It’d be cool if I had something to update this with… Well, actually, I have tons of stuff I think I should write about but then there’s that whole getting around to it. For someone with a boatload of time, I never have any.
So anyway, when we last spoke I filled you all in on the vestibular PT lady saying she thought (urged, threatened) that pulmonary PT might best be the first issue tackled. Because the information she gathered during that last PT visit warranted a report, she contacted Dr. J. I mean, she emailed him via the hospital network — never really a great way to contact people, but he actually is pretty good at getting around to responding. The problem is a bit more complex than that, though. See, it’s most likely histiocytosis or the process that relates to it that is causing this shit, but we don’t know that. So is this his jurisdiction? (Since I did have thoracic surgery to remove a mass and I have lung nodules — which still might not be why the oxygen thing happens — he is a logical enough person to order the lung tests. I mean, there is a huge pulmonary component to any type of cancer or hematological disorder, and it is stuff they check on, so…)
At any rate, it comes down to Dr. J getting an email that asked about moving the PFT forward and about pulmonary physical therapy. You don’t ever ask doctors via voice mail or email more than one question, because only one question will get answered. His response (which took a bit — whether he was at a conference, busy, or didn’t recognize the name of the physical therapist, I don’t know) was that pulmonary therapy sounded like a fine idea.
It is just as well the PFTs were not moved up. I ended up getting a cold last week, which would totally skew results and would definitely make me a big jerkwad walking into Dana Farber that way.
I am not signed on for lung PT yet. I guess that my vestibular lady could write me a prescription based on her findings, but truthfully, the test is seriously two weeks away, and the pulmonary therapist said that it is hard to do much without some actual reasoning why at the moment. Low blood oxygen saturation is not really something that has a single cause and I highly doubt that my lungs are even half of the picture there. So I think I can wait. At this point, let’s just make an attempt to do this as close to right as possible if we’re going to, you know? I have lots of time, but not time for stabbing in the dark.
Anyhoo, that’s sucked and all I do is come here and gripe and seriously, c’mon. I don’t like that. No, for real! I don’t! I have felt pretty ick though, and then my face decided to do the good old blow up on one side/swell/droop thing. I have a picture, but I look pretty hellish in it (and oddly, not because of the swelling) so it’s more a reference thing. I mean, my sweet GP has seen it and asked if the doctor in the ER was friggin’ blind or something because he said he didn’t. It is pretty obvious, actually. If it didn’t happen quite so reliably at points (I’ve been drooling!) I’d probably worry less. I mean, things swell up and go down. They’re like… supposed to to a certain extent.
So anyway, still here. Wave.