Monday April 27, 2009
By S. INDRAMALAR
Pictures by SIA HONG KIAU
A double heart transplant survivor’s journey from the brink of death back to life.
AT a glance Joey Tee Hui Yi seems like your typical 17-year-old – she’s moody at times, likes to shop and loves dressing up and experimenting with make-up.
When she’s not at school or tuition classes, or when she’s taking a break from her daily revision, Hui Yi is hooked to her laptop, chatting with friends about … well, things teenagers usually chat about.
She has posters of her favourite celebrities – mostly Taiwanese artistes – pasted on the walls of her bedroom and, like most youngsters, the mess in her room takes on an order of its own. “Her room is always messy. She just leaves her things everywhere,” says her mother Dina Bato Sam Bua, apologetically, to which her youngest daughter whines, “Mum!” a little embarrassed.
Squabble though they sometimes may, Hui Yi and Dina Bato share a closeness that transcends a mother-and-daughter bond. Their unspoken intimacy developed in the sterile confines of the National Heart Institute (IJN) where Hui Yi spent a year and a half of her life, waiting for a heart donor.
Coming from Batu Pahat, Johor, the Tee family had to uproot themselves to Kuala Lumpur: Dina Bato remained at the IJN to be by her daughter’s side while her site supervisor husband Tee Ah Soon stayed behind to work though he would have liked to be by her side, and instead drove up as often as he could to see his daughter and wife.
Medical costs aren’t cheap: Tee says he has spent close to RM400,000 on Hui Yi since she was diagnosed in 1994.
“I have used up my EPF and savings,” he says. “But I am glad it has helped her live.”
Though the transplant charges were subsidised by the IJN Foundation (Hui Yee’s medicines and follow-up treatments are still free), there were still bills to pay. (A heart transplant operation costs between RM120,000 and RM150,000 and subsequent check-ups could cost RM20,000 a year. Thanks to donors, the IJN Foundation funds transplant operations for patients who are financially in need.)
Heart transplant survivor Hui Yi has lived most of her life with a weak heart – a condition that was diagnosed when she was just two years old. However, for the most part, she led a normal life. It wasn’t till her 11th year that she started feeling the serious effects of her condition.
“I started falling ill a lot and was weak and tired all the time. We went to the doctor and he told us that my heart was too weak; the only option was for me to have a heart transplant,” explains Hui Yi during an interview at her home in Batu Pahat recently.
Tee, Dina Bato and Hui Yi were dismayed at the news. Without wasting any time, they packed their bags and left for KL to seek treatment at IJN where Hui Yi was put on the waiting list for a heart donor.
“I was a little afraid but I knew this was what I had to do,” says Hui Yi as a matter of fact.
Her doctor, consultant cardiothoracic surgeon Mohamed Ezani Mohd Taib, explains that Hui Yi was diagnosed with idiopathic cardiomyopathy, a condition where the heart is failing for no known reason. Patients with this condition do not have an underlying heart disease; their heart’s failure could have developed after viral fever or some other cause.
“When she came to us, she was already undergoing treatment. But she started to develop arrhythmias which is abnormal heart rhythms and we knew there was a high chance she may suffer a fatal arrhythmia. That was why we put in the mechanical device to keep her alive,” he says, referring to a five-hour operation on Hui Yi in September 2006 to implant an external mechanical heart-assist device (weighing 9kg) to support her while waiting for a donor.
Hui Yi is the country’s second successful mechanical heart recipient; the first is Muhammad Fikri Nor Azmi whose surgery at IJN in 2005, when he was 18, was the first of its kind not only in Asia but also in Australasia.
Depths of despair
What Hui Yi did not realise when she came to KL was how much her life would change. Because she was becoming increasingly weak, Hui Yi had to stop school (she left school in 2004 when she was 11) and was confined indoors. Her move to KL in 2006 meant she was away from her family and friends. The hospital became her new home and her companions were her doctors, the ward nurses and fellow patients.
“After a while, I wanted to just give up. I was too tired to wait for a heart or to wait to get better. It was just too much,” Hui Yi confesses.
