Folks,
I was diagnosed with CHRONIC KIDNEY DISEASE (!) by my PCP just over three years ago with a creatinine-based eGFR of 55. I'm 61 years old. Of course, I flipped out...and I mean REALLY flipped out. Can't even begin to estimate how many DAYS (not hours) I've spent researching the internet about CKD, the natural course of things, how long I have to live etc. etc. etc. As is typical, I had my PCP repeat the blood work a month after diagnosis, and wouldn't you know, it comes back as >60...the magic number. Phew! But then I looked at my old charts and saw that my eGFR was at 75 just 4 years earlier. NOT a good trend. Worry time once again. How much does eGFR tend to decrease each year? How long til dialysis? How long can you live on dialysis? Lions, tigers, bears...OH MY!!!
But WAIT!...I found some REALLY old test results back from 1996. My creatinine levels were 1.2 twenty four years ago, which was within the reference range. That's right, 1.2. And what were my results from two weeks ago.....1.3. Yes, twenty four years later, my creatinine increasing from 1.2 to 1.3....and I didn't even fast two weeks ago. But I'm getting ahead of myself....
When I was first diagnosed, my PCP also suggested that I should go for a kidney ultrasound for CKD confirmation. Absolutely!, I said. Of course, in order to get insurance to pay for it, I needed to have a diagnosis. So she writes CHRONIC KIDNEY DISEASE on the order form. I bring the order to the ultrasound technician, she takes one look at it and BAM....both she and the radiologist are biased toward finding supporting evidence. I mean, who are THEY to disagree with my PCP, right?
Here's the report from 3 years ago;
FINDINGS:
EXAMINATION: US KIDNEY BILATERAL
HISTORY: Chronic kidney disease stage III.
COMPARISON: None.
The RIGHT kidney is atrophic measuring 9.2 cm. The LEFT kidney is within normal limits in size measuring 10.0 cm. There is mild bilateral increased echogenicity of the kidneys consistent with medical renal disease. No focal lesion or hydronephrosis is seen. There are finding suspicious for a possible left lower pole renal calculus.
IMPRESSION:
Minimal atrophy. Findings consistent with mild medical renal disease. Possible left lower pole renal calculus.
So according to the ultrasound, I have CKD. Then it was time for a trip to the nephrologist. He basically said I have some mild scarring and damage. No need for a biopsy. Watch my salt and protein intake, make sure I drink at least 2 liters of water a day, keep an eye on my blood pressure, maybe take a low dose ACE. Mind you, I've had 130/80 blood pressure for at least 24 years, probably due to constant dehydration and lack of aerobic exercise. 130/80 used to be called normal.
Flash forward to today. I just had new labs and requested an ultrasound again. But but but...THIS time, I told my new PCP NOT to write "chronic kidney disease" on the order form. Instead, I told him to write "kidney stones" so as not to bias the technician or radiologist. Here is the report;
Labs: Creatinine 1.3
Ultrasound:IMPRESSION: Questionable small bilateral non-obstructing renal stones.
Narrative
US RENAL - 2/20/2020 2:55 PM
Indication: Nephrolithiasis.
Comparison: None
Technique: Abdominal ultrasonography. Obtained images are permanently stored in PACS.
Findings: The kidneys measure 9.8 x 5.8 x 4.4 cm on the right and 9.3 x 5.2 x 5.3 cm on the left. No hydronephrosis is evident. The renal contour and cortical echogenicity are unremarkable. There are microscopic reflective foci of the renal sinus fat of both kidneys consistent either with tiny non-obstructing stones or vascular calcifications. No masses are found in the urinary bladder. There are bilateral ureteral jets.
My Summary: My PCP said to look for stones, so the radiologist found some stones or whatnot. More importantly, the radiologist DIDN'T find echogenicity this time around, which is a hallmark of CKD on ultrasound. I have indeed had two stones in the past which probably caused some damage, and the radiologist did notice the same tiny potential stones as three years ago, but the takeaway from this is the lack of echogenicity. Three years ago, my kidneys were abnormally echogenic, which confirmed the diagnosis of CKD. This time, no echogenicity. That's great, but what gives?! Even crazier, look at my kidney sizes. Although a bit small, notice that the radiologist did not use the word "atrophic". That's another buzzword that signifies shrinking kidneys, which is normal for CKD. But here's the bigger takeaway: Did you notice that the sizes of my kidneys are completely reversed from the ultrasound three years ago!!!! DOCTORS, TECHNICIANS, AND RADIOLOGISTS MAKE MISTAKES!!!...and they do so frequently.
Don't take what ANY of these folks say as gospel unless it's double-checked, verified, then run by another doctor for a second opinion. You really need to be your own advocate.
I've also found something to put my mind at ease, and that is to request a Cystatin-C test. Cystatin-C is another byproduct marker for CKD, but the advantage over creatinine is that it isn't affected by muscle mass, sex, race, and the other factors that creatinine is. Although my creatinine-based eGFR over the last three years has put me at levels ranging from 52-59 (it's 59 as of last week), my Cystatin-C levels put me at an eGFR of 77. Combining the two (there are indeed formulas that do this), which is probably the most accurate estimator, puts my eGFR at around 68. Combine that with my nephrologist's opinion, and I'd characterize my kidneys as generally a bit crappy, prone to stones, and need to be gently taken care of, but that I'm not gonna die of kidney disease this year or probably next or probably the year after that if I take care of myself. My goal is to try to live life as best I can, try to stay by eating right, exercising, and hydrating, and try to make my kidneys last until they come up with a decent artificial kidney or stem cell treatment. Do I have crappy kidneys? Yes. Do I have CKD? Probably, but perhaps a gentler label is more befitting.