Chronic kidney disease has increased significantly in India in the past five years. In fact, it is much more dangerous than cancer and heart diseases,” said Dr K.C. Gurudev, director, Centre of Excellence of Nephro-Urology, Ramaiah Memorial Hospital, Bengaluru. “That's why we as a society, the Indian Society of Nephrology, have suggested that this should be included as one of the epidemics in India. The incidence is as high as 10 per cent if you take the entire country, and in certain pockets of Andhra, Bihar and Gujarat, it is between 20 and 30 per cent.”
Chronic kidney disease can be caused by diabetes, chronic hypertension, a genetic factor or a rare disease, and can lead to renal failure. The rise in numbers, said experts, was because of improved diagnostics―screening for kidney disease has become part of routine tests. But why so many cases in India specifically? “Primarily because India leads in obesity, hypertension and diabetes, which are the most common causes for kidney disease,” said Gurudev. By 2030, India is expected to have the world’s largest population of diabetics.
Experts also said that the fact that medicines are not regulated in India, and that over-the-counter drugs are easily available―especially painkillers and protein supplements taken by gym-goers―can put a tremendous load on the kidneys. “Also, when we make a diagnosis of chronic kidney disease, we see that the primary cause is alternative medicines,” he said. “Suddenly, people in stage 1 and stage 2 kidney failure come down to stage 5 in a couple of months as most of these native medications have heavy metals in them such as mercury and arsenic, which can damage the kidneys very fast.”
In a paper titled Chronic Kidney Disease in India: A Clarion Call for Change, author S. Varughese noted that chronic kidney disease, with its high prevalence, morbidity and mortality, “is an important public health problem”. He cited data from the United Nations Children’s Emergency Fund to show how the problem begins at birth for many―28 per cent of children weigh less than 2.5kg at birth. “Nutritional issues during pregnancy may cause smaller kidney volume at birth and a lower eGFR (a test done to estimate how well the kidneys are working). An eGFR lower than 15 is a marker of kidney failure.”
New lease: (From right) Nash Vaz, Dr Attar Mohammad Ismail and Dr Niranjan Kulkarini at Kokilaben Hospital in Mumbai | Amey Mansabdar
Many experts also attribute chronic kidney disease to poverty, poor sanitation, pollutants, water contamination, overcrowding and known and unknown nephrotoxins (including heavy metals and plant toxins in indigenous remedies).
Compounding these issues is the sobering fact that 1.4 billion people are served by 1,850 nephrologists who are mostly concentrated in urban centres, say experts. Nephrology training positions are inadequate and the situation is worsened by brain drain.
Given the rise in such cases in India, THE WEEK spoke to four patients to discuss the impact chronic kidney disease has had on their life:
Nash Vaz, 34, manager, Mumbai
Vaz was diagnosed with ADPKD (autosomal dominant polycystic kidney disease) in 2019. It is caused by a genetic fault that disrupts the normal development of some kidney cells, which causes small fluid-filled sacs called cysts to develop in the kidneys. These cysts can lead to pain, infection, and sometimes more serious complications. When the cysts rupture, there is blood in the urine.
Though Vaz was born with the condition, it rarely caused him any noticeable problems. An avid footballer, he had been active and energetic all his life. “Even in annual health check-ups in school, college or even at work, nothing ever got diagnosed,” he said. “Yes, at times the blood tests would show a high creatinine (waste product made by muscles) level, but doctors ascribed it to my hardcore non-vegetarian diet.”
Managing the disease: After his kidney transplant surgery, Nash Vaz, an avid foodie, has sacrificed on some of his favourite items | Amey Mansabdar
It was a minor accident that led to the diagnosis. The wheel of his bike got stuck in a pothole and he fell. That night, he found blood in his urine. This was not unusual; Vaz had previously seen this happen, and it would stop after a week. But, this time, it went on for a couple of months. He went to the doctor, who suggested a sonography test. That is when the disease was detected.
“I visited multiple doctors and hospitals, but everyone said that this was not curable and there was nothing they could do,” he said. “I gave up hope.”
Vaz continued with his everyday life without any medication or treatment for five years. Last year, though, he noticed “an unusually high amount of blood in my urine”, and that's when things got serious. He was informed about the possibility of a kidney transplant as both his kidneys―which were already large because of the genetic condition―were infected and needed urgent removal. Faults in one of two different genes, called PKD1 and PKD2, are known to cause ADPKD. Kidney function gradually deteriorates, as in the case of Vaz, till eventually the kidneys fail.
By the time Vaz was diagnosed by Dr Niranjan Kulkarni at Mumbai's Kokilaben Hospital, his creatinine level had shot up to five, indicating severe kidney damage. After the removal of both kidneys in four months, Vaz was on continuous dialysis for more than a month. His mother, 57, donated her left kidney to her son. The total expense came to around Rs30 lakh. “The kidney removal and dialysis was more painful than the transplant,” said Vaz.
