As far as organ failure goes, those whose kidneys have quit working are fortunate as dialysis can replace the function of the kidneys.
However, it is a lifelong treatment for patients with end-stage kidney failure, requiring the majority to visit a haemodialysis centre three times a week for three to five hours each time to receive the treatment.
Others may opt for peritoneal dialysis, which is done on a daily basis for one to two hours by the patient themselves.
While patients can live a relatively normal life on dialysis, it is not the best solution to their condition.
Ideally, they should receive an actual kidney via transplantation from a living or dead donor, to replace their own.
Says consultant nephrologist Datuk Dr Tan Si Yen: “A transplant is a better form of treatment in terms of survival and quality of life.”
For example, according to the latest Report of the Malaysian Dialysis and Transplantation Registry in 2016, the 10-year survival rate for kidney transplant patients is 71%, compared to 27% for dialysis.
It also notes that there were nearly 40,000 patients on dialysis as of Dec 31, 2016.
Of these, Dr Tan, who heads the nephrology and renal transplant services in a private hospital in Kuala Lumpur, believes that the majority are medically fit for transplant.
However, according to the Report, while the number of patients on dialysis has been increasing steadily from 17,097 in 2007 to 39,711 in 2016, the number of kidney transplants has remained about the same.
In the decade between 2007 and 2016, the number of new kidney transplants ranged from 82 (2016) to 141 (2009). This includes those who went overseas to countries like China and India for their procedures.
Comments Dr Tan: “Our transplant programme here is so weak that the patients have no choice but to go overseas, and I would think about half go overseas.
“They either have no relatives who can donate, or if they have relatives, they’re not suitable – they don’t pass all the tests.”
He notes that in Malaysia, kidney donations are only allowed from relatives or anonymous brain-dead organ donors (also known as cadaveric donors).
“The cadaveric transplant rate is very low – we sometimes don’t even talk about it because it’s almost non-existent (only nine people, or 11%, received a cadaveric kidney in 2016, although 51, or 47.2%, received one in 2015).
“So, the majority of transplants are living transplants, which means, by default, they are from relatives, because we don’t allow unrelated living donors, except for spouses,” he explains.
However, he adds that one-third of potential living donors are rejected because of blood group incompatibility.
In Malaysia, those in need of a kidney transplant can only receive them from first or second degree relatives (parents, children, siblings, grandparents, grandchildren, aunts, uncles, nieces, nephews, first cousins and half-siblings), spouses or cadaveric sources. Donors who wish to give their kidney to someone unrelated or a relative beyond the second degree need to be evaluated by the Health Ministrys Unrelated Transplant Approval Committee. — Filepic
Dealing with antibodies
All humans have one of four blood types: A, B, AB or O.
These are classified according to the type of antigen expressed on the individual’s red blood cells (RBCs).
You are type A if your RBCs have antigen A; type B if your RBCs have antigen B; type AB if your RBCs have both antigens A and B; and type O if your RBCs have neither antigen A nor B.
Similarly, your immune system will express the antibodies opposite to the RBC antigens that you have, i.e. you will express antibody B if you are type A; antibody A if you are type B; neither antibodies if you are type AB; and both antibodies A and B if you are type O.
This is because antibodies will seek out their compatible antigens – i.e. antibody A and antigen A, or antibody B and antigen B – and destroy the red blood cells.
As organs also express ABO antigens, it is crucial to ensure that the donor does not have antigens that are compatible with the recipient’s antibodies. Otherwise, the antibodies will destroy the donated organ.
However, the last three decades have seen the development of a procedure that enables blood group incompatible, or ABOi, organ transplants, including the kidney.
Having seen one too many cases of potential donors turned away because of blood-group incompatibility in his practice, Dr Tan, in what he describes as “a moment of madness” seven years ago, decided to pioneer ABOi kidney transplants in Malaysia.
Basically, the patient, or kidney recipient, has to undergo a “desensitisation” protocol, where their ABO antibodies are removed.
After a lot of research, adaptation and discussions with foreign colleagues who have preformed the procedure, Dr Tan came up with a protocol that begins with the patient starting on rituximab, which suppresses the activity of the spleen, about a month before the transplant. This as the spleen is an important source of antibodies, he explains.
The critical component of the protocol is plasmapheresis, which is a procedure that removes antibodies from the blood plasma.
The patient undergoes this procedure on alternate days for two weeks prior to the transplant.
At the same time, the patient receives immunosuppressive drugs to help keep their antibody levels down.
“Once the antibodies are low enough to prevent rejection, I have a very short window of opportunity to go in and perform the transplant, otherwise there is a rebound of the antibody levels,” Dr Tan explains, adding that this period is 24 hours.
The transplant itself and the post-operation treatment is similar to a standard kidney transplant.
While the main risk for the procedure – aside from rejection of the new kidney – is that of infection, which is highest during the first three months after the operation, this is similar for regular kidney transplants as those patients also have to take drugs to suppress their immune system.
Dr Tan notes that due to the extra procedures involved, the cost of an ABOi kidney transplant is double that of a regular kidney transplant.
Dr Tan is very proud that their patient survival rate for the ABOi transplant procedure at five years is 100 with 11 cases under their belt to date. — AZMAN GHANI/The Star
Meanwhile, the most important requirement for the donor is that they must be both physically and mentally healthy.
They will be required to go through a series of tests and evaluations to ensure their health status.
Aside from checking their blood type, the donor’s human leukocyte antigens (HLAs) are also compared to the recipient’s.
As HLAs can also trigger an attack by the recipient’s antibodies, the more similar they are between the donor and the recipient, the better the chances of success.
