The document summarizes three stories of people whose lives were impacted by organ donation for kidney transplants. Lee Chen Hoe was diagnosed with kidney failure at age 33. After four years on dialysis, he received a kidney transplant which allowed him to live another 16 years so far. He celebrates the anniversary of his transplant instead of his birthday. Sivakumar also experienced kidney failure and received a transplant from an anonymous deceased donor. Hisham Ahmad received a kidney from his wife Sabariah Abu after his kidneys failed due to diabetes. Organ donation and transplants are described as giving patients a "gift of life" but opportunities are limited in Malaysia which has extremely low organ donation rates.

1. COVER STORY
StarFit4Life, Sunday 11 March 2012
Second chances
This year’s World
Kidney day theme is
‘donate - a Kidney
for Life - receive’. We
look at how organ
donation affected
three lives.
By TAN SHIOW CHIN
starhealth@thestar.com.my
R
EMEMBER that old urban legend about a traveller waking
up in a hotel room bathtub
full of ice, with a note telling him to
call 911?
And when he does, the operator
asks him to check for an incision
on his back, and lo and behold, one
of his kidneys had been surgically
removed while he was unconscious?
There are a few variations of
this story that spread like wildfire
through the Internet in the late
1990s, but all versions attributed
the theft to an organised crime syndicate that was targeting random
people to harvest their kidneys and
sell them on the black market.
While this story is certainly not
true, the motivation behind it is not
hard to understand.
In Malaysia alone, there are
15,055 kidney failure patients on
the transplant list, waiting for a kidney to become available for them
from a compatible cadaveric donor.
This number would be even
higher, if it were not for the fact
that some patients are fortunate
enough to find willing and compatible donors from within their own
family. Luckily for kidney failure
patients, human beings can function quite well on just one healthy
kidney.
With an extremely low organ
donor pledge rate of only 0.6 per-
On his commitment to raising awareness of the importance of organ donation, Lee
says, ‘I’ve lived 16 more years (after getting his new kidney), what’s a few hours of
my life compared to that?’ – rayMOnd OOI/The Star
sons per million population – a
current total of 188,147 Malaysians
– the chances of a suitable kidney
turning up are quite slim.
Add on to that the facts that
organs can only be harvested from
donors who have met an accident
or experienced some trauma that
leaves them brain-dead, but with
still-functional organs, plus both
donor and recipient must be compatible in terms of blood type, tissue and crossmatching, in order to
prevent organ rejection, the odds
become infinitesimally smaller.
To give an idea of the odds, kidney transplant patient Lee Chen
Hoe calculated that a person is four
times more likely to win the first
prize in the lottery than to get a
suitable kidney from a cadaveric
donor!
But kidney failure patients should
not give up hope as the chances of
this happening is not impossible, as
evidenced by the stories below.
Paying it back
Lee likes to say that he is 54-
A silent disease
THE problem with chronic kidney failure,
says Hospital Selayang consultant nephrologist Dr Rafidah Abdullah, is that it is a silent
disease.
Patients don’t often have symptoms until
they have reached the last stage of the disease, when their kidneys are only functioning
at about 15% of their capacity.
By that time, they will have already
become dialysis-dependent, she says, meaning that such patients will not be able to survive without daily dialysis treatments.
“A lot of times, patients don’t know that
they have gone into kidney failure because
it is picked up at such a late stage,” says Dr
Rafidah.
She opines that this is due to a number of
factors.
One is that the symptoms of kidney failure
are very vague and general, and can be due
to numerous other medical conditions. These
symptoms include nausea, vomiting, tiredness, and difficulty in eating, among others.
Another factor is the low awareness about
the condition among both the general public
and doctors, although Dr Rafidah feels that
this situation is slowly improving.
The scary part is that this silent disease
is very common, affecting one in every 10
Malaysians, according to her.
She says: “The number one cause of kidney
failure in Malaysia is diabetes, followed by
unknown causes.”
In 2010, 56% of new dialysis patients were
years-old biologically, 16-years-old
surgically, and has a 72-year-old
organ inside him – his donated
kidney.
In fact, the management consultant has stopped observing his annual birthday, and instead, celebrates
the anniversary of his successful
kidney transplant on July 27, 1996.
Diagnosed at the age of 33
with chronic kidney failure due to
glomerulonephritis, Lee thought
that his world had come to an end.
The blow was especially devastating as his future had seemed so
bright at that point – he had just
returned from a training stint in
Sweden to good career prospects,
and was happily raising twin twoyear-old daughters with his teacher
wife.
When the doctor told him his
vomiting, tiredness, body aches and
swollen ankles (among other symptoms) were a sign that his kidneys
had permanently failed, Lee says:
“I couldn’t accept it. It took me four
months to accept it, I cried for four
months.”
caused by diabetes mellitus, followed by 30%
from unknown causes.
Dr Rafidah however, suspects that many of
the “unknown” causes are due to hypertension – another common condition suffered by
many Malaysians.
And while survival rates on dialysis are not
too bad, the odds become much worse if the
patient is diabetic.
“Forty-three percent of diabetics on dialysis
survived to five years, versus 65% of non-diabetics,” she shares.
While dialysis patients are perfectly capable of leading a fairly normal life outside of
their treatments, the problem lies in the timeintensive sessions they have to undergo.
Over 90% of Malaysian kidney failure
patients are on haemodialysis, which requires
patients to go to a specialised centre three
times a week for four hours each time. And
this, says Dr Rafidah, is not including travel
time, and the pre- and post-preparation times
needed for the dialysis.
Nephrologists would like more patients
to go on Continuous Ambulatory Peritoneal
Dialysis (CAPD), where they can perform the
needed procedure by themselves at home, or
anywhere appropriate.
This form of dialysis needs to be done
four times a day for about 15 minutes each,
and offers a higher form of independence to
patients.
“But only 8% of Malaysian patients are on
CAPD, compared to South Korea, which is
Sivakumar shows his scar from the kidney transplant operation. – aZMan GhanI/
The Star
The only thing that brought him
out of his depressive funk was his
daughters. He says: “It was my twin
girls who gave me the strength to
go on.”
He adds: “My main motivation
was to see my daughters graduate,
otherwise, I don’t think I could have
survived.”
Even so, he confesses that the
thought of just driving off the highway into a ravine on his way back
and forth from work crossed his
mind more than once. “I even knew
exactly where to do it,” he says.
His depression also delayed him
from signing up for the Malaysian
Organ Sharing System (Renal) waiting list (e-MOSS) until a year after
his diagnosis, as he was still thinking about dying during that time.
Four years of chronic ambulatory
peritoneal dialysis (CAPD) later, Lee
received his miracle.
SEE NEXT PAGE
dr rafidah (left) speaking to hisham ahmad, who received a kidney from his wife Sabariah abu after
experiencing kidney failure, in her clinic.
99%,” says Dr Rafidah.
The only hope for patients to get off dialysis
is to undergo a kidney transplant from a suitable donor.
In Malaysia, there are only two (legal)
ways of getting a kidney: from a willing family member, and from a brain-dead pledged
organ donor.
Dr Rafidah estimates that the donation
rates between the two sources are equal at
about 50% each.
“It’s very clear that the outcome in terms
of complications is better, and life is much
longer. It’s like a gift of life,” she says.
But the problem is that Malaysia has an
extremely low organ donation pledge rate.
“It’s one of the lowest all over the world. It is
very, very sad,” she says.