two trips to clinic make a post

I totally failed to blog about Thomas’ visit with his anesthesiology team on Thursday morning. I’ve had severe blogging ennui or something–for going on two years now; I’m trying to break out of that and blog more. I promise! Really!

Thursday morning, we had to be at Kentucky Clinic Nephrology to have the anesthesiology discussion. You know, the one where they tell you what general anesthesia is and what all the risks are and have you sign a mountain of release and consent forms. Thomas was in a good mood, and he and I laughed a lot. They did an ECG, which came out perfect – not one flaw – but I did tell the tech who did it that his heart has some minor scarring because his blood pressure has been so high; they’d found that in 2009 in September the last time we’d gone up to UC for his all day annual check-up. And of course brainiac here couldn’t remember where the scarring actually is, but the tech called and got a copy of his records from Cincinnati Children’s. He was poked and prodded, and we filled out a ton of forms.

When we were done, I told Thomas I’d see him Monday (yesterday) at the transplant clinic. I didn’t walk out with them; I intended to go to the coffee shop on the second floor for a cup of coffee. But when I got over there, I realized it was almost lunch (and I won’t go into that kind of crush on purpose) and also almost time for my bus to come, so I went walking back through the clinic. I got to the first floor lobby about the time Thomas and David got off the elevator. Thomas and I laughed. Because it was kinda funny. I had to wave and run, though, so I wouldn’t miss the bus and have to stand out there for half an hour.

Monday wasn’t as big an adventure as Thursday, but in ways a funnier time was had as well as a sadder one. (Did you get all that? I’ll stop so you can go back and read that sentence again. You back? Okay.)

Thomas isn’t anywhere near as dehydrated as he had been. The phlebotomist had no trouble drawing blood. Thomas went in there and pretty much came straight back out. So this is good. He weighed 155.8#, so he’s gained almost three pounds. His blood pressure is high, as usual. 144/86. His creatinine had dropped a couple of tenths down to 5.5. This means it’s stabilized (for now). Dr Waid made sure we understood that it may not stay that low and that it may never go down any further, which at least Thomas and I knew whether David and Jane didn’t. He said since the creatinine level has stabilized, Thomas won’t have to go on dialysis straight away like we were afraid he’d have to do. He can wait–unless it decides to shoot back up again.

His next appointment at the transplant clinic is just before noon on December first–so we get to wait ten days between appointments this time instead of one week. But we have to go back to the hospital next Tuesday morning (the 29th) for the fistula surgery. We won’t know what time that appointment is until Monday; they’re supposed to call and let Thomas know–so, we’re all hoping he’ll answer his phone like he’s supposed to! (because if he screws this up…)

So Thomas is still having issues with his medications. After we left the clinic, Kathy called me yesterday after I got home and said Thomas still isn’t showing any Rapamune or Cellcept in any of his lab work. This is because that handful of prescriptions Thomas left the clinic with last Monday? (He’d asked Dr Waid for all new prescriptions for everything so he could start totally over and have exactly everything he needs) Those prescriptions haven’t been filled yet. David said he would stop by the pharmacy and pick up everything on the way home that afternoon. I have no idea if this has happened yet or not. Also, Thomas was bitching that David isn’t keeping food in the house again. David said food isn’t an issue. Thomas just won’t buy when they ask, and he won’t ask them to take him out to shop when he wants/needs to go. (Thomas did that with me and Kathy both, too, so we know how that goes. But David has a long history of not keeping food in the house as well as not getting Thomas’ prescriptions filled (whether they’ve been paid for already by someone else (or Medicaid/Medicare) or not), so none of this is new stuff.)

Since the Rapamune and Cellcept aren’t showing up in his labs, then his creatinine is going to shoot back up unless and until he gets his medications so he can take them. The suck ass part of this is that Thomas is really trying to show an effort here and do what he needs to do–and the people around him are fucking around and making him helping himself impossible. Also, David has it in his head that Thomas needs to move all of his nephrology appointments to Danville, which in my opinion is a really bad idea.

When Dr Waid asked if we had any questions, Thomas and I were fine. Everything was clear. This medical team is thorough and explains everything very well. But Jane wanted to know if Thomas needs to get a standing order for lab work (at the hospital in Danville) in between appointments like we used to do when he was still going to UC. Dr Waid whipped around (he’d sat with his back to her and had talked to me and Thomas) and wanted to know why, as anemic as Thomas is and as healthy as we’re trying to keep his veins, such a thing would be necessary. I didn’t say anything, but I wanted to. When we were going to Cincinnati, we went every three to four months. Getting blood drawn once a month at a hospital or clinic closer to home was a necessity. Since he’s been with UK, we’re coming here once a week, give or take. Jane said, “He’s anemic? Why is he anemic? When did this happen?” I thought Dr Waid was going to burst a vein. He made a face, whipped back around, and said, “He’s rejecting a kidney!” I had to make myself not laugh. He turned back to me and said, “You’re keeping good notes, right?” I said, “Somebody’s gotta keep all this shit straight.”

ETA because I hit publish entirely too quickly, and I apologize about that!:

Jane also wanted to know when Thomas had gone off his medications. I said, “December. I’ve told you this and so has Kathy several times now.” But before she could raise much of a fuss, the doctor came into the exam room.

Too, the entire time we were there, waiting room forward, Jane bitched that the appointment was taking too long. While we were still in the waiting room, at one point, Thomas said, “It’s not time for my appointment yet, Grandma. They draw my blood, then my appointment is an hour later. They have to wait for the labs to come back.” Jane said, “Do what?” Thomas and I rolled our eyes at each other. She did the same thing while we were in the exam room. Thomas and I both told her we’d had this same conversation while he was in the hospital the last time. He’s an adult now and being taken care of in an adult hospital, and things take longer in an adult hospital. Things in an adult hospital aren’t as urgent and immediate as they are in a children’s hospital. Things take time.