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Prep is the key to success

Sat Mar 30 2018 - And the clock is ticking!

I was never a scout - but my dad was a scout leader for a while - so that must be where I get my pull (possible neuroses) to always be prepared. So today was a whirlwind (yes, I exaggerate) of activity to get ready for Medication Monday.

While Tolvaptan can slow down cyst growth in kidneys, there are two big side effects - possible (temporary) liver damage and loss of body fluids (yes, you pee a lot). The liver function is very closely monitored through bi-weekly liver tests that eventually turn into monthly tests and so on. If they find issues, the drug is discontinued, liver function returns to normal and then you either try a lower dose or stop taking it altogether.

My prep was not for that side effect.

My prep was for what will become my Two Gallon Habit.


That's right. Water is soon to become my best friend as well as my worst nightmare.

My first stop was Target. With all the time I'll be spending in the bathroom, I figured it was time to invest in some Aloe & Vitamin E infused toilet paper. Thank you Cottonelle! (I may have gone a bit overboard on my purchase but I think there was a $5 Gift Card riding on volume).

Next I went for water bottles. I need to be able to carry water with me wherever I go. And I tend to be forgetful, leaving them in the car, at work, at home, in the camper, at friends', etc. Is there such a thing as too many?

Always be prepared, right?

So, of all places, I went to Walgreen's. A month or so ago (when I didn't have to have all water, all the time) I discovered I was at work with nothing to hold water. So I skipped on over to the local Walgreen's and they had the Contigo Auto Seal (aka the Cortland) on sale Buy One - Get the Second at Half Price. [Note: if you do a search on location, they'll tell you no stores have stock. Trust me. Go to your local Walgreen's and look. They'll have them.]

Best... Water... Bottle... EVER!

Don't know if you've ever gotten stuck buying the version that has the straw in it. I've practically passed out trying to use that version. And the sounds I made while trying to use it? Rude. So very rude. Trust me. Stick with the Auto Seal.

They automatically seal so if (and when) they tip over there's no spillage. No soggy carpet. No destroyed phone or computer. To quote Martha Stewart, it's a good thing. I ended up getting other Contigo versions (none with the straws though) so here's my collection... so far.

When I was looking up the link for the Cortland, I discovered they have an insulated version called the Auto Seal Chill - ALSO on sale Buy One get One Half Off. I may be making a trip to Walgreen's this afternoon to add to my collection...

Rounding out my Pre-Water tour was a trip to the nearest Menard's. Do they have them where you're at? Wisconsin-based rival to Home Depot and Lowes - more down home if you know what I mean. No frills. Solid value.

Would you believe they sell drinking water? They do. And it's pretty good stuff. So I bought four 5 gallon jugs. I purchased an at-home water cooler last summer (ice cold water goes down so much easier plus I live in a rural area and am on well water) and the price of Menard's water is more reasonable than buying from a distributor such as Primo (the manufacturer of my water cooler). So here are my little water soldiers, all lined up and ready to be put into service (excuse the missing jug - girl was thirsty).

A day and a half to go before meds arrive and I'm feeling good to go.


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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.

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.

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...