It Is Expensive To Be Sick

Sangobion, KY Jelly and Ketosteril

Yesterday was my scheduled medical check up at UMMC. As I am holding the card issued by the Department of Social Welfare Malaysia for disabled persons, doctor’s consultation, medical tests and medicine are free. These are Detrusitol, Lactulose and other supplements. Those would have cost RM200 per month if I had to pay for them. Apart from that, I am also taking Ketosteril to supplement my low-protein diet and Sangobion for anaemia, both of which the hospital does not provide. One box of 100 Ketosteril tablets costs RM260. I need two boxes per month. That is the minimum. The recommended dosage is 4 boxes. I also bought several other items, namely KY Jelly and one silicon foley catheter, which are cheaper at the UMMC pharmacy than other places. The bill came out to RM1109.20. This is where most of my income from online activities go to. What people say is true – money cannot buy health. Given a choice, I would rather be healthy and happy than wealthy. No, I am not rich either. That makes it doubly painful.

All Is Not Well With My Kidneys

Wuan took me to UMMC for my scheduled medical check-up today. The blood test revealed that my serum creatinine has hit the roof again – 289umol/l. This is the highest level yet. and is an indication that something is not right. I had to see the dietician to review my low-protein diet again. I have been stuffing myself with rice to appease the hunger pangs during meals. My allowable daily rice quota is one bowl but I have consistently blew it by adding another bowl into each meal. Rice contains protein. This I have to replace with fruits from now on. Fruits too contain protein but in lower amounts than rice.

In addition to Detrusitol for my overactive bladder, and Lactulose and Dulcolax for my bowel management, Dr. Chung, the doctor on duty, also prescribed calcium (calcium lactate), iron (ferrous fumarate) and folic acid tablets. According to him, after so many years of not walking, my bones would have become osteoporotic. The fact that I have not been keepng to my standing exercises aggravated the condition. The calcium supplement was to reduce the osteoporosis. The iron and folic acid tablets were to replace the Sangobion that I have been taking for aneamia. He also wrote a referral for me to see a urologist to perform a urodynamic test to determine the pressure in my bladder. Looks like I have to go back for a series of tests and to collect my medication on a regular basis from now on. That I have to do nonetheless in order to maintain the health of my kidneys and other complications associated with spinal cord injury.

Where Do I Go From Here?

Waterlily - after the rain
After the rain.
Photo by Wuan.

The damage has been done. There is absolutely no possibility of reversing the condition. Vesicoureteral reflux is one of the main causes of my chronic renal failure. Other contributing factors include several episodes of acute and chronic urinary tract infections, diet, travelling and stress. What is certain is that my kidneys will continue to fail up to a stage where I will need dialysis. That is the prognosis.

Accepting the condition, no matter how bleak the prognosis, is the only way to move on. I am one who likes to work with a lot of slack but this is not giving me much space to manoeuvre. Each time I think about it, I could feel the noose tightening around my neck. Living with so many restrictions, especially in my diet and the need to catheterise every three hours, is difficult but not unachievable. Adjustments have to be made.

Trips out have to be carefully planned. If need be, there must be food outlets nearby that are willing to cook to suit my diet or serve food that are suitable. Meals have to be taken at appropriate times to accomodate my medication. Clean accessible toilets have become even more important now. Water intake has to be regulated in order not to over or under-hydrate.

Those routines must be strictly adhered to from now on. Detrusitol must be taken one hour before food twice daily. The three doses of Ketosteril have to be spread out to optimise absorption. In between that, intermittent catheterisations have to be performed three-hourly. I am gradually getting used to this regiment. It is imperative that I abide by it to slow down the progression. This has become a do-or-die routine and I have chosen to live a little longer.

Where do I go from here? I asked myself that question a while back when I was struggling with housework and trying to maintain my diet. The weeks of soul searching after those weeks of depression has made me realise several things. The situation is neither as bad or as hopeless as it seemed. What I needed to do is to continue moving. Whether I like it or not, if I allow myself to wallow in the depths of despair, the world will continue to march on, with or without me. It is either that I keep up or be left behind. The competitive person that I was and still am, I dislike being a back marker.

This is one of those potholes in life. Sometime all is smooth. Sometimes it is a bumpy ride. I have survived twenty two years. I pray for another twenty to accomplish the things that I have set out to do. Knowing my own melancholic nature, depression will be a constant companion, more so when I can hear the seconds of my life ticking away loud and clear. There is a need to balance my emotional volatility in these areas. Keeping the occasional anxiety attacks at arm’s length will not be a simple task

However, I know for sure that Wuan will always be there to give me that little push from behind to keep me going. She is heaven-sent – an angel who is always there to brighten up my days. I have prayed for and have been bestowed with a purpose in life. I believe that when I bring hope for others, I am bringing hope for myself. There may be kinks along the way to slow me down but which of life’s major journeys do not? Despite what I have lost I can still count my blessings. There is only one way for me to go now. That way is forward, undoubtedly.