KUALA LUMPUR, April 12 – Last year, Mr Chew (pseudonym) made history by becoming the first person living with HIV to successfully receive a kidney transplant in Malaysia – at University Malaya Medical Centre (UMMC).
Nearly four decades since the first HIV case was reported in the country, people living with HIV continue to face discrimination and stigma in accessing health care. Mr Chew’s journey to a life-saving transplant highlights this reality.
For years, he sought a kidney transplant, only to be denied repeatedly by doctors and hospitals, both locally and abroad, due to his HIV status.
Mr Chew and his wife, who spoke in a joint interview with CodeBlue last February, said they consulted over 20 doctors, all of whom declared the procedure impossible.
“I felt helpless and desperate. It felt like the end of the road. Fortunately, I have the support and encouragement of my wife. She has always been by my side,” said Mr Chew (surname changed to protect patient and his wife’s confidentiality).
Mrs Chew, who is HIV-negative, was the donor in the kidney transplant.
At the time, Mr Chew was struggling with kidney failure and undergoing peritoneal dialysis four times a day. “The dialysis process is not only dangerous and problematic, but it also prevents me from sleeping through the night. My body often feels cold to the bone, and my stomach is in excruciating pain most of the time. On one occasion, I even developed severe fluid in my lungs. That’s why I decided to pursue a kidney transplant,” explained Mr Chew.
“Every month, my husband was admitted to the hospital due to bacterial infections from the dialysis,” Mrs Chew recounted. “We consulted numerous doctors, including private practitioners, but one of them suggested that, given his age, we should let him continue with dialysis. It was a difficult time for us.”
It wasn’t until the couple met the team at UMMC that they finally found hope for the life-changing surgery that Mr Chew desperately needed. “I am very grateful to them for not giving up on us, HIV patients, and giving us new hope,” Mr Chew said.
Fear Of Rejection After An HIV Diagnosis
Mr Chew has been grappling with the stigma surrounding the virus from the time of his HIV diagnosis two decades ago in Singapore.
“I went to Singapore by myself for medical treatment and a physical examination, and when the results came back, the doctor told me that I had HIV,” Mr Chew said.
The doctor told Mr Chew that he could not receive medical treatment for HIV in Singapore and that he would have to return to Kuala Lumpur. The doctor then wrote a letter for Mr Chew to bring to Malaysia, where he could receive treatment at University Hospital (now known as UMMC).
“The doctor sent officers to the hospital to escort me back to Malaysian Customs, where my passport was stamped with a permanent ban on entering Singapore,” Mr Chew added.
Mr Chew, who was in his early 30s when he first received his HIV diagnosis, said the news plunged him into a state of despair, and he even contemplated ending his life.
“I felt like my entire life was in chaos, my mind was empty, and I had no idea how to plan for the future,” Mr Chew said. “I felt that I wanted to end my life at that time, and my world was suddenly dark.”
Upon returning to Kuala Lumpur, Mr Chew refrained from telling his wife about his condition. “I didn’t know how to talk to my wife about it,” he said. He later sought medical advice from a doctor at UMMC, who recommended that he bring his wife in for a checkup as well.
“I found that he had been avoiding me and, for a period of time, had even blocked me. He said he wanted to leave me. I’ve always understood his behaviour from the moment we fell in love to the time we got married and noticed that he was not in the right state of mind,” Mrs Chew said. “He was not himself.”
Mr Chew said he had lost all hope at the time. But he soon summoned the courage to confide in his wife about his HIV status and urged her to accompany him to the hospital for a checkup.
“At that time, I was also very afraid of HIV,” Mrs Chew said. “Although I consider myself a strong person, I too felt depressed, desperate, and tormented.
“My husband was struggling with thoughts of dying and he confided in me. I reassured him that no matter what happens, I would stand by him and give him the strength to carry on.”
Mr Chew was concerned for his wife’s wellbeing and suggested that they both get tested for HIV. He explained that if she tested positive, they would face the challenge together, but if she tested negative, he encouraged her to consider finding a HIV-negative partner.
