Radiyah Mohd Som
Kidney Donor

Assalamualaikum! Tell us more about yourself.

Waalaikumussalaam! My name is Radiyah Mohd Som. I’m 50 years old and I have 4 children ranging from 14 to 26 years old. My husband is Khairul Anuar and he is 53. We have 3 cats – Kiki, Tamtam and Rosie. I also feed 3 community cats under my block every morning after Subuh prayer. We really love our cats. Whenever my family and I are away, we would get someone to feed all 6 of them.

How did you meet your husband?

I met my husband when we were both working at the airport, with Malaysia Airlines. I still remember when I was looking for a man named Khairul Anuar to hand over a document. I expected him to look like a typical Malay but he looked like a Chinese, thanks to his Javanese and Chinese parentage. We dated for a while before he popped the question. He didn’t ask, “Will you marry me?” but “Shall we apply for a flat?” We got married at our new house and stayed there immediately. We were both the youngest child in our families. Having to live on our own helped us to be more independent and mature.

I hear that your husband had medical issues. What were they?

Khairul had high blood pressure for 5 years. He then developed cysts in his kidney. In 2000, his first kidney started failing. We found out just a month after I had my third child. We had to visit the renal clinic to monitor the condition of his kidney. A year later, his second kidney started failing too. He was on kidney dialysis thrice a week for 7 years. Hemodialysis was really tough on Khairul. It changed his attitude and outlook on life. He got upset at the smallest things. As a wife and caregiver, I had to endure with lots of patience. Alhamdulillah, his company paid all the medical expenses at that time.

In 2006, Khairul got retrenched after working for 24 years in the airline industry. His pay as a senior officer at the airline was gone and he had to bear his own medical expenses. That was a huge blow for him. His health deteriorated even more. He was so weak he could not walk properly. His weight dropped from 80kg to 55kg.

In 2007, he had to remove his parathyroid glands. These glands are responsible for regulating calcium in the body but Khairul’s were going into overdrive. The surgery was supposed to last for an hour but became 4 hours. I was waiting and praying outside, not knowing what was happening. Later, the doctors informed me that he had a cardiac arrest and his heart stopped beating for 10 seconds. Alhamdulillah, they managed to revive him. Khairul was admitted to the ICU afterwards. We were told that his heart was functioning at only 15% of what was expected of a normal heart. The toxic waste that was not cleared out during dialysis had weakened his heart muscles. He was so debilitated that he could not walk and had to be pushed in a wheelchair. That was when he started daily dialysis treatments.

Did your routine change after that? How did that you cope?

Every night, I would leave my 4 children at home and drive him from Punggol to the dialysis centre in Hougang. One day, my son cried and asked me why I stopped tucking him into bed. That broke my heart. I’m not just a wife; I’m also a mother. My kids deserve my time too. I began a new routine. I would drive my husband to the centre, return home to tuck my children into bed and drive back again to accompany my husband for his dialysis. I wish I could say that I was optimistic throughout but I was not. I was always overwhelmed with chores and felt depressed. It was definitely a challenge supporting a family of 6 since my husband was not working. I was a parent volunteer my son’s school and Alhamdulillah, I got a job there as an assistant teacher. I worked from 8 am to 1 pm. After that, I would rush home to send my daughter to kindergarten. She was always late because her class starts at 1 pm. I hated Taufik Batisah’s ‘Berserah’ at that time. I fought to stay strong in front of my family but when I was alone, I was always crying.Whenever I was in the car by myself, I would break down and cry. I remember catching a driving staring at me while I was sobbing at a red light. When I prayed, I sobbed too. I begged Allah to show me a way to ease our problems. It was a rollercoaster ride. Sometimes, I felt alright. Other times, I was completely broken. Despite all the problems and tests, I knew that I couldn’t give up. It was a struggle but I knew that Allah only tests those who are strong enough and that He wouldn’t burden a soul more than it can take.

One day, I received news from the doctor that my husband only had a couple of months to live. The daily dialysis treatments were not helping anymore. I was devastated. The only solution was a kidney transplant. The doctor informed us that getting a kidney with the same blood type would be the best option. Khairul’s blood type is O+ while mine is A+. Kidneys from close relatives like siblings and parents tend to better match because of blood and antigen compatibility. This means there is less chance for rejection of the kidney, and the number and dose of anti-rejection medications may be lower. What’s more, after a medical evaluation for health and compatibility, a transplant can take place almost immediately. I quickly called for a meeting with Khairul’s brothers, sisters and relatives. I even contacted his relatives from Java. After discussing, all of them decided that they did not want to donate their kidney. I knew that it was a huge decision and that they should not feel pressured to donate. However, I also knew that Khairul’s life was at stake. I had high hopes that someone would want to save a man who is a father to four children. They were so young and needed a father. I was really heartbroken. Out of desperation, I contacted The Straits Times and Berita Harian. They published our story and appealed for donors. Once again, no one came forward.

