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Live in the moment

I'm a thinker, a what if-er. I analyze things to within an inch of their life.

Live in the moment? What's that?

Nothing is straight forward with PKD. The unpredictable nature makes it impossible to create solid plans. And the decisions you think you can make are often conflicting.

Case in point, Tolvaptan. Taking it should slow down kidney decline, delaying my need for dialysis and/or transplant. Yet the older I am before I need a transplant, the higher my Expected Post Transplant Survival score is (a lower score means greater survival rate and, if 20 or less, a high quality kidney). But I'm really hoping to stave off dialysis/transplant until there's a viable implantable artificial kidney.

See what I mean?

I guess the bottom line is that I have to have faith and trust that whatever happens was meant to be.

What are the words from the Serenity Prayer?

God grant me the SERENITY to accept the thing I cannot change, the COURAGE to change the things I can and the WISDOM to know the difference.

I'll start working on that.

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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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