GIVING HOPE AGAINST A SILENT KILLER

~The potential for organ donation is great, yet the response dismal~

Chronic kidney disease (CKD) is known as the silent killer that strikes 9 out of every 100 Malaysians. That means as many as 2.9 million Malaysians may suffer from CKD, which is primarily caused by either diabetes or high blood pressure. Not entirely surprising seeing that the Ministry of Health (MOH) reported earlier this year that 3.6 million Malaysians are diagnosed with diabetes. CKD is an irreversible disease primarily treated through dialysis. More than 39,000 patients hooked up to dialysis machines nationwide, with the country recording 7,000 new patients annually.

According to the Ministry of Health’s National Transplant Resource Centre, as of June 2019, 20,044 CKD patients remain on the waiting list for kidney transplants, and the waiting time for a deceased donor kidney is between 8 and 10 years here in Malaysia due to lack of kidney donors among members of the public.

And just when you think the numbers are staggering, statistics reveal that only 2,047 kidney transplants have taken place successfully since 1976. As of October 2019, while 1.3% (432,215) of the country’s population are registered as organ donors, MOH recently revealed that in as many as 80% of cases handled, donors were faced with opposition from family members. As a result, annually, only 20 to 30 people donate their organs upon receiving approval from their family members.

Family – the beacon of hope

While the situation appears somewhat bleak, Lord Scott’s story offers a glimmer of hope for those battling CKD. After battling the disease for almost a decade, in September 2018 he became the proud recipient of a kidney from his brother through a kidney transplant surgery.

The adage: “Family is the anchor that holds you through life’s storms” holds true for the Scott family.

Thanks to the courage of his brother, the 35 year old has been on a new lease of life for one year now. Lord was in the prime of his life at 25, working as a sales manager in the logistics industry when he was diagnosed with CKD rendering him dependent on dialysis treatment for nine years.

“Being diagnosed with kidney failure at the age of 25 was like a death sentence to me. From the very moment my doctor told me that I had ‘missed the boat’ and had to be on long term haemodialysis, I felt like my whole world was just crumbling”.

As the youngest patient at the centre he frequented for treatment, Lord soon faced depression.

“Where my friends were out living life, I was being hooked up to a machine. My days were spent at the dialysis centre for up to 4 hours, 3 times a week,” Lord said, adding that as the years passed, and due to a weakening body from the side effects of prolonged hours of dialysis treatment, he eventually lost his job as well.

“I also wasn’t able to hold down a fulltime job as the treatment drains you out physically and mentally. Your whole day is spent recuperating and sometimes that carries on onto the next day,” he said. Furthermore, his savings were fast depleting since treatment at private centres are costly.

“There were days that I just did not get out of bed on my treatment days as I hated walking into the centre and knowing that I have to get my arms pricked (by needles),” he said.

Born in to a large family of 11 siblings, hope was not lost for Lord. Though initially reluctant to approach his siblings on this seemingly thorny matter of appealing for an organ donor, he plucked up the courage to do so after being persuaded by a friend and a fellow transplant survivor.

“I gathered the courage to invite a few of my siblings for the all-important meeting to meet the transplant team at Hospital Kuala Lumpur and finally one of my brothers agreed to be tested first,” he said. “I am immensely blessed that he successfully went through the whole process and here I am a year since the transplant,” said Lord, who no longer requires dialysis.

He admitted that initially, transplant was his last option as he was under the impression that one had to consume lots of medication to keep the new kidney from failing. The extremely long waiting list was also a deterrent as he believed one would have to wait at least 10 years before being considered for transplantation.

“The transplant has given me a second lease of life and I am extremely grateful to all who have made it possible – especially my brother. I can now have a full-time job, attend weekend sports management classes and go for long holidays,” said Lord who is currently employed as the Regional Marketing Manager of Football Focus Asia.

He expressed hope that the Malaysian government will work closely on introducing the opt-out policy for organ donation in Malaysia, as practised in Singapore and other countries. Malaysia’s current opt-in system requires citizens to register to be organ donors, while the opt-out system presupposes everyone is a registered organ donor, unless the donor/guardian has requested to be delisted from the registry of donors.

Reaching the masses

Lord also said more should be done in terms of educating the public on kidney care to prevent kidney failure, with the aim of eventually reducing the numbers on the organ waiting list.

One of NKF’s current nationwide efforts to promote healthy living amongst Malaysians as well as educate the public on organ donation and organ transplantation is the three-month long social media campaign called #GreenWednesday which ends in December 2019. Aside from sharing testimonies, NKF is using Facebook and Instagram to feature random trivia on organ transplantation and donation.

Another on-going initiative is the “Community Organ Donation Drive (CODE): Life - A Forum on Living Renal Transplantation” programme series which is an experience-sharing platform created for dialysis patients and caregivers to take care of their wellbeing, as well as educating them on living renal transplantation. Since it was launched in November 2018, numerous sessions have been held to promote the cause and further identify barriers that affect those who are uncertain or unaware of the concept of organ donation.

For more information on these and future NKF activities or to donate towards the organisation’s efforts, please visit http://www.nkf.org.my or call 03-7954 9048.

National Kidney Foundation of Malaysia

The National Kidney Foundation (NKF) Malaysia is a non-profit charitable organization dedicated to helping Malaysians suffering from end stage kidney failure who lack access to or cannot afford dialysis treatment. NKF currently has over 1,700 dialysis patients receiving subsidized dialysis treatment in over 28 dialysis centres nationwide.