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To thine own self be true


About four weeks ago I had an appointment with my nephrologist. Love her. She's been a great advocate for me as my PKD progresses, going out of her way to do things like prescribe Tolvaptan / Jynarque (I'm her first patient on the medication) and doggedly pursue a radiologist to get a total kidney volume (TKV) calculated from a recent CT scan.

One of the things we discussed briefly was my report of fatigue. She suggested a TSH (thyroid) test to which I shared that I had recently been tested and my levels were within the acceptable range.

Somehow that's where the conversation stopped and we continued onto another topic.

A couple of weeks later as my fatigue continued, I reached out to her and asked if we could add iron and Vitamin D tests to my next lab appointment (I go in every four weeks to monitor liver function while I'm on Tolvaptan). Yay! She said yes.

Fast forward to today. I got my labs done - and got the results back.

My interpretation of the results is that I'm borderline anemic and low on Vitamin D.

Hallelujah!

Granted I still need to wait for my doctor's review of the results and (hopefully) instructions on how to fix my levels. But the important thing here is that had I not pushed for the tests, my fatigue could continue and my frustration with my health, my energy, my body would continue.

And when you have a chronic disease like PKD, you really don't need anything adding to overall frustration levels.

Also interesting was that I'm not 100% sure that my nephrologist saw these tests as part of my PKD treatment as she suggested that if fatigue continued to be an issue I should see my primary care provider.

Which brings us to another key point. Just because your doctor treats chronic kidney disease, they may not be well-versed in some of the subtleties of PKD. My own research had shown that anemia and low Vitamin D levels could cause fatigue when you're cyst bound. It's possible that that's not the case with other varieties of kidney disease.

So remember. As great an advocate as my nephrologist is, nothing compares to self-advocacy.

Knowledge is power. Be courageous and use it to your advantage.

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Round 2 deja vu

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.

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.

Winner Winner!

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...