Today's visit got off the right foot with a wait of more than an hour and a half before we even saw the doctor. Then he was in and out in about two minutes so he could get yet another doctor -- the second doctor from the first visit wasn't in, so we got yet another new doctor. He also managed to complain that my bloodwork for last week never got sent to them. (We called the labs and confirmed it was, then got another copy sent.) Then more waiting.
The results, of course, contradict everything I've been told before this, just as everything before this has contradicted everything before it. My calcium intake, for instance, was stopped, then reinstated, then doubled, then tripled, then dropped back to the original levels, and at one point today the second doctor was talking about raising it again. Having previously been told to increase citrate intake, I was told this time to stop drinking lemonade, even though they're putting me on a citrate prescription supplement. And so on.
I don't know how much of it is because I can't seem to get the same doctor twice, or ever get a doctor that actually read my file beforehand. My urologist seems a lot more consistent and much more willing to listen to me and explain things to me, but even he seems just short of admitting that they just don't really understand what's going to work -- though he blames that on him being a urologist, not a nephrologist. So maybe if I had a nephrologist that stayed on the case, and wasn't always too busy to read my file or talk to me or listen to me or give serious thought to my situation, they'd be able to give me a coherent answer. But then, maybe not. At this point I wouldn't be surprised if it turns out they're just shotgunning because they don't really understand what's going on (or because the tests it would take to make a real diagnosis and treatment are more costly than just trying a bunch of things).
Ultimately, what they want me to do is:
- Decrease the high-oxalate foods in my diet, like kale (which I never ate), cola (which I already eliminated months ago), nuts (which I've all but stopped eating), and beer (yuck). The only high-oxalate food I still have is chocolate.
- Stop drinking lemonade, and drink water instead. Because I need to bring my citrate levels up.
- Drink more fluids. I already drink literally twice as much as most people, but when I tell doctors how much, they always give me a stare that means they're thinking "why is he lying to me?" which only convinces them it must be low fluid intake (since that's the problem for so many people). My urine capture happens to have been unusually low, and they don't believe me that previous ones were "unusually" high.
- Lose weight. They just throw this one in so the AMA doesn't revoke their license.
- Stop ingesting salt. I think my salt intake is probably 'average' and I'll concede that 'average' is probably too high. But I think they think my intake is "eats Swanson Hungry Man and McDonald's every meal" and they want it to be "lives on a moon base and synthesizes nutriets via photosynthesis".
- Take a prescription potassium citrate. I'm not Mr. Better Living Through Chemistry, but this is the only thing they said that I think might actually help. Everything I've seen about my citrate and oxalate levels suggests my numbers are way too far from normal for dietary changes to make that big a difference.
- Come back in three months so they can reverse everything they've said and waste another four hours of my day. And don't forget more urine and blood tests.
I'm really starting to regret getting onto this track, but that's for tomorrow's blog post.