Her frustration is understandable: not only was she sick constantly and confined to her bed at the IJN, Hui Yi was not even sure she’d get a compatible donor heart.
However, things started looking up on June 15, 2006, when news of a possible donor began circulating in the hospital.
Unfortunately, the heart was found incompatible, marking the first in a long series of disappointments for Hui Yi and her family. Between June and October that year, there were five similar instances when her hopes of a possible donor were dashed – the first donor was overweight (over 100kg), the second was too young (five), the third donor’s heart was damaged, the fourth donor suffered from hypertension and diabetes, and the fifth was a hepatitis carrier.
To say that Hui Yi was in despair would be an understatement.
“I had had enough. I told my mum that I did not want to go on waiting and living like that. I was very scared and I did not know what was going to happen. I was sick all the time, could not go anywhere and no one could come visit me either. I just wanted to give up.
“Then I started getting letters from people all around the country … people I did not know who said that they were praying for me and supporting me. They wrote, ‘Cheh cheh (big sister), don’t be fed up. You must be strong. You are so beautiful and we are all here to support you until you get better’. This really touched me and made me want to fight. If so many people were counting on me, I could not give up,” says Hui Yi.
In October 2007, the family received good news. A match was found – the heart of a 15-year-old boy from Ipoh who was declared brain dead.
“We were really happy. Finally, a heart that matched Hui Yi,” recalls Dina Bato.
Hui Yi went into surgery on Oct 3 and, after a 10-hour surgery led by chief cardiothoracic surgeon Datuk Dr Mohd Azhari Yakub and his team of 34, she had her new heart in place.
Barely out of surgery though, Hui Yi’s system began to reject the donor heart. The situation was so bleak that doctors told Dina Bato to pray for her daughter.
Says Dr Ezani: “I can tell you that it was a very difficult time, especially for the family. When we first got news about a matching heart, everyone was really happy. But then, after the surgery, I could tell she was not doing well. I was really worried. I knew her body was rejecting the heart and the only other option was putting her back on the mechanical device but I knew her body would not be able to take it. It was definitely not the best of times.”
While Dr Ezani and his team were trying to figure out their next course of action, they received the all-important phone call – another match became available, this time the heart of a 20-year-old mechanic who was killed in a road mishap in Johor.
“At times like this, you just know that there is a higher force at work,” says Dr Ezani.
This time, there were no hiccups. Hui Yi’s operation was successful and after undergoing extensive cardio-pulmonary (to strengthen the lung functions) and neurological rehabilitation (to strengthen the brain) and recovering under observation at the IJN, she left the hospital for home in January 2008.
It’s been 18 months now since that traumatic day but Dina Bato still gets emotional thinking about the day she could have lost her youngest daughter.
Tearing, she says: “It was very scary. When they told me her body was rejecting the heart (after the first operation), I was scared. I did not know what to do except pray. Thank God there was a second heart. I can’t thank the donors’ families and the doctors enough.”
After her ordeal, it is understandable that Hui Yi has adopted a pragmatic outlook on life.
“Right now, I am just very happy to be alive. I am really thankful to my doctors at IJN because they helped me get a new life. I don’t know what my ambitions are as yet, but I guess the most important thing is to just keep living a healthy life with my parents.
“This is my new life and I will try to do as much as I can with it. At the moment, though, my focus is on my studies and on my PMR,” says Hui Yi who turned 17 on March 14.
Though there have been heart transplant patients who’ve lived for 20 to 30 years, Dr Ezani says the “standard average” survival rate is 10 years.
Hui Yi, however, is determined to live in the present and not think about what her life will be like in five or 10 years or beyond that.
“I don’t know. I don’t think about things like marriage or growing old … I just want to do as much as I can now,” she says.
Adjusting to “normal life” back home was easy, says Hui Yi. She was happy to be home and wanted only one thing really badly – to taste her mother’s cooking.
“I really missed home food and I asked my mum to cook all my favourite dishes like spicy chicken with lemon grass and ginger.”
