If life is about irony, then 45-year-old Sejal Jobanputra has had more than his fair share of it. Her father built a business supplying bed sheets to hospitals around the world and never imagined his daughter would be bedridden in one for most of her adult life. Her kidney transplant failed and 16 years later, she lives on dialysis, but the accompanying heavy medication has caused her to lose her hearing. Her parents, who nurtured her and nurtured her with hope, died before she could understand her world. Unable to cope with her trauma, her mother succumbed to a long illness, while her father jumped into the building’s water tank. Yet she lives. To be his pride. “I look at the last note my father left me: ‘You are a fighter, never give up,'” she tells us.
Today Sejal runs an NGO called Kidney Warriors with others like her to help chronic kidney disease (CKD) patients coordinate organ donation, dialysis and other therapies. Half-bed and attached to her dialysis machine, Sejal, who has mastered the art of lip-reading, recalls how her father stood by her like a rock when she was diagnosed with CKD in 2003, a progressive degenerative condition. She was only 25 years old then. “Once we were a rich family. My father had a small firm that exported custom-made sheets to hospital chains around the world. But halfway through, things went downhill fast as he couldn’t keep the business afloat and went into debt. In 2004, we sold our eight-bedroom house in South Mumbai and moved to a small one-bedroom apartment in the suburbs. This was a huge emotional blow to my mother who suffered from a chronic illness and she died of multiple organ failure within three weeks of moving into our new home. Despite this, my father arranged money for my kidney transplant, which was carried out at Breach Candy Hospital in 2007. My sister donated one of her kidneys,” she says.
“My father was shocked when, despite everything, my body rejected the kidney. He fell into depression. But not wanting to give up on me, he decided to donate his kidney for the second transplant. But since his mental health had deteriorated and began to damage his body, the doctors did not approve the procedure. This pushed him over the edge and he committed suicide on April 15, 2008,” adds Sejal, whose senses have been numb since then. Even years later, she can’t help but wander into the past. The sister enjoys it.
Much of Sejal’s transplant failure also had to do with her not being able to take the expensive anti-rejection drugs prescribed for post-transplant patients. Rising costs made them. “There was dialysis to pay for, a house to run, food to cook. Often my father and I had no money for food. However, he tried to secure money for a second transplant after our tissues matched. But all the stress got to her after she got sick and got disqualified,” she says.
Years of dialysis, which filters the blood to remove waste products and excess fluid when the kidneys stop working properly, meant she had fistulas. This is usually associated with irregular blood pressure and thin veins. She needed high-intensity antibiotics that affected her ability to hear. “Suddenly one day, it all went away. My world came crashing down,” says Sejal, who re-registered for kidney donation with the state health department to avoid the side effects of dialysis. Simultaneously, she began raising funds through crowd-funding portals for the anticipated second transplant. Although her friends and other close relatives were willing to donate one of their kidneys as an unrelated donor, the transplant was not feasible due to Maharashtra’s strict organ donation rules. In 2016, when the former Union Minister Sushma Swaraj underwent a kidney transplant with the organ being taken from an unrelated living donor, Sejal even wrote to the Prime Minister Narendra Modi how bureaucratic apathy had kept him away from a normal life. “What I am upset about is that those in the government can get an unrelated transplant within days… I wish you would bring some change for normal people like us. No doctor or hospital entertains us if we stay with a donor unrelated. Why? We are not criminals,” she writes in her letter.
After years of waiting for a donor, she finally withdrew her name from the list in 2018. “The years of dialysis have taken their toll on my body. My bones have become brittle due to high levels of Parathyroid Hormone (PTH). I have already had hip replacement surgeries and plate implants. Now, I am not healthy enough to undergo another transplant,” she says. She currently lives with her sister and brother-in-law who have taught her to read lips so that she can communicate and socialize easily. “Their son has given me a reason to live when I was almost giving up. I also had suicidal thoughts,” she adds.
Dr Umesh Khanna, nephrologist and chairman of Mumbai The Kidney Foundation says that with regular dialysis, medication and nutrition, patients can survive for many years on dialysis. But often, patients fail to adhere to the regimen due to high costs. There are also some side effects. “Sejal’s bones were hit. In some patients, it can affect the heart.”
Sejal needs three dialysis sessions each week, with each set lasting four hours. Some days she becomes too weak to stand. The procedure is also extremely expensive with each session costing around Rs 800. So, I try to skip a set and do two sessions a week to save money,” she says.
That is why she is campaigning for more government-run dialysis centres. “A kidney patient needs dialysis every alternate day, which is extremely expensive. Private centers are unregulated and for the money they charge they don’t even adhere to the time required for each session and cuts. Kidney diseases are increasing among Indians, so this has become the need of the hour,” says Sejal, who does not let her physical frailty get the better of her.
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