It was a Monday morning when I was informed by my staff that Nurse Kawiyah had been admitted to KK Women’s and Children Hospital.
I have known Kawiyah for nearly two decades, from when we working together in the Oncology ward for subsidized patients at Singapore General Hospital (SGH).
When I decided to start my own private practice in 1997, I asked her to join me because she struck me as someone who really cared for the patients.
To her, nursing was not a job but a calling. She genuinely cared for people, taking time to talk to patients and helping to address their fears and anxiety.
Kawiyah was admitted on Sunday night when she noticed blood in her urine. Immediate investigations showed that she was severely anemic and there was evidence of moderately severe kidney impairment.
As there was no pain associated with the blood in the urine, cancer was raised as a possibility. I spoke to my good friend, Dr Leong See Odd, a consultant kidney specialist to help liaise with the doctors in KK Hospital for updates on Kawiyah’s progress.
Within a few days, Dr Leong came back with the news that the kidney specialists from SGH had seen her and the diagnosis of Systemic Lupus Erythematosus (SLE) has been made.
“Thank God it’s not cancer!” I said upon hearing the good news.
SLE is an autoimmune condition, which means that the body’s immune system mistakenly attacks healthy tissue. It is a chronic condition which often results in injury to various parts of the body – including the skin, joints, kidney and brain.
The reason behind getting SLE is unknown. It is more common in women than men. One can develop SLE at any age but most are diagnosed between the ages 10 and 50.
In the large majority of patients with SLE, the disease is rather mild, presenting with a facial rash (described as butterfly rash affecting both cheeks and the bridge of the nose), some joint pains and fatigue.
The mainstay of treatment, as in most autoimmune conditions, is corticosteroids. Steroids have an anti-inflammatory action that helps to mute the over-active immune system.
Once the diagnosis of SLE was confirmed from a biopsy of the kidney, Kawiyah was transferred to SGH to be under the care of the renal team.
From the updates provided by Kawiyah, I knew that she was being aggressively treated with a combination of steroids, cytotoxic drugs as well as having plasmapheresis.
It was a heavy spell, but from the tone of the messages and the daily feedback from my staff, I understood that she was feeling better.
“Good morning all. Thank God all is well. Getting better. Missing all of you,” she posted in our chat group.
Ten days into hospitalization, she messaged on Wednesday that the doctors were planning to discharge her on the following Monday. We were all relieved.
Then, on Friday morning, I received a call – Kawiyah had been transferred to intensive care unit (ICU)
She was apparently well the evening before but started coughing out blood at 7pm and complaining of shortness of breath. A chest x-ray showed that both her lungs were opacified (meaning that there was either blood or infection preventing air from filling the lungs).
She was immediately transferred to ICU and placed on a ventilator to assist her breathing. One of the pupils was dilated, indicating that she had bled in her brain. This was later confirmed on a CT scan which showed that she had suffered a massive brain hemorrhage.
I was stunned. I spent the day calling all the doctors who were looking after her to try to understand how this could have happened. There were no good answers on why she deteriorated so suddenly.
That same day, Kawiyah died, aged 54. I went to her house to pay my last respects.
Everyone was calm. Her body laid on her own bed in the bedroom, covered with a batik shroud and her face was covered with a white cloth.
Her husband lifted the white cloth for me to see her face. She looked like she was asleep with a hint of a smile on her lips.
I sat with Kawiyah’s family. I’m sure there was sadness in their hearts but they did not show it. There were no regrets. She lived a fruitful life and it was simply time for her to leave us.
As her brother walked me to the car, he said,” If there was anything my sister did that was wrong, please forgive her!”
This reminded me of how Kawiyah would come and seek forgiveness from me before embarking on her Haj.
As tears welled in my eyes, I muttered that there wasn’t.
I have always considered SLE to be a highly treatable condition, compatible with long life. To see Kawiyah succumb to the illness within a short span of two weeks raised many questions in my mind.
However, seeing how the family calmly accepting her death helped me to stop asking why.