A Last Chance At Life
The shocks of survival: a history-making patient reveals his day-to-day struggle of living with a new heart.
The Weekend Australia
April 4-5, 1987

(Eightteen months ago Seah Chiang Nee became the first person from Southeast Asia to undergo a heart transplant at Sydney's St Vincent's Hospital. It was performed by Dr. Victor Chang. In an exclusive article, Seah writes of how he escaped death by a week, and of his life since, with the heart of an 18-year-old Australian youth beating inside him.)

I was browsing in a bookshop in downtown Singapore. As I straightened up after replacing a book on a bottom shelf, the floor spun like a merry-go-round gone amok. Then darkness. Sweat appeared all over my forehead. The episode seemingly lasted only a fraction of a second.

I must have staggered. I remember catching hold of the shelf for support, closing my eyes and shaking my head. The feeling of nausea gradually left and my vision returned.

Must have overworked, I told myself.

Unknown to me, my body was passing me a powerful message that things were going wrong, terribly wrong. It was ironic. For many years I had reported the ills of the world - South Vietnam in the 60s, the Middle East and Africa, China and Thailand - but this had not trained me to recognise the illness that had hit me.

Why should it? After all, I had lived in the fast lane for most of my youth, worked hard, played hard and dreamed hard, seldom feeling sick while doing so, and I was only 42.

When I had a second heart attack several weeks later I again ignored it.

Then events moved fast. As Editor of a new newspaper Singapore Monitor), I was under increasing pressure and stress. My decaying heart went from bad to worse. I would wake up in the morning, bathe, dress and go to work. But as soon as I approached the lift I would feel an overwhelming sense of fatigue. In the office, lethargy and tiredness would set in. During editorial meetings I would slouch in the chair, taking less and less part.

"You're looking terrible. Why don't you see a doctor?" exclaimed my secretary one day. Without waiting for a reply, she picked up the phone and made an appointment.

The news was bad. I had contracted cardiac myocarditis - a very rare viral infection that had attacked and virtually destroyed my heart. It was, apparently just back luck; anybody can be hit in the heart by such a virus. This time the roulette ball had stopped at me.
The gloomy-looking doctor said that, with medication to retard the deterioration of my heart, I had about two years' to live. For the next two years I spent various periods graduating from one hospital to another. When I could work, it was for no more than five or six hours at most.

Then the pain began.

Yes, I learnt about pain-killers. I took so many that they soon lost their effect. Yes, I learnt about sleeping pills. They, too, failed to work after some time. At times I considered suicide. It was then that I learned why hospitals keep their windows locked.

Soon, my heart was failing to pump enough oxygen to my brain, and my mind began to degenerate. When moments of madness hit caused by a brain being deprived of oxygen, I would become irrational, making unreasonable demands of my wife and the nursing staff. On one occasion I spent the whole night in a hospital insisting on sitting in the corridor or on the bathroom fully-robed until the doctor had me tied to my bed like a lunatic.

Most of the time, I coughed incessantly.

Then I got lucky. Very lucky. Sydney heart surgeon (late) Dr Victor Chang was visiting Singapore as Prime Minister Lee Kuan Yew's Distinguished Visitor Of The Year; a programme aimed at inviting some of the world's best brains to give lectures to our Singapore students and professionals to upgrade our knowledge. He was kind enough to visit me at the hospital and, after looking over my thick file, said: "Come and see me in Sydney. I'll see what I can do." It took a whole fraction of a second for me to say "yes". If I made it, fine. If not, at least I would escape the pain.

But first I had to find the money for the medical bills and at least four months in Australia recuperating; a seemingly impossible A$80,000 (at the time about S$120,000).
But on hearing the news, Singaporeans rallied around, especially the press community and friends and the money was very quickly raised.

Australia was my only chance at life. An operation in America would be too expensive, and there are no heart transplants in Singapore. In fact organs are hard to come by in Chinese communities because of an old belief that you should be buried whole. But this is changing, and legislation will come into effect here later this year under which organs are automatically donated on death unless you have previously notified authorities that you object.

I had taken the journey to Singapore's Changi airport scores of times.
As a journalist I had worked in more than two dozen countries. But this trip was different - it was made in the back of an ambulance.

As I stared out of the ambulance window I took in the wide, tree-lined expressways and blocks of apartments, telling myself numbly that this could well be the last time I would see Singapore, my home. I felt like a condemned man..

There is never a good time to be inflicted with a disease. For me, it could not have come at a worst time.

After years of foreign assignments, I had felt that my journalistic angel had smiled on me when I was made editor of a new newspaper, The Singapore Monitor, in a well-educated country of 2.5 million people who were served only by one major newspaper. How many journalists in the world would have such an opportunity in their lifetime?

