Saturday, March 7, 2009


In the last few days I have unexpectedly learned that I have Stage 3 Chronic Kidney Disease. This has become such a life changing event for me, I felt I would like to document my thoughts, feelings, experiences and findings, as perhaps they might be helpful to someone, sometime, in a similar situation... or perhaps even my children when they are older.

First the obligatory background:

Blood Pressure
I discovered that my blood pressure was on the high side (140/90) about a year and a half ago but after doing some web research I decided it was "essential hypertension" and there wasn't much I could do about it. I was already living the advocated healthy, low-sodium, regular exercise lifestyle. I did, however, get around to purchasing a home tester (or rather my wife did) and promised my wife I would see a doctor. I took blood pressure readings every week or so and my readings were normally a bit below the 140/90 limit, beyond which it is classified as "hypertension".

Then one day, about a month ago, and after not having measured for a while, the reading was something like 160/95. This shocked me enough to finally go and see the doctor. The doctor wasn't too concerned about the blood pressure level but prescribed medicine (Losartan and Aspirin) to lower it to a "safe" level to avoid possible damage to my heart and kidney's. She also prescribed a urine test.

At this point I remembered that in 2002 a urine test had shown proteins in the urine and the doctor at that time had recommended further testing. About six months after that I had another, unrelated, urine test and it also showed protein but the (different) doctor didn't notice it in the test results and when I asked about it he just said "hmm... it does show proteins... why would that be... hmm..." and finally told me that there was nothing wrong with me but I had to relax more and avoid feeling so stressed (valid advice). Feeling myself to be healthy, I didn't worry further about the "protein in urine" issue and for some inexplicable reason never even researched it on the Internet.

Protein in Urine (proteinuria)
Now, six or seven years later, I decided to research the significance of protein in the urine and was horrifed to learn that it was a sign of kidney failure, with really no other explanation. When the lab tests came back they showed what I hoped (beyond hope) that they wouldn't: protein in the urine. The rest of the results seemed to more or less okay, though, so I wasn't too concerned.

Hypertension Medicine
After 11 days of Losartan and Aspirin, no change whatsoever was observable in my blood pressure readings which remained at 150/90 and occasionally reached 160/100 on the first reading.

Anaylis of the urine and blood test results
Unfortunately the Doctor didn't share my optimism and I although I wasn't too surprised to learn I had a kidney problem, I was shocked to learn that it was a "chronic" (untreatable) problem that would with me for life and that I could only hope to slow further damage. I got some sense of the graveness of the condition when she asked me what medical insurance I had.

She mentioned a "flow rate" as measure of kidney performance and calculated mine as being 40 whereas normal was 100. Although that sounded terrible to me, she described as "a moderate reduction in kidney function but significant". She prescribed a diuretic and another test: 24 hour urine collection.

24 hour urine sample
Now seriously concerned, I started the 24 hour collection right away and took my sample in a 2L apple juice bottle to the lab the next day only to be told that the sample had to be kept refrigerated... I think someone decided it would be even more humiliating that way.

Back home, with fresh urine in the refrigerator, I showed the apple juice bottle to my 5 and 4 year old daughters and explained that they weren't to even think about drinking its contents. "Look", I said, it has my name written on it so you know it has pee-pee. "But we can't read!!!" they squealed.

The results of the test were unencouraginging: a huge amount of protein loss (1800mg) and elevated creatinine in the blood. That evening I went to work seriously reasearching on the web and what I found wasn't exactly encouraging... 40 years ago my condition, "chronic kidney disease", meant certain eventual death but now, thanks to the availability of dialysis and transplants, many people lived fulfilling lives "long" after kidney failure.

I calculated my Glomerular filtration rate (GFR), supposedly the most common measure of kidney function, and found it to be 38mL/min, about the number the doctor had given me. I then looked up a chart categorizing the different stages of chronic kidney disease (CKD) (I have learned that the medical profession loves acronyms, by the way). I expected to be at stage 1 or 2 but was shocked yet again:

Stage 2: 60 - 89mL/min
Stage 3: 30 - 59mL/min
Stage 4: 15 - 29mL/min (prepare for transplant)
Stage 5: < 15mL/min (transplant or dialysis)

This was unthinkable... not only was I already at stage 3, I was not far from stage 4 "prepare for transplant"... how did things get so out of control?

1 comment:

  1. I am sorry you've had to go through this. Our daughter was diagnosed with CKD at 14 years old. It was a shocking and frightening turn of events for her and this rest of the family. You seem like someone who will learn everything you can - and that's great - knowledge is power!