Stage 4 Chronic Kidney Disease

In 2004, I was diagnosed with Stage 3 Chronic Kidney Disease with a serum creatinine of 188 umol/L. At this stage, the kidneys are moderately impaired with decreased function to filter out waste products from the bloodstream. The urologist put me on 1mg Detrusitol twice daily and advised me to continue perform clean intermittent catheterisation (CIC) every four hourly which I have been doing since 1991. That is to reduce the occurence of urine reflux back to the kidneys and damaging them further.

By the following year, my serum creatinine climbed to 262 umol/L and bumped the diagnosis to Stage 4 Chronic Kidney Disease (CKD). I have been living with Stage 4 CKD for the past seven years. At Stage 4, there is advanced kidney damage. It is likely that I will need dialysis or kidney transplant in the future. There are five stages of chronic kidney disease altogether. Stage 5 CKD is known as end stage renal disease (ESRD). This is the final stage of kidney disease where the kidneys have lost almost all their function and dialysis or kidney transplant is needed to live.

I have not thought much about how serious my kidney failure was until recently when I read up more on this disease. At Stage 4, my kidneys are teetering on the brink. Dr. Liong, the urologist at Lam Wah Ee Hospital in Penang, had warned me that life will be difficult not only for me but the family as well should I need to undergo dialysis. It will be a drain on finance and time. Each dialysis treatment costs about RM200.00, requires four hours and has to be performed three times per week. That was the reason he kept reminding to mantain my remaining kidney function as much as possible by catheterising religiously, cut down on protein intake and avoid red meat.

My low-potein diet is basically two matchbox-sized portions of meat per day. I am also to cut down on the intake sodium, phosphorous and purine. High phosphorous level in the bloodstream causes itching. I cut down on the consumption of carbonated drinks, dairy products, peas, beans, nut and chocolates. Purine is metabolised into uric acid. My kidneys are unable to keep the uric acid level optimal. This could lead to gout. To prevent this condition, I avoid spinach, cabbage, cauliflower, organ meats, sardines and mackerels.

Stage 4 CKD is associated with a host of symptoms that I have been experiencing for the last few years. I get exhausted easily because of anemia which is common in people with kidney disease. This condition is exacerbated by the fact that I also have alpha thalassemia trait that causes anemia and small red blood cells. The other apparent symptom is short attention span. This could be the reason why I have been unable to finish the books I have been reading and the lack of updates in this blog lately. I just could not keep my mind focused on one single task long enough to see it to completion.

Chronic kidney disease increases the risk of cardiovascular disease. This is already manifested by my undesirable cholesterol levels that necessitated the long term use of Lipitor to bring my cholesterol under control. The good news is that the electrocardiogram done in November last year did not show any problem with the heart. The other good news is that after a two-month therapy of Lipitor, my cholesterol levels showed marked improvements. At the same time, I did not suffer the potentially kidney-damaging side effects associated with the medicine.

Considering that the sword of Damocles is hanging over my head where my kidneys are concerned, I am quite laid-back about it now as compared to when it was first diagnosed, not that there is much I can do to reverse the condition. I can only slow down the progression of the disease by going for regular check-ups and following the advice of doctors and dieticians.

Of course there were the occasional anxieties, especially just before getting the blood test results or after indulging on more meat that I should. Otherwise, my daily routine is least disrupted. I am determined not to let it affect Wuan’s and my quality of life. It has not so far. My greatest hope is that the kidneys’ current condition will to hold for a long time to come. From the looks of the latest medical reports, there is a good reason for me to be cautiously optimistic. That aside, there is a nagging sense that I will be blindsided by a health condition I least expected, as if a Stage 4 CKD is not bad enough. Hopefully, that is just an overactive imagination working overtime.

Festive Guilt

Braised pig trotter with fatt choy
Braised pig trotter with fatt choy, New She Lai Ton Restaurant, Ipoh.
Photo taken with the Samsung Galaxy S II.

With the festive celebrations over and done with, I can finally breathe a sigh of relief. It has been an especially difficult time for me. I had a hard time resisting all the good food that came with the ocassion. In fact, I worry that I may have over-indulged.

I need to seriously go back to the basics of my dietary requirements of low-everything; low-protein, low-sodium, low-purine, low-phosphorous, and now, low-cholesterol. Anything to preserve whatever renal function left in my kidneys.

Another blood test is due in two weeks. The doctors ordered it to check if Lipitor has any adverse effect on my liver and especially my kidneys. The most serious being rhabdomyolysis. This is the breakdown of muscle tissues that leads to the release of a huge amount of myoglobin into the blood stream and causes kidney failure.

The only side effect that I experienced so far was the first few days after I began taking the medicine. My philtrum and upper lips twitched incessantly. The twitchings stopped a week or so later. The blood tests shall reveal whether I suffered other subclinical effects.

My Failing Kidneys

Pandan Indah Sky
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.