Hui Yi herself is quite adept in the kitchen and she often helps her mum with the cooking but not the cleaning. The youngest of four siblings, Hui Yi has two older brothers and one older sister who are working in Johor Baru and Singapore respectively.
Dina Bato says that there are differences in her daughter’s behaviour and temperament.
“The doctor warned us that she may not be the same … he told us not to expect Hui Yi to be way she was. But we are just so happy that she is fine and healthy,” says Dina Bato.
Nodding, Hui Yi adds: “Yes. I have become more impatient and hot-headed now. If my parents ask me the same question more than twice, I snap at them. Or if they say they will do something but don’t, I get angry. I am also easily irritated and moody. I wasn’t like that before.”
Having her plight highlighted in the media made Hui Yi a celebrity of sorts back home and she found herself invited to dinners and gatherings organised for her benefit.
“I have to be careful about what I eat. If I eat at stalls or anywhere outside my house, I have to make sure the food is prepared hygienically,” says Hui Yi.
Apart from her diet, she has to be careful not to expose herself to germs and risk infection. She can’t participate in active sports for now. “I cannot be too active or exert myself too much. My doctor told me I should not fall hard as it could disturb the heart or something like that. I cannot bear to be around cigarette smoke and I hate the heat,” she shares.
Many heart transplant patients are able to do many things – some have run marathons, travelled the world and gone back to life as they knew it, more or less. There have been those who have lived long enough to see their children grow up and have their own families.
They have to remain on life-long immunosuppressant drugs to avoid the possibility of rejection. A transplanted heart can fail if the body rejects the donor heart, or if there is infection, or if the patient on anti-rejection drugs develops transplant coronary artery disease.
“I take two pills early in the morning, at about eight, then I take five pills mid-morning and another five at about 10 at night. Then I have two pills which I have to take on alternate days. I have to take them for the rest of my life,” says Hui Yi.
Going back to school was a little tough, even though she looked forward to meeting all her friends whom she hadn’t seen in a while. “It was difficult at first. I felt a little embarrassed joining the Form Two class when I was already 16. But I was sick and missed so much (school) being in hospital and I had to catch up.”
That was a year ago. Hui Yi is now busy preparing for her PMR examination which she will sit for later this year. Though the exam is her priority, she has found time to indulge a little in her hobbies – singing and fashion.
Early this year, Hui Yi was included in a Chinese New Year compilation album featuring several local Chinese artistes where she sang on one track.
‘’It was a wonderful experience to record the song as it was my first time,’’ she says, adding that the album and song are titled Happy that the New Year Is Here.
She has enrolled in a short make-up course – she is about halfway through – and is quite the shopaholic.
“I like singing and I love fashion; I like to look beautiful,” she says with a shy smile.
Coyly, she fiddles with her computer and shows us some photos she took of herself in some of her new clothes.
Anyone looking at the confident and beautiful girl in the photos would have a hard time believing that just over a year ago, she almost didn’t make it.
Though they worry about her well-being, Dina Bato and her husband try not to be overly-protective of their daughter.
Hui Yi hangs out with her friends and cousins at some of the Batu Pahat hotspots – the beach at Minyak Beku, Taman Batu Pahat and the many malls in town.
“My friends will come pick me up and we’ll go hang out. Not every day … but on weekends sometimes. What do we do? Just chat, about our favourite stars and so on,” she says.
Like most teenage girls, Hui Yi has had her fair share of crushes.
“Am I interested in any boys? Sure I am … but that is my secret. I can’t let my parents find out,” she says, smiling shyly. “It’s embarrassing.”
Though it’s been 18 months since the opera tion, Hui Yi still gets asked about what she went through, not that she minds.
“I am so happy to talk about my experience if people want to know. I feel good talking about what I went through and how I felt at the time,” adds Hui Yi.
Hui Yi admits that she sometimes shudders to think what might have been if the second donor heart had not been available. She tries not to think too much about it, though, and instead reminds herself of her “new life” and how she should make the most of things.
“My cousins and friends say that I was so brave. But I don’t know if I was really that brave. I really don’t know how I found the strength to pull through. I am just glad that my mother was by my side all the time,” she says.