Sunday Vibes

Spirited woman receives a life-changing gift from a stranger

"HOSPITALS are my second home. I spent almost my entire life going in and out of hospitals, from the time I was born on May 18, 1988 until I was 31," confides Farah Syahidah Shamsuddin, her voice low.

It was normal for newborn babies to develop jaundice in the first few weeks of life. But when Farah's illness persisted, her parents and doctor became concerned. The diagnosis came: biliary atresia, a condition in infants where the bile ducts outside and inside the liver are scarred and blocked. Bile cannot flow into the intestine so it builds up in the liver, eventually leading to scarring of the liver, loss of liver tissue and function, and cirrhosis. In the long run, her liver would be damaged.

The specialist who could attend to Farah's condition was based in Kuala Lumpur. This made her parents, who were schoolteachers in Kuching, request for a transfer to Kuala Lumpur. Her parents would go on to have one more daughter and two sons while caring for Farah.

Life growing up in Kuala Lumpur was characterised by numerous hospital visits. If her blood test results were unfavourable, she'd be admitted into hospital for further observation and treatment. Her parents were always there for her.

The hospital visits never dampened her optimism and love for sports and the outdoors — when she was well enough, that is. Farah loved playing badminton and futsal. While studying as an undergraduate at Universiti Kuala Lumpur, she volunteered extensively at drop-in centres for at-risk youth and food delivery programmes for the homeless, and worked with non-governmental organisations to build a free public library.

Things started changing in 2013, though. When she turned 25, her health began deteriorating. Symptoms first showed up as yellow eyes. Then her hands and face turned yellow. The symptoms never receded but daily living was manageable.

She was referred to Selayang Hospital, the only government hospital then that offered liver transplants. She was counselled about the risks, procedure, and lifelong care plan, and underwent numerous investigations and assessments before being put on the waiting list as a potential recipient for liver transplant.

If a suitable liver became available and her turn was due, she would be summoned to the hospital immediately. She had to be on standby and in optimum health at all times. Even a slight fever would pass her over for the person next in line.

Salt was eliminated from her diet to avoid water retention. Food instantly became bland. Her mother opted for early retirement to care for her, preparing her meals and monitoring her food intake. Al though she was called twice for a liver transplant in 2014 but because she'd felt relatively well then, she declined, letting others have their turn.

HOPE FLOATS

However, Farah hadn't anticipated the onset of rheumatoid arthritis. She was in constant pain, enduring aching joints and water retention. When her knees swelled, she had the excess fluids drained at the hospital, a very painful process. Yet, she couldn't take any medication for the pain, or else risk straining her liver further.

It was a living hell. "Every day, I had to prepare mentally and tell myself to put up with the pain if I wanted to get anything done," says Farah, adding that even getting up needed that steely resolve. Eventually, she had to rely on a wheelchair to get around and depended on others for assistance.

The doctors in the hospital explored the idea of a living related liver donor, seeing that Farah had a twin sister. Farah's twin sister was willing to be a donor. However, an adult-to-adult living-related liver transplantation, where the right lobe of the healthy liver is implanted from the donor into the recipient, had never been carried out before at that time. Her parents decided against risking losing both daughters.

All hope was pinned on a donor becoming available.

MORE PAIN

In November 2015, her father complained of a persistent stomach ache. He had been, until that point, healthy. At first, he was suspected to have gallstones. Ever the stoic man, he wasn't one to complain even when he was ill. But that day was different. Reluctantly, he was admitted into hospital. By then, he'd turned yellow and began complaining of exhaustion.

Farah was hospitalised at the time and couldn't visit her father right away. When she was finally able to see him in the hospital, he was already severely weakened and ill. That was when she felt like giving up, and let things take their course.

In December 2015, he succumbed to liver cancer. As if dealing with physical pain wasn't enough, she was now discovering what emotional pain felt like. Farah visibly tears up when talking about her father not being able to see her get the transplant surgery that the family had been waiting for. The loss continues to be felt until today.

