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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.

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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...

Fresh, ICE COLD water

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...

One week down

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.

Wear your kidneys

Now how's THAT for a t-shirt?!? I want one. I'm not familiar with the company that supplies it but I believe it's one of those 'if you design it, we will create it and they will buy it' places. The Spreadshirt site offers the shirt for about $20 plus shipping and allows you to select size, shirt color and (I believe) the kidney color. The designer, Emblem Design, has other kidney designs as well. A purchase may be in my near future.

Little Tolvaptan quirks

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...