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.
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.
Outside Hospital Pantai Indah, Pandan Indah – 4.15pm.
My kidneys are failing. That is an irrefutable fact. Their condition will only worsen with time. There is no way to determine whether the deterioration will be gradual or sudden. All I can do is to continue to be aware with the dos and don’ts of chronic renal failure and hope that their decline will be arrested.
When I was back in Penang recently, I did not have time to go for my scheduled check-up due this month. Since Wuan is on leave today, we spent almost the whole day at Pandan Indah. In the morning, I got my blood tested and had an ultrasound of my abdomen. In the afternoon, we saw Dr. Lim, the Physician and Nephrologist at Hospital Pantai Indah.
My serum creatinine had risen to 271umol/L from 258umol/U when it was tested in February. Although the calibration of the testing equipment of different laboratories varies, the serum creatinine count still shows an increase. My protein intake has to be further reduced in order not to strain the kidneys further. The three portions of meat that I was allowed is further reduced to two now.
Protein is needed to build, maintain and replace the tissues in the body. Protein provides the body with essential amino acids for such purposes. My low-protein diet, if not properly managed will result in protein depletion. This will cause a host of health problems from anaemia to osteoporosis. Symptoms for both are manifested in my blood tests and rippled finger nails called koilonychia.
Ketosteril was prescribed to supplement my low-protein diet with essential amino acids and Sangobion for my anaemia. Those are expensive drugs. One month’s supply of Ketosteril and Sangobion costs nearly RM600. That is not inclusive of Detrusitol that I am taking to relax my spasmodic bladder which is the cause of my renal failure in the first place. One month’s supply of Detrusitol costs RM170.
To cut down on the expenses for Ketosteril, Dr. Lim has suggested a “drug holiday” where I go without Ketosteril for Saturdays and Sundays. To maintain my protein intake, I have to increase it from 29gms of protein on weekdays to 36gms of protein on weekends. 36gms of protein will allow me three portions of matchbox-sized meat.
This progression is not something that I did not expect. Because of my spinal cord injury, I knew full well that renal failure will be one of the problems that I will have to come face to face with. Nevertheless, the thought that my kidneys may totally fail one day in the future is extremely unsettling. When that day comes, dialysis will be the only solution. That will be an expensive therapy and one that will restrict many aspects of my life. I pray that that day will never come.