When ignorance is not bliss

A CHILL ran down my spine as I stepped into the ward. In the large open space, there were two rows of complicated-looking machines. Some were hooked up on patients who appeared to have dozed off. Nurses – garbed in caps, masks and gowns – were busy going about their duties.

I was overcome by a deep sense of despondency as I looked at the patients.

“This is how I will eventually end up,” I told myself. The receptionist asked what I was doing there. I showed her the letter from the doctor. She asked me to press for a queue number and wait for my turn. When I was first referred to the nephrology clinic, the doctor suggested that I go through an orientation at the hospital’s daycare dialysis unit. It was to familiarise me with what I had to do in preparation for the day when my kidneys could no longer remove waste and excess water from my body as it should be.

Every time I went for my scheduled review, the doctor would ask if I had gone for the orientation. My usual answer was that I knew what the procedures were as I had spent a lot of time reading extensively about them. This went on for the past three years until the doctor I saw last Wednesday put her foot down.

“Reading about it and seeing how it is done are two different things,” she told me sternly. “I will write a letter for you to go today.”

She was insistent. There was no way for me to wriggle out of it any more. My kidney function had deteriorated steadily over the years. It was a matter of time before they would fail totally. She knew I was well aware of the situation. It must have been noted in my medical record. I felt deflated and defeated when I agreed to go for the orientation.

There was more to my reluctance than the excuse I gave to the doctor. My game plan was to delay the need for dialysis for as long as possible with a low-protein diet and regular emptying of my bladder to prevent a reflux of urine back into the kidneys. In my mind, I would be crossing the Rubicon the moment I subjected myself to that process of preparing for dialysis.

I had brooded, grieved and shed tears over the state of my kidneys. I eventually came to accept that it was a condition that I could not change. I thought I had already gotten over the despair of having a potentially life-threatening disease, apart from living with severe physical impairments when I was shocked by another diagnosis.

Recently, the doctor found that I was severely deficient in Vitamin D due to the kidney disease. An ultrasound report also indicated that I had plaque in my carotid arteries. If these arteries became partially or totally blocked, the reduced blood supply to the brain could cause a stroke. The saying that when it rains, it pours cannot be truer than this. And there I was, waiting for my turn at the dialysis daycare unit and feeling disheartened all over again. As I dreamily observed the machines doing their work on the patients, I wondered what was going through their minds as the machines drew blood out from their body, cleansed it and pumped it back in.

Did they feel the same anxieties I was feeling at their orientation?

My queue number was called. A nurse sat with me to go through the options of dialysis. We agreed that Continuous Ambulatory Peritoneal Dialysis (CAPD) would be a better choice for me. It would give me more freedom compared to being hooked up to a haemodialysis machine three times a week for up to five hours per session.

In CAPD, the peritoneum – a thin lining inside the abdomen – is used as a filter. A liquid called ‘dialysate’ is run into the peritoneal cavity through a surgically-inserted plastic tube in my abdomen to draw waste through the peritoneum. The process of filling and draining the dialysate, called an exchange, has to be done three to five times a day.

The nurse then went on about the cost of the treatment and explored with me on the various ways that I could get it funded. The surgery to inset the tube alone costs RM5,000. Without subsidy, the monthly cost of dialysate would amount to RM2,700. All these have to be factored in and considered as well.

Before the session ended, the nurse advised me to do all I could to delay dialysis for as long as possible, taking into account the expenditure that I would have to bear and the health risks associated with the procedure. She added that if I had questions regarding the process, I could always go back to the unit and ask.

In trying to make sense of all these health complications that were beleaguering me, I consoled myself with the fact that I had been doing intermittent catheterisation five times a day for the past 25 years. The added task of having to perform the exchanges when they are needed should not be a problem. If it is something that I have to do to keep myself alive longer, then I have to suck it up and do it – no matter what.

I used to think dialysis will be the beginning of the end for me. Having gone through the orientation, I now have a better idea of what is needed and necessary. When that day comes, I will see it as the beginning of another beginning rather than the last chapter of my life.

The doctor who made me go through the orientation was right. What I thought I knew from reading was totally different from the information that the nurse at the dialysis daycare unit shared with me.

I would be lying if I say I am not worried, but knowing what to expect has reduced the anxiety substantially.

In this case, ignorance is not bliss.

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