On repetition, communication, and nephrologists
I think I might need to get a different nephrologist when my insurance changes on March 1, because my current doctor and I seem to have significant communication problems. We finally spoke on the phone today, and I ended the conversation feeling frustrated and confused.
She is stuck like a broken record (and soon that analogy will make no sense except to us old fogies) on the dehydration issue, insisting that I spend the next few days getting tons of sodium and then get lab tests taken again. I pointed out that:
1) we'd already done this dance a month ago, and getting lots of sodium did not seem to change things, and
2) my blood sodium level and urine sodium level have been constant since August, when my creatinine and GFR numbers were much better. Since our purpose here has been to figure out why those numbers have gotten worse in the intervening months, continuing to investigate my consistent sodium levels, which have not changed during that time, would not seem relevant to investigating my creatinine and GFR numbers, which have changed.
Playing with my sodium again seems, to me, useless and unscientific. Maybe it isn't. Maybe the doc has a good reason to think that something might still change as a result of me packing my body with salty foods and broths and Gatorade again. Maybe she's planning to test something different this time, rather than testing the same stuff she tested last time she had me load up on sodium, only a month ago. But if there's a good reason to do this again, she hasn't communicated it to me. She just kept insisting that I'm dehydrated, that my kidneys are "holding on to all the sodium they can," and that my ratio of water intake to sodium intake is off. Okay, so that may, in fact, be indicated by my lab results - in fact, I believe that it is -but I don't see how, given that it has been consistently true since August, it could be relevant to the other numbers changing.
Also, in today's phone conversation, she commented that at least my creatinine had settled at only 1.60 (my previous high - when I was still on my full dose of lithium - was 1.65, and in August - when she declared me "stable" and only needing maintenance appointments every 4 months - was 1.33). I asked her why she thought that my creatinine had "settled" at 1.60, when we haven't taken any measurements since August and so have no idea whether it has been gradually tending upward and might still be doing so. She admitted that this could definitely be the case. So why are we dicking around with the same fucking tests with the same fucking sodium loading, when we don't know if things are getting worse while we do so?
When I questioned (more than once) why we were doing the same tests with the same conditions, she (sounding frustrated) said that we could otherwise do a biopsy of my kidney, but that she didn't want to do something so drastic unless we had to. Dude! There are no other options besides playing with sodium and putting me under the knife? And how does avoiding the knife mean we should keep playing with the sodium over and over again? As far as I can tell, we've gotten all the information we're going to get out of loading me up with sodium and then running blood and urine tests. It seems unlikely that there is nothing else we can do except just watch what happens with my kidneys in complete helpless ignorance, that there is nothing else we can investigate.
So I'm feeling frustrated with our communication. Either she's stupidly making me repeat the same damn experiment more than once for no good reason (while my kidneys may be continuing to get worse while we dick around), or she's not communicating her thinking to me very well, or she's not understanding my questions and concerns very well, or some combination of these. Whichever of these is the case, we aren't working well together.
So I'm giving her the benefit of the doubt one more time, since my insurance isn't changing for a few weeks, and I'm loading up on sodium (AGAIN) and waiting to receive the next lab order in the mail. We'll see what happens after those labs: how long it takes for her to get back to me about the results (since this time it took weeks) and how well we communicate about what the results mean. And then I will see if I want to ask for a referral to a different nephrologist.
Note: My new "kidneys" icon looks like a hoodie with dark blue pockets. This amuses me.
She is stuck like a broken record (and soon that analogy will make no sense except to us old fogies) on the dehydration issue, insisting that I spend the next few days getting tons of sodium and then get lab tests taken again. I pointed out that:
1) we'd already done this dance a month ago, and getting lots of sodium did not seem to change things, and
2) my blood sodium level and urine sodium level have been constant since August, when my creatinine and GFR numbers were much better. Since our purpose here has been to figure out why those numbers have gotten worse in the intervening months, continuing to investigate my consistent sodium levels, which have not changed during that time, would not seem relevant to investigating my creatinine and GFR numbers, which have changed.
Playing with my sodium again seems, to me, useless and unscientific. Maybe it isn't. Maybe the doc has a good reason to think that something might still change as a result of me packing my body with salty foods and broths and Gatorade again. Maybe she's planning to test something different this time, rather than testing the same stuff she tested last time she had me load up on sodium, only a month ago. But if there's a good reason to do this again, she hasn't communicated it to me. She just kept insisting that I'm dehydrated, that my kidneys are "holding on to all the sodium they can," and that my ratio of water intake to sodium intake is off. Okay, so that may, in fact, be indicated by my lab results - in fact, I believe that it is -but I don't see how, given that it has been consistently true since August, it could be relevant to the other numbers changing.
Also, in today's phone conversation, she commented that at least my creatinine had settled at only 1.60 (my previous high - when I was still on my full dose of lithium - was 1.65, and in August - when she declared me "stable" and only needing maintenance appointments every 4 months - was 1.33). I asked her why she thought that my creatinine had "settled" at 1.60, when we haven't taken any measurements since August and so have no idea whether it has been gradually tending upward and might still be doing so. She admitted that this could definitely be the case. So why are we dicking around with the same fucking tests with the same fucking sodium loading, when we don't know if things are getting worse while we do so?
When I questioned (more than once) why we were doing the same tests with the same conditions, she (sounding frustrated) said that we could otherwise do a biopsy of my kidney, but that she didn't want to do something so drastic unless we had to. Dude! There are no other options besides playing with sodium and putting me under the knife? And how does avoiding the knife mean we should keep playing with the sodium over and over again? As far as I can tell, we've gotten all the information we're going to get out of loading me up with sodium and then running blood and urine tests. It seems unlikely that there is nothing else we can do except just watch what happens with my kidneys in complete helpless ignorance, that there is nothing else we can investigate.
So I'm feeling frustrated with our communication. Either she's stupidly making me repeat the same damn experiment more than once for no good reason (while my kidneys may be continuing to get worse while we dick around), or she's not communicating her thinking to me very well, or she's not understanding my questions and concerns very well, or some combination of these. Whichever of these is the case, we aren't working well together.
So I'm giving her the benefit of the doubt one more time, since my insurance isn't changing for a few weeks, and I'm loading up on sodium (AGAIN) and waiting to receive the next lab order in the mail. We'll see what happens after those labs: how long it takes for her to get back to me about the results (since this time it took weeks) and how well we communicate about what the results mean. And then I will see if I want to ask for a referral to a different nephrologist.
Note: My new "kidneys" icon looks like a hoodie with dark blue pockets. This amuses me.