23-year-old blind Singaporean woman gets gift of kidney after 10 years of waiting

Tan Xing En was diagnosed with retinitis pigmentosa when she was around three years old, which causes a gradual loss of vision. At 13, she was diagnosed with kidney failure. After 10 years of dialysis, she received a kidney transplant.

SINGAPORE - Miss Tan Xing En celebrated her 23rd birthday earlier this month, having already received the gift she has long been waiting for - a kidney and a new lease of life.

Miss Tan - who is also blind - was suffering from kidney failure and had been on dialysis since she was 13 years old. She had been waiting for a kidney donor for 10 years and was on standby for a potential kidney match three times previously.

But those did not pan out, until Oct 11, when she finally received a kidney from a donor who died in an accident. She does not know the donor's identity, gender or age.

She told The Straits Times: "I'm very grateful it (the kidney) finally came. And I'm very relieved I don't have to go for dialysis any more, which I find very draining."

Her long wait underscores the scarcity of kidney donations here.

The Ministry of Health (MOH) said that while the number of patients on the wait list has almost halved from 563 in 2007 to 253 as of the end of June, the wait for a kidney from a dead donor has remained “relatively constant” at nine years in the past decade. Living donors usually give their kidneys to a family member.

This is largely due to the small number of donors whose organs become available after their deaths. The number of donors has remained fairly constant, and since not all the organs of willing donors are suitable for a transplant, the waiting time has not really fallen.

An average of 175 patients a year were taken off the wait list in the past five years, as they may have received a kidney transplant or decided for other reasons to withdraw from the list. Less than 4 per cent of patients died while waiting for a kidney, the MOH said.

Those on the wait list range from a three-month-old baby to a 75-year-old senior. There were an average of 35 kidney transplants from dead donors a year in the past decade, compared with an average of 34 from living donors a year.

While the number of kidney donations has not shown any steady increase in the past decade, even after amendments to the Human Organ Transplant Act to enlarge the donor pool, the number of people diagnosed with end-stage renal disease is growing.

Last year, 6,700 people were diagnosed with the disease, almost 30 per cent more than the 5,200 in 2012. They have to undergo dialysis or a kidney transplant to stay alive. The MOH spokesman said this number is expected to rise, given Singapore's ageing population and the numbers suffering from diabetes.

For Miss Tan, her parents and two older brothers were not suitable donors. Hence, the National University of Singapore English literature undergraduate had to wait for a donor.

In a study done by the Singapore General Hospital (SGH) involving over 1,500 people in 2009, the fear of surgical risks and the worry of poorer health after the kidney donations are reasons why those polled would not consider giving their kidneys when they are alive, said Dr Terence Kee, director of the SGH's Renal Transplant Programme.

But for kidney patients like Miss Tan, a transplant is a new lease of life as they do not need to undergo dialysis and they can enjoy life like their peers do, said Professor Yap Hui Kim, head of paediatric nephrology at the National University Hospital (NUH), where Miss Tan had her transplant.

Miss Tan was diagnosed with retinitis pigmentosa when she was around three years old, which causes a gradual loss of vision. Three years ago, she lost almost all her sight and can only see shadows now.

But the diagnosis of kidney failure was a greater blow than blindness.

She said: "I grew up with the knowledge I would go blind one day. And the dialysis (journey) was like a roller coaster with lots of complications."

When she first started dialysis, she did it at home through peritoneal dialysis, which involves filling and draining dialysis fluid into and out of the abdominal cavity overnight.

But after three bad infections, the last of which left her hospitalised for three months, she had to switch to haemodialysis, where patients are treated at dialysis centres.

When she was first diagnosed, the doctor said that the wait for a kidney was six to seven years. But as the years passed without the transplant, Miss Tan felt disheartened at times, although she tries not to dwell on it.

Her mother housewife Lee Siew Chow, 53, said she is grateful beyond words for the kidney donation. She went from feeling helpless about her daughter's poor health to feeling a lot more hopeful for her future now.

Miss Tan said: "If life throws you curveballs, you just have to catch it. I don't feel sorry for myself. I'm grateful for everyone and everything that I have and that I'm still alive."