I’ll get the semi-bad crap out of the way right off the top:
I didn’t sleep again last night. Not for one second. And a three-and-a-half-hour drive to clinic today (and back home tomorrow). I am beat.
My feet are still bugging me but I’m just going to wait it out. They’re not terrible, but it’s not pleasant. If it is neuropathy from the Velcade, I believe Dr. T said that’s permanent. So…what the hell. If I already have it, I already have it. I’ll just have to put up with it. There’s a chance that maybe it’s just plantar fasciitis, although it’s awfully coincidental that it’s started up in both feet at the same time. I’ve had that many times in the past, and I typically get it in one foot or the other.
And I’m still just really fatigued. Not sleeping doesn’t help of course, although that’s not a nightly thing. Just a Wednesday nightly thing. But I feel like I could sleep for a week. I do four things around the house, and I’m ready for a nap.
Lo and behold, TriCore actually processed the latest 24-hour urine collection AND got the results to Dr. A in Pittsburgh. I’m in shock.
The results were a bit of a mixed bag. The protein in the urine had improved by about 1000 mg to 1763 mg, but the creatinine increased to 2900 mg. I don’t really understand why or how that happens. As I’ve said before, it just seems logical to me that if one marker of kidney function improves, the others will too. But obviously that’s not the case. I also don’t understand how the creatinine in the blood and the creatinine in the urine correlate. Obviously it’s apples and oranges. But my blood creatinine runs under 2.0 so it was disappointing to see the urine creatinine at 2.9. But there’s nothing I can do about it.
The eGFR based on the creatinine in the urine is 20; based on the creatinine in the blood, it’s 38. I think I’m going to go with the 38.
In her message to me about the creatinine, Dr. A said, “Stay hydrated.” God. Here we go again. I replied with, “Still drinking 80 ounces of water a day.” I have a video visit with her on Monday. I’ll ask her how many ounces she WANTS me to drink. I think 80 is more than plenty. Any more than that, and I won’t sleep at all because I’ll be up peeing all night long.
At the lab yesterday, my hemoglobin was 10.6, so still no need for an Aranesp shot. Amazing. I think it’s been six weeks since my last shot? Something close to that.
I got the Velcade shot of course. I have one more month of that. I’m not really clear who’s in the driver’s seat for what comes next, Dr. A or Dr. T. Another question I’ll ask her on Monday. They seem to work and coordinate well together, so it may continue to be a joint effort. (My local nephrologist seems to have checked out of the picture. I haven’t heard from her since I was in the hospital in November. That’s really odd.)
My blood pressure was 120/81 yesterday at the lab. That’s the best it’s been since before last June when I was taken off the lisinopril. And my blood sugar was 111. All that’s heading in the right direction.
The swelling is still overall better, and my face is very slowly losing some of its puffiness. My eye is still red but improved.
I got my new glasses yesterday. I think they’re going to be okay but my eyes are so tired today it’s hard to tell. I can definitely see the computer screen better than with my old glasses but it still doesn’t seem quite right. But again, it could just be me today. I have a month to make sure they are okay. Trust me, for as much as they cost, I will definitely go back if they aren’t perfect.
Yesterday I went to Walgreens to pick up the dexamethasone (the steroid I take on Wednesdays). Normally I have a $10 copay but yesterday it didn’t cost me anything…which means my insurance company definitely thinks I’ve hit my maximum out of pocket expense.
I can’t recall if I’ve said this before, but I live my life on a budget. Every dollar I spend gets accounted for. So if my maximum annual out of pocket is $5500, that’s $460 a month. Right now I’m only putting away $350 a month for health care so I’m going to have to revamp that damn thing and figure out how to rob Peter to pay Paul. Between this and vet bills… oy. All I can say is I’m glad my house is paid off.
I just now got a message from Dr. A, bumping my appointment to next Friday instead of Monday. It’s 8:45 pm her time, and she’s still working. She’s messaged me at 3:00 am before and arranged for phone calls with me on her days off. And to think when I was young and naïve, I wanted to be an endocrinologist. No thanks.
Hemoglobin: 10.6
Protein in the urine: 1763 mg
Creatinine in the urine: 2.9 g
Creatinine in the blood: 1.8 g
eGFR: 20 or 38, take your pick
Low, Low, Low 