According to studies by the Institute for Health Metrics and Evaluation, the average prevalence of CKD in women is 14% as opposed to 12% in men. Interestingly, researchers also found that men were likely to go on dialysis earlier in the course of their illness compared to women, for reasons that aren’t fully known.
Hospital Serdang Nephrology Department head and senior consultant nephrologist Prof Dr Goh Bak Leong, who is also the president of the Malaysian Society of Nephrology, says that there could be a variety of reasons for this, including uneven access to healthcare for women in some countries.
“While the reason is unclear why this illness affects men and women differently, it is something that has consistently been observed across the world, in both developed and developing countries,” he says.
Such gaps in treatment and care are part of what organisations like the National Kidney Foundation (NKF) hope to address as part of its ongoing mission.
Zaedah Jali, 57, has been undergoing dialysis treatments at NKF for the past 20 years now. Having been diagnosed with two failed kidneys at just 37, she was forced to turn to NKF after being rejected as a potential candidate for a kidney transplant.
The former factory worker now spends her days resting at home and thanking the Almighty for a fairly blissful life, as her children are all grown up and independent.
Melini Ismail’s story is slightly different. Having completed her professional ACCA in Britain, Malini landed a job in a German firm, and later, TV3, as an accountant. Then in 2012, a blood test revealed that her kidneys were not functioning the way they should.
By then she already knew she had diabetes and hypertension, but was unable to proceed with the dialysis due to her work commitments.
Despite being someone who loves to travel and enjoys food, Melini has been forced to cut back on these activities since being diagnosed with CKD and commencing dialysis treatments with NKF.
“I once had a scare when I indulged in some nasi dagang and was admitted to the hospital for two days! I have since started making more effort to cook and eat healthier foods,” she shares.
“The only issue I face is that when I travel I need to find areas that have dialysis centres and book my sessions in advance, and this can be cumbersome, especially overseas. So I have cut back on travelling tremendously, with the exception of travelling back to my hometown in Kota Bahru, which has an NKF branch,” she says.
Former assistant nurse Zaliha Sis, who has been undergoing dialysis since 1978, is grateful for the assistance provided by NKF in enabling her to enjoy a better quality of life since her diagnosis.
“I had the opportunity to receive a kidney from my mum in 1979, but after the surgery, my body rejected it. So I went back to dialysis and am not looking for another donor kidney,” she said, adding that her family and her husband’s family have always taken good care of her and supported her throughout her treatments.
Former factory worker Chuy Oi Lan, 63, was diagnosed with kidney failure in 1993 and has been undergoing dialysis treatment with NKF since 2012. She also receives funding from the Social Security Organisation (Socso) for her dialysis costs.
Aside from being an end-stage renal disease (ESRD) patient, Chuy is also a breast cancer survivor. “You should never give up hope no matter how hard life is, because your family and friends will always have your back,” she said.
Patients like 40-year-old Shela Devi continue to benefit from haemodialysis treatments at NKF, as her family is not well-off. Although she is registered as a recipient for a donor kidney, she has not yet received any good news.
With no transplant in sight, she is thankful to NKF for prolonging her health and life so that she can see all her children grow up and eventually have their own families.
“I am glad that I am receiving the best possible care from NKF, whose staff members treat all patients with professionalism and take the trouble to lend their ears for us to confide in. Many of our concerns have been eased, and I have also benefited from a friendly and family-like atmosphere at the centre,” she says.
These women are proof that while CKD is a debilitating disease and dialysis treatments are physically and financially draining, a decent quality of life is still possible with the right treatment.
According to Prof Goh, there are a number of steps that can be taken to prevent the advance or onset of kidney disease. These include consistent screening for kidney disease and adequately controlling blood pressure and blood sugar.
“Perhaps women need to take better care of themselves and be more proactive in seeking out treatments once they are diagnosed with the illness. I think oftentimes women may tend to delay their treatment due to commitments to the family and their role as a caregiver, or fear that their lifestyle could be affected as a result of the treatment,” he says.
“But this is far from the truth. If anything, the countless women who are being treated at NKF prove that it is possible to lead a good life and enjoy better quality of life once you seek the relevant treatment.”
