Hello, all -
I'm sorry I haven't been around as much as I would like, but this home training is like a full-time job; it's an hour-and-a-half each way just to get there and by the time I get home I've just been wiped out. Anyway, I really need some help before I go broke, crazy or both.
On September 27th (the day before I switched from in-center to short daily) I experienced an excruciating pain in my left side, in the back, up under the last ribs. Precisely where one presumes the kidney to be located. It came in waves and radiated, and doing yoga exercises did not help in the least. It comes, it goes, and the only thing that helps is standing and/or walking. Sitting is out of the question (yay for short daily
) and lying down is usually OK, though not on my left side at all.
My primary care physicians have put their heads together and they both swear up, down and sideways that they can't think of anything it could be other than a kidney stone. However, an ultrasound failed to show any evidence of such (though the U/S technician DID have an attitude due to my empty bladder
). NOW they want me to go for a CT scan since it is the 'gold standard' for diagnosing kidney stones (which makes me wonder why I wasted money on the U/S when I could have just gone for the CT scan in the first place). All this is coming out of my own pocket, since my Medicare ESRD application has not come through yet and I don't know how much longer I'll have to wait before I get my card. I'd like to sit and talk with a doctor - preferably a nephrologist - and try to figure out what else this could be, but as you all know a 'doctor's visit' lasts about 60 seconds and besides which, they're acting like this is none of their concern. They actually told me to try and flush it out, when they ought to know there's no way I can get the fluid off again on this modality. "Oh, yeah. Hmm. Guess you can't do that." You think?
I have fully conceded the fact that it could be muscular - it's everyone's favorite scapegoat - and I've also ruled it out. There's a very good reason for that. First, by profession I am a figure model: a study in muscle isolation. Secondly, by avocation I am a belly dancer: a study in muscle isolation. I know what it takes to protect my muscles and I know what it feels like when you don't, and both my living and my passion have required that I respect my muscles. I've never felt anything like this in my life.
I've also thought about the possibility it could be psychosomatic, but it seems strange that after all these years my mind would suddenly create completely new outlets in my body; the usual culprits are headaches, chest pains and tight shoulders, and I'm usually aware at the time that it's stress-related. This pain wakes me up out of a dead sleep and keeps me up for hours.
In going back over the time it started and trying to figure out if anything new had been introduced or anything routine changed, I only come up with one: high phosphorus. In addition to never having had a kidney stone before, I've also never had high phosphorus before. It seems to me the two might be related, but I don't know how high your phosphorus needs to go before you have to start worrying about things like soft-tissue calcium deposits. My phosphorus is only 5.8 and my calcium is within range.
So my question is: is there something inherent in the process of dialysis that can cause pain like I've described? When I began dialysis (on 8.22) my GFR was 8; eleven days later (on 9.2) my function was down to 2.7 and I collected 1400 mL of fluid. Last week (10.12) I did another collection and got less than 250 mL, so I have to presume my function basically went from 8 to zero in a month's time. Could this pain be the death throes of the kidney? Has anybody, anywhere, ever experienced pain like this that wasn't a kidney stone? Nephrologists always like to point out that the kidney can't feel pain, and then they have "flank pain" listed as a symptom on their forms; when you point that out they always say, "oh, that's not this. that's something else." Oh? Well, what is it then? Is it some Ancient Nephrological Secret you can't share under pain of death? What? My father used to have the same pain, so I know it's not just me.
I just don't want to spend money on this CT scan only to have it find nothing and land me right back on square one.
If it's not kidney stones I don't know what I'll do if the pain persists, because no one is going to manage your pain if they can't find evidence for said pain. It's going on three weeks now and not getting any better.
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