SLE patient story – Kuan’s tough decision

Every time when I listen to a fellow lupus survivor describe the time when they were first diagnosed with SLE; I had to embark on an emotional roller coaster reliving their darkest moments. In some cases, going through those memories and dilemmas would kill myself a bit in the inside, but then I would tell myself that the story has a happy ending because the fellow patient is now well and alive, and we were having a chat.

Kuan’s story had the same effect on me.

When Kuan was first pregnant in August 2014, her pre-natal check-up readings were not normal. She had low haemoglobin levels, proteinuria, and blood in her urine. Although she was worried, she was still positive about the pregnancy, because as a newlywed couple, she and her husband were excited to have a baby. The doctors have increased the frequency of her check-up to fortnightly so that any abnormities are detected at the early stage.

On Christmas eve, when Kuan went for her check-up, she had high blood pressure, and exceptionally high proteinuria and blood in urine, indicating that her kidney functions are declining rapidly. She was rushed to the hospital on an ambulance. She was overcome by fear and she cried her eyes out, not knowing what her condition was and whether her baby would be affected.

After she was hospitalised, the doctors told her that she was diagnosed with Lupus Nephritis, and that they have to carry out a renal biopsy to determine what is the extent of the damage of her kidney function. She later found out she has Rapidly Progressive Glomerulonephritis (RPGN), where her kidney glomeruli (filtering units) were damaged and were not able to filter waste and extra fluids from her blood.  When she was hospitalised, she needed dialysis to sustain her kidneys’ functions. She was also diagnosed with dilated cardiomyopathy, where her heart ventricle (muscular chamber that pumps blood out of the heart) was stretched and dilated, and could not pump blood as well as a normal heart could.   Her lungs were also affected by the SLE attack.

Kuan and her family had a decision to make.

If she continues to carry her 4 months old fetus, the doctors would not be able to perform the biopsy and administer strong dosages of Immunosuppressants to suppress her flares. The immunosuppressants are meant to weaken the overactive immune system, so when a patient takes them, the antibodies’ attack on the patient would lessen. The medication is also harmful to the fetus. If her SLE continues to attack her body organs and she is not treated, she might suffer from kidney failure – having to go through dialysis her whole life; or worse, lost her life due to heart failure, and other organs start to fail.

Kuan and her husband had never heard of SLE before, and neither side has a family history of SLE. While the SLE is tormenting her body and causing grievances to her family; they are now faced with a dilemma: should they terminate their pregnancy? Kuan’s husband, Cheng had told her throughout her pregnancy that if anything happens, her staying alive would matters the most to him. Both families agreed that the priority has to be Kuan. The answer was obvious but it ripped their hearts apart having to make the decision.

Shortly after, Kuan went through the traumatic experience of an abortion. She was given medication to dilate her cervix, and she could feel contraction pain. Her fetus was discharged the next day when she went to the toilet. It was the first and last time she saw her 4 months old baby.

There was no rest for the weary. Not long after the abortion, when her condition permitted, she had to start with the SLE treatments. She had to endure the sorrow of losing her baby and having to grasp with the reality of having to cope with lupus for life.

During those days, she had her blood taken several times a day. She was losing hair, her whole body was swollen as a result of her reduced kidney functions and a reaction to the medication. She was reluctant to look into the mirror, as she described herself looking so haggard that she felt that she is dragging Cheng down. She was also worried that the cost of SLE treatment will cause a strain to their finances.

Kuan and Cheng were married in June 2014
After Kuan was diagnosed with SLE and was treated in Jan 2015

Cheng was not one to give up easily. He visited her in the hospital daily. He would reassure her by telling her the future plans that he has charted out for her so that they could cope the SLE together. He is a man of details, he has considered all of the conditions and what he would do to address them.

As Kuan reminisced, she recalls that one of the details was the fact that due to her heart conditions, she could not carry on walking without running out of breath easily. They were staying in an apartment on the 3rd floor back then, and they must walk the stairs as the building did not have an elevator. Cheng has promised that they would move into a landed property so that she does not need to climb 3 fleets of stairs anymore. He also told her that they will get by, although they may not live a luxurious life. He will try his best to ensure that they could sustain taking into consideration the medical fees. She considers herself lucky to have his companionship, and him going out on a limb to ensure that she could focus on her treatment, and has nothing else to worry at the back of her head.

After 40 days, Kuan was discharged. However, it took approximately 1 year for her dilated heart chambers to return to the normal size. In between her heart condition has slowly improved from panting upon a few steps to being able to do yoga and almost at the end of 1 year, she started swimming. In November 2015, 1 year after, Kuan went for a trip with her family to Vietnam. When she was on the train from Hue to Danang, she was in awe with the beauty of the Lang Co beach. It brought her an epiphany that very moment: her life might be different from 1 year ago, she might have a pack of medications that other healthy people do not carry in her bag; and yet she is still able to see this picturesque scenery. She considers herself to be lucky, and there is nothing to be ungrateful for.

