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Not the Progress I Had In Mind

When I first went on Jynarque I completely nerded out and calculated my approximate rate of decline based on my height adjusted total kidney volume and the ADPKD Classification tool published by the Mayo Clinic.

Based on that information, I calculated that my eGFR levels would stabilize at 28 until 2021 when I would see a 4 point drop. With the approximate 35% reduction in the decline rate afforded by taking Tolvaptan, I would have expected to be somewhere between 26.3 and 28.1 right now (I told you I nerded out). Based on THAT rate of decline, I anticipated needing dialysis in about eight years when I projected I'd reach 7.1 to 8.8 eGFR.

Oops! Right now I'm at an eGFR 24, a full year before my projections. Best laid plans and all that, right?

Both my doctor and I are stumped. Is Jynarque working for me or not? At a cost (to the insurance company) of $10,000 a month, I don't want to be taking a drug if it has no effect. But we both acknowledge that it's possible the drug IS working and that without it my decline would have been even more pronounced (like the drop from 40 to 29 I saw between August and September of 2018).

So we're trying the highest dose of Jynarque - I started it yesterday. I had feared that I'd return to the thirst & bathroom schedule of my initial days on the drug but so far, so good. Just the status quo.

In the meantime, I'm trying to get a grip on my newer, more probable timeline. Now dialysis is looking like 2024 aka four years earlier than I'd hoped.

Sigh. 
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A drop isn't always a decline

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....
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