My Two Gallon Habit

Both of my brothers have ADPKD as well. The odds of a PKD parent having a child with PKD are one in two. The odds of having two with PKD are one in four, or 25%. Three? a 12.5% chance. We "beat the odds" (i.e. the PKD is strong in this line). Thankfully - for me - my PKD is less aggressive (although still not good). While I have a bit of a "PKD belly", it's not excessive. And instead of true pain, I only suffer from discomfort. Not so for my little brother. Despite being nine years younger, his kidneys are MUCH larger. You can actually see the outline of them on his belly. And instead of discomfort, he experiences true pain. So much so that he recently went in for surgery to have the size of some of his larger cysts reduced. The surgery is called Percutaneous (through the skin) Sclerotherapy and is an outpatient procedure. Larger cysts are identified through a CT scan or MRI, during which the doctor inserts a needle to aspirate (drain) and then s

I had the quarterly appointment with my nephrologist the other day - one of the "bonuses" of being on Jynarque is that they monitor, monitor, monitor the heck out of you. And I'm happy to say that all my levels are stable - eGFR (we've decided to call me early Stage 4 since I've been teetering between 3b and 4 for the past 5-7 months), liver enzymes, calcium, phosphates, glucose, potassium, sodium, Vitamin D... Oops! Then there's that nasty Intact Parathyroid test. TOTALLY different story... Not only is it higher than last year - and increase of 75% - but now I'm outside the normal range. Sound the alarms! But wait. What exactly is the parathyroid? What does it do? And is this normal for a Stage 4 PKD patient? The parathyroid glands (four of them) are about the size of a grain of rice - or a pea, depends on your source - and they are located on your thyroid. They release a hormone (PTH) that regulates the amount of calcium in your blood

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