Mad as a Wet Hornet!

This is going to be a "ranty" post, so if you prefer to hit "esc" right now, I will understand.  However, besides blowing off some steam, I hope to impart some information that may be useful to any of you who may someday have to undergo testing for kidney function.  So here goes.

I am a sleuth and, given the recent concerns about my renal health, I need to know things, such as how kidneys work, what their function is, the different types and stages of kidney diseases, how they are diagnosed, what the risk factors are, and how to interpret lab results for kidney function.  As I previously posted, I have been getting tested for possible chronic kidney disease since early August.  I've had blood tests, with results all over the place--some normal, some not.  I recently saw a nephrologist and he ordered a 48-hour creatinine clearance study, where I had to collect my urine over a 2-day period, which was tested for creatinine, protein, etc, and followed up by more blood work.  As I stated in my previous posts, the results have left me dazed and confused.

I have heard nothing from the nephrologist's office about these results, nor has my internist's office contacted me after I dropped off copies of everything to her last Friday.  That's really not what this rant is about, but it still makes me a little pissed off.

However, my main point of anger has to do with the 48-hour urine collection.  Perhaps I should be smart enough to know by now that even when a specialist, their nurse, or their lab tech gives me written instructions for doing a test, I need to still do a search on the internet on one or more reputable sites to see if they have given me correct and complete instructions (some of us are well aware of how instructions for prepping for a PET scan can differ).  However, you would think that since they are much more familiar with a urine collection test than their patients that they would be very precise when telling the patient what to do to get the specimen.

I was given a typewritten sheet of instructions (unfortunately, I think I discarded these after I completed the test, as I cannot find them anywhere).  However, both my husband and I read them and no where was it indicated that I was to do any of the following prior to beginning the collection process (the information below was the same on both WebMd and Cigna's websites):

1)  Do not do any strenuous exercise for 2 days (48 hours) before having creatinine tests.

2)  Do not eat more than 8 oz. (227 g) of meat, especially beef, or other protein for 24 hours before the blood creatinine test and during the creatinine clearance urine test.

3) Be sure to drink enough fluids during the 24-hour urine collection, but do not drink coffee or tea.  These are diuretics that cause your body to pass more urine. 

So to break this down:

1)  I keep an exercise log of my daily workouts.  Two days prior to beginning the test, I ran 3.1 miles.  One day prior to the test, I again ran 3.1 miles.  On the day I began the test, I ran 4 miles, mowed my yard and did about 2 hours of other yard work.  So, since I wasn't advised of this, #1 of these instructions is a big FAIL!  This type of physical activity is normal for me.  I was not questioned by the nephrologist, nor were there any questions on all the forms I completed, about my lifestyle, level of physical activity, etc.  I also lift heavy weights twice a week and in my sleuthing, have learned that people with high muscle mass tend to have higher creatinine and protein levels in their blood and/or urine.  Generally, men have more muscle mass than women, so they tend to have higher levels.  I'm certainly not a man, but I'm also not the typical 62-year old woman, given my fitness level.  My BMI on October 22nd. when I saw the nephrologist was 17.5.  As was noted in the past on one of my many scans, I have a "paucity" (lack) of fat.  Hmmmmmm.

2)  I do not keep track of what I eat, so I am unable to know exactly how much protein I ate in the 24 hours preceding the collection process.  However, I am sort of a protein freak and I'm sure those 24 hours included Greek yogurt, an egg or two, and some type of meat (although NOT beef, as I do not eat beef anymore).  Fail!

3)  Okay, I'm pretty sure I drank enough fluids during the 48 hours.  However, I drink two cups of coffee every morning, so once again, FAIL!

I discussed all of this with my friend who is a pharmacist and one of the smartest people I know.  He told me that maybe, just maybe, I wasn't instructed as per the above because the nephrologist wants the results to reflect my normal status, i.e. the exercise, diet and caffeine use.  I guess that's possible, but I really need to know if that's the case.  Maybe I am grabbing at straws here or trying to wish away any bad news.

I really don't know if I can trust any of these results.  If need be, I will gladly repeat this test, following the above instructions, to see how the two compare.  I certainly do not need to be diagnosed with a possible life-changing disease, based on inaccurate results.  False positives/negatives and skewed numbers are NOT a good thing when trying to nail down a diagnosis.

I do not return to the nephrologist until December 4th., at which time I will not even be seeing the same doctor who did my initial consult, due to the fact that he will be out of the office then.  So who knows what this other doctor will have to say.  BTW, I tried to look him up on Vitals.com and apparently they've never heard of him. 

So, my plan is to go ahead with this appointment and see what comes out of that.  I am also researching other nephrologists in this area and will be seeking a second opinion.  I am not overly impressed with the first doctor or the facility, which I found to be dingy and depressing.  I refuse to accept his preliminary diagnosis of Stage 2 Kidney Disease unless and until further tests prove him right.

Rant over.  Now it's time to go get some more of that exercise that I should not have gotten prior to the test.  I've already had my coffee and who knows, I might just have some eggs for lunch.

Martha