My Two Gallon Habit

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 ...

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.

Remember that AWESOME welcome box I received from Avella with my first shipment of Tolvaptan? One time spiff. This is how shipments #2+ come packaged. I guess there wasn't enough margin in the monthly $13,000 wholesale price for 'Congrats on Making it to Month 2' packaging. ;-) Still SO grateful to have the opportunity to stave off end stage with this medication. Maybe they'll have the artificial kidney by the time I reach the dialysis stage. Here's hoping. :-D

From kidneystuff.com - the $29 price tag may just be worth it

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....

All I know is that one person lives at my residence (ME!) and I have seven empty five gallon water bottles that are ready to be recycled. So 35 gallons OF WATER over the first 24 days consumed AT MY HOUSE. And that doesn't include all the water and nugget ice consumed at work... or the clear sodas... Actually now that I think about it, I MAY have hit the two gallon a day mark. #feelinggood #hydrated

One year ago today, Otsuka (the company that manufactures Tolvaptan) published the following  press release  (citations removed but available via the link): TOKYO, JAPAN – April 24, 2018 – Otsuka Pharmaceutical Co., Ltd.(Otsuka) announces that the U.S. Food and Drug Administration (FDA) has approved JYNARQUE™ (tolvaptan) as the first drug treatment to slow kidney function decline in adults at risk of rapidly progressing autosomal dominant polycystic kidney disease (ADPKD). ADPKD is a genetic disease with consequences that can lead to dialysis or kidney transplantation. It is a progressively debilitating and often painful disorder in which fluid-filled cysts develop in the kidneys over time. These cysts enlarge the kidneys and impair their ability to function normally, leading to kidney failure in most patients.[iii] ADPKD is diagnosed in approximately 140,000 people in the U.S and impacts families across multiple generations, since a parent with ADPKD has a 50 percent ...

Due to the risk of 'serious and potentially fatal liver injury', the dispensation of Tolvaptan is very closely monitored and the PHARMACIES THEMSELVES need to be certified under the Risk Evaluation and Mitigation Strategy ('REMS') Program. Because of this, there are currently only three specialty pharmacies in the US that are certified to fulfill Tolvaptan prescriptions: AllianceRx  (Walgreens), Avella (Optum) and PANTHERx . If you're ever in a situation where you need to go through a specialty pharmacy, check out online reviews to see how others have fared from a customer service standpoint. SERVICE MATTERS! I queried members of the Tolvaptan Community on Facebook when I had to choose. Based on their recommendations, I decided to try Avella. As I'm quickly approaching my one month anniversary of taking Tolvaptan, I was pleasantly surprised to receive a call last week from Avella. A very personable customer service rep asked me about my experience so far...

After 3 weeks on the 45/15 dose of Tolvaptan (45 mg in the am and 15 mg in the afternoon) I found myself sleeping through the night without waking up to drink water and use the bathroom. Heavenly. I was afraid to tell anyone in case I jinxed my good fortune. Then one night I was craving Culver's. The pot roast sandwich. The fries. It was delicious. And that night I once again found myself waking up every two hours with a seemingly unquenchable thirst and multiple trips to the bathroom Coincidence? Connection? It took two days of drinking water to flush that salt out of my system. And now I've returned to sleeping through the night. I knew I was supposed to be watching my salt intake before (high blood pressure) but the added incentive of allowing me to sleep through the night may be just what I need to keep my hand out of the chip bag.

Continuing with my love of cold water is my love of ice! My office has a wonderful pellet/nugget ice maker and I'll admit that I fill two water bottles with the frozen gold before I leave for the day. Maybe I should bring an insulated thermos and haul it home in bulk. Hmmm. So it's no wonder that I've tried to find a similar model to have at home. Well if you have $3,500 lying around and would like to send it to me for my ice fund, that would be great. In the meantime, I'll have to settle for something "close" to perfection. Online reviews say that the Portable Opal Nugget Ice Maker is the perfect compromise for home use. Not that it comes cheap. Amazon had it listed for $475 when I wrote this. For frozen water. You may also know this as "the good ice". Opal makes the chewable, crunchable, flavor-saving nugget ice you love. The Opal is an affordable nugget ice maker for your home. Opal only does one thing: make chewable, crave able nugget ic...

