Meet Nur Aniza binti Kamari, a 50-year old end stage renal failure patient at the National Kidney Foundation (NKF). Aniza has been on dialysis for the past two-plus years and this is only the start of her long and continual journey for the rest of her days.
Renal failure or kidney failure occurs at the very last stages of Chronic Kidney Disease (CKD). The condition is often the result of diabetes and high blood pressure.
Aniza has been having diabetes and high blood pressure for over a decade now although she was not aware of her condition until after the birth of her first child who is now 11 years old. She only suspected she had diabetes when her child was about three months old as her urine didn’t look clear and she was experiencing symptoms such as sudden weight loss, appetite loss and headaches. She did not check but went on to have a second child who is now nine years of age.
Aniza Recounts What Happened
It was only after the delivery of her second child when her constant thirst and extreme fatique compelled her to visit the government clinic in Cheras for a blood test. There, it was discovered that she had sky-rocketing blood sugar levels and that she had diabetes Type 1. By this time, the disease had deteriorated to a critical level. Aniza was then given insulin in an attempt to arrest the progress of the disease. She thus self-administered the injections three times a day.
Aniza kept up with the treatments and did regular blood tests but soon it became apparent that her body was not responding to the insulin. She was then given a Kidney Number Test.
Too Little Too Late
The Kidney Number Test or Glomerular Filtration Rate (GFR) as it is better known, is where blood is measured for creatinine. Aniza’s GFR showed that she was at Stage 5 ─ the end stage where the kidneys were no longer functioning. Aniza was then referred to Hospital Kuala Lumpur (HKL) in 2016 where she was started on haemodialysis and given supplementary medicines to regulate her condition.
“The treatments were not free,” she said, “we bore all the medicine costs ourselves and had to ask for help from the family to pitch in.”
Aniza was going for four-hourly dialysis treatments three times a week. She cannot remember the actual cost but said each session cost her a lot as medicine alone, excluding the dialysis, was RM30 each time. Adding in the dialysis fee, the bill would average RM100-plus per session. When multiplied by three sessions a week and four weeks per month, the cost would average RM1200 a month.
“I could not afford to keep up with these payments,” said Aniza, adding that dialysis treatments had to be continued on its scheduled four-hourly basis three times a week for the rest of her life. There is no cure for the kidneys once they fail and dialysis has to be kept up in order to stay alive.
Aniza was having treatments at HKL for seven months but with the cost mounting to an unbearable amount, she decided to apply to the NKF for subsidised treatments.
The National Kidney Foundation (NKF)
[dropcap letter=”T”]he NKF is a non-profit charity organisation set up as far back as 1969 to provide care to kidney failure patients and those suffering from various kidney-related diseases. Over the years, the NKF has expanded its role from being just a dialysis treatment provider, to becoming a one-stop national resource centre for all kidney-related matters, including taking care of the welfare of patients.
The NKF Welfare Department, for example, takes care of the physical, emotional, psychological, social and financial well-being of patients through its various programmes. They also counsel patients and their families, perform financial assessment of new applicants for admission into the NKF and process applications for NKF subsidies from NKF patients.
Because NKF’s patients are generally from the lower income group who cannot afford private dialysis treatments which usually charge RM150 to RM250 for each dialysis session, NKF helps by subsidising these costs so that patients are only required to pay a RM50 nominal fee per dialysis session. Sometimes, some patients qualify for full subsidy. This means, they pay nothing at all, as in the case for Aniza.
Aniza was a government clerk before she got married and this has helped her qualify for full medical assistance from SOCSO. However, not every dialysis patient is as fortunate as Aniza.
A Talk With Dr K Sivashanker, Head of Medical Dept, NKF
“There are many types of kidney diseases. But what we at NKF is basically focused on, is Chronic Kidney Disease or CKD,” said Dr Sivashanker.
Kidney disease, he continued, can be classified as Acute Kidney Disease or Chronic Kidney Disease. Acute Kidney Disease can happen suddenly due to blood loss after an accident, for example, where the organs are depleted of blood and shut down. It can also be due to kidney stones blocking the urine flow out of the body causing the kidney to swell or poisoning such as snake bites and so on. Acute Kidney Disease is usually reversible if the cause of the problem is removed on time.
Chronic Kidney Disease (CKD) on the other hand progresses more slowly, he explained.
“If you are a diabetic, the progression will take its time. It depends on what type of diabetes you have. If you have Type 2 then you take oral medication to control the diabetes, or if you have Type 1, then you will be on insulin. For Type 1, the kidney tends to deteriorate much faster.
“The number one cause of CKD is diabetes. If you look at all our dialysis patients, between 60% to 65% is because of diabetes. The number two cause is hypertension. Number three is Systemic Lupus Erythematosus (SLE), an autoimmune disease that attacks the kidneys, brain, joints and other organs. Number four is medication. Some drugs are toxic to the kidney. Women are more prone to it because of taking non-steroidal anti-inflammatory drugs (NSAID) known as pain killers for relieving regular pains such as menstrual cramps. Over the long run, these drugs can become toxic. Other common causes of kidney disease are family history and obesity.”
Signs and Symptoms of CKD
Dr Sivashanker said kidney disease is often called a Silent Killer because it doesn’t show obvious symptoms until it is too late. But one can still detect it if one is observant. Here are some of the first noticeable signs of CKD:
“This is a vicious cycle,” said Dr Sivashanker referring to the role of the RAS. “You have kidney problems because of high blood pressure and now because the kidneys stop controlling blood pressure, the blood vessels build up with accumulated fluids and raise blood pressure even more.”
Staging the Disease using GFR
“Normally in CKD, we find out what stage you are in ─ whether you are in Stage 1, 2, 3, 4 or 5,” he explained. “How we find out the stages is by measuring the GFR through a blood test. GFR in simple terms measures how much urine your kidney is producing and how much blood is actually flowing through the kidney. The normal GFR for a healthy person is about 120 to 125. If you have a GFR of 90 to 100, you are in Stage 1. Anything below 15 is Stage 5.”
Starting Dialysis
Generally speaking, there are two types of dialysis: Haemodialysis and Peritoneal Dialysis. Both serve to perform part of the function of the kidneys such as remove toxins, excess fluids and harmful substances from the blood.
Blood is passed through tubes and filtered via a dialyser in a dialysis machine. The patient visits a hemodialysis centre three times a week, four hours each session, to receive this treatment.
This is daily treatment that can be done at home. A tube-like structure called a Tenckoff catheter is attached to the abdomen. The patient channels the blood-cleansing solution called dialysate through the catheter into the peritoneal cavity.
“Normally, dialysis is started at Stage 5 when the GFR is very low. Before we begin, some treatment are begun much earlier such as giving erythropoietin (EPO) injections to regulate the production of red blood cells. Dialysis only regulates water and electrolytes and removes toxins from the blood, it will not give you the hormones that you need,” said Dr Sivashanker.
Prevention is Key as there is No Cure
“So get yourself screened for early detection,” advised Dr Sivashanker, saying that the earlier you find out, the simpler it will be to manage. CKD can get very complicated and management becomes harder if discovered at a very late stage.
“Your haemoglobin would have dropped very low, there would be itchiness to handle, your blood pressure would shoot up alongside rising calcium and potassium levels.”
Of course, the best way is always to prevent ─ it is the only way because there is no cure. “Control your diabetes, manage your hypertension” he said, “and make the effort to make a lifestyle change.”