Mad As A Wet Hornet!

mp327

 

 

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

eihtak

Martha......

Firstly let me commend you on your level of physical activity, I too am routinely active and pride myself on staying that way throughout this journey as much as possible.....but you have me beat!!! I have never been a runner and am always impressed at those who incorporate this in to their daily schedule. Nice work!

Next, your rant is surely justified and I share your concern for the validity of your results. I did however have the same thought as your pharmacist, but the nephrologist or his staff should have made that clear prior to testing. I to do my share of "sleuthing" and while I feel a sense of empowerment from educating myself, it should NOT be our job to do so and we should be able to be 100% confident in our medical teams that they are doing 100% of what they are paid to do.

Please keep us posted as you learn more.

katheryn

z

Martha

You are very good at the research you do and I am glad you are because as my cousin always tells me these are practicing drs.  Unfortunately, some drs are not very good at what they do and we have to do the follow up on what they want us to do.

My first lung surgery dr I went to for a consult was 2 hours late and irritated me to no end by pressing hard on my neck area to demonstrate where the incision would be made.  Furthermore, he told me that the vats procedure wasn't a good procedure to remove my lower right lobe.  Thankfully, my aunt gave me a referrel to a wonderful surgeon and I had vats with only 2, 4 inch scars compared to 1, 12 inch scar and I have shown ned since 9-23-10 for lung cancer.

I hope you will get the answers you deserve to have and that the dr was using your normal activity to base the tests on.

I just don't like the waiting for results, thats one of the hardest parts.  I wish you well. Lori

EvelynB

Martha

I commend you for researching so thoroughly. I, too, spend countless hours researching everything I am told. One thing I have learned in this journey is that we must be our own advocate. I would most definitely seek another opinion. I would bet that you have no kidney disease at all.  I want to tell you also that you are a true inspiration. Before my cancer diagnosis and treatment, I was an avid exerciser for over 34 years and took great pride in my strength and fitness level. I am having a very hard time bouncing back (mentally) to try & regain my strength. Reading about your fitness level is very inspring.        

RoseC

Yes, I agree, they should've told you all these things

Very frustrating.

I'd second finding another doctor. The first office should have given you at least a pamphlet listing all the required information. And those results your labs showed were very confusing. And they still haven't called you back? Not good.

I will say though that my kidney function has decreased some over the years. Can't remember my GFR number but my creatinine hovers around 1.3, which is typically considered a little high. At no time though was I told it could be due to kidney disease. They (the multitude of doctors I saw during TTP) said that kidney function decreases with age (and of course, the TTP didn't help things any). It's remained stable since 2009 (not sure what it was before that). My current doctor is very preventative conscious but he hasn't indicated I need to do anything or have closer monitoring. I get a blood test about once a year that includes kidney function.

Hope all goes well,

Rose

mp327

RoseC said:

Yes, I agree, they should've told you all these things

Very frustrating.

I'd second finding another doctor. The first office should have given you at least a pamphlet listing all the required information. And those results your labs showed were very confusing. And they still haven't called you back? Not good.

I will say though that my kidney function has decreased some over the years. Can't remember my GFR number but my creatinine hovers around 1.3, which is typically considered a little high. At no time though was I told it could be due to kidney disease. They (the multitude of doctors I saw during TTP) said that kidney function decreases with age (and of course, the TTP didn't help things any). It's remained stable since 2009 (not sure what it was before that). My current doctor is very preventative conscious but he hasn't indicated I need to do anything or have closer monitoring. I get a blood test about once a year that includes kidney function.

Hope all goes well,

Rose

Thank you

Thanks to each of you for your responses to my latest post.  I am still researching like a fiend!  I am determined to be able to defend my case!  My husband joked that had I done this much studying when I was in school, I would have been valedictorian of my class.  lol! 

I am going to seek a second opinion after my December 4th. follow-up appointment, unless they run more tests that come back squeaky clean and this will all be declared a false alarm.  So, right now I wait.

Thank you all for your concern and for sharing your own experiences.  Have a great weekend!

Martha

 

Lorikat

Thank you Martha.  You are a

Thank you Martha.  You are a true gift!

TraceyUSA

mp327 said:

Thank you

Thanks to each of you for your responses to my latest post.  I am still researching like a fiend!  I am determined to be able to defend my case!  My husband joked that had I done this much studying when I was in school, I would have been valedictorian of my class.  lol! 

I am going to seek a second opinion after my December 4th. follow-up appointment, unless they run more tests that come back squeaky clean and this will all be declared a false alarm.  So, right now I wait.

Thank you all for your concern and for sharing your own experiences.  Have a great weekend!

Martha

 

Such craziness!

It's a good think you are on top of things, Martha.  I see more and more that you have to research and question everything.

Good Luck!