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.