It is possible to lead a good quality of life with kidney dialysis. Photo: Reuters
Risk factors for age-related kidney disease
Some conditions that affect the kidneys are more common as people get older. You are more at risk of developing kidney disease if you:
• Are over 60 years of age
• Have diabetes
• Are obese
• Have high blood pressure
• Have established heart problems (heart failure or past heart attack) or have had a stroke
• Are a smoker
• Have a family history of kidney failure
• Have a history of acute kidney injury
There are a number of things you can do to keep your kidneys healthy, including:
• If you have diabetes, make sure that your blood sugar control is excellent. Follow your doctor’s advice about insulin injections, medicines, diet, physical activity and monitoring your blood sugar.
• Control high blood pressure. Have your blood pressure checked regularly. Drugs used to lower blood pressure (anti-hypertensive drugs), such as ACE inhibitors or angiotensin blockers, can slow the development of kidney disease.
• If you have one of the risk factors for kidney disease, have a kidney health check (blood test, urine test and blood pressure check) at least every year (more frequent if you have diabetes or high blood pressure).
• Treat urinary tract infections immediately.
• Control blood cholesterol levels with diet and medications if necessary.
• Drink adequate water and choose foods that are low in sugar, fat and salt, but high in fibre. Stick to moderate serving sizes.
• Do not smoke.
• Drink alcohol in moderation.
• Stay at a healthy weight for your height and age.
• Try to exercise moderately for at least 30 minutes a day.
This article is by NKF. For more information or to donate, visit www.nkf.org.my or call 03-79549048.
Imagine having to be dependent on a machine to live – two needles inserted into your arm and connected to the machine, drawing your blood out before returning it, for four hours at a time, three times a week, without fail.
This is the life of someone with end-stage renal failure (ESRF), where their kidneys are so destroyed that they can only function at 10%-15% capacity.
The kidneys – those two bean-shaped, fist-sized organs that rest against the back of our abdomen on either side of our spine – are responsible for filtering our blood to get rid of toxins, waste and extra fluid.
They also help to keep our body’s electrolytes, like sodium and potassium, within a certain functional range, and produce hormones that help regulate our blood pressure, make red blood cells and keep our bones strong.
For someone with ESRF, going without dialysis, which helps filters the blood in replacement of the kidneys, means a life expectancy of merely weeks.
The troubling thing in Malaysia is that, like many other non-communicable conditions, the number of ESRF patients is on the rise.
According to consultant nephrologist Dr Thiruventhiran Thilaganathan, there are currently around 50,000 patients on dialysis.
“The latest statistics show that there are about 7,000 new patients entering the dialysis programme on a yearly basis. This represents a 10%-15% growth.
“So, it is projected that by 2020, the total number of patients will be close to 100,000,” he says.
The main factor influencing this upward trend is the increasing number of diabetes patients in the country.
“The number one cause of kidney disease requiring dialysis in Malaysia now is diabetes.
“And unfortunately, we are world leaders as far as diabetes-related kidney failure is concerned.
“In fact, 61% of all patients with ESRF in Malaysia is due to diabetes, which is a very large number and is one of the highest in the world at the moment,” he says.
Dr Thiruventhiran, who is also the vice-chairman of the National Kidney Foundation (NKF) of Malaysia’s board of directors, notes that one in five patients with diabetes will end up with kidney disease, also known as diabetic nephropathy.
Dr Thiruventhiran says that there is such a high demand for dialysis nurses that NKF has 200 nurses on the waiting list for their PBHD programme.
Out of this 20% of diabetic patients, 15% will go on to develop ESRF and end up on dialysis, “if they live long enough”, he says.
This is as diabetes is a disease with many complications that can result in death before ESRF sets in.
Considering that the latest National Health and Morbidity Survey (NHMS) 2015 estimated that 3.5 million Malaysians are diabetic, this means that there are 105,000 current and potential dialysis patients out there.
And this does not include those patients who have to go on dialysis due to complications from high blood pressure (18%), systemic lupus erythematosus (SLE) or glomerulonephritis (3%), obstructive nephropathy (1%), and other or unknown causes (17%), according to the 23rd Report of the Malaysian Dialysis and Transplant Registry 2015.
Catching it early
The problem with kidney failure is that the signs and symptoms of the problem during the early stages are very easy to miss.
Says Dr Thiruventhiran: “As far as renal failure is concerned, the disease is very insidious – it’s a very slowly-progressing disease.
“Unfortunately, the early signs are usually missed by the patient.
“Early signs of kidney disease would include swelling of the legs, a lot of foam in the urine and a sudden increase in blood pressure from the normal.”
As these symptoms can be quite mild, most people tend to dismiss them until their kidneys have deteriorated significantly, he explains.
