In 1995, when former store keeper, S. Doraisamy, 45, learned that he had suffered kidney failure, his first thoughts were for the welfare of his four school-going children, then aged between 13 and 19.
And when doctors told him that he needed to have a transplant or go on haemodialysis treatment for the rest of his natural life, he thought of his future as “bleak”.
“Before I was diagnosed with kidney failure, I occasionally felt nauseous, had severe headaches, and suffered from tiredness and rashes. I thought these were just due to my high blood pressure.
“But later, I experienced fluid retention, and when my doctor told me that my kidneys had failed, I was shocked and surprised. I couldn’t believe what he was telling me.
Nine years on, and almost 1,500 haemodialysis treatments later, Doraisamy is now ready to use his experience as a kidney failure patient undergoing haemodialysis, to assist others in a similar predicament.
He has joined the NKF’s recently formed Patient Support Group, is part of its Peer Support/Buddy System where haemodialysis veterans help new patients overcome their initial shock and disillusionment of having to undergo lifelong treatment.
“Haemodialysis is only a burden if we view it as such. It has saved my life and I want to tell new patients this and answer any questions they may have, so that they can learn from my experience,” he said.
The Patient Support Group also offers counseling sessions, social and recreational activities and referral services.
Those wishing to know more about the Patient Support Group can contact NKF’s Senior Welfare Officer, Maniam Raman Chettiar, at Tel: 03 79549048 / 9049 / 9186 or fax: 03 7957 7328.
Enquiries can also be emailed to welfare@nkf.org.my
For Muhammed Shahrul Nizam, 23 years, it came as a shock to be diagnosed with kidney problems, coming from a small ‘kampung’ in Sabak Bernam, Selangor. What Shahrul failed to realise was the fact that he suffered from repeated urinary infection caused by ‘reflux’ which finally led to kidney failure.
“For the first five years, I was treated for kidney problems and so I had time to come to understand what it was all about. When I was 20, I needed to go for dialysis and since I was studying at University Malaya, Faculty of Education for my Bachelor in Counselling, I took a loan for my studies. My dialysis is sponsored by Baitumal and for pocket money I am part of a music machine with some friends, said Shahrul, with a smile on his face.
Staff nurse Chan Mei Chee, working at the Berjaya-NKF Dialysis Centre described Shahrul as being one of the more lively dialysis patients, bringing cheer to the other older patients when he came in for his dialysis.
“He has a zest for life and when he comes in for dialysis, the other patients would be entertained with his songs and this is important as the mental well-being contributes to better physical health in the long term,” said staff nurse Chan.
With a year to go before graduation, Shahrul works hard at his studies and said that on the days he has dialysis, he does sometimes find it hard to fit in his studies. “If I have classes on the days that I need to go for dialysis, it is hard to juggle the two but I have made arrangements to have my lectures taped as I cannot postpone my dialysis,” shares Shahrul.
Shahrul enjoys his days and has no regrets, “I fill my days with classes and if I am not working, I am playing in a band and with a hectic social life, I have no time to think about dialysis as every day is a bonus for me,” he said.
As a group percussionist, Shahrul enjoys jamming with his friends and from to time plays at weddings and other functions. The other activity which Shahrul enjoys is selling burgers in front of his house at night as he gets to chat with the local neighbourhood friends and establish new social contacts with those who stop their cars to buy his burgers.
As a last thought, Shahrul hopes he gets to fulfill his ambition of being a teacher as he enjoys interaction and feels he has a wealth of experiences to pass on.
For Chuah Seong Ban, 34 yrs, dialysis is still an activity he is still getting used to. With a family history of kidney problems, Chuah’s father passed away with stones in the kidney and with an elder sister who underwent a kidney transplant, Chuah accepts that he has to plan for his future.
Currently, he works as an electrical engineer and spoke of the support given by his firm. “My firm pays for my dialysis and understands that it is three times a week and I am allowed the time off from my office to attend the dialysis. Having started off work in the engineering firm and being active in
sports, it came as an initial shock to Chuah when his lifestyle changed to adapt to his dialysis thrice weekly.
As one of the pioneers of the office Sports Club, Chuah passed on the leadership to other colleagues.
“These days I play games thrice weekly, badminton, basketball and jog as well,” said Chuah.
What Chuah feels puzzled about is the sudden onset of the disease with no symptoms.
“At first I just started feeling uncomfortable, then I could not sleep at night and finally when I returned to my hometown, I experienced immediate failure of my kidneys to function and had to be dialysed almost immediately,” added Chuah, something he was quite unprepared for.
These days, Chuah does not feel different anymore, he has taken things in a stride. His days are filled with activities and says family support is important as his mother cooks for him most days and he minimises his nights out to focus on sports.
For most housewives, getting up and going about to complete their daily chores and activities would not be an unusual activity. But for Thangachiammah M. Muthoo, 50 years, every day is a bonus and she looks forward to being with her grandchild, whom she babysits everyday.
Having had her children in her twenties, Thangachiammah is a lucky grandmother who cooks daily for her four children, who stay with her at their DBKL flat. For her she accepts the fact that being a diabetic she has to lead a fairly active life. Well-spoken in English, she went to Convent School, having being educated in Setapak and married at an early age.
For many years Thangachiammah was unaware she had diabetes, till her swollen hand and feet, plus the feeling of being faint made her consult a doctor.
“In those days, people were not as educated as they are now about kidney disease and diabetes. Now, all the information is available and if I had know earlier about my diabetes, I would have taken more care,” she said.
Having being a diabetic for 13 years, it has taken a toll on her kidneys but she says she has learnt to accept that she has to take care of herself and be independent.
With her grandchild happily running around, one would think of Thangachiammah as a dialysis patient but in truth she makes every effort to fill her days with her family and as she said their support was vital to her well-being as a dialysis patient.
In return, she makes herself as independent as possible, making her way to the dialysis centre thrice weekly, while cooking meals daily and keeping the apartment clean.
“I thank God that I am not an invalid and am able to be of help to my family,” she said, busily preparing the dinner for her children and grandchild.
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