He then started thinking about his quality of life in his later years, but he found relief when he heard of a colleague whose 74-year-old mother had begun dialysis at 14. “I was apprehensive, especially when I looked at those who died after transplants,” he said. “It was very daunting, but my doctor cleared all my doubts and assured me that I could live a normal life.”
That required sacrifice; no junk food. An avid foodie, this was huge for Vaz. But he has successfully, though reluctantly, maintained his diet and lifestyle so far. “I have completely stopped red meat and continue to consciously control my salt intake to keep the levels of potassium to a minimum.”
Rekhavathy Shetty, in her 30s, lab assistant, Mangaluru
It was in 2018 that Shetty got pregnant for the second time. The first time, in 2010, was smooth and uneventful. The second wasn’t. A staff nurse at KMC Hospital in Mangaluru, Shetty would regularly monitor her blood pressure and sugar levels and weight to make sure everything was normal. However, things took a turn in her fifth month; she felt uneasy and extremely fatigued. She went to the doctor while on duty, and it turned out that, on that day, her blood pressure levels had touched 130/80. An immediate analysis showed about 3.5g of protein in her urine (the normal value is less than 100mg per day). This led to a diagnosis of nephrotic-range proteinuria, a relatively rare condition that causes the kidneys to release an excessive amount of protein in urine.
Living in hope: Rekhavathy Shetty, a lab assistant at KMC Hospital, is waiting for a kidney donor.
Shetty was then handed a five-litre can to fill up with urine in 24 hours and was asked to consult a nephrologist and get admitted. Her blood pressure levels continued to shoot up. An emergency C-section was carried out and the baby, 1.2kg, was transferred to the neonatal intensive care unit. Fortunately, he is healthy and continues to grow well.
The mother's health, however, continues to deteriorate. When Shetty rejoined the hospital after maternity leave in 2019, she was told to get a kidney biopsy, which showed IgA nephropathy, a disease that develops when a germ-fighting protein called Immunoglobulin A (IgA) builds up in the kidneys. This causes inflammation that, over time, can make it harder for the kidneys to filter waste from the blood. Shetty was then put on a high dose of steroids, which led to her putting on weight to an extent that she “could not recognise” herself. She began facing extreme fatigue, dizziness and depression, resulting from a change in her lifestyle―an active and cheerful working woman had become someone who would often “be tired and glum”.
She has been on dialysis since September 2023; when she started, her creatinine level was 15, and about a week ago it was nine. “No matter what, it just refuses to come down to normal,” she said. Usually, creatinine levels are 0.7-1.3 mg/dL for males and 0.6-1.1 mg/dL for females. Shetty undergoes dialysis three times a week. “They prick me with those big needles and make me sleep in the same position for four hours continuously like a statue,” she said. “I've got severe back pain as a result.”
Dr Susanth Kumar from KMC Hospital, who treated her, said: “When she came to me, she was found to have very high blood pressure. Investigations showed a lot of protein and blood in the urine and marginally high creatinine. We started her on steroids but she discontinued the medicines. When she came back, her situation was very bad. The biopsy showed IgA nephropathy, which had worsened because of not taking timely medicines. Her case progressed quickly to severe, end-stage renal disease when kidney function was below 15 per cent. The only option now is kidney transplant, and we have been waiting for almost a year for a deceased donor under her blood group to come by.”
Because she is too fatigued to work as a ward nurse, she has now taken the job of a lab assistant in the same hospital. It pays her Rs23,000 a month and work begins at 7am. This means Shetty has to leave home at 6.15am and after work, at 3pm, she goes for dialysis. The procedure begins at 4pm and ends by 8.30pm, after which she drives her two-wheeler home for about 15km and cooks for the family before starting the grind again the next morning. “When I reach home after dialysis, my body aches, my hands feel numb and I feel energy-less,” she said. “Nights are sleepless and the thought of the next day gives me chills. Life has become dreary and depressing. I am fed up.”
Of her family members, only her husband is an eligible donor, but as one of them has to be around for the children, they decided that both cannot jeopardise their health. “That is why I won't ask him to donate his kidney,” she said. “I respect him for at least thinking about our kids.”
Shetty continues to wait for a donor. She is 36th in the queue and 5th among those with an A-positive blood group. “I have to get out of this black hole that is dialysis,” she said. “I am spending Rs4,500 a week on these sessions and then additional on injections and medicines. We can neither afford the illness nor the treatment. I hope an angel liberates me from my misery.”
As Shetty is non-diabetic, she can go on with dialysis and live long enough, said Dr Kumar. “Provided she does not mess up with her medicines and maintains her diet well,” he said. “If she skips her dialysis, consumes a lot of water and salt, then she'll suffer from breathing issues resulting in pulmonary oedema and several other issues.”
