How do you feel when a doctor told you that your 25-year old recently graduated daughter needs a liver transplant? It was nothing short of devastating to say the least. That was a month ago. A day after her graduation. I was in this zombieish state ever since. Last week she was admitted to the Selayang hospital for the initial tests after she was referred by the HKL Paediatrics Institute. Yeah, Paediatrics! A bit of history. In 1988, after she was born, this daughter of mine was diagnosed with biliary athresia (BA). A congenital condition. The ducts that allow the bile to flow from the liver into the intestine was not fully formed. Resulting in the bile being retained giving jaundice to the eyes and bodies and damaging the liver. The condition was discovered after a couple of weeks of continuing jaundice. It was a semi emergency, the doctor called for immediate surgery. A procedure called Kasai Operation was performed. In lay man’s term, the surgery stitched up the intestine directly to the liver. So I was told by the consultant paediatrician. It was a sort of stop gap measure to allow the bile to flow into the intestine. Miraculously she recovered but we were very cautious because ever so often bacteria would swim up form the intestine to the liver and damaging the liver further. The doctor told me it is called ascending chulangitis. She would need to stay in hospital for 7-10 days to run the full course of the antibiotic to recover. She had several episodes of the attack in her formative years and it was rarer and rarer as she went into primary and secondary schools. We moved from Kuching to KL partly to facilitate her treatment. frequent trips from Kuching to KL were too taxing for both of us. At one stage my wife had to had her salary deducted for taking unsanctioned leaves.
For the past 20 years or so, we were lulled into thinking that she had fully recovered. She went to university to do a degree in interactive Multimedia. She even went to Cambodia to do a four-month internship. She even missed her annual check up for a couple of years due to her heavy students life schedule. Things began to slowly degenerates when she came back from Cambodia in May. in August, she couldn’t really enjoy her Raya as she was suffering from bouts of vomitting and fever. The jaundice started to show in her eyes, and she tires easily. Being a very active girl, it was difficult. On top of that her joints started to be painful and her feet began to swell. The day after she graduated we took her to the doctor who had been chronicling her progress since she was a baby. And we were told that what was a possibility 20 years ago now fast becoming a reality.
She had difficulty walking and had to be confined in bed. Last week she was finally referred to Selayang Hepatology Clinic. What was supposed to be a four-day initial investigation hospital stay has now gone a week. She was discovered to suffer from athritis – that explained her joint pains. We cannot even hug her, she’ll scream in pain. Her whole body aches. The worst was last Thursday when her temperature rose to 39.7 degrees. Apparently the immune system is attacking the joints. Doctors are still trying to figure out why.
Family and friends have been very supportive.The whole gang came from Kuching last week and today. Uncles and aunties from Perak and Kedah also turned to give support. Not to mention her numerous friends that sometimes turned bed 3, ward 10D into festivities. I am really thankful. I have no idea how much longer she is going to be there. The initial transplant procedures has started. Be strong my girl. I’ll try to chronicle her daily progress, so to speak.