Siti Fairus Muhammad, 34, suffered from kidney problems since her secondary school days.
“I was about 15 or 16. I went to see a doctor because I had a fever. According to the doctor, my urine was not clean and it was not filtered,” Fairus told Malaysiakini.
“When I was 16, I went to Kota Bharu Hospital and the doctor wanted to take a sample of my kidney. My father did not approve and so I continued with school and later got married,” she recalled.
It was suspected that Fairus suffered from kidney failure due to the strong medication she had taken during her childhood for a skin condition. As nothing was done to treat the side effects, it gradually got worse.
Fairus’ husband, Mohd Hairy Azrul Mat Jusoh, 31, donated one of his kidneys to her about three years ago. Both Hairy and Fairus are civil servants and have two children.
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When she was carrying her first child, Fairuz had to undergo several tests and that was when the doctor detected an anomaly in her urine sample. As she reached her fourth month of pregnancy, the doctor wanted to admit her to the hospital.
“The doctor said that she can't go through with the pregnancy but after consulting her and our family, we decided to go through with it because she was still fine,” said Hairy.
“A year later, she got pregnant again and we had our second child.”
The doctor, suffice to say, was not too happy with their decisions.
“After she gave birth to our second child, her creatinine levels spiked,” Hairy added.
(Creatinine is a waste product that comes from wear and tears on the muscles of the body. Creatinine levels greater than 1.2 for women and greater than 1.4 for men may be an early sign that their kidneys are not working properly).
By then, the doctor was unable to take any samples from her kidney because she had already reached level 3 or 4 of kidney failure and both had shrunk too much.
Her physician suggested for Fairus to undergo dialysis.
Condition worsened
“But I did not want to undergo dialysis because at that time I was not experiencing any symptoms of kidney failure. I was also scared because they had to connect a tube to my neck,” she said.
However, she was forced to change her mind when one day she felt really tired after visiting a theme park.
“I usually pass urine two to three times a day. That day I did it once every hour and it went on for a week. I could not sleep properly. Hence, I decided to undergo dialysis.”
Initially, there were no plans for a kidney transplant but as the situation worsened, the couple even contemplated buying a kidney from another country.
“Our doctor was firmly against it,” said Hairy.
And at the time when they were looking for donors in Indonesia, there was viral news about children being kidnapped and their organs harvested. This made the couple rethink their decision.
“We thought about what it would be like if it happened to one of our family members. We realised it was the wrong thing to do.
“We spoke to our doctor again and he told us to ask our family members and even suggested for me to help. He said people with different blood types (from the recipient) can donate their organs. So, I decided to be the donor,” said Hairy.
The procedure on both of them took almost an entire day. Her blood group was O while his was A. They had to undergo some procedures to make sure her body did not reject his kidney.
Those with the same blood type usually take a much shorter period to finish the whole procedure but the couple had to wait a month before they were done with it.
Plus, they also had to undergo psychiatric evaluation and were told about the risks involved should the transplant fail. Essentially, they had to be mentally prepared for this big step.
Doing better now
Hairy said that he sought advice from others who donated their kidney, who encouraged him to go through with his plans.
With the procedure over, Fairus currently takes medication to control antibodies in her body.
“I was undergoing dialysis for two years. Each time I underwent dialysis, I would have a terrible headache that made me want to pull my hair. The pain would only go away the next day.
“Now I can spend more time with my family, visit places and I have even started putting on some weight.
“It is like a new life. To be able to be with your children and your family,” she said happily.
The couple advised everyone to become organ donors so that their organs can be harvested upon death to save others or to be a live kidney donor to help loved ones in need.
“I feel it is necessary because it can help others. There is a big difference between being sick and being healthy again. When you are sick, it affects your whole family and work,” said Hairy.
Their kids are now 11 and 10 and Fairus does not intend to have more children.
Explaining, the couple described the hectic trips to the hospital that became their “second home” and how they had to balance their lives at work and as parents, especially given Fairus’ medical condition and the kind of care she needed.
As for Hairy, he does not feel any different healthwise since he gave one of his kidneys to his wife and encouraged others to become organ donors as it was a noble deed.
World Organ Donation Day
The international community observes World Organ Donation Day today. It is aimed at raising awareness of organ donation's importance and encouraging people to make the pledge.
In Malaysia, the National Kidney Foundation (NKF) established the Code Life programme in 2018, which serves as a forum for dialysis patients, particularly those suffering from end-stage renal disease, caregivers and the community to come together and learn more about renal transplants and share experiences with one another.
During the pandemic, NKF used to hold these events via webinars. Now, they are holding it face-to-face with nephrologists, kidney donors and kidney recipients in attendance, sharing their personal stories.
Here are several details from the National Transplant Resource Centre website on organ donors:
Transplant patients on a waiting list - 10,278
Number of organ donor pledgers from 1997 - 515,530
Total number of organs and tissues donated from 1997 – 2,432
Total number of actual deceased donors from 1997 – 774
Total number of Transplant surgery from 1997 - 2,678
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