MY renal function has deteriorated further since last December. It got so bad that my name is firmly on the list for the Tenckhoff catheter insertion in July. This is to allow me to perform peritoneal dialysis to remove toxins from my blood.
Truth be told, I am anxious about how my life would become after that. The uncertainty is worrying. This will be the biggest challenge after my spinal cord injury 34 years ago. It will become as much a part of my life as my paralysis. But this surgery is not the only hurdle I have to face.
The kidneys produce a number of hormones like erythropoietin, which stimulates the production of red blood cells, and calcitriol, which regulates the absorption of calcium and phosphate. My worsening kidney condition has interrupted the normal production of these hormones.
Blood tests have indicated I am suffering from severe anaemia. The results progressively worsen with each test. To counter this, I was prescribed folic acid, vitamin B complex, iron, and calcitriol. Unfortunately, the levels have kept dropping even with the supplements. The doctor is worried this would affect my surgery.
Consequently, I have to take epoetin. This drug induces the bone marrow to produce red blood cells. One dose costs RM176 and I need one dose every two weeks to treat the anaemia. The doctor mentioned I may have to stay on this regime for life.
My wife has been helping me to administer the drug by injecting a prefilled syringe under my skin on the abdomen. The procedure is simple and relatively painless. She has become very good at it. My red blood cell level has normalised after being on it for the past two months.
On the other hand, the most recent blood test showed the iron level in my blood has not improved. In fact, it has gotten worse compared to test results from two months ago. The iron supplements that I have been taking have not been effective in ramping it up.
The doctor decided the quickest and most effective way to increase my blood iron level was through intravenous infusion. My wife took leave to accompany me to the hospital. We spent four hours at the day care ward to go through the procedure on Friday.
I felt very vulnerable as I sat on the intravenous infusion chair. I always have this overwhelming feeling of helplessness whenever I have to be away from my wheelchair for long periods of time. That is the reason I dislike activities that require me to transfer out of it.
As the minutes ticked by and the solution dripped down from the bottle drop by drop, I regretted not bringing a book or headphones along. My time could have been spent more productively reading or listening to music on my phone. Four hours was too long to be wasted just like that. All was not lost as I eventually discovered. I had many good opportunities to observe the goings-on around me and learnt a lesson or two.
The ward was not busy. Patients came and went. Some were in for blood transfusions. Some were there for their dose of chemotherapy. Others like me had iron infusions. Some were old and frail, while others were young and full of vigour. That taught me that illnesses and diseases do not discriminate. They could strike anyone, at any age, at any time.
Beside me, a man slightly older than me was there for his chemotherapy. He recounted the story of how the doctors discovered he had cancer in the lungs after he had repeated episodes of breathing difficulties. It was successfully treated. Sadly, the doctors later discovered cancer in his brain. He seemed determined to fight this second episode.
A few seats from me, two young women were chatting animatedly while waiting for their respective drips to finish. They were sharing about their diets, their life, and how they were managing their treatments. I did not mean to eavesdrop on their conversations but they were loud and cheery. I was unwittingly infected by their positivity as well.
The upbeat spirits of these people in spite of the struggles they were going through gave me more reasons to trudge on. I realised that what I am going through now is not an exception. We each have our own trials and tribulations to contend with. And we have to make the best of things regardless of the problems that are weighing us down.
I may have accepted dialysis is the way to go to prolong my life and make me feel better but the bitter reality of having to keep at it for the rest of my life is intimidating to say the least, not to mention the costs that I have to bear in the long term.
I may not be able to find all the answers I am searching for regarding what I am going through but I learnt a valuable lesson that morning. Being alive is the most precious gift one can ever have.
The people who came in for treatments were all doing the best they could to stay alive. Everything else was secondary. I will strive to do the same too.
Little did they know their very presence there inspired me to put in more effort to fight on. It was a morning well spent indeed despite the discomfort of having a needle in my vein and the long hours waiting for the iron to be infused.