As I prep for today's nephrology appointment, I thought this might be a good visual for people if they're just entering the world of PKD.
This is my kidney function over the past year and a half and I've classified the data points into periods of stability and decline.
The key takeaway from this is that a single data point doesn't really carry much information - you have to look at the trend over time. And sometimes you have to wait a bit to see what that trend actually is.
Did I freak out when I hit that period of decline late last summer (2nd decline period)? Without a doubt! But was the decline as bad as I initially thought? No (but it still sucked). And after the initial shock (and denial and grief) wore off, I was okay.
And when my levels dropped to 23 at the beginning of this year, I'd been through enough to stop and ask myself what was going on. In this instance, I'd been put on a diuretic for five days to take care of some water retention. I should have stopped the meds as soon as I started seeing the effects (a couple days) but I didn't. So I dried out my kidneys, they weren't happy and it showed in my test results. Given time to recover from that, my levels went back to the Stage 3b/4 border.
This disease sucks. But don't let a single test results ruin you day - or month - or quarter. Wait for the trends to appear.
This is my kidney function over the past year and a half and I've classified the data points into periods of stability and decline.
The key takeaway from this is that a single data point doesn't really carry much information - you have to look at the trend over time. And sometimes you have to wait a bit to see what that trend actually is.
Did I freak out when I hit that period of decline late last summer (2nd decline period)? Without a doubt! But was the decline as bad as I initially thought? No (but it still sucked). And after the initial shock (and denial and grief) wore off, I was okay.
And when my levels dropped to 23 at the beginning of this year, I'd been through enough to stop and ask myself what was going on. In this instance, I'd been put on a diuretic for five days to take care of some water retention. I should have stopped the meds as soon as I started seeing the effects (a couple days) but I didn't. So I dried out my kidneys, they weren't happy and it showed in my test results. Given time to recover from that, my levels went back to the Stage 3b/4 border.
This disease sucks. But don't let a single test results ruin you day - or month - or quarter. Wait for the trends to appear.
Oops! Talked with my doctor and said that the first TWO periods should be considered stable. So the periods in the chart should be stable-stable-decline-stable. Live and learn. :-)
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