They walk because they can: Stories of organ donation, survival and second chances

IT'S barely 7.30am when members of Wira Transplant Malaysia begin arriving at a little park in Taman Melawati, opposite the MPAJ Melawati Convention Centre, carrying buntings and signage for their morning walk.

The patch of green sits almost unnoticed between buildings, the sort of neighbourhood park you could easily pass without a second glance. As the neighbourhood slowly wakes, so does this gathering of transplant recipients, dialysis patients, doctors, caregivers and supporters, many greeting one another with the easy familiarity of old friends.

Before anyone starts walking, the group warms up together, stretching arms, rolling shoulders and bending knees, with laughter whenever someone misses a movement.

Nobody is expected to move faster than they comfortably can.

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There's learning too. Dr Nurul Zaynah Nordin, a nephrologist at Kuala Lumpur Hospital, gives a talk on kidney care, explaining chronic kidney disease (CKD), its risk factors and why Malaysians need to pay attention to their kidney health.

"Chronic kidney disease is a hidden burden," she shares, pointing to diabetes, hypertension and obesity as important risk factors. By stage five, patients will usually require some form of kidney replacement therapy and, for suitable patients, transplantation offers the best chance of moving away from long-term dialysis.

When the group eventually sets off, they walk gently around the park, chatting and welcoming curious passers-by who stop to find out what's happening. From a distance, there's nothing remarkable about the sight. But spend a little time among them and those ordinary steps begin to mean something else.

For someone whose week is organised around dialysis sessions, a morning walking freely in a park can mean far more than exercise. For a transplant recipient, every step is also possible because somebody, somewhere, gave.

And that, in many ways, explains what Wira Transplant is about. The patient-led non-profit group grew from a desire to bring together people whose lives have been touched by organ failure and transplantation, from recipients and those still waiting for organs to dialysis patients, caregivers and the medical professionals who care for them.

It has developed into both a support network and an advocacy group, creating opportunities for patients to meet, share experiences and remain active while raising public awareness about organ donation. Wira also gives patients a collective voice on the challenges they face, including access to transplantation and improvements they believe are needed within Malaysia's transplant system.

A COMMUNITY TAKES SHAPE

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Wira Transplant Malaysia president Manvir Victor knows that journey from the inside. Long before he became an advocate, he was a patient trying to build a life around kidney failure.

"I was diagnosed with end-stage renal failure in 2001 and went on dialysis soon after. I was on dialysis for 10 years and it was extremely difficult," he recalls.

Then came the gift that would change his life, when the woman he'd met and married became his kidney donor.

"I had my transplant in 2012 after my wife decided to donate a kidney to me," says Manvir.

The transplant gave him a new life, but it also opened his eyes to difficulties that didn't necessarily disappear with a functioning kidney.

"After a transplant, some patients suddenly find they cannot get a job because employers still classify them as sick."

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It was a perception he wanted to challenge. In 2022, on the 10th anniversary of his transplant, friends from the Rotary Club of Melawati suggested climbing Mount Kinabalu.

Manvir initially hesitated, but the idea soon took on a larger purpose: if transplant recipients could take on one of the country's toughest physical challenges, perhaps people would begin to see what they were capable of rather than simply seeing them as patients.

About 20 people made that first climb, including three transplant recipients. The following year came the first Transplant Walk at Taman Tasik Titiwangsa, an accessible 3km route bringing doctors, transplant recipients and dialysis patients together. The walks eventually expanded to other parts of the country, creating the kind of community I see around me this morning.

"Don't look at the disease. Look at the person," urges Manvir, adding: "Wira means hero, but the heroes are not us. They're the donors, doctors and nurses who make transplants possible."

LIVING WHILE WAITING

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There's something wonderfully defiant about Leelavathi K. Raju. At 49, she has already known the freedom a new kidney can bring, the heartbreak of losing it 15 years later and, now, the uncertainty of waiting for another.

"I received my first transplant in 2006 after about seven or eight months on dialysis. It lasted about 15 years before I had to go back on dialysis in August 2021," she shares.

Five years later, she's still waiting, but there's nothing passive about the way she waits.

"On dialysis days, I keep it simple with a 3km walk. On non-dialysis days, I go to the gym," she says blithely. "In May, I climbed the stairs of the 118-storey Merdeka 118 and completed the challenge in 53 minutes. Two days later, after dialysis, I flew to Kota Kinabalu and climbed Mount Kinabalu."

Her strength doesn't make the waiting any easier. Shares Leelavathi: "It has been five years and I'm still waiting. The best donation is organ donation because you're giving someone hope."

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Sitting at the other end of that waiting game is Jishnu Gunalan, just 20 and finally able to think about the ordinary things young people his age take for granted: work, college and what comes next.

He was only 5 when doctors discovered he had stage three renal failure, beginning a childhood shaped by medication and eventually continuous ambulatory peritoneal dialysis (CAPD).

"I was on CAPD for about seven years before I switched to haemodialysis," shares Jishnu. That continued for another five to six years until July 27 last year, when he finally received a kidney transplant.

"I was scared, but I was also happy and grateful," he recalls.

Today, Jishnu works at a cinema and is preparing to begin a diploma in business administration. Perhaps the most telling thing he says is also the simplest: "People see me as normal now and life is going great. It gives people like me a second life and a chance to have a future."