When I first heard about Tolvaptan, I truly wondered if I'd be able to choke down the amount of water needed to keep my kidneys hydrated and happy. I like water, but TWO GALLONS?!? Yikes. About nine months before starting on the meds, I purchased the Primo Water Cooler Dispenser + Pet Station . I live in a rural area and have well water so wanted to make sure that I wasn't ingesting minerals that could harm my kidneys. Also, I have softened water and wasn't sure if it was increasing my sodium levels - better safe, right? Plus - given that I have three dogs - I loved the idea of tying it together with a water dish for the pups. READ THE DESCRIPTION BEFORE YOU BUY! So somehow I thought it was a self-filling water dish. It is... but only if you self-fill it by pushing the button to fill it. DOH! Oh well. Over the summer, I enjoyed the crisp, clear water but I didn't truly appreciate it. Enter Tolvaptan. Now I CRAVE water. The colder the better. The icier th...

Oh how I hate the morning commute to work. Oh how I hate the traffic. Oh how I hate the wasted time. And now... Oh how I hate the fear of peeing myself because I'm stuck in my car in a traffic jam and am unable to get to a bathroom in time. The other day I was sitting in my car, feeling stranded on the freeway as I waited for the other cars to start moving so I could make my way to work and, more importantly, A BATHROOM! Because there's not much else to think about as you're staring at the bumper in front of you, I started playing the what if game. What if I can't hold it? What if I pee myself? I can't go home and work because my laptop is at the office. How could I get my laptop without embarassing myself too much? Oh wait. I have a cardigan sweater on. Could i possibly wrap it around, make my way to my desk and then flee before anyone's had a chance to witness the shame? Okay. I think I can make it. Cue the traffic. It moves. I get to work on ti...

I'm two weeks into my Tolvaptan adventure and I'm happy to report that liver tested with no change to the pre-medication levels. A shout out to my liver. Way to go! One of the potential side effects of the medication is liver damage (which has been proven to be reversible as long as it's caught early). Discontinuation of the drug causes the reversal. Fortunately, the reported incidence of liver damage is relatively low at only 4-5%. More recently, in large registration trials of long term therapy in patients with ADPKD, serum aminotransferase elevations occurred in 4% to 5% of patients on tolvaptan, compared to only 1% of controls.  Furthermore, clinically apparent liver injury occurred in approximately 0.1% of treated patients.  The time to onset of illness ranged from 3 to 7 months (Case 1), but occasionally arose during long term therapy (Case 2: after 3 years of intermittent use). National Institute of Health Crossing my fingers that we'll be able to incr...

As much as I hate to admit it, my life now revolves around my meds. Don't get me wrong, I've been on other maintenance drugs for a LOONG time. But somehow the timing of when I took them never seemed to be top of mind to me. No more. Not now that I'm on Tolvaptan. Late doses mean that my sleep suffers. Lack of water means my kidneys suffer. So I started using an app - Medisafe - to help me keep on track. It allows you to interface with your pharmacy (CVS, Walgreens, Rite Aid) or clinic and download your current prescriptions and dosages. All you need to do is schedule each one, select an alarm sound and you're good to go. When the time comes, an alarm sounds and a screen like the one above shows up on your phone. Take your dose, click on the Take button (showing as 'Un-Take' sine I actually took my dose) and go on with your day. The app stores a record of when you took everything so you can talk to your doctor about schedule compliance....

Just took the last dose for the week and I have to say that it went pretty well. The biggest change has simply been planning ahead and being aware. Bringing water with me when I'm out and about. Scouting for bathrooms before I need them. Keeping a full water bottle beside me when I work. Using the bathroom before meetings, before leaving home, before leaving work. Prepping water bottles to have bedside before i go to bed. Manageable. Totally manageable.

Fri Apr 5 2019 - Isn't it strange how quickly your new crazy becomes your new normal? Last night I went through less than two litres (64 oz) of water and was actually able to sleep for 2 1/2 to 3 hours at a shot. Now I'm wondering if something is wrong. Isn't that just too funny? Whatever it is, I'll definitely take it. I actually woke up feeling almost refreshed.

Wed Apr 3 2019 - And THIS is how we prep for bed. Bring it Tolvaptan. Bring it.

Tues Apr 2 2019 - Oh dear God! What a night! That plant? Yeah. Could have been me. Not taking my second dose until 530pm? Never going to happen again. Wow. Just wow. I woke up every 90 minutes. I went to the bathroom every 90 minutes. I GUZZLED water every 90 minutes. I felt like I was traversing a desert and hadn't had a drink in days. I drank three liters (about 3/4 of a gallon) of water DURING THE NIGHT! Who does that?!? So here are my learnings from my first day & night on Tolvaptan: Don't take the meds late - make sure I get that first dose in at 6am and that second dose in at 2pm, Start building up that bladder durability during the day. Act like it's strength training. Feel the urge and delay going as long as is feasible (accidents are not an option). Hopefully this will allow me to sleep longer than 90 minutes. If I'm going to drink that much water, I'm prepping it before going to bed and having it bed side. Last night I was running up...

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...