From a very young age, Lim Chin Heng remembers suffering from frequent stomach aches.

His eyes were yellow and he would constantly walk around itching and scratching, especially if he ate seafood. Every time he developed a fever, his parents would dash their weak child to the hospital.

“I’ve lost count of the number of times I have been admitted and the amount of medicines I’ve had to take,” recalls Chin Heng, 24, who was born with bilary atresia, a rare congenital disease where an absence of the bile duct causes the accumulation of bile in the liver, eventually leading to irreversible liver damage.

Those with this condition seldom live past 20. Before he turned one, Chin Heng underwent the Kasai procedure, an operation that involves connecting part of the intestine directly to the liver so that bile is able to flow from the liver to the intestine. At nine, he had another procedure done.

His condition started deteriorating rapidly last year and doctors gave him two months to live. For patients like Chin Heng, their only option is a liver transplant.

“My father wanted to donate his liver to me, but unfortunately, he was diagnosed with fatty liver disease and was not a suitable match,” he says.

Thankfully, eldest brother Lim Chin Hock, 36, was found to be a good match, and though he was worried about the outcome, he was willing to sacrifice every possible organ or limb to save his little brother.

“I didn’t have many choices!” says Chin Hock, laughing. “It was either I donate part of my liver or my brother dies. What would you have done?

Chin Heng (L) and Chin Hock share a special, brotherly bond.

In January, preparations were made for the transplant to be carried out by the newly formed Liver Transplantation Team at Universiti Malaya Medical Centre in Kuala Lumpur.

Chin Heng says, “Even though I had a match, I was scared because this was the first transplant here and I wasn’t sure if both of us would emerge alive. My brother has two kids and it wouldn’t be fair to them should something happen.”

The 18-hour operation headed by consultant hepatobiliary surgeon Assoc Prof Yoong Boon Koon and his team, with assistance from Hong Kong experts who flew over to supervise, was successfully performed, making Chin Heng’s the first adult-to-adult living donor liver transplant case at UMMC.

Eight months later, both men are happy and leading normal lives, though Chin Heng has to be on immunosuppressant drugs for life. The brothers have two long scars on their abdomen, as proof of their tough journey.

Chin Heng says, “Before, I would be tired all the time and walked slowly. I have more energy now and am able to play badminton for two hours at a stretch! I have lost 5kg as my diet is more controlled. I’m eternally grateful to my brother and the doctors who have given me a new lease of life.”

Transplant the only option

For end stage liver disease, there is no effective treatment except for transplantation. The lives of people in kidney failure can be extended considerably by dialysis, and an implantable pump can often sustain those with heart failure, but there are no machines capable of taking over the liver’s functions.

Liver transplants have been carried out in Malaysia since 2002 at Selayang Hospital, Kuala Lumpur, using cadaveric donors or live donors from adult-to-child.

It took UMMC five years before they could assemble a team to start doing adult-to-adult living donor liver transplants.

Last year, the entire team was sent to Hong Kong for training.

“This is the first time we’re doing a transplant in Malaysia using the extended right lobe graft – taking a big chunk of the right liver, which I learnt in Hong Kong.

“We calculated the volume and the patient actually needed 65% of the liver. If I took the left side, it would only amount to 35% and it is not enough.

“We did a CT scan and calculated the volume needed for his weight, how much liver he needs and how much liver left behind is safe to continue the donor’s life. He (Chin Heng) was actually not first on our transplant list. One had severe fatty liver disease and the other one didn’t want to be the first pair!

The 18-hour liver transplant operation was headed by consultant hepatobiliary surgeon Assoc Prof Yoong and his team, with assistance from Hong Kong experts.

“So, he is very lucky. Everything went well and we’re pleased with the outcome,” explains Assoc Prof Yoong.

The liver begins to regenerate almost immediately after surgery.

Most of the regeneration occurs in the first two weeks after surgery, followed by a slower phase of growth over the next year.

With transplants, the five-year survival rate is around 80% to 90%.

“If you pass that, it’s not much of an issue. But, I did warn Chin Heng that because of his recurrent reflux problem, we have to watch his liver function closely or there is a small chance that it might harden again,” he says.

Due to the low rate of organ donation in Malaysia, those who have pledged as donors are not living healthy lives, making their livers non-viable to be transplanted into recipients.

Live donors are usually found among family members, but there is the possibility they won’t match.

“It’s only when we are sure the donor has an altruistic value in him, we try to help. First we try to scare him of all the possible complications such as liver failure, intestinal bleeding and problems not related to surgery. We have to assess and screen donors from all aspects,” says Assoc Prof Yoong.

Affordable procedure

Performing a transplant involves logistics and a big team of at least 20 people during the pre-op and post-op period.

“The entire liver transplantation team is multidisciplinary; we have surgeons, anaesthetists, physicians, psychologists or psychiatrists to evaluate donors, immunologists, etc.

“Each transplant requires two operating theatres running at the same time, and it takes about 12 hours or more, depending on the difficulty of the case.

“Quite a high percentage of them are emergencies, and while we can activate things fast, because it is a high-risk procedure, we have to watch for the outcome,” says consultant hepatologist Prof Sanjiv Mahadeva, who together with Assoc Prof Yoong and consultant paediatric hepatologist Prof Lee Way Seah, comprise UMMC transplant team’s steering committee.

For the moment, UMMC is focusing on adult-to-adult living donor liver transplants.

“We hope to do three to six this year. When we have gathered enough experience, we will do transplants on children as the child is smaller in size and would be more technically challenging,” says Assoc Prof Yoong.

The cost of the transplant at UMMC is around RM100,000 – more affordable than the private sector or going overseas for the procedure, which may amount to at least RM350,000. Currently, there is external funding available to bear the cost.

‘The moment you get liver failure, you might as well have cancer … you are going to die,’ says Prof Sanjiv.

Prof Sanjiv says, “After that, patients will have to be on anti-rejection drugs for the rest of their lives and that will cost around RM100 to RM300 per month – this is already subsidised.

“If they cannot pay that, then we may not be able to help them. In the long run, we are trying to establish a charity fund.

“As much as RM100,000 seems expensive, curing someone who is in the prime of his youth is not far from what a 75-year old pays for his chemotherapy and things like that.”

Is there an age limit for patients?

Assoc Prof Yoong says preferably, not above 55.

Prof Sanjiv adds: “At this age, they usually have more illnesses such as diabetes and hypertension, and since this is a high risk operation, they may not survive the transplant. The transplant is mostly for chronic sufferers and the common causes are alcohol and viral hepatitis.

“The next disease burden we’re seeing which is going to affect rest of Asia and the world is fatty liver disease – now in the range of 25% of the population.

“Caused by a sedentary lifestyle and poor diet, it’s closely related to diabetes and obesity, so the burden of chronic liver disease is not going to go away.

“It may not be as big as cancer or heart disease, but there is no cure.

“The moment you get liver failure, you might as well have cancer – you’re going to die, that’s it … to put it bluntly.”

The best option for liver disease, Assoc Prof Yoong says, is still deceased donor transplantation because it doesn’t endanger another life.

“If you look at other countries, they all start with living donors. When the living donor programme is successful, then people know that ‘hey, this can save lives, so why don’t I donate my organ when I pass away’. Ultimately, as long as the donor rate increases, I am happy. It offers hope and a second chance to live.”