Monday evening I got a message from Dr. A saying she had tried to call me but there was no answer. I was out of town for work and of course didn’t have cell service out in the boonies. She said she got my lab results back from Friday and my creatinine levels were even higher than before, and therefore my GFR dropped another point. Man. I’m circling the drain.
She took me off the lisinopril completely (lisinopril can raise creatinine levels) and put me back on Norvasc. So my new BP regimen is metoprolol (which I still have difficulty pronouncing) in the morning and Norvasc in the evening. She also said that if the creatinine didn’t come down, she will likely take me off Bactrim, the antibiotic I’ve been on since getting the Rituxan. That can elevate creatinine as well but she said she didn’t want to change everything at once so that we know what might be affecting the levels. Makes sense.
She said in her message that she spoke with Dr. F, my local nephrologist, but didn’t provide any details of the conversation. But I think it did have something to do with the medication change.
With no lisinopril (damn, that was short-lived), I was back to my old concern of stroking out. But I’m happy to say that so far, my BP has been pretty okay. There are times when it’s REALLY good and others when it’s in the 130s/90s. I’m supposed to report this back to her, which I’ll do this weekend, and she also wants to know if my heart rate goes above 65. I googled normal heart rate, which is 60 – 100, so I wasn’t sure why mine had to stay below 65. (Which it’s not by the way; it’s around mid-70s to mid-80s.)
She told me she wanted me to have repeat labs done Wednesday. Same as last week, I’m just so surprised (and skeptical?) that a change in medication could affect a change in the lab work in only two days. Beats the hell out of me.
She also said she wanted me to have another kidney ultrasound—on Wednesday. I don’t know how things work in Pittsburgh, but here in New Mexico, a) I need a referral. I can’t just show up and say, “Hiya! I need a kidney ultrasound, you dig?” and b) hahahahahahahahaha! She wants me to get that scheduled in two days? (One day, actually, since it was already Monday evening by the time she messaged me). Yeah okay! I’ll get right on that. It’s scheduled for the end of the month. Wonder what she’s looking for now? Some questions I just don’t want to know the answers to anymore.
I couldn’t even get the blood work done Wednesday since the lab here closes at 5:00. God help you if you have a freakin’ J-O-B and need to get blood work done. I won’t even start in on this again. I get too pissed off. But… I was able to go Thursday since I was working in town. We should have those results early next week.
Today I had to go to the other lab (the hematology lab) for my regular two-week check. As I suspected, I needed an EPO shot. But my hemoglobin wasn’t too low; it was 9.3. As worn out and exhausted as I’ve been this week, I wouldn’t have surprised if it were much lower. This week I feel like how I felt when my hemoglobin was down in the low 8s last fall. Three nights this week I came home, took a nap for three to four hours, then basically got up and went to bed. I really hate that. I get nothing accomplished. Maybe it’s being back in clinic, the work travel, and the heat combined with the anemia. I don’t know. I just know I’m back to not being able to do more than two things before I have to sit down for a bit. I’d chalk that up to my general laziness but it’s more than that. I keep telling myself, “Okay, today’s the day… I’ll turn some music on and clean the house!” But instead I end up on the couch, asleep. For someone like me who really likes to check things off the to-do list, it’s a disappointment. What a life.
I asked the nurse today about the heart rate thing. She said the same thing as google, that a normal heart rate is 60 – 100. I told her what the doc said about alerting her if my heart rate goes above 65. The nurse asked what BP meds I was on. She said that was odd as metoprolol can cause the heart rate to drop too low. Hmmm. That made more sense. Maybe I misread the doc’s message? Anyway, my BP was good today. I got the shot (dang, it hurt this time! It rarely hurts) and was out the door.
When I got home, I reread the doc’s message. Nope, it says to let her know if my heart rate is above 65. But now I’m guessing she just made an error and meant to say “below.” I tried to schedule my six-week follow up with her but the scheduler said she was booked through the end of the year. No surprise. I told her, “The docs always throw the schedulers under the bus! They tell the patient a month or six weeks, and they know they don’t have anything available! They make you look like the bad guys!” She said I was the first one to ever say that to her and that it was a frustrating situation. She told me she’d talk to her supervisor and call me back. If it were up to me, the doc and I could just talk on the phone (that I could do while driving to clinic) or just continue with our messaging through myChart. But I guess she’d prefer a video visit.
Project: when my symptoms first started, I gathered all my labs going back as far as I could find, which was 2002, and entered them into a spreadsheet. I haven’t kept up with that in several months. I need to do that. Yes the information’s available online, but I like seeing the trends over time. I guess maybe during my vacation time at the end of October I can work on that (since I obviously won’t be going to Italy as planned!).
Tomorrow: my prednisone dose drops to 2.5 mg. One step closer to being off this devil’s drug.
I started reading up on dialysis this evening. Ugh. But hopefully, the more info and understanding I have, the less freaked out I’ll be.
Hemoglobin: 9.3
eGFR: 17
Low, Low, Low 