In the beginning, he had high hopes of getting a transplant and freeing himself from dialysis.

'One by one, I saw my friends at the dialysis centre disappear because they managed to get a transplant. So I was hopeful my turn would come.'

He didn't know then that patients could also be dropped from the queue or their positions changed.

Kidney transplant surgeon Dr James Tan said that a cadaveric kidney will be given to the patient who has the best match. 'It is not on first-come-first-served basis. Every kidney is so precious that we have to minimise any risk of rejection by the recipient.'

Kidney specialist Dr Akira Wu said that most times, patients are taken off the waiting list for their own good. 'Patients who have developed health complications, such as diabetes, may suffer a stroke and not even survive a transplant.'

Mr Jusmi's wife, customer service officer Hamidah Kassim, 45, was willing to give her kidney to her husband but Mr Jusmi refused as he was afraid the operation would harm his wife and leave their three children as orphans.

He had one false start. In 2000, after waiting 11 years, he received a call from the SGH transplant unit telling him to get ready for an operation. But just hours later, he got another call: the kidney had been given to someone else.

'To have my hopes raised and dashed just like that was terrible. From then on, I told myself to stop hoping for a transplant because it was never going to happen,' he said.

The effect of Mr Jusmi's failing kidneys started to show as the years dragged on.

In 1999, 10 years after he fell ill, Mr Jusmi stopped urinating altogether, becoming totally dependent on dialysis to rid his body of toxins.

In 2004, he had his heart bypass surgery when three arteries were found to be choked. His heart surgeon told him it could be due to the calcium supplements prescribed for him.

Last year, he had another operation. The parathyroid glands in his neck, which help regulate calcium in the body, were going into overdrive. Doctors had to remove three of the four glands there and embed the remaining one into his right hand.

Twice this year, he was rushed to hospital in an ambulance when he became breathless.

Medical bills started taking a toll on the family's finances. The $10,000 or so in his Medisave account was wiped out within two years of falling ill. He relies on his wife's Medisave to pay all hospitalisation fees.

Each month, he spends $180 for his dialysis at the National Kidney Foundation, $120 for blood tests, and $500 for medications.

He is hospitalised at least once a month, each time incurring about $1,000 in bills.

Last year, the family sold their four-room Jurong flat and downgraded to a three-roomer. The family also started relying on Madam Hamidah's $1,600 a month salary as he had become too weak to drive his taxi.

Their youngest child, nine-year-old Dinie Asyraf, has learnt to use the blood pressure machine. Oldest daughter, Nur Syirah, 18, stressed out by her father's health problems, has frequent fainting spells.

Madam Hamidah said: 'This illness does not affect my husband alone but the entire family as well. We take each day as it comes and tackle one problem at a time.'

Is this article useful to you?