During the flight to Sydney my mind was wrapped up in personal thoughts - my life, my wife Pat and my six-year-old son, Pei Kwang. The fact that I was going to become the first South-East Asian to undergo the transplant, and was therefore heading for a little rendezvous with history, did not strike me.

The waiting at St Vincent's Hospital was the worst period.The pain was overwhelming. For three weeks I prayed either for a donor heart or failing that, a quick death. Unknown to me, I was nearing the end of the road. Doctors had given me just one more week to live. But thanks to the generosity of an Australian family whose teenage son had died, death was to be put off. The transplant took place on October 12, 1985.

The difference after the operation was stark. Even though I was semi-conscious and could not even recognise my wife, I realised that a minor miracle had occurred: the pain had gone. The relief was immense. The transplant had taken about five-a-half hours, but all I can remember of that crucial night is the wailing of a police siren as my life-giving heart was being rushed to St Vincent's Hospital.

For the first three weeks I slept with my hands firmly held across my chest every night in an instinctive move to protect my new heart. As my brain struggled to fight off the process of degeneration, which followed, I behaved irrationally. On one occasion I climbed out of bed in a frantic search for my heart, saying that someone had stolen it.

There were times when I would watch television, apparently enjoying it - when the set was not switched on. This worried Pat, who thought I had lost my marbles, until it was explained that my behaviour was usual for heart transplant patients.

I dreamt incredible dreams, lots of them. In one, I found myself in the control room of a flying saucer, a round object, which emitted a bright light from the bottom. It hovered above a Singapore Airlines plane, broke through a layer of cloud and went straight to the White House in Washington, where it lit up the sprawling complex.

There were also painful dreams, like the one in which I was hooked in the throat by a fish-hook. Every time I tried to pull myself free, a spasm of pain would shoot across my brain. Last month a friend invited me to go fishing. With this memory still fresh in my mind, I declined.

In my isolated room, strung by a series of tubes attached to my body, I had just enough left in my brain to realise that I was, in fact, a new person.

The first evidence that I had escaped the twilight zone came one morning when a nurse was helping me with my bath, something that had been a daily routine for weeks. But that morning something happened. To my embarrassment, I became sexually aroused as she washed me. Until then I was not even aware that I was being helped.

The Aussie nurse was not fazed as I would have expected - in fact she was delighted. "Good on you Mr Seah. You are now back to normal." she said. As time passed, my mind began to clear and the hallucinations gradually decreased. As time passed my mind began to clear, the hallucinations gradually decreased. Doctors would ask me what day or date of the year it was, questions which took me much effort to answer.

To help me regain a clear mind, I was taken to a room to play games and improve my memory.

Most of the time I was asked to pair off pictures on cards that were placed face-down after I had committed their locations to memory. On other occasions, a passage of about 100 words was read to me slowly a number of times and I was asked to recite as much as I could remember. Eventually, I could play scrabble.

Physical exercise was also part of my resurrection. At a time when my legs were barely strong enough to walk, I was made to ride an exercise bike. I began to refer to it as "my torture chamber", but it worked miracles on my frail body.

When I left Sydney nearly four months after the operation, I was able to cycle for almost 45 minutes starting from 10 km/h, rising to 30 km/h. If you think it is easy, try it.

During the last three months of my stay in Sydney - even though Pat was there with me (with Pei Kwang attending a Darlinghurst kindergarten) - I was forced to do everything by myself; so much so that I began to think that the word "self-reliance" was invented by St Vincent's. But they knew my pronounced mood of lethargy had to be destroyed.

As if in a new life, I had to start again to brush any teeth, shave myself, change my clothes and later, learn what each medicine was for and when and how to take them. I began reading newspapers and listening to the radio as the journalistic part of me returned. The doctors now would ask me what were the day's headlines, which was easy enough in Australia; rising interest rates.

After about a month, I began to realise that I was unnecessarily short-tempered, often for no valid reason.

I also found myself easily moved to tears: a moving scene in a TV soap opera or a few touching words to me, were enough.

Then all of this was replaced by a mood of escapism. I shunned people, as if I was building a mental wall around myself. For eight or nine months, I was reluctant to meet people, even friends back in Singapore.

A knock on the door would find me rushing into the bedroom and hiding.
Today I am mercifully out of that and working as a freelance journalist, writing for English-language papers in Singapore and Malaysia.

I travel regularly around Malaysia. Indonesia, Thailand and have just spent a week in Hong Kong doing a "countdown" story; 10 years to go before it is passed back to the Chinese. Earlier I went to Malaysia to cover its quarrel with Singapore over the Israeli President's visit.

Occasionally I do some consultancy work, video script-writing for public relations companies. Last month I took part in the first World Asian Publishing Congress attended by more than 300 people from 32 countries, talking on problems faced by some Western publishers especially US newspapers in Asia.

Life is as good as we make it, and I don't intend to sit idly as the world goes by. For me to undergo a transplant operation in order to be half put out to pasture is not my idea of living. I want to continue working maybe eight to 10 hours a day, five days a week.