Kuan’s moment of epiphany when the train passed by Lang Co beach

Her SLE went into remission after 3 years. During the 3 years period, there was not one incident of relapse. Kuan has been taking her medications and seeing the doctor in accordance to the doctor’s advice. After 3 years, the doctors started to ask her the question that she was afraid of: Do you want to try to have a baby now that your SLE is in remission?

Kuan and Cheng took approximately 9 months to prepare themselves mentally so that they could attempt to have a baby again, considering the fact that the last pregnancy was a rough ride. They again made a decision to free themselves from fear and go with the flow. They gave birth to a healthy baby girl after 9 months. Their baby girl is 2 years old now. Kuan is pregnant with her second baby now, and will be due soon.

Kuan and Cheng in 2018

It is truly inspiring to see that a married couple took the “for better, for worse, in sickness and in health” marriage vow to heart, and became each other’s rock during this bumpy journey. I love Kuan’s description of their marriage: “he made me feel that I have married the right person”. For many this is something they hope they could feel until the end of days. I am grateful that Kuan allowed me to pen down her courageous battle and touching love story. I wish their family the very best and the safe delivery of their second baby!


Fighting to get her old life back – Story of Azreen

Azreen is a girl who led an active and interesting lifestyle before lupus. She loved group activities. Not only she was in the marching band, she also played sports such as netball and hockey when she was in high school.

Azreen has been a lupus patient for nine years. She was first diagnosed in 2010, at a young age of 14, when she was in secondary school. She started with Dicoid lupus, ie lupus that affects the skin. Visible dark red rashes started appearing on her face and limbs. She encountered intermittent fevers and joint pain. In fact her joint pain was so severe that she could not hold a pencil and write.

As a result of the active attacks of the lupus, her white blood count reduced tremendously during the period. The prolongation of such attacks without intervention would be fatal, therefore she was given immunosuppressant shots to stop her lupus attacks and manage the damage to her organs. She got the shots monthly, for a duration of ten months. Everytime the shots took approximately ten hours to be administered. After the administration, she will need to rest for one day or so. She also relied on prednisolone to increase the white blood cell count. She had to be excused from school during those days.

She had hair loss because of the attack and weight gain arising from the prednisolone ingestion. She felt sad because at her tender teenage she saw that her peers all looked pretty with spotless skin, long hair and slender bodies, whereas her exterior was completely messed up by lupus. She felt helpless having no visibility of what will become of her in the future.

In high school, kids around her were curious about her sickness, since they could see the red lupus rashes on her body. They asked her why did this happen to her, what disease is this etc. Questions that she find it hard to even explain to herself. Lupus being a disease not known of, has symptoms that are unfathomable by healthy people. Azreen recalled that when she told her teacher that she could not do her homework as her fingers could not hold a pencil properly, the teacher told her “cubalah dulu tu!” (Why don’t you try first?) For a teenage patient, this was a cruel judgement as it implied that she did not try harder, and if she did, perhaps she could hold that pen afterall? As a lupus patient myself, I knew precisely how she felt when she said she could not hold the pen. You try with all your might, and you were absolutely helpless, yet, you will not be able to hold that pen without feeling excruciating pain. There is no way for her to explain or argue with her teacher and tell her “I have tried very hard!”

Her discoid lupus has became less active several years after she was first diagnosed. However in 2017 she had kidney involvement (Lupus Nephritis) and pneumonia as a result of a triggered lupus. She attributes this to the various pressure she faced. She went through the recovery process once again.

She admitted that there was a period of time when she was in the dumps. She felt depressed and has almost wanted to give up on herself. Her mother was having a hard time accepting that both Azreen’s dad and Azreen herself has got lupus. There were times when she cried because she felt so helpless seeing Azreen in pain. But most of the other time, Azreen’s family and her mom has been a pillar to Azreen’s recovery.

Azreen spent her time praying and listening to her favorite K-Pop band, BTS, to take her mind off worrying about her sickness. She said she owed her recovery much to her own self-reflection. She knew that she could not continue to feel so bad about herself and forsake her life all together. She is now healthy and living a normal life. Although she is still wary about going under the direct sun. She has tried it before and she ended up admitted to the hospital for 2-3 days. She said she might try another time during the day, perhaps at 6.45pm. Some compromises have to be made.

” You must always believe in yourself, and know your own limits when comes to managing lupus. Tell your friends and family what help you need from them, and what are the circumstances that might trigger the attacks, so that they could work together with you to reduce chances of relapse. ” These are the advice Azreen gave, and she told me that she looks forward to be able to doing more sports, like hiking again. I wish her the very best and look forward to see her telling me more stories about her life again. 🙂

Happy 3 years’ anniversary, Lupus!

Tasked as part of the writing committee for our local lupus association (Persatuan SLE Malaysia), I have no worries on the contents for our bulletin next year, because I know that in the event I could not get anyone to share their lupus experience, I will always have a trusted back-up plan: Myself!

Wow, I cannot believe that it is already 3 years since I was diagnosed.

It feels like yesterday, when I wondered why I felt this crippling pain every night, and how one week ago I was climbing walls, and one week later I had problems climbing down the staircase. I recalled the helplessness I felt when my insurance agent told me that eventhough Lupus Nephritis Class IV is part of the 36 critical illnesses, due to an untimely update, it is not covered under my personal insurance policy. I remembered that I felt like crying everytime someone asks me: “How are you?”.