The couple’s first child, who was born just months after Mr Chew’s HIV diagnosis, was also taken for a checkup. After two weeks, the couple were relieved to find out that neither the mother nor the child had contracted the virus.
“Since he was my choice, I felt like I could not give up on him. I knew I had to be strong. After receiving my test results confirming that I did not have HIV, he contemplated leaving me, not wanting to waste my youth,” Mrs Chew said.
“I took some time to gather my thoughts, understand my feelings, and then expressed to him that I wanted to remain by his side.”
According to Mr Chew, his wife has been a constant source of support and encouragement over the past 20 years. He said her unwavering presence has allowed him to persevere through the challenges of living with HIV.
“She is really brave and has stood by me through many challenges, including the recent kidney failure that hit us hard. It hasn’t been easy, but she has been there for me.”
Following Mr Chew’s diagnosis, the couple became apprehensive about having a second biological child.
The couple have chosen to keep Mr Chew’s HIV status a secret from their children and extended family members. “We are afraid to tell both sides of the family. So far, only the two of us know about Mr Chew’s HIV status,” Mrs Chew said.
“Our children are also unaware of the situation, and we keep it a secret in order to protect them from potential stigma. We don’t talk about anything related to this condition at home, and the only health issue we’ve disclosed to our family is Mr Chew’s kidney failure.”
Twenty Years Of Living In The Shadow
For two decades, the couple endured a life of isolation, marked by difficult sacrifices and daily struggles.
To cope with his illness, Mr Chew and his wife ran their own business – a grocery store – while carefully managing their expenses. They put travel plans on hold and committed to a rigorous medical regimen, with Mr Chew taking every medication prescribed by his doctor.
“When I was first diagnosed with HIV, my health was very poor. I had a fever all the time and I was in a very bad mood. My medical expenses were very high – a month’s worth could cost one or two thousand ringgit – and our income wasn’t very much at the time,” Mr Chew said.
Over the next 20 years, the couple put their lives on hold as they focused on building a successful business and saving for an uncertain future. “I am worried that in the future, he will have a medical bill to pay. I want to be prepared for the future medical bills,” Mrs Chew said.
“I can’t get insurance because of HIV,” Mr Chew added.
Mr Chew expressed concern about his ability to provide for his family in case he falls ill from HIV in the future. He said he wants to save money while he is still able to work, in order to have a safety net in case of a medical emergency. “If something happens to me, at least my wife and children do not have to worry about food and clothing,” Mr Chew said.
Mrs Chew reassured him that they could handle any future financial challenges together. “He is a very simple man. All he wants is for his children and I to have a stable home and life, and he feels very good.”
Thanks to government subsidies, the cost of these once-expensive drugs has fallen significantly in recent years, now costing about RM200 per month.
Despite Mr Chew’s compliance to his medication, there were times when his CD4 count dropped significantly, sometimes as low as 16 cells/mm3.
CD4 cell count is a test used to measure the number of CD4 T-cells in the body. A healthy range is between 500 to 1500 cells/mm3. Doctors use this test to keep track of how HIV affects CD4 cells and to see how well antiretroviral treatment (ART) is working.
The test is also used to determine the stage of HIV and guide medical treatment. If CD4 cell count drops below 200 cells/mm3, it is considered an indication of AIDS, which can lead to opportunistic infections and increase the risk of death.
Mr Chew shared that his CD4 count varied significantly during his HIV diagnosis, reaching a low of 5 cells/mm3 and a high of 1,600 cells/mm3. Despite this, he had an undetectable HIV viral load on multiple occasions.
“The kidney failure happened within the past three years, and the doctor said it might be the effect of HIV medication,” Mrs Chew said.
The Kidney Transplant At UMMC
Due to Mr Chew’s HIV status, he and his wife had struggled in finding a hospital that was willing to perform a kidney transplant for him. They had contacted several major hospitals in Singapore, and other foreign hospitals, but all had refused to accept their case.
