Understanding the best, suitable dialysis option for you

Practicing as a kidney specialist (also known as nephrologist) has many challenges. Every single day we see deaths and many complications of chronic kidney disease.

We observe sufferings from all aspects – physical, emotional, spiritual, psychological. Largely, this arose from delay in planning for treatment.

Chronic kidney disease is reported in 15.5 per cent of Malaysian population and patients remain relatively well without any ailments or feeling ill until it reaches the last stage (Stage 5).

The stages of kidney disease are classified by the percentage of remaining kidney function, with five stages all together (Stage 1-5).

The definition of chronic kidney disease is when estimated glomerular filtration rate reaches less than 60 mL/min/1.73m² – in layman terms, we usually refer it as less than 60%.

This can be calculated from your blood test results and many laboratories now gives an automatic result.

One needs to have two blood test results of at least three months apart to qualify as having chronic kidney disease.

When kidney function reaches 15 per cent, defined as Stage 5 of chronic kidney disease – this is when preparation of long-term treatment must commence.

In clinical terms, doctors often refer the treatment as "renal replacement therapy”.

Renal is kidney and once both kidneys are poorly functioning, their responsibilities need to be taken over or replaced by other means.

My colleague from Sabah, Dr Wong Koh Wei reported 74.3 per cent of patients started dialysis therapy without preparation (article published in Medical Journal Malaysia in 2017).

These group of patients demonstrated a worse outcome; higher deaths at the end of first year.

Preparation of treatment upon reaching stage 5 of chronic kidney disease is by no means easy.

It needs full family support and in-depth understanding of various available treatment options.

Decisions need to be performed together with the doctors, patients, and their families.

Many times, in our practice, patients refuse to talk about dialysis and wants to delay making decisions until it is too late.

This delay is likely detrimental – may end up patients needing emergency treatment in the odd hours of the day rather than having planned procedures.

These are procedures which carries high risk of complications. If there is considerable delay, patients may become unstable; they will not be able to commence dialysis at this juncture and death may ensue.

The above are reasons why it is extremely important to make plans and preparations earlier and not leave it at the very last minute.

When the doctors broach the subject of dialysis in a routine clinic appointment, we do not expect it done immediately.

Preparation for dialysis include understanding which option best suites you, your family, and your lifestyle, planning for work-up if transplantation, application for various funding for dialysis therapy (this could take many months) and preparing an access for dialysis procedure (for example insertion of dialysis tube for peritoneal dialysis and fistula creation for hemodialysis).

We always hope our patients allow us to walk the journey together. Make the decisions together with us.

During this critical period of discussions, our patients may leave the clinic under the impression that we are forcing them to perform dialysis.

In all honesty, we will respect all the decisions that the patient make.

However, we hoped in the process of making these important decisions, patients and the families obtain all the knowledge and information from trusted sources.

Time and time again, we are faced with patients who refuse to even start the discussion and only come back to us when it is too late.

This is not an uncommon scenario that kidney specialists face daily.

Patients tend to believe product sellers who promises cure; something science cannot guarantee because chronic kidney disease is not reversible at this stage.

Understandably, the patients may make choices out of desperations.

All these products in the market are basically hoax at least three reasons.

Firstly, sellers cannot advertise or even mention kidney disease as this is against regulations (Akta Iklan dan Ubat 1956).

Secondly, products are not advisable in chronic kidney as they may cause more harm. Thirdly, these are not scientifically proven, and testimonies cannot be used as guide.

Please stay away from these products.

Even if you feel it came from a credible source, do discuss with your managing doctors before consuming it.

Trust us, because we want only the best for you! The discussion upon reaching Stage 5 include availabilities of different treatment modality.

There are 4 different options of treatment: transplantation, peritoneal dialysis, haemodialysis and comprehensive conservative care (non-dialysis therapy).

The best treatment option is kidney transplantation. However, there are many criteria to be able to receive a kidney transplant or become a donor.

The best kidney is from a living donor, who must undergo many different tests before he/she is allowed to donate.

Please discuss about this at length with the doctors who look after you.

If transplant option is not available or not yet adequately planned, dialysis must be performed.

Many people have only heard of hemodialysis, which is three times per week and four hours per treatment. It is done only in hemodialysis centres and healthcare facilities.

The better dialysis option – peritoneal dialysis is less chosen and less known in this country.

This modality is by far a much better option as first dialysis therapy.

It has many advantages include preserving residual renal function (maintains urine volume), better quality of life, less risk of infection including covid19, gentler to the heart and many more. It is a more flexible option of dialysis to suite an active lifestyle including easier overseas travel arrangements.

Peritoneal dialysis can be Continuous Ambulatory Peritoneal Dialysis (CAPD) and Automated Peritoneal Dialysis (using machine at night).

It basically uses our stomach/abdominal lining (called peritoneum) as a filter of toxins which is not removed by failed kidneys.

A tube called Tenckhoff is inserted and placed in the abdominal wall. A special fluid is instilled via the tube into the abdomen and left there for 4-6 hours.

The tube is used to drain this special fluid in and out. This process is called PD exchanges.

When the fluid is drained out, it will contain toxins that was filtered by the abdominal lining (peritoneum). CAPD exchanges is four times a day and each time lasts approximately 20-30 minutes.

In between CAPD exchanges, patients are mobile and is free to perform their activities including going to work.

Not all patients are suitable to undergo kidney transplantation or dialysis therapy.

These group of patients include elderly, multiple co-morbidities, advanced other underlying disease (such as cancer) and many more.

Comprehensive conservative care is treatment of their ailments using medications and patients are managed without dialysis therapy.

This may need combined management with palliative care specialists and involve multi-disciplinary team members.

Whichever option you choose, make shared decisions together with your doctors and family.

Treatment of chronic kidney disease is a long journey and options of therapy are interchangeable.

As a family and/or caregiver, everyone involved must be aware of many challenges and poorer outcome compared to general population.

Dialysis is not without problems and complications. Only approximately half of diabetic patients surpass the five years of dialysis vintage and if they do, the complications will start piling in.

Every journey is a rollercoaster ride, at times very painful and extremely challenging. Despite knowing the consequences, losing a family member from this disease will never be easy. Do cherish your time with your loved ones.

MedTweetMY, National Kidney Foundation, Baxter Healthcare Malaysia and Astra Zeneca (supported by Ministry of Health Malaysia and Malaysian Society of Nephrology) have joined forces to develop a module for patients and their families to make pre-dialysis preparations.

This module is incorporated into www.mybuahpinggang.com and the portal can be accessed directly using http://PDEPPortal.MYBuahPinggang.com.

This is designed for Stage 4 and 5 patients and to access, a simple registration is needed.

You will need to know your creatinine (one of the reading for kidney blood test) results to allow registration into the programme.

This programme is free, and I encourage all patients and their families who are facing Stage 4 and 5 chronic kidney disease to access this module.

This will help them to fully understand the treatment options, what lies ahead and make the best possible decisions.

This will make the journey less of a rollercoaster ride with better preparations psychologically, emotionally, and physically.

I have recently lost my own mother who was on dialysis for seven years. I have witnessed many sufferings not only professionally; but personally. I will continue to educate the public on kidney disease.

Dr Rafidah Abdullah is a consultant physician and nephrologist at Hospital Putrajaya. She is also a columnist with Sinar Daily.