Between this past Friday and the first Friday in October, I have multiple appointments every Friday except for one. (I’m going to do my best to stay in my jammies and not leave my house that Friday). This Friday I had to go the “regular” lab and have blood work done for my local nephrologist. I also had to repeat the 24-hour urine test.
This was a weird thing. In addition to the 24-hour urine test, the doctor also requested a random urine catch (that’s not the weird part; I have to do that once a month). I knew I was going to be starting the 24-hour urine that day so I got to the lab early so I could start at 7:00 as per the instructions. When the phlebotomist handed me the cup for the random catch, I told her I wouldn’t do it then but would do it the next day when I returned the giant jug of pee. She immediately got very annoyed with me and her whole demeanor instantly changed. “So you’re not going to do it today?” “Well, if I have to do the 24 hour one, don’t I need to collect ALL my urine during those 24 hours?” “Yes,” she said, super annoyed. “So then I can’t do the random collection today. I’ll do it tomorrow when I drop off the container.” “But we already printed a label.” “And…?” “Well now I have to re-enter the order.” “Okay, thanks.” [Ha, she wasn’t pleased with that response.] “Did you say when you checked in at the desk you weren’t doing the random catch today?” “No. He didn’t ask me.” Not pleased with that either.
And then she just did the blood draw and didn’t say another word to me other than asking me to verify the labels on the tubes. I don’t get it. I’m not sure how my needing to follow the protocol for the urine collection was somehow pissing her off. And it was so early in the morning she couldn’t have already been having a bad day! Oh well. I will say I was surprised when I called Tri-Core later to make sure she had indeed put the order back in; she actually had. Score one for them.
A bit later, I had to go to the lab at the oncology/hematology center for my regular two-week hemoglobin check. I seem to always see the same phlebotomist there. Vicki is very nice. And very tall.
I only had an hour between that appointment and my video appointment with Dr. A in Pittsburgh so I got to the lab early in the hopes they could take me in sooner. Fortunately my plan worked, and they did the blood draw a little early but then I had to wait to see if I needed shot or not. I didn’t suspect I did, since it had only been two weeks since my last one. Just as I was thinking I was going to have to leave without getting the results, the nurse came out and said my hemoglobin was 10.1 and no shot was needed. Good deal. However, I suspect that I will need a shot at the next visit since I was just barely over 10. If so, that means it only lasted four weeks this time instead of the six it’s been lasting. But who knows. I could be wrong.
I raced home and logged in to the video appointment on my phone, and then I waited. And waited and waited. My appointment was scheduled for 11:30. At noon she sent me a message: “Running behind. Will log in in 15 minutes.” At least I was at home so I could be doing stuff as I was waiting. But 45 minutes late?? That’s pushing it. However I didn’t feel like I had the option to miss the appointment so … I just waited.
As I suspected, she did not receive the results of the blood work yet nor the urinalysis. She commented, “It would be easier if you just moved to Pittsburgh!” Luckily, the labs and urinalysis I completed for the local doctor are the same as those Dr. A needed so I’ll just forward to her when they come in.
She did remove one of my blood pressure pills with the plan of continuing to remove others one by one as long as it stays well-controlled. She reviewed all my status and symptoms. I was happy to report that the swelling was much improved. She also suggested that if my sense of taste didn’t return after completion of the fluconazole, she could arrange a video visit with an ENT there. I said I am definitely be interested in that but will wait a bit after finishing the meds.
Without the lab results there wasn’t much more to do; we’ll know more when they come in. Due to the change in the BP meds, I will repeat labs in two weeks so she can check my potassium level, and then I will repeat the whole shebang in six weeks. If things aren’t improved at that time, I’m sure we’ll be discussing the next step: chemo round two. If it’s needed, I definitely want to do that this year so that it’s covered 100% under my insurance.
I told her I was down to 5 mg of prednisone, and we reviewed the remaining schedule for that. She explained that the excruciatingly long taper down is due to the fact that I’ve been on it so long and at fairly high doses. This suppresses the function of the adrenal glands to produce cortisol, its own steroid. The tapering down allows the adrenal glands to once again start ramping up production. This I didn’t know. I thought the taper down protocol was to spare damage to the liver. I don’t remember where I got that information but I guess that’s wrong. She said to watch out for dizziness as it can be a sign my adrenal glands haven’t stepped up making cortisol. Will do. I think it will be okay though.
This Friday I have a video visit with the local nephrologist. Not sure what the goal of that appointment is, but I guess I’ll find out.
Hemoglobin: 10.1
Low, Low, Low 