23 November 2010

ONE of the most frightening things about getting sick and getting a diagnosis is what comes next. Whatever that may be, the one thing many people don’t want is to be alone.You would have had a Fear Factor experience about what you may be suffering.
When the doctor tells you and your illness becomes somewhat official, you are never really certain of how you actually feel — relief perhaps, that it was what you had always suspected, or fear, because it was something you have been trying to deny and avoid.

It could be cancer, diabetes, heart problems, loss of vision, loss of hearing, some sort of tumour, internal wounds, some, or all of the above. Whatever it may be, it is something you have to deal with long term.

My late mother found out she had diabetes when she was in her 40s. It was a secret she kept from the family in general and shared only with a select few. Later on, we found out that not only did she have diabetes but also other related diseases which she used to joke about, calling them — hypertension (high-blood pressure) and high cholesterol — a “packaged deal”.

Unfortunately, she kept this secret so long that we only found out when she was admitted to the hospital for hypertension. By that time, she was also already on insulin injections with a host of other medications for her packaged deal.

Looking back, at the time when she was first diagnosed, we (her children) were overseas for our studies. When we came back, each of us got married one by one across a span of more than a decade. In the mean time, she progressively and silently got worse with no one the wiser, except perhaps her doctors. She was not particularly diligent about her health but kept herself in check whenever she felt unwell.

During those years too, we were all so busy with our lives — starting a career and family — that the best we did about our health was perhaps discuss about when we should start “going on a diet”.

We were more focused on our selves because our parents seemed well and robust otherwise. Remember, this was about 20 years ago when dieting was a trend and done for all the wrong reasons. It was the early days of health and fitness where everything was experimental from food type separation to “The Zone” and so on.

It was when I had my first baby that my mother started to discuss about taking care of one’s health. As she took care of me during my confinement telling me the dos and don’ts after childbirth, we chatted and shared about the family’s health and medical histories. We had the time to bond — me, learning the ropes as a first-time mother, and my mother, playing her role as nurturer and caregiver.

When that baby of mine, Omar, was very ill, she came to the fore. Among the many questions doctors always asked for was the family’s medical history, in this case, particularly about epilepsy, hypertension, asthma and heart diseases, followed by cancer and a host of others on their list.

It was then that her medical history was revealed to me. This very same line of question about family medical history came to a full circle when my mother needed to visit several specialists in the various fields of her illness like an endocrinologist for her diabetes, nephrologist for her kidney problems, cardiologist for her heart, ophthalmologist for her eyes and gynaecologist for her general feminine health.

It suddenly dawned upon my mother that the packaged deal she had laughed at all those years was coming for her with a vengeance. She was frightened and anxious. I only realised how frightened she was when she was hospitalised because she could not breathe. None of us had a clue of what was going on then.

We thought it was heart attack but it wasn’t. Neither was it pneumonia or asthma. All we knew was that her lungs and heart had water, as it was told to us. Then the doctors explained in detail that due to the extent of my mother’s diabetes, she had succumbed to kidney failure which affected the functions of her lungs and heart. She needed to go for haemodialysis.

Before the dialysis could begin, a fistula needed to be installed. A fistula is basically a vascular access to the blood to be removed and returned through the dialysis machine. Our own veins are not capable of such continuous and high volumes of blood flow for four hours of dialysis per session, three times a week so a graft is usually put in through a minor surgery.

My mother had an AV (arteriovenous) fistula graft surgically installed in her arm. The graft looked like a tube that connected an artery directly to a vein.

This connection caused more blood to flow into the vein. As a result, the vein grew larger and stronger, making repeated needle insertions for haemodialysis treatments easier.

This is usually done for people who required long-term dialysis. It takes two months of “resting” before the graft can be used for dialysis. In some patients, it can take longer.

My mother had never undergone a surgery before, and the thought that some of her body parts had failed, frightened and depressed her. The thought that she had to be hooked up to machines for a few hours regularly to keep her body functioning was like a nightmare right out of some science fiction for her. And now she was required to have a surgery so that a tube-like thing could be surgically installed into her.

So she resisted the procedure for as long as she could. She was totally reluctant to take this step. She had a hard time trying to deal with the fact that her diabetes had got the better of her and that she was losing the battle.

She needed to come to terms with her situation.

Subconsciously she had known all along that diabetes would and could have serious consequences if it went uncontrolled. Yet, when the moment of truth rolled by to reveal that she had embarked onto the next stage, she found herself asking: How did it come to this? Where did she go wrong?

As my mother finally relented to the surgery, she told me that I should take this seriously myself. I am, after all, her daughter and therefore, we shared this history.

“Learn from my mistakes,” she said to me. “Don’t let yourself become like me, like this,” as she pointed to her arm bulging with a pulsing AV graft. She would say that many more times to me as I sat beside her during her numerous dialysis sessions over the years.

My mother was not the only one absorbing and realising a new reality. It hit me then that what my mother went through could be me 20 years down the road.

The writer is a volunteer at Special Children Society of Ampang. After more than two decades of grappling with the system, she finds that the whole experience is really just one big learning curve. You can reach her at juneitajohari@yahoo.com.

This article was published in www.nst.com.my on 2 October 2010.