My Two Gallon Habit

I looked at my phone messages on Monday night and was excited to find a call from the Mayo Clinic. Would they tell me that I had to wait for further deterioration before I could be evaluated for transplant? Or would they tell me to make the drive to Rochester to go through a battery of tests and meetings? It turned out to be the latter. Yay! They're going to evaluate me for transplant in April! Wait a minute. They're going to evaluate me for transplant... Crap. As they say in the movies (?), shit's getting real. I'm trying to stay positive, telling myself that this way I'll be able to get my name on the transplant list as soon as my eGFR hits 20. I'll be able to maximize my time on the list. But every so often, the positivity slips and the fear and anxiety appear. And the questions. All the questions... Will I be able to keep working? Will I be able to afford this? How will this affect my retirement? Will I be able to retire early? How will I pay...

At my last appointment, the nephrologist actually offered to give me a referral for transplant. And then a week later I got THIS in the mail from my insurance company. Crap! It's getting real now. If something like that doesn't take the wind out of your sails, I don't know what will. Granted I had let my doctor know a couple of months ago that I wanted to be screened and ready to go as soon as my eGFR hit 20. Did I think it would be this year? No. My estimates were three years from now. Yet the combination of the four point eGFR drop + the transplant referral leads me to believe that my DOCTOR believes I should hit 20 within the year. I don't think I'm going to be able to last until the artificial kidney comes out. :-(

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 possib...