A WAITING GAME

The irony didn't escape Farah. Liver cancer took her father's life and now her own liver was taking over her whole life. She thought of giving up. Life seemed pointless now that her father, her source of strength, was no longer rallying beside her. But she thought about her mother, the woman who's always inspiring her to be stronger.

Confides Farah: "My mother is a superwoman. She opted for early retirement to care for me once I went on the waiting list. She took care of the house, my father and me. I don't know how she managed everything. My parents have sacrificed so much for me since I was born. I had to carry on."

Life after dad, though, returned to becoming a waiting game. She didn't know if she'd ever get that phone call she'd been waiting for. "Did you have any doubts that that day would come?" I ask her but she doesn't reply straightaway.

In late 2017, Farah's body was giving way. She felt weaker and more tired than ever. Even if she tried to stay strong mentally, her body wasn't cooperating anymore. Farah began accepting that she may actually pass on before the transplant was able to take place.

Numerous prayers helped her get through those excruciating months of oscillating between hope and despair. Then, one day, it was as if God finally said, "I hear you."

THE CALL

Days and months passed. Farah continued waiting. She'd quit her job as a graphic designer due to her ill health. The ongoing pain wore her out significantly. She was almost skeletal and relied on a wheelchair to get around.

Farah was jaundiced from head to toe, prompting wary looks from strangers. She depended on her mother for many daily chores. One evening in early 2018, she received a call from Selayang Hospital. They asked if she was feeling healthy and if she could reach the hospital within the hour. A liver had become available.

Her prayers had been answered.

As she was wheeled into the operating theatre, the doubts surfaced. Did she really want to do this? Would she wake up after the surgery? It felt like choosing between life and death. All the years of going in and out of hospital for treatments and medication, the pain and discomfort she endured, the waiting for a matching liver — all came down to this moment.

But if she turned back now, it would be a return to the same life she'd been living. A life of pain, despair and hopelessness. Her mind flew back to memories of the man who soldiered beside her from birth, accompanied her through the countless hospitals visits and treatments, but in the end, didn't live long enough for the transplant operation they'd been waiting for.

"Ayah, this is for you," she whispered to herself. Then the operation doors closed behind her and the anaesthesia took over.

RECOVERY AND REFLECTIONS

After waking up from her transplant surgery, she found herself spending a whole month in the Intensive Care Unit and High Dependency Ward. The next six months was crucial for her recovery and to minimise risks of infection and rejection of the new liver. She'd rely on immunosuppressants for the rest of her life to prevent her body from rejecting her new liver.

The surgery proved to be a success.

Reminiscing on her life before the transplant, Farah's tone softens. "I feel sad about that part of my life. I caused hardship to others due to conditions that were out of my control. This was something that I didn't do anything to invite upon myself," she muses, eyes misty.

She becomes a little wistful when reflecting on the things that she missed out on while battling a failing liver. She spent five years of her life focusing on her health and in doing so, had forgone chances to build a career and achieve milestones like buying a car and house, even marriage.

Sometimes, it feels like she's playing catch up, she tells me. However, she's learnt to be grateful for the small things. Like no longer feeling pain when moving, no longer needing to use the disabled toilet, being independent, among others. The best part of life today is being able to do things for her mother — just as her mother had been doing for her all these years.

MOVING ON

To this day, Farah doesn't know the identity of the donor of the liver she received and she probably never will. She only knows that the donor was very young, healthy, had passed away in an accident and been pronounced brain dead. To protect the privacy of both the organ donor and receiver, such information is never disclosed.

Now 33, Farah is living life to the fullest. She's back in employment as a graphic designer. She's active outdoors, enjoying her hikes and runs every week. Having been given a second lease on life, she's making up for lost opportunities.

The last I heard from the spirited woman, she was mobilising a flood relief team in response to the torrential rains in the capital city a week before Christmas. Would things have been different without the life-saving transplant? I wonder. With Farah now the epitome of health and vitality, that'll always remain a moot point.

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