THE CALL THAT CHANGED EVERYTHING

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Siti Rahayu Abdullah wasn't among the walkers that morning, but listening to her later, I find myself thinking again about those simple laps around the park and how easily the rest of us take such freedom for granted.

The 36-year-old Orang Asli woman was around 20 when lupus nephritis caused her kidneys to fail. She became so weak that after returning from work, she sometimes had to stop on the stairs because she simply couldn't make it to her fourth-floor home.

Eventually she collapsed and was hospitalised, waking from a coma to a life that would now revolve around dialysis.

Years of treatment followed before she began receiving calls about possible donor kidneys.

"The first time I was called, I was very anxious and scared because I'd never experienced anything like it," she recalls.

After several calls and disappointments, her chance finally came in October 2023. Siti Rahayu later discovered that her donor had been a 66-year-old Chinese woman.

"I was just happy. It didn't matter to me whether my donor was Chinese, Indian or from any other community. Whoever it was, I was grateful," she says.

She once asked whether she could meet the donor's family but was advised that donor and recipient identities were confidential.

"I would say terima kasih tak terhingga (thank you beyond words), especially to the family for allowing their loved one's wish to donate to be fulfilled."

Today, her definition of freedom is strikingly simple. Says Siti Rahayu: "I'm free from dialysis three times a week and from having needles in my arm. I can drink more water and I have more freedom to do other things. That freedom makes me happy."

GIFT BEYOND GRIEF

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But every second chance has another story behind it, and sometimes it belongs to a family who had to say yes on the worst day of their lives.

For Bazli Yahya, that day came when his 31-year-old son, Muhammad Syukri Bazli, a cook, husband and father, developed an unbearable headache and deteriorated with frightening speed. Within days, he was in intensive care.

It was there that doctors approached the family about organ donation while they were still struggling to comprehend that Syukri might not survive.

Recalls Bazli: "My feelings were all mixed up because we still didn't know whether our son was going to survive. The doctors explained how his organs could help other people, but there was no pressure. They gave us time to think about it."

Bazli searched for information and discussed it with his wife and Syukri's widow.

"After two days, Alhamdulillah (praise be to God), our hearts were opened and we agreed to donate his organs, at least to help somebody."

Syukri's organs went on to help three people, including two teenagers.

"No words can describe how we felt when we knew his organs could help other people. We felt very blessed," says Bazli.

Before Syukri was taken from the ICU to the operating theatre for the donation procedure, hospital staff gave him a Walk of Honour, accompanying him on that final journey, a gesture Bazli says had given the family strength.

Syukri may be gone, but his father's advocacy hasn't stopped. Even his son's Proton Satria now carries organ-donation awareness stickers, a small, moving reminder of the decision the family made when grief was still unbearably raw.

Asked how he hopes his son will be remembered, Bazli doesn't hesitate. "I hope people will remember him as a pahlawan (hero)."

MANY WHEELS, ONE LIFE

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Syukri's gift also reveals something easily forgotten when we talk about organ donation: saying yes is only the beginning. Once an organ becomes available, an extraordinary chain of people and processes has to move, often against the clock.

"A transplant depends on an entire ecosystem," explains Dr Vijayan Manogran, consultant neurologist at Columbia Asia Hospital Setapak and visiting transplant surgeon at Kuala Lumpur Hospital, Prince Court Medical Centre and Sunway Medical Centre.

"There are many wheels moving in transplantation and all of them have to move together," he adds.

Those wheels include doctors, surgeons, anaesthetists, donor coordinators, procurement teams and transplant teams.

It is why Wira's advocacy goes beyond persuading more Malaysians to become organ donors. A donated organ represents an extraordinary gift, but Manvir argues that the system must be ready to honour that gift.

Increasing donor numbers, he believes, must go hand in hand with stronger national coordination, sufficient expertise and resources and, ultimately, a dedicated transplant institute capable of bringing the different parts of that ecosystem together.

For the person waiting at the other end, these are not abstract questions of infrastructure. They can determine whether that long-awaited second chance actually comes.

Dr Nurul, meanwhile, wants people to understand just how far one act of donation can reach. She says: "One deceased donor can save at least eight lives. When two kidneys are donated, two patients can potentially be freed from dialysis."

Dr Vijayan brings it back to the human being waiting at the other end.

"You can make a difference to somebody's life. You can give them a second chance," he says.

EVERY STEP COUNTS

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By the time the walkers make their final rounds in Taman Melawati, the morning has grown warmer. Dr Nurul's kidney-care talk is over, the exercises are done and conversations have been struck up with strangers who stopped simply because they were curious.

Soon, the buntings and signage will be packed away, but the realities they came here to talk about will continue. Leelavathi will return to dialysis while waiting for another kidney, Jishnu can look towards college after spending much of his childhood around treatment and Siti Rahayu will continue living with a kidney given by a woman she never knew.

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Three other people have more time with those they love because, at the most painful moment of his family's life, Syukri became a donor.

There are no medals waiting at the end of this walk because the morning has never really been about distance or speed. It's about showing what life can look like after transplantation, standing alongside those still waiting and reminding the rest of us that behind every donated organ are human stories that may never meet, yet become forever connected.

At this little park tucked between the buildings, that enormous idea becomes beautifully simple: people walking beside one another, one step at a time.

elena@nst.com.my

For more information about Wira Transplant Malaysia or to find out how you can help, visit www.wiratransplant.org.my.