Sorry for the lack of updates — I really don’t like writing “So, X happened, but no one knows what it means,” or worse, “X happened, and people have ideas about it, but they haven’t shared them with us.” Thankfully, the latter isn’t a real problem for us.
So, despite not having anything definitive (or approaching definitive) since the last update, Machen has had his regular clinic visit and a CT test.
The clinic visit initially focused on his most recent blood tests — all of which were within normal/acceptable ranges. But seemed to be trending outside of those. This trending, coupled with his continual higher blood pressure (even after increasing his blood pressure medication), edema and whatever is/isn’t going on with the bruit left all the nephrologists involved with him scratching their heads. Edema? I haven’t mentioned that before — 1. well, yeah, it wasn’t that bad before, and no one seemed to be paying it much heed, figuring it’d resolve on its own, and 2. it hasn’t and it’s worse. Dr. Bender had some ideas about treating the edema and tweaking the meds some, but didn’t want to try anything until the CT scan gave some answers about stenosis or anything else.
The CT was a bit of an ordeal — the first IV they inserted to get the contrast dye in his blood blew before it could be used, and then they tried several times to get one inserted. In the end, it took 4 separate RNs 5 following tries — 3 of them using an ultrasound to find a vessel to insert the IV into — before they got it taken care of, all in all taking more than an hour. All for a test that took something like 3 minutes. An ordeal to be sure — it’s like he’s having his vessels tapped at least twice a week for the last couple of months or something.
But is was worth it — the CT shows no stenosis in the artery (I’m hoping to ask some questions about that at our clinic visit Thursday, I’m not 100% sure we’ve taken them off the table), but suggested something hinky with the vein, but nothing definitive. So that’s two tests pointing at that. We seem to be closing in on something. Not only that, his regular blood work on Friday was great — all the things that seemed to be trending in a bad way the last few visits, were off that trend and in a better place within that normal/acceptable range. In fact, she cut back one medication a little bit. Dr. Bender was very encouraged by both the CT and the blood work (especially by the blood work to my ears).
Still, questions remain — we can breathe a sigh of relief as we prepare for more tests. At the next clinic visit we’ll go over these blood tests in more depth, plus Tuesday’s draw; as well as looking at the CT Scan for ourselves (not that we’ll see anything the experts didn’t, it’ll still be cool to look at).
But first, on Monday he’s going in for an ultrasound focusing on the vein — and those results will govern the next steps we take — Dr. Bender has some theories, but until we get more data, I’m not going to try to explain them (because I’m only vaguely aware of some of them, and am in no position to evaluate). Hopefully, we’ll have something by Monday night to tell you. If not, I’ll try Thursday.