This year’s World Kidney Day theme is ‘Donate - A Kidney for Life - Receive’. We look at how organ donation affected three lives.
REMEMBER that old urban legend about a traveler 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 persons 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-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 two-year-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.”
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.
C.H. Bender, a 56-year-old American expatriate and pledged organ donor, had a stroke and was declared brain-dead.
One of his kidneys was found to be compatible with Lee’s body, and so, Lee had his second chance at life. “I can’t tell you how happy I was. My eldest daughter was the happiest, she said, now daddy can carry us,” he recalls.
Lee got to see his daughters graduate with accountancy degrees last year. And now, he is slowly fulfilling his goal of travelling around the world, with Europe next on his list.
But his passion nowadays is raising awareness of the importance of organ donations and sharing his experiences with fellow kidney failure and transplant patients.
His enthusiasm and commitment is such that oftentimes his business takes second place to it, as client meetings are politely postponed to accommodate talk and counselling requests. Fortunately, his clients are very understanding.
“My grandmother taught me that when someone helps you, you have to pay it back,” he shares, adding that what was important to him and his wife was not money, but raising their daughters well.
“Sixteen years of new life – everyday I wake up, see the sunshine, that is money already for me.”
Two times the miracle
Nor’asiken Lajis@Aziz, 49, struck the organ transplant lottery, not once, but twice.
As a newly-wed, she suffered a miscarriage due to high blood pressure. This unusual circumstance for an 18-year-old led the doctors to investigate further, and she was eventually discovered to have kidney failure.
At that time a Johor resident, she had to come back to her hometown of Kuala Lumpur for treatment at the General Hospital here, where she was immediately started on dialysis.
“At that time, I was depressed, easily angry, moody and frequently urinating all the time,” she shares.
“I didn’t feel normal; I hated to be around people, hated to talk to people. At home, I would lock the room door and didn’t want to come out.
“I felt like God didn’t love me.”
She admits to being a difficult patient, frequently “running away” from the ward and pulling out her needles. At one point, she even had to be restrained on her bed by the hospital staff.
But fortunately for Nor’asiken, her family members were more than willing to donate a kidney to her. In the end, it was decided that her father would be the one to make the donation.
Thirty-one years later, she still tears up as she remembers her father’s sacrifice. “It was the best gift he could give me,” she says.
However, because of her father’s asthma, the doctors warned Nor’asiken that the kidney would likely last around eight to 10 years only.
True enough, eight years later, the kidney failed, exacerbated by the medication she had to take for a rare cryptococcal infection.
When that happened, Nor’asiken was so depressed that she resigned her job at the Institute for Medical Research and just waited to die. “I felt so scared,” she says.
It was then head of Hospital Kuala Lumpur’s (HKL) Nephrology Department Datuk Dr Zaki Morad Mohd Zaher who showed her some tough love by scolding her, and then giving her a job at the department. “He was like a second father to me,” she recalls fondly.
She was then on CAPD for 10 years before her second miracle happened – a pledged organ donor who had been involved in an accident and was declared brain-dead, was a match for her!
She was so scared at this unexpected opportunity that she didn’t dare tell anyone, even her husband or mother, for fear of it being unsuccessful. She only told them after the operation had been successfully completed.
Now, 12 years down the road, Nor’asiken keeps busy living life to the fullest. As she describes her self, she is “sibuk dan menyibuk”.
Her days are filled with counselling fellow transplant patients, organising and participating in charity events, as well as managing a kompang group and a senior citizen marhaba group, in addition to her day job as an assistant for the Post Graduate Renal Society Malaysia based in HKL’s Nephrology Department.
“My life has been full of drama,” she says with a smile. “I’m just glad I can share it with people.”
New lease on life
Security guard S. Sivakumar, 32, was only seven when his family found out one of his kidneys was slightly damaged.
“The doctor asked my mother if she had taken anything while she was pregnant with me, and she said she did, although I’m not sure what it was,” he recalls.
At that time, he had been experiencing fever, swelling of his legs, vomiting and stomachaches.
But the good news was, his kidney could still be treated with medication.
Then, came his teen years.
Sivakumar admits that he not only played truant from school frequently, but also completely stopped going to the hospital for his medications and follow-up appointments. “I thought I was alright,” he says.
But at the age of 20, he started experiencing the same symptoms again. This time, both of his kidneys were beyond rescue; he had to go on dialysis.
“I felt very bad, I cried everyday, I didn’t want to go anywhere and thought about dying,” he says.
“I told my sister I wanted to die and she scolded me. She assured me that I had God, that I will get a kidney.”
Even then, it took him two to three years to accept his condition.
With support from his family, Sivakumar diligently learnt how to perform CAPD on himself, and tried his best to continue working as normal.
But he drew his encouragement from the fact that he could at least, carry on quite normally, with the exception of having to undergo dialysis.
“I see so many other people with diseases where they can’t even move or go out, whereas I can go out and do things, I just have to cuci (perform dialysis),” he says.
Then, in January last year, he received the call that all kidney failure patients hope for – a kidney had become available from an organ donor.
“I was very, very happy; I called my whole family!” he shares.
Now, after the successful operation, Sivakumar is relishing the freedom of being able to go anywhere without having to worry about his dialysis.
He happily shares that he has been on holiday to Langkawi, and hopes to be able to go to Singapore to work, as long as he can get around his family’s objections.
“Last time, I had nothing; now, I’m very happy – I got a kidney, I have a car. But have to take care also – I must take care of the food I eat, and drink the right amount of water.”