Of course I also remembered the care from my parents and brother, the helping hands of my boss, the patience of my bestie, the warm wishes from my old school mates, the concern of a boy, and the encouraging words from my rheumatologist. Acceptance of the illness was not possible for me, if were not for the inspirational and life changing movie, Meru by Jimmy Chin.

It all made a difference.

My memories associated with lupus has already been stored in a corner of my mind, not something that I could recall instantly. I do not think that I consciously chosen to forget about them. Lupus has changed my life in many ways, most of them for the better.

Before I had lupus, I knew I was working very hard, and I felt like I had no choice but to work hard, just because. After I have lupus, I started to understand the meaning of  the fragility of life. I understood that I am not invincible, and life does not always head towards the direction you wish that it would head to. There are always unexpected twists around the corner. If you can live your life the way you wish to live today, do not wait until tomorrow. If you can talk to your loved ones, give them a few pleasant words, a smile today, do that to them today, and do not postpone it to tomorrow. Would I still have these realisation even if I did not have lupus? I will not know the answer to that question, but I knew that I learnt a lot from lupus.

I do not like the hospital, and I dread the long hours of waiting in the hospital. But I know that I will definitely be able to see the doctor on the same day or one or two days after. I learnt to cope with it. I learnt to see the positive sides of everything. I learnt to appreciate a long wait at the specialist’s clinic. I learnt to appreciate the help that the doctors and the medical staff provide to me. I learnt to appreciate the honesty and directness in the doctor’s communication. I have gotten to know many new friends, people whom provided support, and in return, I provided support to, throughout our lupus journeys. I have started reading a lot more than before I had lupus. Mostly because during the earlier days when I was first diagnosed, I had to be in the hospital on my own, so I had more time to read.

I am now quite comfortable with lupus that sometimes I almost forgotten about it. Medication and keeping track of stress levels are things that I do on a daily basis. When my stress level elevated too much, lupus will give me a gentle tap on my wrist, instead of a violent jolt. I suppose my lupus is a mirror of myself. There is always some quid pro quo arrangement between me and lupus. I do not push it to the edge, and neither will it give a big surprise and push me to the edge. We respect each other just like that.

I had a good one this year, so I would like to toast to my lupus for 2018! Cheers!



If you can survive the hospital, you can survive everything else

Spoiler alert: This is not a hospital bashing article.


The real place that taught me so much on acceptance. It taught me that I am no special snowflake. It taught me that everyone else’s lives are also important. It also taught me that if everyone is giving it a fight, why would someone else expect their fight to be more brutal than the others’?

Continue reading “If you can survive the hospital, you can survive everything else”

Can I actually inspire anyone?

I started this blog to document my life after I was diagnosed with Lupus Nephritis Stage IV, and hopefully could inspire new patients around the world to lead a normal life again. I recalled when I was first diagnosed, I was frantically searching information on the internet to give myself hope that I will be normal again, and what I saw was other lupus patients having worse symptoms, and the only direction that lupus could turn, is to worsen. The lupus patients in the ward next to my beds are suffering frequently, and whilst I did speak to some of them, I did not have time to digest what those conversations meant to me.

It took a while for me to accept my new friend, and the adjustments that I have to make in my life. It was also not easy to accept hospital bills raking up, and that these bills need to be paid instantaneously otherwise I would not be able to receive treatment.  Continue reading “Can I actually inspire anyone?”

5 things I learnt about work and lupus after re-watching The Dark Knight

The Dark Knight (2008) was a soul shattering and nerve wrecking movie when I watched it in the cinema back then. The horror and havoc that the Joker has brought upon to Gotham city is incomprehensible and unexpectable.  I recalled having my heart hung on a string from the bank robbery scene all the way until the end where batman escaped onto a highway on his batpod. Continue reading “5 things I learnt about work and lupus after re-watching The Dark Knight”

Lupus Nephritis Stage IV – When it started to sink in

When I was first diagnosed with SLE, there were also blood trace and protein in my urine indicating that my kidney are also under attack. The rheumatologist advised that I get a renal biopsy to determine the extent of damage the SLE has caused to my kidney.

I was hospitalised to undergo treatment and renal biopsy. I had to collect 24 hours of my urine to obtain a more accurate reading of the level of protein leakage.

“Every time you go away, you (I) take a piece of me (you, kidney) with you (me).” Paul Young’s song could be the theme song of a biopsy room. Continue reading “Lupus Nephritis Stage IV – When it started to sink in”

Lupus – When you fight you

Ever since I started to feel the existence of my nagging inconvenience, I have been hoping that it will go away eventually. 16 days and tonnes of painkillers later, it seemed that my unknown partner is here to stay. It greeted me every morning with pain, left me alone for 7 hours, and reported to me again until I close my eyes. I could no longer go climbing, lift weights, even moving around is difficult. I decided that I needed to put a name to this nagging inconvenience of mine, and have a heart-to-heart conversation with it. Continue reading “Lupus – When you fight you”

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