second chances part 1-lee chen hoe

By TAN SHIOW CHINstarhealth@thestar.com.my

REMEMBER that old urban leg-end about a traveller wakingup in a hotel room bathtub

full of ice, with a note telling him tocall 911?

And when he does, the operatorasks him to check for an incisionon his back, and lo and behold, oneof his kidneys had been surgicallyremoved while he was uncon-scious?

There are a few variations ofthis story that spread like wildfirethrough the Internet in the late1990s, but all versions attributedthe theft to an organised crime syn-dicate that was targeting randompeople to harvest their kidneys andsell them on the black market.

While this story is certainly nottrue, the motivation behind it is nothard to understand.

In Malaysia alone, there are15,055 kidney failure patients onthe transplant list, waiting for a kid-ney to become available for themfrom a compatible cadaveric donor.

This number would be evenhigher, if it were not for the factthat some patients are fortunateenough to find willing and compat-ible donors from within their ownfamily. Luckily for kidney failurepatients, human beings can func-tion quite well on just one healthykidney.

With an extremely low organdonor pledge rate of only 0.6 per-

sons per million population – acurrent total of 188,147 Malaysians– the chances of a suitable kidneyturning up are quite slim.

Add on to that the facts thatorgans can only be harvested fromdonors who have met an accidentor experienced some trauma thatleaves them brain-dead, but withstill-functional organs, plus bothdonor and recipient must be com-patible in terms of blood type, tis-sue and crossmatching, in order toprevent organ rejection, the oddsbecome infinitesimally smaller.

To give an idea of the odds, kid-ney transplant patient Lee ChenHoe calculated that a person is fourtimes more likely to win the firstprize in the lottery than to get asuitable kidney from a cadavericdonor!

But kidney failure patients shouldnot give up hope as the chances ofthis happening is not impossible, asevidenced by the stories below.

Paying it backLee likes to say that he is 54-

years-old biologically, 16-years-oldsurgically, and has a 72-year-oldorgan inside him – his donatedkidney.

In fact, the management consult-ant has stopped observing his annu-al birthday, and instead, celebratesthe anniversary of his successfulkidney transplant on July 27, 1996.

Diagnosed at the age of 33with chronic kidney failure due toglomerulonephritis, Lee thoughtthat his world had come to an end.

The blow was especially devas-tating as his future had seemed sobright at that point – he had justreturned from a training stint inSweden to good career prospects,and was happily raising twin two-year-old daughters with his teacherwife.

When the doctor told him hisvomiting, tiredness, body aches andswollen ankles (among other symp-toms) were a sign that his kidneyshad permanently failed, Lee says:“I couldn’t accept it. It took me fourmonths to accept it, I cried for fourmonths.”

The only thing that brought himout of his depressive funk was hisdaughters. He says: “It was my twingirls who gave me the strength togo on.”

He adds: “My main motivationwas to see my daughters graduate,otherwise, I don’t think I could havesurvived.”

Even so, he confesses that thethought of just driving off the high-way into a ravine on his way backand forth from work crossed his

mind more than once. “I even knewexactly where to do it,” he says.

His depression also delayed himfrom signing up for the MalaysianOrgan Sharing System (Renal) wait-ing list (e-MOSS) until a year afterhis diagnosis, as he was still think-ing about dying during that time.

Four years of chronic ambulatoryperitoneal dialysis (CAPD) later, Leereceived his miracle.

� COVER STORY StarFit4Life, Sunday 11 March 2012

THE problem with chronic kidney failure,says Hospital Selayang consultant nephrolo-gist Dr Rafidah Abdullah, is that it is a silentdisease.

Patients don’t often have symptoms untilthey have reached the last stage of the dis-ease, when their kidneys are only functioningat about 15% of their capacity.

By that time, they will have alreadybecome dialysis-dependent, she says, mean-ing that such patients will not be able to sur-vive without daily dialysis treatments.

“A lot of times, patients don’t know thatthey have gone into kidney failure becauseit is picked up at such a late stage,” says DrRafidah.

She opines that this is due to a number offactors.

One is that the symptoms of kidney failureare very vague and general, and can be dueto numerous other medical conditions. Thesesymptoms include nausea, vomiting, tired-ness, and difficulty in eating, among others.

Another factor is the low awareness aboutthe condition among both the general publicand doctors, although Dr Rafidah feels thatthis situation is slowly improving.

The scary part is that this silent diseaseis very common, affecting one in every 10Malaysians, according to her.

She says: “The number one cause of kidneyfailure in Malaysia is diabetes, followed byunknown causes.”

In 2010, 56% of new dialysis patients were

caused by diabetes mellitus, followed by 30%from unknown causes.

Dr Rafidah however, suspects that many ofthe “unknown” causes are due to hyperten-sion – another common condition suffered bymany Malaysians.

And while survival rates on dialysis are nottoo bad, the odds become much worse if thepatient is diabetic.

“Forty-three percent of diabetics on dialysissurvived to five years, versus 65% of non-dia-betics,” she shares.

While dialysis patients are perfectly capa-ble of leading a fairly normal life outside oftheir treatments, the problem lies in the time-intensive sessions they have to undergo.

Over 90% of Malaysian kidney failurepatients are on haemodialysis, which requirespatients to go to a specialised centre threetimes a week for four hours each time. Andthis, says Dr Rafidah, is not including traveltime, and the pre- and post-preparation timesneeded for the dialysis.

Nephrologists would like more patientsto go on Continuous Ambulatory PeritonealDialysis (CAPD), where they can perform theneeded procedure by themselves at home, oranywhere appropriate.

This form of dialysis needs to be donefour times a day for about 15 minutes each,and offers a higher form of independence topatients.

“But only 8% of Malaysian patients are onCAPD, compared to South Korea, which is

99%,” says Dr Rafidah.The only hope for patients to get off dialysis

is to undergo a kidney transplant from a suit-able donor.

In Malaysia, there are only two (legal)ways of getting a kidney: from a willing fam-ily member, and from a brain-dead pledgedorgan donor.

Dr Rafidah estimates that the donation

rates between the two sources are equal atabout 50% each.

“It’s very clear that the outcome in termsof complications is better, and life is muchlonger. It’s like a gift of life,” she says.

But the problem is that Malaysia has anextremely low organ donation pledge rate.“It’s one of the lowest all over the world. It isvery, very sad,” she says.

dr rafidah (left) speaking to hisham ahmad, who received a kidney from his wife Sabariah abu afterexperiencing kidney failure, in her clinic.

A silent disease

This year’s WorldKidney day theme is‘donate - a Kidneyfor Life - receive’. Welook at how organdonation affectedthree lives.

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Second chances

Sivakumar shows his scar from the kidney transplant operation. – aZMan GhanI/The Star

On his commitment to raising awareness of the importance of organ donation, Leesays, ‘I’ve lived 16 more years (after getting his new kidney), what’s a few hours ofmy life compared to that?’ – rayMOnd OOI/The Star