Oops I did it again

Oops!

I advocated for myself again.

After getting the results from my latest CBC (Complete Blood Count), my doctor put me on daily Vitamin D-3 to increase levels but did not recommend iron supplementation for (what I consider) borderline anemia.

I was glad to hear low Vitamin D might be adding to increased fatigue but I still wondered... I have a history of low Ferritin levels, despite sufficient RBC/hemoglobin counts.

So... I made an appointment with an independent lab and had them check my iron levels.

Results? My Ferritin level is at 51, well within the 'normal' range of 100-232. Still, I wondered... So I did further research.

My low Ferritin level was originally discovered when I was diagnosed with Restless Leg Syndrome (but I may actually have Periodic Limb Movement Disorder). So I looked up literature regarding recommended Ferritin levels given RLS/PLMD.

Huh. Treatment recommendations are that Ferritin be no lower than 75 for people with RLS/PLMD.

Bingo!

So now I get to go to my doctor today and admit that I did an end run. Granted I had asked for the Ferritin test up front but was denied. And I haven't attempted to self-medicate since I got my results back two weeks ago.

Could I have just waited until today's appointment to make the case for testing? Yes. But having the test results in my back pocket gives me more information to work with - and perhaps a bit more confidence in my request.

My plan is to bring up the borderline anemia results to discuss. And then I'll own up to what I did. And we'll go from there.

Always remember that you are your own best advocate. You live with your body and your symptoms 24x7. Be aware of your symptoms. Be aware of your history. Information is power.

Comments

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...

My Two Gallon Habit

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