he underwent a successful kidney transplant with his mother as the donor. But 11 days after the surgery, the Atypical HUS had resurfaced, infecting the new kidney as well.
Disappointment couldn’t sum up Kamal’s emotion when he had to go back on dialysis.
Getting back to normalcy
While the advent of the internet was an exciting time for many, Kamal recalls it differently.
“I used the internet to research about various treatments that could get my life back on track and to normalcy. That’s when I stumbled upon Peritoneal Dialysis,” he said.
Peritoneal Dialysis is a treatment that uses the patient’s abdomen (Peritoneum) and a cleaning solution called Dialysate to clean the blood. The solution is introduced into the abdomen through a permanent tube placed in the abdominal cavity permanently. The treatment enables patients to conduct the dialysis while they’re working, vacationing or just lazing at home too, with careful supervision.
The treatment allowed Kamal to finally begin working. “I started with PD in March 1999 and was able to go to work. I found a part-time job at a relative’s company. In 2000, I started my own company with a friend. I started taking trips with my friends and was so happy that my life was finally back to normal.”
But six years of independence from the gruelling hemodialysis turned out to be limited. In 2004, Kamal and his friends were vacationing in Mahabalipuram, Tamil Nadu when the fateful tsunami wave hit its coast. Grabbing hold of the roof of the shack in neck-deep water, all friends were able to survive but Kamal’s peritoneal catheter was infected by the contaminated water.
“We rushed back to Chennai to a hospital to see if we could save the catheter but it couldn’t be done. I had to go back to regular hemodialysis – thrice a week, at the hospital,” he recalled.
Aware of the magnitude of Kamal’s disappointment, his doctors suggested home hemodialysis. At the time, the treatment technique wasn’t big in India.
“I researched about it online and found many patients in the US and UK undergoing the treatment. I joined online support groups to learn more. I had to do it six times a week for seven-eight hours a day. It seemed to work for me as I could do it whenever I was able to during the day. Normalcy set in again,” he said.
Taking his story to the world
It was around this time that Kamal realised how topsy-turvy his tryst with kidney disease had become. There was a story to narrate for he had seen the best and worst of times living with Atypical HUS and the most uncertain of all – kidney disease in general. This is when he began his blog.
“This was also intended because while there was a lot to read in the US and UK scenarios, not much reading material was available in the Indian context. I thought my blog could help shed light on the disease in general and the modes of treatment available while also providing my personal anecdotes to it,” Kamal added.
Time to give to the community
It was around this time that a former colleague, Vikram Vuppala stumbled upon his blog. With an intention to begin a venture in the healthcare sector, Vuppala contacted Kamal. Trusting his background, Kamal agreed to share the space with Vuppala and together with Sandeep Gudibanda, also a former colleague, they founded NephroPlus in 2009.
With the very first centre set up in Hyderabad, NephroPlus encourages the belief that those living on dialysis can lead normal lives. Patients here are called ‘guests’ and that’s just the beginning of an endlessly comfortable atmosphere where they receive treatment through modes of dialysis.
In the last eight years, the trio has set up 140 centres in 85 cities across 18 states with over 10,000 guests undergoing dialysis currently. NephroPlus conducts over one lakh dialysis sessions every month.
“We introduced a lot of patient-friendly services like pick-up and drop and set up individual TVs for each guest while they were undergoing dialysis. Our painless dialysis technique reduces the pain of inserting needles by 95 percent. We make them believe that they don’t need to be bed-ridden, provided they are given quality treatment and have a positive attitude towards fighting the disease,” Kamal says.
Once in a year, the guests get together for an Olympic style game event which allows them good amount of exercise as well. The organisation also extends the Holiday Dialysis programme for those wanting to vacation while on dialysis.
“Through this service, we hook them up with places where they can continue to undergo dialysis while also enjoying the vacation. Many of our patients like taking pilgrimage trips so we have tie-ups with facilities in Tirupati, Rishikesh as well as tourist spots like Agra.
NephroPlus prices its dialysis treatment between Rs 1,200 and Rs 2,500 depending on the city. Patients with low affordability can opt for government tied-up schemes as the organisation works with the government through a Public Private Partnership (PPP) model.
“In India, only 15 percent of those who require dialysis actually undergo the treatment. This is a harsh reality and quality is a big issue for receiving treatment anywhere in India. For quality treatment to work, PPP models are very crucial. Our Aashaayein Kidney Foundation as well, subsidises some of the ancillary expenses for guests on dialysis,” he said.
Twenty-one years and running, for Kamal the fight against kidney disease has taken many shapes over the years. What he has realised over the two decades is that dialysis is not just a treatment. It’s a means to get life back on track, so there should be no compromise in the quality of treatment.
“When I look back, it was 21 years ago that I was diagnosed with this disease. How it all panned out to where we are today is a very surprising revelation. I’m very grateful that I have been given the opportunity to do this for the community. The response is highly satisfying, making this entire process more meaningful for everyone.”