Right now, I am not as active as I want to be. But I have pulled myself out of the mood of escapism, which all heart transplant patients undergo. In fact it was only last November that I resumed some pretty active work, 13 months after the operation.

Someone once said that no objects of value are worth risking the priceless experience of waking up in the morning. In the hustle of earning a living, most people do not regard life in this poetic way I do.

My biggest regret is that I am unable to personally thank the Australian family, which granted me this new lease of life. Under Australian law, the doctors were not allowed to reveal the identity of the donor family, or to tell them who benefited.

There is, however, forever a place in my heart for them.

The transplant has made me look at life differently. I try not to let minor irritations bother me. I think a lot more about life and its meaning; I accept that I came into this world without anything and will leave without taking anything with me.

I no longer get bothered by rude drivers and long queues.

One of the biggest surprises came on my triumphant return to Singapore where my case had received regular publicity. There, confronting me, was a large wheelchair. I didn't need it - I had been walking five kilometers a day in Sydney - so I was stunned. If that's how they thought a heart transplant patient returned home, how was I going to get a job?

People were surprised that I wanted to work. Or that I jogged, swam and played tenpin bowls again.

This vision of a heart transplant patient being a fragile, even helpless, creature who needs help at every turn, not to be trusted with important errands, I was told, still prevails in Australia today. In Singapore, it is even more pronounced. It is done out of concern for the patient. He tries to lift up a heavy bag and a number of willing hands rush to help him. Thus I work as a freelance journalist because I accept that it is very unlikely that in Singapore I will be offered a permanent job.

Unlike in Australia, there is no Medicare in Singapore - here a company looks after the health costs oof its employees. The whole mentality here is that you are not subsidized, you fight for your own.

I am lucky that the Government here has agreed to subsidise half the cost of my main medicines - including the 1980s wondow drug cyclosporin, whose rejection-deadening proppperties enabled a return to heart transplants after 1984.

Even so, my medical costs are about A$650 a month - including the cost of a heart biopsy very three to four months. This is the only way to tell if the heart is being rejected. A Singapore doctor flew to Sydney to learn how to perform this procedure.

Another shock of a transplant is that the recipient needs great will power to live. A sense of discipline. You can't eat and drink as you pleas or forget about exercise or pretty soon your health will deteriorate. Thus, on average, only 52 per cent of heart transplant patients live for five years. In a unique case, a man survived for 18 years.

No surgical miracle can prolong life if the patient lacks the will to live under a different lifestyle and big constraints. Medical science cannot do more than give man the chance; whether he can summon enough will-power to live on can only be decided by himself. It takes a tremendous amount of courage and discipline, so much that a few may find it beyond their ability to cope.

The daily drugs are like a big rock around your neck. Since my return, three of my fellow transplant patients have died. Two of them, I was told, lost the will to live. A few others say they did not expect the changes to be so drastic, or the obstacles so large.

The first and biggest obstacle is, of course, getting a normal job - for why should an employer hire a transplant patient when he can choose from thousands of others who are "norma;". Transplant patients incur large medical bills and others, naturally, don't like to be burdened by them

Besides, survival depends on a change of lifestyle and giving up doing many favourite things, like:

EATING - a patient has to observe a strict diet; largely bland food with low cholesterol, no salt, no animal fats, no sweets, chocolates, ice-creams or other ingredients that make for tasty meals. He has to watch his weight constantly. Social activities are curbed as a result. Eating outside becomes a burden.

SPORT - No competitive, over-active sports, just regular exercise every day; brisk walking, jogging, swimming, aerobics but nothing terribly strenuous.

TRAVELLING - For one like me who likes to travel to exotic places or live an outdoor life, the curbs can be over-whelming. Patients are discouraged from long-distance travel especially to places where health standards are low and drinking water suspect. They should be close to adequate health facilities.

Catching a bug like a cold, a normal event among normal people, can be disastrous for a transplant patient because the drugs suppress immunity. You must get quick, specialised medical treatment when things go wrong.

Of course, trying to live a normal life with abnormal constraints is not easy. In fact, sometimes I feel like a sheep dog straining to keep its flock together; as fast as one errant lamb is manoeuvered into line, another one darts away. But there's little time for regrets - or for the past. According to the law of averages, I have one chance in two of living for five years. That will take me right up to the end of 1990.

If it doesn't, well, I will leave this life five years richer. There's not much time. So you just tip your hat to the past - and roll up your sleeves for the future.

It's something I am doing with some zeal - and a great deal of gratitude to Australia, to an Australian doctor and an unknown Australian family who made it all possible.

I'm really grateful Australia. As far as I'm concerned, you can do no wrong. I have 1,000 reasons to say: "Thanks, mate.".
Seah Chiang Nee