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Teach us to fish

I've recently started trying to educate myself on current research and insights around PKD and all the diseases that seem to show up along with it. 

While it's exciting to learn that we're on the verge of significant innovation in how CKD and PKD are diagnosed and treated, I find myself a bit disappointed.

Instead of shouting the news from the roof tops... instead of spreading the excitement, the medical community hides the punchline. They share their findings in dry journal articles, steeped in language that is hard to understand.

I realize the audience for the articles is not Joe or Jane Public. I realize that they're scholarly discussions of research methodology, statistics, inference and conclusion. I also realize that this is potentially a single data point that may, or may not, contradict current beliefs.

Regardless, wouldn't it be nice if these studies included a simply worded summary of the work? Something easily consumable by the general public?

In a recent position paper published by the Kidney Health Initiative, one of their deliverables is actually describe as a 'Patient Friendly One Pager.' 

KUDOS!

Maybe it's a sign of things to come? I sure hope so.

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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...

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.

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...

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.

A drop isn't always a decline

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....