However, Dr Tan notes that this is not as crucial in the ABOi procedure as long as the recipient does not have antibodies against the donor’s HLA antigens.
“If there are HLA antibodies, they can also be removed by plasmapheresis,” he says.
The donor will also be checked for infectious diseases like HIV and hepatitis, certain non-communicable diseases like diabetes, heart disease and cancer, and their kidney function.
In addition, the transplant team will evaluate the donor to ensure that they are mentally healthy and fully aware of the risks and benefits of their decision.
“Once they pass all the tests, they should be okay to lead a normal lifestyle (after the transplant),” says Dr Tan.
“They should be healthy enough to continue working; if they are young, they should be able to start a family; and even if they are old, it should not compromise their longevity – they should continue to progress well.”
To date, Dr Tan and his team have performed 11 ABOi kidney transplants, all successful with all donors and recipients still currently healthy and functioning well.
He notes that the programme was launched and maintained without any funding or technical support from external sources – a feat he is proud of as even in developed countries, only certain medical centres can perform the procedure.
“In addition, our success led to Hospital Kuala Lumpur and University Malaya Medical Centre trying to set up their own ABOi transplant programmes,” he says.
“We hope that by our success, we will be able to help reduce the workload and the expenses of public hospitals, as many patients have insurance or can afford it themselves.
“Because the transplant rate is so low, we hope that our programme will help to contribute to the transplant rate and make it less necessary for patients to go overseas,” he adds.
When Simah Empaling heard her child was gravely ill from kidney failure in 2012, she went on a hunger strike. She badly wanted to see her daughter, Ibi Uding, who was on dialysis.
Simah lives in Kampung Merakai, Serian, a village about 85km from Kuching, Sarawak, while Ibi was then in Kuching.
Alas, none of her other children were willing to take her to the hospital for fear that she might not be able to withstand the pain of seeing Ibi suffer.
So she refused to eat.
Eventually, Simah made the journey and broke down when she saw a pale Ibi in the ward, hooked up to a machine.
Ibi, 56, recalls: “She hugged me and cried, saying she could not allow her child to die before her. She kept asking what she could do to help.
“By then, I was constantly vomiting, urinating blood, giddy, couldn’t eat or drink, and had lost more than 15kg.”
Ibi had been diagnosed with polycystic kidney disease, an inherited disorder in which clusters of cysts develop primarily within the kidneys, causing them to enlarge and lose function over time.
“The symptoms started in 2007 with blood in the urine and a bloated stomach. If I carried heavy objects, I’d have back pain.
“I didn’t think much of it because I had three teenage kids and was busy running a business with my husband.
“I must admit that my diet wasn’t the best either,” says the former PKR Sarawak Wanita chief, who is saluted as the Iban torchbearer in her relentless fight for their rights.
As organ transplants involving non-relatives are not allowed in Malaysia and none of her other relatives were a compatible match, Ibi was in dire straits.
Then Simah offered to donate her kidney.
Initially, the doctors were hesitant as she was 79 then. However, Simah passed all the medical tests necessary for a kidney donor with flying colours.
“Prior to the transplant, my grandmother had never been admitted to hospital except when she delivered her six children.
“Her lifestyle is healthy as she used to plant padi and corn in the kampung.
“She also loves fishing, but we had to stop her because she cannot hear well anymore. We’re afraid she might not be able to hear the motorboats,” relates Ibi’s daughter, Seraphina Shantee, 26.
The adorable Simah chips in while Seraphina translates: “My late husband taught me how to fish, but now my children won’t let me go to the river.
“I used to be a strong rower, but I don’t have the same strength anymore.”
The only hitch was that Simah and Ibi were of different blood types.
Fortunately, consultant nephrologist Datuk Dr Tan Si Yen and his team were able to perform blood group incompatible, or ABOi, kidney transplants – the first in Malaysia to do so.
Thus, Simah became the oldest living kidney donor in South-East Asia.
Following the transplant, the doctors were amazed that Simah’s kidney functioned like it belonged to a 40-year-old.
She was out walking within three days of the operation, while it took Ibi a longer time to recover.
The first 100 days were crucial and Ibi adhered strictly to her doctor’s advice, although she contracted urinary tract infections twice.
It has been six years since the transplant was performed and the duo are doing well. They only have to go for check-ups annually.
Seraphina says: “My grandma has not fallen sick since. She needs assistance to walk and might complain from a bit of joint pain now and then, but that’s it.
“She doesn’t even have scars from the surgery. Her skin has healed so well.”
Simah, 84, lives alone in the village (her son lives next door) and continues to enjoy what life has to offer.
“From young, I eat only fish or chicken, and plenty of vegetables. I cook daily, mop and clean the house. I wake up at 8am and hand wash all my clothes,” she says.
Occasionally, Ibi, who now lives in Kuala Lumpur, will fly her mother over for a holiday.
“But she finds it boring here because we’re all at work. She will go knocking on people’s doors and make conversation with them.
“And because she can only speak Iban, the neighbours think she is a crazy woman and complain to the management!” says Ibi, laughing.
“One time we were in Kuching and I told her to stay downstairs while I went upstairs to take a shower.
“When I came down, I found the gates open, the air-conditioners and all lights switched on!
“She was sitting on the sofa and looking at me innocently. She has a curious nature and will turn on buttons to test what happens.”
Simah flashes me her warmest smile, oblivious to our discussion.
“Grandma is such a loving and caring person,” Seraphina adds.
Choking with emotion, a teary Ibi says: “I don’t know what I would have done without her. She’s proven that it’s never too late to donate a kidney. She’s been amazing… my saviour.”
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.