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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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