Skip to main content

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.

Comments

Most Read

Words to live by

I never knew - couldn't even fathom - how tough it is to live with a chronic disease. Sure I've been hypothyroid for YEARS but it never really felt serious. I take a little pill once a day. There are no side effects. I get my energy back. Good and good. Polycystic Kidney Disease is nothing like that. There is no cure - save transplant. But even then you take anti-rejection drugs for life. If you forget your meds, you risk transplant rejection. How's that for adding a little anxiety to your anxiety? There is a single drug that SLOWS DOWN the disease's progression, but that promise of dialysis and/or transplant is always right over the horizon. The side effects of that drug are constant thirst and the knowledge of every public rest room within a hundred miles. And while you wait for the disease to progress, you get to experience soul draining fatigue, anxiety, physical discomfort as your kidneys expand to fill your abdominal cavity, the look of a pregnant belly (...

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 pu...

Running on empty

Energy. What's that? During my last nephology appointment, I mentioned that my stamina was declining and that I'm, in a word, TIRED! My doctor's first thought was to check TSH (thyroid-stimulating hormone) levels. Excellent idea. Unfortunately, my levels are medicated, controlled, recently tested and within the 'normal' range. Oops. To be fair, my energy levels are reminiscent of the months prior to being diagnosed with hypothyroidism - not quite as severe, but still not good. On days I work from home - I'm a data analyst/programmer - I frequently have to either take a nap over my lunch break or crash once I'm done for the day. On days I go into the office, I often myself in bed by 8pm (and sometimes earlier). Sigh. This is no way to live life. I've asked about this in the  Polycystic Cysterhood Facebook group  and others agree that they've seen their stamina and energy flag as kidney function has declined. At least I'm not alone. U...

Truth

The need is real! I don't know if it's because prior to Tolvaptan I routinely used mind over matter to delay my trips to the restroom, but I think I'm doing okay these days. Is it possible that I built up bladder muscles over the years? Don't get me wrong, the need to pee is omnipresent. But it's one of those things where I can make note of it, finish what I'm doing (or finish a couple more things) and then make my way to the facilities without the fear of letting things fly. But I'm not stupid. You'd better believe I'm making the restroom my last stop before starting my 45 to 60 minute commute to/from work. A soggy crotch is NOT becoming.

Expensive but affordable

There's no denying it. Tolvaptan - brand name Jynarque - is CRAZY expensive. The wholesale price is just north of $13,000... A MONTH! Dear God. I've searched and searched to find out how much pharmacies are beings charged for the drug, as well as my insurance company, but I've yet to find a source. Surely there has to be some kind of 'negotiated price' like you see with healthcare?!? My doctor suggested increasing my dosage - after I'd already received the next month's supply - and I about hyperventilated. There's no returning drugs and the thought of wasting $13,000 of pills left me queasy. So instead, we decided that I'd stay on the lower dose for another month and then increase the dose the next time. Deep breaths... Regardless, Otsuka (manufacturer of the drug) is working to make sure that the patients' out of pocket for the drug is manageable. Through their MyPASS program , patients with commercial insurance can acquire the pr...