‘The Life That Wouldn’t Have Been’: Stories of Kidney Recipients

World Kidney Day: Kidney recipients open up about how transplant has transformed their lives.

The lives of kidney recipients are testaments to the possibilities you gift someone when you pledge your organs.

(Photo: FIT)

(This article was originally published on 27 April 2022 and has been reposted on account of World Kidney Day 2023.)

Anil Lall remembers his childhood as being 2 things: painful, and embarrassing.

He remembers having to wear a diaper to school till age 11, and how he had to repeat grade 6.

He talks about not being able to experience a normal school life, and not having any friends as his illness kept him from school.

He remembers how his little brother would outrun him effortlessly, and how the simplest of concepts in class wouldn’t stick in his mind.

He remembers being in constant pain.

But this was Anil’s life a few decades ago, this was his life before his kidney transplant.

A self-taught software engineer, Anil Lall would go on to create the popular websites Naukri.com and Jeevansaathi.com, and this is the story of how his mother gave him his second life that made it all possible.

The second Thursday of March is observed as World Kidney Day. In light of it, FIT brings you stories of kidney transplant recipients and their lives that almost weren’t, if it wasn’t for an invaluable gift.

Part 1: 'You Have a Few Years to Live'

In 1973, Anil was 11, he was diagnosed with a congenital condition. In 1986 after a long-drawn battle with a post-surgery infection, he lost both his kidneys.

When I ask him about his life before the transplant, he starts with a deep sigh, as if he were taking a moment to remember another lifetime. Perhaps in some ways, it was another life.

“It was a lot of dialysis, a lot of painful injections, and lots of trips to hospitals. Life on dialysis is...hard.”

In the years that led up to it, Anil and his mother took multiple trips to multiple hospitals in India, as well as abroad.

Back in ‘86, kidney transplant was still an experimental procedure. “In India, only AIIMS did it and the success rate was abysmal,” he says. And so, for a long time, Anil lived on dialysis.

“You know the Mayo Clinic in the US, rated as the top institution in the world, there a doctor, very bluntly, told me I had a few years to live. He made us a fistula that you need for dialysis and packed us back home.”

Anil Llal

But Anil pulled through till 1986 when he finally got a new kidney from his mother, and he has been living with it for the last three decades.

In 1986, it was Anil Llal’s mother who donated one of her kidneys, and gave him a second chance at life.(Photo:iStock)

Part 2: 'Like a fog lifting'

Ask him what he can do now that he couldn't do before, and his answer is short. Everything.

Pre-transplant, Anil was on a very strict dietary regime that involved a set quota of measured food per day. “Things like I could only have 1 egg or 1 chicken leg, or one portion of fish, a day, not a bit more.”

He fondly remembers the day he was cleared to eat solid food post his surgery, and how he dug into a sausage and asked for more!

During one of his medical trips to the US Anil was introduced to his uncle’s computer, and this is when he discovered his passion for software.

“All through the years of surviving on dialysis, I tried to teach myself computers and software, but it was only post the transplant that I was really able to understand any of it.”

Anil Llal

“It was really like a fog had just lifted off my brain, and I was just able to understand concepts that I always struggled with,” he adds. This passion would turn into his profession in the future.

Thanks to his mother, Anil’s life is as normal as he could have hoped, and a long way off from where he started.

He is able to eat what he pleases, go for runs with his daughter, and there are no limits to his movement. He does, however, also talk about the medication he’s on, and how the only drawback is that it makes him gain stubborn weight.

“But I suppose losing weight is a struggle for us all,” he quips with a laugh.

And His Mother, the Donor?

A question that often arises when one thinks of organ transplant is what about the donor? Does it affect their quality of life?

Anil Lall’s mother, now a woman in her 90s, has not only been healthy all these years, with no complications, but had recently also caught and fought COVID.

It Can Be a Steep Slope: Lakshmi's Story

Anil suffered for years before he finally got a transplant, but this isn't always the case when it comes to chronic kidney damage, an illness that can throw you a curveball when you least expect it.

In December of 2020, Lakshmi along with the rest of her family went in for a COVID test, followed by a routine check-up. Her urine samples, however, came back showing high levels of creatinine. A few weeks down the road, both her kidneys had failed and Lakshmi was put on dialysis.

“Symptoms of CKD don’t show until the problem has escalated to a moderate-high stage, which makes it really difficult to catch it early,” says Anil and Lakshmi’s Nephrologist, Dr Alka Bhasin, Senior Director Nephrology, Max Super Speciality Hospital, Saket, Delhi.

Symptoms of kidney damage often don’t show up until it’s too late.(Photo:iStock)

“It’s only when you’ve lost about 50% of your filters that creatinine levels start rising and showing up in blood tests.”

Dr Alka Bhasin, Senior Director Nephrology, Max Super Speciality Hospital, Delhi

This means that the escalation of kidney damage can be steep and quick, and a person can go from having no symptoms to needing dialysis in a matter of even weeks.

Lakshmi, a personal assistant to a lawyer, has always had a hectic work life, and she would dismiss the little tells—frequent headaches, fatigue, and swelling in her legs—as byproducts of work stress.

In February 2021, Lakshmi got a new kidney and a new chance at life, courtesy of her brother, and within a mere month of the transplant, she has her old life back. “At the time, being tired constantly felt normal to me, but now that I have so much more energy, I realise the difference,” she says.

She talks about the gift of life that her brother has given her, one that she couldn’t have imagined she would need just a couple of months ago.

“I was going about my everyday life with no clue. I was at work as usual on Friday, just a day before I found out that both my kidneys were failing.”

Lakshmi Behl

When you donate a kidney, you don’t just elongate someone else’s life, but gift them a new one. One that is devoid of constant pain and misery, one where their body is their ally and not their enemy, one they cannot only survive in, but thrive in.

Chronic Kidney Damage: Living with it & Preventing it

Keeping with the theme of this year’s Kidney Day, ‘living with CKD,’ Dr Alka Bhasin tells us about things we should know about CKD and how to manage it.

According to Dr Bhasin, one of the most important things, that people generally neglect is getting annual checkups done. “Most people in India won’t go to a hospital until they have some symptoms, but in the case of kidneys waiting till then could mean the damage is already too far gone.”

Those with diabetes and hypertension are especially advised to get tested routinely as people with either are particularly prone to kidney damage.

Dr Bhasin points to certain symptoms that one should look out for. These include weakness, lethargy, body itch, low appetite, and drastic weight reduction.

What causes Chronic Kidney Disease?

• Dehydration
• Drugs
• Urinary Infections
• Diabetes, and Hypertension
• Obesity

For those with CKD, or those prone to kidney damage, Dr Bhasin recommends certain lifestyle changes that can help minimise its complications.

• Reduce salt intake
• Do not self-medicate, and limit the use of antibiotics and painkillers as they directly damage the kidneys.
• Keep a tab on your HB levels, thyroid, and lipids. Get them tested routinely.
• Also, monitor your blood pressure. Anything beyond 140/90 is in the zone of hypertension.
• Don’t dismiss symptoms, and get timely checkups.
• Limit foods high in protein.

(If you would like to pledge your organs, you can sign yourself up with the Govt of India’s NOTTO program.)