Living on dialysis for 16 years after a failed kidney transplant, battling hearing loss and scarred by her dad’s suicide, Sejal campaigns for organ donation

“My father was shocked when despite everything, my body rejected the kidney. He slipped into depression. But not wanting to give up on me, he decided to donate his kidney for the second transplant. But as his mental health had worsened and started taking a toll on his body, doctors didn’t approve the procedure. That pushed him off the edge and he committed suicide on April 15, 2008,” adds Sejal, whose senses have been benumbed ever since. Even years later, she cannot but wander off into the past. Her sister cheers her up.

Much of Sejal’s transplant failure also had to do with the fact she couldn’t take the expensive anti-rejection medicines prescribed to post-transplant patients. Mounting costs did them in. “There was the dialysis to pay for, a home to run, food to cook. Often dad and I had no money for meals. Still, he tried to arrange money for a second transplant as our tissue matched. But all the stress got to him as he fell sick and was disqualified,” she says.

Years of dialysis, which filters the blood to remove waste products and excess fluid when the kidneys stop working properly, meant that she developed fistulas. This is usually associated with irregular blood pressure and thin veins. She needed high-intensity antibiotics which impacted her hearing ability. “Suddenly one day, everything went mute. My world came crashing down,” says Sejal, who re-registered herself for kidney donation with the state health department to avoid the side effects of dialysis. Simultaneously, she started raising funds through crowd-funding portals for her anticipated second transplant. Even though her friends and other close relatives were ready to donate one of their kidneys as a non-related donor, the transplant wasn’t feasible due to Maharashtra’s stringent rules of organ donation. In 2016, when former Union Minister Sushma Swaraj underwent a kidney transplant with the organ being harvested from a living unrelated donor, Sejal even wrote to Prime Minister Narendra Modi about how bureaucratic apathy had kept her away from a normal life. “What I am upset about is that those in government can get an unrelated transplant in a matter of days … I wish you brought about some changes for normal people like us. No doctor or hospital entertains us if we stand with an unrelated donor. Why? We are not criminals,” she wrote in her letter.

After years of waiting for a donor, she finally withdrew her name from the list in 2018. “Years of dialysis have taken a toll on my body. My bones have become brittle because of the high levels of Parathyroid Hormone (PTH). I have already had hip replacement and plate implantation surgeries. Now, I am not healthy enough to undergo another transplant,” she says. Currently, she is living with her sister and brother-in-law who taught her to lip-read so that she could communicate and socialise easily. “Their son has given me a reason to live when I was almost giving up. I had suicidal thoughts too,” she adds.

Dr Umesh Khanna, nephrologist and chairman of the Mumbai Kidney Foundation, says that patients with regular dialysis, medication and nutritional food can survive for many years on dialysis. But often, patients fail to adhere to the regime due to the high expenses involved. There are some side effects too. “Sejal’s bones were impacted. In some patients, it can affect the heart.”

Sejal needs three dialysis sessions every week, with each set lasting four hours. Some days she becomes too weak to even stand on her feet. The procedure is also extremely expensive with each session costing around Rs 800. “It is a money guzzler treatment. So, I try skipping one set and undergo two sessions per week to save some money,” she says.

Which is why she is campaigning for more government-run dialysis centres. “A kidney patient needs dialysis every alternate day which is prohibitively expensive. Private centres are unregulated and for the money they charge, they do not even keep to the time required for each session and cut corners. Kidney diseases are increasing among Indians, so this has become the need of the hour,” says Sejal, who doesn’t let her physical frailty get the better of her mind.