Skip to main content

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.

Comments

Most Read

Artificial kidney

I have a somewhat fanciful thought of what an artificial kidney would look like. I see a device that is shaped like a kidney (of course) but is completely clear so you could see all the blood circulating through it. Granted, once it's implanted no one's going to see it but - hey - it's my vision. The closest picture I can find of what's in my mind's eye is this image. Granted, that's a picture of a kidney-shaped paper weight and it's a little cloudy, but I know you can picture it too. My, oh my. My imagination is not even close to reality. According to a post from the American Journal of Kidney Diseases , there are three new approaches being explored right now: the automated wearable artificial kidney ('AWAK'), the wearable artificial kidney ('WAK') and the implantable artificial kidney ('IAK'). My money's on the IAK and you'll understand why once I show you the concept pictures of the other two. The AWAK is said to ...

Six Months of Jynarque!

Wow. Talk about falling off the wagon. The blog wagon that is. It's been almost four months since I last posted. That's what happens when you take a vacation, lose your focus and start thinking about things other than my kidneys. Which is not necessarily a bad thing. But I'm still here. I'm still taking Jynarque... six months later. And I'm still hydrating to the tune of one to one and a half gallons a day. Yes, it's down from my two gallon habit but it's so much more manageable. I'd always thought that the goal of Jynarque was to ramp up the dosage as quickly as possible and to stay at that level as long as you could manage. But after talking with my doctor - and checking with my peeps on the Facebook group - I found that urine concentration (or lack of concentration) was a marker used in determining dosage. So my doctor and I decided to stay at the 60 mg/30 mg dosage based on my urine osmolality (which is just another way to say pee dilutio...