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Move along, nothing to see here

I've been on the increased dose of Tolvaptan / Jynarque for the past week (up to 60/30 from 45/15) and I'm happy to admit...

It's been a non-event.

Water consumption has remained pretty much the same.

No real change in thirst.

One bathroom break per night.

Manageable.

I see my nephrologist in two weeks so depending on what she thinks, I may be moving up to the Big Leagues - 90/30 - soon.
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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...
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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.
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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.
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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...
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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.
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