Our appointment in Philly this morning was, well, disorganized. We arrived early, as usual. The usual receptionist, however, did not. And while her replacement was a lovely, lovely woman, there was nothing she could do about the fact that our doctors hadn't written any orders for blood work. And I do mean, not ANY. Not for us, not for half of the other clinic patients. So we had to wait for a nurse practitioner to arrive and write orders. No sweat - we went and had breakfast, figuring that once we got the orders, we'd take the meds. How long could it take, after all?
Turns out, a while.
The way it usually works is that we arrive at the lab just before it opens and are first or second in line. If you get your orders late, you end up waiting. And waiting. And waiting..... If you get your orders early, do your blood work on time, and then see the doc, your test results are almost all ready. If you get them late, not so much.
In between all of this, we met with a study coach and received our computerized pill sorter. I underestimated when I said it was the size of a laptop. It's the size of an OLD laptop, only thicker, and not quite as heavy. It's going to live on top of our microwave, and there isn't a lot of room to spare. It holds a week's worth of meds at a time, so I'll have to sort more often since I usually do two weeks' worth. For the first three months it will simply record what time we open it to take pills, and we will need to keep a record of times when we take pills out "to go." After three months, we will either continue to use it that way, or be assigned to a group that can get reminders (either from the computer or by text message or phone) to take our meds.
As a ramp-up to this, the study coordinator questioned Babygirl about her medications. Two weeks ago they made major changes in doses and markedly decreased the number of pills she's taking, and I haven't drilled her on her meds since. She made a lot of mistakes about what and how much she takes, and they were only asking about three of them, so we need to work on that. I filled the sorter in the office today, but she'll be doing it with me from here out.
The visit with the doc was a bit crazed as well. One nurse practitioner was off, the other was sick and wearing a mask to see patients. The doc was also unexpectedly on her own and covering both the nephrology and the transplant clinic, training a resident as she went.
And as far as lab results are concerned, we only have one so far. Her creatinine is 1.1, up from 0.8 last week (normal for age 0.7 or less), so it's a bit scary. The rest was still pending, and they didn't call today with the results, so I sincerely hope they call tomorrow after their team meeting. They may need more blood work next week, but we will be able to do that here, or at worst, at the center 70 miles (instead of 192!) away.
The best part was scheduling our next appointment. We are officially, finally on biweekly visits! So we don't go back until June! Whoot!