Pooja Khandagale, 30, teacher, Shirdi
For 30 years, Khandagale believed her blood group was O positive. Her doctors back in Shirdi, her home town, never questioned it. No test was done to confirm it. So, a few months back, when doctors asked her to undergo a kidney transplant, they thought that blood transfusion would not be a challenge as O is a universal blood group. After everything was decided, the doctors did do a test for formality, and to their shock found that she had the extremely rare 'Bombay' (HH) blood group. Had they gone ahead with the surgery, there could have been disastrous consequences, including graft rejection, fatal transfusion reactions and even death.
Fuelled by fortune: Pooja Khandagale with Dr Rushi Deshpande (right) at Jaslok Hospital; she underwent a one-of-a-kind transplant surgery there | Amey Mansabdar
For Khandagale, who already had severe diabetes and was on dialysis since 2022, this was another major roadblock. First identified in India, the ‘Bombay’ blood group is found in one in 10,000 Indians and only in one in a million people globally. People with this type lack the H antigen, which makes them incompatible with all standard blood types.
Fortunately for the teacher, the procedure was successful, marking it the first such recorded transplant in the country. Her mother (B positive) stepped up and offered her kidney. That their age gap was only 22 years was a positive, but the blood type mismatch introduced significant risks, requiring doctors to modify Khandagale’s immune response before transplantation.
To lower the risk of rejection, doctors used a specialised desensitisation protocol, including plasma exchange therapy and immunosuppressive treatment. These measures helped reduce antibody levels in her body, increasing the chances of a successful graft acceptance. Following the procedure, Khandagale is being closely monitored, and long-term success depends on continued immunosuppressive therapy, said the doctors at Mumbai's Jaslok Hospital.
The first time Khandagale learnt that something was wrong with her kidneys was two days before her wedding, during the mehendi ceremony at home. “Suddenly, my body began to swell,” she said. “My waist, my cheeks were all swollen and I began to look repulsive, that too when I had to look my best. My kidneys had swollen; the doctor prescribed medicines to manage the swelling and to continue the wedding rituals. Within 15 days of my wedding, I was in hospital. I felt embarrassed.”
Going forward, what bothers Khandagale is that she might not have her own children. “My family says so much has happened to me and being a full diabetic, it is better to stay away from trying for kids,” she said. “My husband also feels the same. Of course, I would love to have my own children, but now I'm a doting aunt to all the kids in the family.”
She has mixed feelings about this stage of her life. Her haemoglobin levels have now reached 11.5 after almost a decade of being under seven, and her diabetes is also under control. However, she is sad that there are still some things that are beyond her reach.
Yashvi Sompura, 22, makeup artist, Ahmedabad
The 22-year-old has already undergone two kidney transplants. She was barely nine when her parents first found out that she had chronic kidney disease. They got to know this after a sonography test revealed that she had a birth defect―both her kidneys were on the left side and were joined together. By the time she was 10, only one of her kidneys was working, and that too at 30 per cent.
She was advised to go to the Institute of Kidney Diseases and Research Centre in Ahmedabad. At 12, she underwent her first transplant with a cadaver donation after being on dialysis three times a week for one-and-a-half years.
Refusing to give up: Sompura at the Narendra Modi Stadium in Ahmedabad.
A few years later, her body started rejecting the transplanted kidney. “I am sure it was due to my own negligent food habits,” Sompura said on a call from Ahmedabad. “I would sometimes gorge on outside food with friends at birthday parties and other occasions, and that really cost me. Life has just been so full of dos and don’ts that it had begun to frustrate me.”
Another 18 months of dialysis followed, during the pandemic. And then the second cadaver transplant took place. “The most important thing was that if a patient is going for a second transplant, the challenge is to find the right match,” said Dr Himanshu Patel. “Being a paediatric case at the time of transplant, it was important for her growth to catch up because steroids hamper growth (the doctors worked to minimise the effects of steroids on her growth). That is the primary reason transplants in paediatric patients are difficult to manage and you have to pay extra attention to the growth of the patient. In Yashvi's case, it was good that we did the transplant otherwise her growth would have been hampered and her life span would have shortened.”
A semi-classical dancer and a professional makeup artist, Sompura quit school for dance after class 10. “Schooling was anyway a challenge with regular dialysis and the perpetual kidney problem,” she said. “I would feel fatigued and my blood pressure would often shoot up. There were times when I had vertigo and I would feel the world spinning in front of my eyes. As a result, I would often lose balance.” Though there is no history of kidney disease in the Sompura family, the vertigo, said doctors, came from her father, a temple designer.
“I have been asked to be careful about my diet but that is the most problematic part of my life,” she said, adding that she has resumed her love for food, although in measured portions. “I've been asked to strictly stay away from soda and maida.”
On January 9 this year, Sompura completed four years since her second transplant. “As of now, the first one (rejected kidney) is not damaging my body and is working at 40 per cent,” she said. “But if it does cause harm, the doctors will remove it.”