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Kota Kinabalu: Dialysis patients here are calling on relevant agencies and departments to enhance opportunities and assistance for those living with chronic kidney disease, noting that many remain unaware of the support available to them.

“There are those who can make kuih, who can do handicrafts. They have the skills but do not know how to sell online. The relevant agencies could help them start something small,” said Mohammad Adzhar Awang, 35.

He was among three long-term dialysis patients who spoke to the Daily Express at the Sabah Kidney Foundation’s Hari Raya celebration held recently at a hotel here.

Adzhar, who has lived with a kidney disorder since the age of five and began dialysis in 2015, said younger patients bear a heavier burden, as many struggle to secure employment due to the demands of treatment, which requires three sessions a week, each lasting several hours.

“Companies do not want to hire someone who needs time off three times a week. The young ones, how are they going to live?” he said.

He suggested that relevant agencies consider offering part-time work opportunities at dialysis centres, as well as small business grants for patients with skills to sustain themselves.

Adzhar also highlighted that while aid programmes exist, many patients are unaware of how to access them.

“It is there, but many do not know where to get it. Perhaps the relevant departments can ensure such information reaches those in need,” said Adzhar, who runs a small business and drives himself to the hospital in Likas for treatment.

He also urged families to provide constructive support to kidney patients.

“Do not say, ‘you are sick, you cannot do this or that’. Instead say, ‘come, let me help you, you can do it too’. That is how support should be given, not by discouraging them,” he added.

Mohd Affendy Idris, 37, from Sepanggar, discovered his kidneys had failed at stage five after collapsing from a severe headache in 2018 at the age of 29.

At the time, he had been working long hours as an e-hailing driver and had never undergone a blood pressure check.

“I was young and never thought of checking my blood pressure. My kidney was damaged because of uncontrolled blood pressure,” he said.

Now eight years into dialysis, Affendy is married with a child conceived through in vitro fertilisation at a hospital in Likas. 

He is preparing to climb Mount Kinabalu this May and participate in a half marathon in June.

“I am not giving up on life just yet,” he said, recalling how others had prematurely defined his future after his diagnosis.

“They said once you have kidney disease, maybe you can only live two or three more years. They said after dialysis it would be difficult to have children. Today, I have been on dialysis for eight years and I have a child,” he said, encouraging young people to prioritise regular health screenings.

“Even if you are only 20, go for a check-up once a year. We do not know what illness may begin quietly. If you are already sick, do not miss your treatment. Do not give up,” he added.

Ahmad Shafie Mak, 60, shared that he had donated a kidney to his uncle at the age of 19. He later began dialysis at 48 after years of untreated high blood pressure.

He said the emotional and mental toll of dialysis is often overlooked, but needs to be openly acknowledged.

“I felt it would be better if I died. I felt useless, like I was only causing problems for my family. I am not ashamed to admit that I wanted to die. I say this because I know there are patients sitting in dialysis chairs right now feeling the same way, and no one is telling them that such feelings will pass,” he said.

Ahmad hoped for dedicated spaces where patients could meet doctors and counsellors for support.

“What we need is a place where patients can come together with doctors and counsellors, to share and regain their spirit. Right now, there is nothing like that,” he said.

Reflecting on his journey, Ahmad said he had no regrets.

“I donated a kidney before I was old enough to vote, and today, against all odds, I am still alive. One kidney is the same as two. I am proof, and I am grateful my kidney gave my uncle extra years,” he said.

All three patients said the support from the Sabah Kidney Foundation has made a meaningful difference in their lives. However, they agreed that stronger collaboration between the community, support organisations and relevant agencies is essential to better support the dialysis community moving forward.