What Are We Missing Here?

Yesterday I had more lab work done, of course.  If a week goes by with no lab work, I just might be dead. This was for Dr. A in Pennsylvania. Monday I go back for another round for my local doctor here.

This morning, bright and early, I got a call from the nurse in PA saying that my potassium was “dangerously low,” so low in fact that the lab called Dr. A’s office to alert her.  Dr. A called in a prescription for potassium supplements to my pharmacy. I picked up the giant horse pills today.  But as large as they are, I’m SO glad it’s not the powder-mixed-with-water stuff they gave me at the hospital. That stuff is FOUL.

I don’t know why my potassium would be so low. The only other time I’ve had low potassium was the time I had food poisoning and wound up in the ER. As I mentioned before, I was completely dehydrated from expelling from both ends (hey, don’t judge, we’ve all been there), and they rushed into the room, scaring my poor mother have to death, stating that my potassium was so low they thought I might go into heart failure.

But that’s certainly not the case now. I looked it up online to see what might cause this, and nothing applied to me: not on diuretics, not dehydrated, no alcohol abuse. Well, nothing except chronic kidney disease. Kidney disease itself can cause low potassium. I haven’t yet googled why.

I read that a side effect of low potassium is fatigue. This I did not know. So maybe between the low hemoglobin and the low potassium, that’s why I feel like I’m circling the drain. Maybe with the potassium supplements I’ll start feeling more human in the next few days? Hope springs eternal.

No word yet on the other lab results, specifically the creatinine. I’m sure I’ll hear soon.

Other weird stuff: since leaving the hospital, I have a lot more swelling in my legs by the end of the day, more noted bruising, and my blood pressure is high again. None of this was happening prior to going into the hospital. (I’m not saying the hospital stay had anything to do with this; that’s just the time marker when it all started.) So what the hell does that all mean?  I just feel so strongly like we’re missing something here. And it’s way beyond my scope to figure it out.

It dawned on my today that I have been holding on to some guilt or responsibility for the outcome of these test results. For example, if you have lab work done, and your cholesterol or blood sugar is markedly increased from the last time, you will probably think, “Shit, I haven’t been taking very good care of myself. I didn’t watch what I was eating, or I forgot to take my meds regularly.” Something within your control. And you’ll likely get a lecture from the doc.

I realized I was feeling as though I was doing something wrong or somehow letting the doctor down when my creatine was high or my potassium was low.  How idiotic is that?  I mean DUH, I can’t control these things. At all. IT IS THE NATURE OF THIS DISEASE. It’s going to do what it’s going to do, and there’s not much I can do to affect it. It’s on its own trajectory. As dumb as it sounds, it was a relief to grasp that concept because I don’t need to blame myself for all this crap. No good will come from that.

I have a video visit with Dr. A this Thursday, and I’d bet money on the fact that she’s going to recommend another kidney biopsy. That’s fine. Whatever. I’m a human pincushion at this point.  I’m used to it. And maybe it will shed some light.

I can’t believe I forgot to say that as of today I’ve been off prednisone for an entire week!  I don’t feel much different but I’m just glad to be off of it. And yep, I feel pretty confident I’ll be back on it again soon. But for now, the dreaded drug is leaving my system.

I’m also down from a high of 27 pills per day to only 10! (Well, I guess now with the potassium, 12. But that should be only temporary, I hope.) They’ve taken me off three blood pressure meds, vitamin D, calcium, fish oil, the antibiotic (and therefore I no longer need to take the probiotic), and even my steroidal nasal spray, and probably a few other things I’ve forgotten. All my damn pill bottles fit into one smallish box now!

I’m working the next two weeks then I’m off for two weeks. I’m pretty sure I’ll have a number of appointments scheduled during that time. I already have three. I still need to schedule an eye exam. And I’ll probably have a kidney biopsy too.

And to think I was supposed to be in Italy. I mean… Italy, or a needle in your kidneys?? Same same.

For you “Office” fans: https://getyarn.io/yarn-story/a1257c23-e7fa-4034-9708-854b54ec4394

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