The above NF2 patient, Lim Pei Lee, passed away at 6.30 pm this Thurday, 15 November 2012,
Malaysian time.
http://limpeilee.webs.com/
I had not kept in touch with her for the past year, but found ouf from Yvonne Foong's
(one of the four NF2 patients in the country that I know of) website that she had gone
for surgery at the local General Hospital by the Chief Neurosurgeon there for multiple
tumors along her brainstem and spine.
I called her home, and her father related that she lost the use of her left arm after the
surgery, as the surgeon had to cut thru some nerve fibers at critical regions to take out
a tumor. Her dad said the tumors were "quite large".
She had in fact lost the use of both legs this April, which coincides with the last entry
in her own blog. She was supposed to have been operated on by her primary neurosurgeon
at the local University Hospital in Petaling Jaya at the end of last year, but the guy seemed
to be "too busy" and then went for some seminar in the US for a month. Returning, he told
them that he had changed his mind and declined to operate.
She became crippled not too long after that.
Inevitably, her dad said a huge bed sore, some 4 inches wide and very deep, exposing
her spine, developed at her back. Several days ago, she developed a fever and lost
consciousness. Her dad admitted her into the local poorly equipped district hospital
in Klang town, near where she lived.
She recovered consciouness the next day, but then deteriorated. Apparently urosepsis
had set in, and her airways became clogged with mucus. She had been placed in the
packed women's ward, on a free bed placed along the walkways as there were numbered
beds left.
Her father complained to me that nobody was attending to her, and he was told to buy
his own mucus suction pump when he asked for one. (You can find such simple pumps
in any small private clinic around here.)
I called up the hospital, demanding to speak to the administrator or Chief Medical Officer,
but was told by a dumb half-past-six Malay female operator that "everyone was on leave
as it was a public holiday". She extended me to her ward, where nobody answered.
Further calls asking for the assistant administrator or MO fell on the idiot woman's ears,
and I was passed all over the place like a football. Fed up, I tried the ambulance line, hoping
to speak to any emergency MO there. NOBODY answered.
Finally, I asked for the Sister-On-Call, where luckily a professional sounding Chinese woman
answered. Relating the situation, I told her that if I made a complaint to the Health Ministry that
her dad had been told that the entire hospital had no suction pump, and that no one answered
their ambulance line, the hospital would be in serious trouble.
She promptly promised that she would go straight up to her ward and made sure Pei Lee was
attended too, and said she would call me back to keep me updated. However, her own busy
schedule resulted in her calling me only around 7 pm, informing that the girl was "very critical"
and asking her dad to come down to see her, as he was not around earlier at 4 pm when she
went up.
I called her dad, coudn't reach him. I drove down to the hospital, some 20 miles away, asking
for directions along the way, as I hadn't been there since 1988, reaching there at about 9.30 pm.
Going up into her ward was like entering a 19th century sanitorium filled with coughing slum
dwellers infested with the plague. Staffed by young interns looking like kids, most of them and
the nurses wore masks. I was wondering if I might catch some serious Klebsellia or
Pseudomonas infection.
Enquiring about her at the nurses' counter, I was told that she had already passed away at 6.30 pm.
Probing about the cause of her death revealed urosepsis. This dangerous superinfection, which
tends to affect women, and even in the best of times with a team of experenced specialists
treating it aggressively in the ICU, carries a mortality rate of 40 per cent.
With her pathetic treatment surroundings, looked after by interns who had never even
heard of NF2, she didn't stand a chance.
