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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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Round 2 deja vu

My doctor decided to keep me at the initial 45/15 mg dose for another months so I'm anticipating a similar water consumption. Here are the first four of seven (?) or eight (?) five gallon bottles of water. My local grocery store has a water bottle fill station for an extremely reasonable 39 cents a gallon. The frugal side of me thinks I should invest in reusable water bottles and take advantage of the savings. The lazy side of me thinks that it'd be a total hassle to wash the bottles, keep bugs and dust from falling into them before I'm able to refill them, remember to take them with me to the store (I can't even remember those reusable shopping bags) and then stockpile a source of bottle caps. It's just so much easier to buy these recyclable five gallon bottles. Lazy beats frugal.
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No denying it

So this happened today. Despite being on Jynarque for over a year. Despite increasing the dosage to 90/30. Despite watching my sodium, drinking gallons of water and losing weight. My creatinine levels continue to trend upwards and my eGFR continues to trend down. It's now at 21. Big sigh. Discussions are underway to determine dialysis modality and whether I can do it at home. A fistula consult with the surgeon has been ordered. And I still wait for the transplant evaluation with Mayo (it was rescheduled due to Covid). So if you know anyone who would be interested in helping out a Type O girl with a donated kidney, please send them my way. Take care.
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Winner Winner!

Mon Apr 1 2019 - Just look what showed up on my doorstep (okay, it was actually a FedEx driver) by 930am this morning! Super, super exciting!!! I had that box open and my first dose taken in no time at all. My biggest concern now is whether taking it at 930am is going to mess with my sleep. They say that it's best to take the first dose as early as possibly (my plan is 6am) so you can take the second dose as early as possible (8 hours later at 2am) so you're not waking up all night having to go to the bathroom. As it is, I won't be taking my second dose until 530pm. Ugh. Fingers crossed. In the meantime, here's what everything looked like when I opened the box (yes, I took time to actually photograph this momentous moment). After the inspection of the non-med part of the box, I set my bottle of water next to me (I was working from home) and I waited. And I waited. How long would it take before I needed to go to the bathroom?!? Turned out to take 45 min...
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