Skip to main content

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.


Comments

Most Read

It's getting real...

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...

Truth

The need is real! I don't know if it's because prior to Tolvaptan I routinely used mind over matter to delay my trips to the restroom, but I think I'm doing okay these days. Is it possible that I built up bladder muscles over the years? Don't get me wrong, the need to pee is omnipresent. But it's one of those things where I can make note of it, finish what I'm doing (or finish a couple more things) and then make my way to the facilities without the fear of letting things fly. But I'm not stupid. You'd better believe I'm making the restroom my last stop before starting my 45 to 60 minute commute to/from work. A soggy crotch is NOT becoming.

Test tube kidneys?

While I'm sure that Miromatrix would shudder at my description, it looks like they're developing the equivalent of a test tube kidney which could be used for transplant. While the science and bioengineering behind it is extremely complex, this is how I understand it. Miromatrix uses decellularization and recellularization technology to create a transplantable kidney. Huh? They take an dead organ - it doesn't even need to be human - and using detergents (I'm guessing they're stronger than Dawn ;-) ) they strip away all the cells. What remains is the kidney's extracellular matrix (collagen, enzymes and glycoproteins) and all its chemical cues. Then the "generic" organ is repopulated with the transplant candidate's cells, eliminating the risk it will be rejected upon implantation. Early studies have shown that it takes from four to eight days to culture the transplantable kidney and, even better, the new organ produces urine when tested. B...

It's a family affair

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...

Expensive but affordable

There's no denying it. Tolvaptan - brand name Jynarque - is CRAZY expensive. The wholesale price is just north of $13,000... A MONTH! Dear God. I've searched and searched to find out how much pharmacies are beings charged for the drug, as well as my insurance company, but I've yet to find a source. Surely there has to be some kind of 'negotiated price' like you see with healthcare?!? My doctor suggested increasing my dosage - after I'd already received the next month's supply - and I about hyperventilated. There's no returning drugs and the thought of wasting $13,000 of pills left me queasy. So instead, we decided that I'd stay on the lower dose for another month and then increase the dose the next time. Deep breaths... Regardless, Otsuka (manufacturer of the drug) is working to make sure that the patients' out of pocket for the drug is manageable. Through their MyPASS program , patients with commercial insurance can acquire the pr...