Time was running out and Khairul’s weight was dropping drastically. He spent his days lying on the living room couch, too ill and weak to move. I kept praying nonstop. Hasbunallahu wa ni’mal wakeel. Allah sent everyone away and now it was just me and Him. I assured myself that Allah is infinitely compassionate and just and His help is always near. I tried my best to block out hopelessness, despair and negative thoughts. Only Allah can make a way when there is no way. After some time, Dr Lye called me and told me that there was another option – ABO incompatible kidney transplant. The donor’s blood type and Khairul’s blood type did not have to be compatible. Khairul would have to be on medical treatment before and after the transplant to lower antibody levels in his blood and to reduce the risk of rejecting the donor’s kidney. This process is called ‘plasmapheresis’. The transplant had never been done in South East Asia before. Experts and equipment would have to be brought in from Sweden. I felt extremely blessed and I couldn’t be more grateful to Allah for showing me a way out. I instantly volunteered to donate my kidney.

We appealed for the procedure to be done in a government hospital so that we could use our Medifund. Sadly, our appeal was rejected. We had no choice but to get the transplant done at a private hospital, Mount Elizabeth. A standard kidney transplant would have cost about $60,000. Dr Lye told me that the transplant would set us back by at least $120,000. I took a deep breath. I told him that if Allah had shown me a way to save my husband’s life, He would certainly show me a way to get the money.

I contacted The Straits Times and Berita Harian again to share our story. Alhamdulillah, immediately after the story was published, strangers of all races and from different organizations like churches and temples came forward to donate generously. Even the Punggol-Pasir Ris MP reached out to help us. Preparation for the transplant was done immediately.

That’s amazing. You’re a hero! How did the transplant go?

27 May 2008 was the date of the transplant. Some people asked me why I was going through with this. I would be lying if I said I wasn’t afraid. What if Khairul and I didn’t make it? Our youngest child was only 6! This was a risk I was willing to take for a chance to save the life of my husband and the father to my 4 children. I just did what I had to do. I don’t feel like a hero. We plan but Allah is the best of all planners. He is the one who decides what happens and what doesn’t. Alhamdulillah, his body accepted my kidney despite our different blood groups. My children spent their school holiday in the hospital for 3 weeks. The bill came out to about $200,000. We managed to raise half of the amount from the public. The other half was paid in instalments over 5 years. Even until this day, Khairul is on anti-rejection medication. This will have to continue for the rest of his life. He has a whole box of medicine he has to take. The bill for the medication comes up to $1000 a month since it comes from a private hospital.

How did your children cope?

My 2 elder daughters, Sarah and Nabilah went through a lot with us. They practically grew up in the hospital. They helped their father post-dialysis and tended to his cramps and wounds. Once, Khairul’s catheter accidentally got dislocated and he was bleeding profusely. Instead of panicking, they immediately helped their father. The difficulties that we faced as a family inspired Nabilah to choose a career that would allow her to help others. She is now a staff nurse and is pursuing her degree, Alhamdulillah. Imran and Khalisa were really young at that time. However, they could sense the heartaches and frustration. They were really shocked when they saw their dad driving and cycling again. They were happy to see him enjoying his life after all the things he’s been through. Alhamdulillah.

What would you say to people who have kidney problems?

I know that no one wants to be sick. I know that it’s hard but remember, there is always something good. Prophet Muhammad SAW said, “For every misfortune, illness, anxiety, grief, or hurt that afflicts a Muslim, even the hurt caused by the pricking of a thorn, Allah removes some of his sins.” Alhamdulillah ‘ala kulli Haal. Trust Allah. Try to enjoy your life and spend time with your family. Take care of your diet and be active. If there is an opportunity for you to get a transplant done, take it. After our ABO incompatible transplant was successfully done, the government hospitals started doing it. Our transplant has opened the doors for other kidney patients. My husband and I can talk to you and share what to expect. It has been 7 years after my husband’s transplant and Alhamdulillah, all is well. My husband is now able to go back to work, doing what he loves in the airport. Khairul still has scars and bumps on his arm because of the years of dialysis but I believe that they are battle scars. They are what he had to go through to get where he is today, a healthy man.

What would you say to caretakers of kidney patients?

I feel your pain. I know what it’s like to feel helpless and lost. I know how it feels to cry in despair. It’s difficult but you have to try to be there for them as much as possible. Try to look at things from their perspective. They can’t help having kidney problems. Encourage them to socialise. I used to send my husband to coffee shops so he can be with his friends like a healthy 46-year-old. I would go grocery shopping with him and push both his wheelchair and the shopping trolley. We would get stares. Sometimes, people would ask if my husband was sick. Take it in your stride and don’t let it get to you. Bring them out with their children and loved ones. We used to go for picnics at the beach and even camped out. Try to treat them the same way you did before they got sick. A sickness should not determine the amount of time spent outside with your loved ones. When Khairul was still working and on dialysis only thrice a week, we even managed to travel to Japan and New Zealand. Trust me, you can arrange for dialysis to be done overseas. Don’t let kidney failure tie you down. Be strong for your family. Never ever stop praying because He will find a way out for you. Everything happens by the will of Allah, good and bad. I believe deeply that Allah never burdens a person beyond his scope. Allah never disappoints. We eventually found a way out, even if it was years after. He hears everything we say, even if it’s a whisper or an unspoken word.

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