Life is a series of hurdles for 28-year-old.
I MAY appear as normal as the next guy, but if you look at my nails, you will find them enlarged and purple in colour. It is the only visible sign of a condition that has been with me since birth. It is called congenital right univentricular isomerism. To put it in non-medical terms, I was born with the heart of an amphibian. A normal human heart has four chambers; I only have three as the lower two are joined as one chamber.
For the most part, life has been pretty normal. I had an enjoyable childhood, though some incidents are etched in my mind. I remember my mum and teachers repeatedly told me that fingernails were pink, as I always coloured them blue in my drawings. I didn’t realise it back then, but I coloured the nails blue because I had never paid attention to other people’s nails. Secondary school and university days were great too, although the spectre of an early death never truly left me.
There were bouts in between when I was unwell, and had to be hospitalised countless times. Usually, it was because I had an episode of supraventricular tachycardia, an abnormal rhythm of the heart that sent my pulse rate over 160 beats per minute and left me weak and sweaty on the stretcher. Lying there while waiting for the drugs to work, with my school shirt plastered to my sweaty body as the hospital’s air-con chilled me to the bone … that must probably be the most unpleasant sensation, or so I thought.
Still, I do not have the right to complain. Many who are born with my condition don’t even get to see their first birthday cake. Rarer still are the ones who make it to their teens.
At 28 years old, I can truly count my blessings. I did a bit of travelling, enjoyed the sights and sounds of different cultures, and had a taste of what normal life is.
Unfortunately, it looks like time has caught up with me. On the night of Aug 10, I was completing a translation job when I started coughing and felt something sticky in my throat. I took a glass of water, and a few seconds later, I was coughing into a sink. Then, for the first time, I realised how red my blood was.
I wasn’t overly concerned as I thought I had scratched my throat as a result of gobbling too many peanuts.
My parents sent me to the hospital just to make sure it wasn’t anything serious. The medical officer who was attending to me insisted that I should be hospitalised though I tried to wrangle my way out of it.
In hindsight, I’m glad I was in hospital because I started coughing out a lot of blood before the night was over. For the first time in a long while, I felt scared.
Over the next few days, the Malacca General Hospital (MGH) contacted the National Heart Institute (Institute Jantung Negara, IJN) and the Respiratory Medical Institute, but there was nothing they could do.
The specialist was tearful when he told me there was nothing he or his team in MGH could do to help me.
All through my life, doctors have always told my parents I would not make it far. I’ve proven them wrong up to this point.
My friends and family won’t let me quit that easily. They sought treatment far and wide, and I landed in Singapore General Hospital (SGH). There, the doctors ran test after test, culminating in the conclusion that everything in my body was normal. They could not explain the cause of the bloody coughs any more than our Malaysian doctors could.
They did, however, propose a series of surgical procedures that might reduce or eliminate the problem. When I heard about it, I thought my problems were solved. Even though the surgeries were high-risk, I was willing to take my chances if it meant I could fulfil my promise to attend my little sister’s convocation and wedding.
I returned to IJN, where I was told that the surgery proposed by SGH was highly inadvisable, as the risk of me dying during surgery was between 70%-80%. Again, my hopes were dashed.
During the later part of last month, I was spending more time in hospital than out of it. It became a repetitive process, whereby I would cough up copious amounts of blood and get myself hospitalised on a Sunday, and be given large amounts of tranexamic acid and fresh frozen plasma to stop the bleeding. The measures worked … for a while. I was usually discharged on a Thursday, no longer coughing blood. By Saturday night and Sunday morning, the medication would have worn off and I would be coughing blood again.
Going in and out of hospital for days on end is extremely tiring and stressful.
My parents have to take time off from work to look after me, and that weighs on me, too. When you’re in hospital, people often tell you not to worry about the cost. However, it’s impossible to push that out of my mind. The hefty medical bills bother me, of course.
I honestly could see no way out at that time. I had been coughing blood for more than a month and the drugs were barely keeping it at bay. Finally, on the night of Sept 29, I signed a “do not resuscitate” form. The prospect of living in a hospital for extended periods of time was no longer bearable.
Perhaps some people would consider this as giving up. I disagree. Elisabeth Kübler-Ross, an American psychiatrist, outlined the five stages that terminally ill patients experience: denial, anger, bargaining, depression and acceptance. At this point, I have accepted the fact that there is no cure for my condition presently. Maybe there will be a cure one day, who knows?