The Good, The Bad, and The Oh My God

My lab results the local nephrologist ordered were available Wednesday.

The good news: the protein in my urine dropped to 3000, which is still way too high but at least much improved from the nearly 10,000 it was the last time.

The bad news: the creatinine in my blood was very high, meaning it’s not being cleared out by the kidneys. And since this number is the primary factor that determines the eGFR…

The Oh My God: My eGFR dropped from the low 30s to 18, which puts me in Stage 4 kidney disease.

That hit me pretty hard, and I was grateful to be at work and to have a busy day so I couldn’t just dwell on it.  I took screen shots of the results to send them to the PA nephrologist (since she never got the results of the tests she ordered) along with a note asking if the GFR could improve. But that was all I had time for.

She messaged back later and said, yes, the GRF could improve, and it’s possible that the combination of meds I’m on is causing a rise in the creatinine. She reduced my lisinopril to 20 mg, the HCTZ to 12.5 mg, and increased the spironolactone to 75 mg.

She said she wanted me to repeat blood work that Friday. That seemed a bit odd to me—I would have only been on the new med doses for one day, maybe two. But what do I know? Maybe it does change that quickly?  I guess we’ll see.

So my multiple-appointment Friday just got another addition. It was actually kind of funny when I got to the lab and told them it was a faxed order from Dr. A. She found the order—for the 24-hour urine test from about two weeks ago. Nope, that’s not the one. Luckily the actual order was there. I half-expected it not to be.  Dr. A said she ordered it “STAT.” I reminded them again to fax the results to her. Fingers crossed, hey?

A bit later in the morning I had a video visit with my local nephrologist, Dr. F. I was reminded in this visit why I like her.  Yes, we had some issues in the beginning when she dropped everything in my lap to figure out, but I still like her.  She’s quite direct, she’s aggressive, it’s clear she knows her stuff. She just doesn’t know about my disease, which isn’t surprising.

As I rambled off the many many pills I’m on, she had some concerns about a few of them. I’m on an antibiotic until the end of the year because of the chemo treatments and the suppressed immune system. It’s basically a prophylactic to help prevent me from getting sick. She said it raises blood pressure and increases potassium (although my potassium was normal this go-round).  She was also concerned about the 75 mg of spironolactone because she said that amount can adversely affect kidney function. She asked if I was having any swelling, which I’m not. She said she would advise cutting that back or stopping it altogether. I told her if I had my way, I’d stop all these BP meds, start again with just the lisinopril/HCTZ, and add the other stuff in IF needed.  I’ll have to talk to Dr. A about that.

My phosphorous is normal but at the upper limits (phosphorous? Whoever thinks about phosphorous??) and said I should avoid dairy (not a problem, not much of a dairy person), dark sodas (I haven’t had a soda in about 25 years), and nuts. NUTS??? Including peanut butter?? YES, including peanut butter.  Son of a bitch.  This is a cruel freakin’ world.

She also told me my parathyroid hormone was VERY low, so low she’s not convinced it wasn’t an error. But in the event it’s not, she took me off the vitamin D and calcium. She said when you take supplements, you run the risk of shutting down your body’s own ability to produce this stuff naturally (much like the prednisone and the cortisol made by the adrenal glands).  I wasn’t taking a LOT of either med, just 600 mg of calcium and 2000 IU of vitamin D. But… you want me to take fewer pills? I’m totally on board. She’s going to repeat that test in two months.

I asked if she would be willing to talk to Dr. A regarding her concerns with the medications. She said she would but she doesn’t want to “step on her toes because she’s the expert.” I said I understood that, but I’m just the patient. I can convey this information but I can’t have any intelligible conversation about it. And I didn’t think Dr. A would have an issue with this either.

We scheduled another visit in two months, and as soon as I finished with her, I messaged Dr. A with the gist of the appointment (yes I took notes; I always do) along with her concerns. I asked if she would be willing to talk with Dr. F about the medications. I said that I had told Dr. F I didn’t think it would be an issue as I’ve never gotten any sense of “ego” from Dr. A. (For example, she signs all her correspondence with me with her first name. Never “Dr. A.”)  She responded back pretty quickly that she wouldn’t mind at all. “It’s all about teamwork,” she replied. She also said she had already called their office and left a message.

So we’ll see what the blood work says, hopefully on Monday. I was already supposed to have it repeated this coming Friday, and I imagine that will still be the plan.

My newish struggle now is educating myself about dialysis. I’ve been putting this off because I’m not really one to worry about stuff until it’s needed. But I think it’s time to face facts. And if I put if off too long, and if it IS needed, I’ll be too overwhelmed with dealing with it that I won’t have time to read up on it.

I don’t like to think about it, of course.  I don’t even know all the ways my life would change.  Is home dialysis an option for me? Can I still work? I need to work! I need health insurance!  So it’s time to read up on this and figure out what questions I have.  I need to be prepared.

Oh, how about ending on some great news?? My sense of taste is finally (although slowly) returning! After three months! I want a Blizzard!

Hemoglobin: 10
Protein in the urine: 3363
eGFR: 18

Some of you will get the relevance. https://www.youtube.com/watch?v=h1PfrmCGFnk

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