However, Mr Chew had heard that successful kidney transplants had been performed on HIV patients in the United States and Thailand, which gave them hope.
Finally, they were able to find support at UMMC. The team at UMMC was composed of medical experts in nephrology, infectious diseases, and urology. The university hospital had not performed a transplant on an HIV patient before, but they agreed to try.
The couple first approached Assoc Prof Dr Ng Kok Peng, consultant nephrologist at UMMC, who then consulted Assoc Prof Dr Raja Iskandar Shah Raja Azwa, infectious disease consultant at UMMC and president of the Malaysian AIDS Council.
“During the process, we also learned that we had to wait for a long time to get a transplant, not to mention that he was an HIV patient and that a wife transplanting to her husband would be the fastest and would eliminate the complicated application process. So I decided that I would donate my kidney,” Mrs Chew said.
After six months of preparation, including physical examinations and matching, Mrs Chew’s kidney was found to be suitable for Mr Chew, and they proceeded with the transplant.
“Before my wife was going to have the surgery, a minute before the doctor came and asked her if she would not regret it,” Mr Chew said.
“The doctor said if you want to cancel, no one will blame you,” Mrs Chew said. “But I said, no need to ask further, I have already decided.”
The surgery was successful, and after the recovery period, Mr Chew no longer needed dialysis and was feeling much healthier.
Immediate post-surgery care included frequent follow-up checks three times a week – every Monday, Wednesday and Friday. Once his condition became more stable, follow-up checks would take place every two weeks and, after that, once a month.
“The difference between before and after the dialysis is really big, now it’s like a normal person,” Mrs Chew said. Mr Chew said during dialysis, he could not consume more than 500ml of water and was very weak. “But after the transplant, I am very healthy.”
A New Hope
It has been more than six months since the kidney transplant took place and Mr Chew is recovering well. He can eat, his weight is back to normal, and he is in good spirits.
“Now, wherever he goes, I will remind him when to drink water and what to eat – less oil, less sugar and less salt,” Mrs Chew said.
“Dr Iskandar encouraged us to be interviewed and said that the story of our transplant will help more people to know that people living with HIV with end-stage kidney disease should be given the same opportunities and access to health care as HIV-negative persons, including the right to have a kidney transplant to improve their quality of life,” Mr Chew said.
“As I am now, I am healthy even though HIV is still in my body, and we have a new hope coming up in April when we will finally travel abroad.”
Mrs Chew added: “We have been rejected by many doctors. Dr Iskandar said that by being interviewed, more doctors know that even HIV patients have the right to be treated. Dr Ng also encouraged us to talk about our experience so that others can be inspired to try it.
“We are very grateful to Dr Iskandar’s team, Dr Ng, Dr Lee Yee Wan (nephrologist), Dr Ng Rong Xiang (infectious disease physician) and the team of surgeons for their support and care throughout the whole process.”
For Mr and Mrs Chew, their journey has taught them to appreciate the gift of life, especially time and health. “Every day is a race against time, especially for those with HIV disease,” Mrs Chew said.
After Mr Chew’s kidney transplant, Mrs Chew realised that she needed to slow down and not always do everything on her own.
Mr Chew stopped smoking after his kidney transplant, realising the great sacrifice his wife made for him. He encourages others not to give up, as HIV treatment is effective, and there is still hope. “This kidney transplant is a return to life,” Mr Chew said.
Mrs Chew emphasised the importance of support and encouragement for persons living with HIV and highlighted that they can contribute to society.
“Very often, HIV patients are misunderstood by the public. As I said, when my husband first found out he had HIV, he thought he had been sentenced to death. So, do not reject HIV patients – they need more care and support in society, and they should enjoy life as normal people,” Mrs Chew said.
The couple’s unwavering belief in the right to life for all individuals is a powerful message that people living with HIV are entitled to the same level of care and support as any other living person.
Achieving equal access to health care treatment is vital to ensure that everyone, regardless of their HIV status, can live a healthy and meaningful life.