“Most patients only start picking it up when the blood starts getting ‘dirty’,” he says, adding that chronic kidney disease (CKD) can be divided into five stages.
“Unfortunately, in stage one and stage two, there are usually no symptoms. Lots of patients are missed in these early stages.
“By the time they go on to stage three, that’s when the blood test starts becoming abnormal, and that’s when most patients are picked up because they go for routine blood tests and discover that something’s wrong.
“But you can see that by the time they are in stage three, they are halfway through the disease.
“Then they go on to stage four, and stage five is when they need dialysis.”
Because of this, a major part of NKF Malaysia’s activities is focused on education and awareness, which includes health screening.
“The idea is to catch them as early as possible, at stage one of the disease,” he says.
Although the disease has already set in during stages one and two of CKD, Dr Thiruventhiran shares that the kidney has such a large reserve that it can lose up to half of its functional ability before there are any signs and symptoms.
While normal screening tests will not pick up CKD in these early stages, a specific test called urine microalbumin, which looks for small amounts of a protein called albumin in the urine, can do so.
This is the test NKF Malaysia uses in its screening programme for the general public, which started in 2005.
“What we do is we perform urine tests, blood tests and physical examinations, and we have a screening team that goes out and does all this,” he says, adding that they have screened over 463,000 people to date.
Those with abnormal results are then referred to their nearest convenient healthcare facility for further investigation and management.
Dr Thiruventhiran notes that they spend about RM1mil a year on this programme, which is free for the public, with five full-time mobile screening teams based in Kuala Lumpur, Alor Setar, Kota Bahru, Batu Pahat and Kuching.
As dialysis, specifically haemodialysis, requires a special machine and involves blood, it needs to be done in a specialised centre with the appropriate healthcare personnel in attendance.
A clinical instructor explaining how to clean a dialyser with a dialyser reprocessing machine during practical training for the PBHD programme.
According to the Health Ministry’s Haemodialysis Quality and Standards guideline, the person-in-charge of the dialysis centre must either be a certified nephrologist or a doctor with 200 or more hours of recognised training in haemodialysis treatment and a continued affiliation with a nephrologist.
In addition, there must be at least one registered nurse or medical assistant with at least six months of relevant training for every six dialysis patients in the centre during each shift.
And at least one nurse or medical assistant present during each shift must be trained in cardiopulmonary resuscitation (CPR) techniques.
Dr Thiruventhiran explains that as the doctor is usually not onsite, they rely on nurses to carry out the dialysis treatment for the patients and monitor them during the process.
He says: “In 1998, when the Private Healthcare Facilities and Services Act was introduced by the Government, there was then a need for dialysis centres to have what we call credentialed nurses – nurses who have undergone their basic nursing programme, and subsequently, have a post-basic training in dialysis so that they are specialised to carry out dialysis treatment.
“Now, this was implemented in 2006, and once it was implemented, it became mandatory for all dialysis centres in Malaysia to have dialysis units that are equipped and manned by fully-trained dialysis nurses.
“So this created a huge demand for nurses to be trained in dialysis.”
According to Deputy Health Minister Datuk Seri Dr Hilmi Yahaya, three-quarters of dialysis patients are treated at centres run by either non-governmental organisations (NGOs) or private companies.
This created an explosion in demand for post-basic haemodialysis nurse training courses recognised by the Health Ministry, including the one run by NKF.
Dr Thiruventhiran explains that the NGO started the six-month course, called the Post-Basic Haemodialysis (PBHD) Nursing Programme, in 2005 when NKF was setting up its own dialysis centres around the country.
“It started off as an in-house programme to train our own nurses, but because of this need from other centres, they started applying to come to us to train.To date, we have 200 nurses on our waiting list to enter our programme.”
Each intake, which occurs twice a year, currently has 20 places, three-quarters of which are open to non-NKF nurses.
The limiting factor on the number of students, Dr Thiruventhiran says, is the number of trained tutors and clinical instructors they are able to find and retain.
Each tutor or instructor must have a basic degree in their field, as well as a certification in teaching methodology.
Due to the demand for the course, the organisation decided to seek accreditation from the Malaysian Qualifications Agency (MQA), which it received effective from last July 31.
Although there are other organisations offering similar courses, Dr Thiruventhiran says that they are among the cheapest as they are a non-profit organisation.
NKF also offers a three-month course for dialysis assistants, who are usually trained non-medical personnel in the centre.
Their responsibilities include cleaning the dialysis machines, reprocessing equipment, keeping the centre clean and clerical work.