7:00a – Wake up early. We drove to Pitt last night because while her appointment isn’t until 12:45p, they have some type of lab they want from her that has to be done early.
Also we have to talk to a Family House manager about getting a parking pass.
And the other advantage to waking up early is that at Family House if you want a hot or even warmish shower you have to be in there pre- about 8ish. They keep energy costs pretty low at these places and part of that is keeping only a few gallons of hot water on premises.
8:30a – Arrive at hospital. UMPC is one of the few places in which I fully understand the phrase foot traffic. People come and go with all manner of comport and dress. There are banks of elevators. Banks. And still we have to wait. It’s that kind of busy.
The diagnostic lab is pleasantly unpopulated this morning. There’s something primordially frightening about lab waiting rooms and this morning I discover it’s the people. All these people are here because something either is or may be wrong. It must weave some type of psychic tapestry that is blessedly absent this morning.
At any rate, we’ve brought all the right paperwork so we are not victims of hemorroidal-librarian glares. Which is a plus.
We move on to the phlebotomy lab. I comment that I love the word phlebotomy. Ashley is nervous about today’s blood test. The results will determine whether they simply take her off one anti-rejection med or try to replace that med with another. The first option is the favorable one here. I tell her to just get on there and do her best. It’s a joke, but not a terribly funny one.
9:03a – We cross the bridge, starting on the eighth floor and ending on the third. Veritgo-feeling none the more manageable for knowing it would happen.
9:10a – Breakfast at the cafeteria is not as glorious as lunch, in my humble o. Though I imagine we’ll be back because Ashley loves the rice krispie treats they make and we usually take home two or three.
10:00a – Ashley was up late last night reading, which itself is weird since I’m the reader of the couple. But so anyway she’s tired and we’ve retired to the hospital solarium/atrium/garden type place for a bit of a nap (her) and repast (me). This type of event is one reason I bought a Kindle. I’ve carried it with me all day unobtrusively in my back pocket and now with two hours to kill I have loads of reading choices. That’s worth the cost right there.
(A note re: formatting – Today’s post has been done and updated on the WordPress for Android app. I’ve not used this app in this capacity before and while I find it robust I have no way of adjusting the included images or really of making my usual footnotes that I know will show up legibly. So today’s post may not look as pretty. Though of course you may think none of my posts look pretty and you likely hate or don’t read the footnotes. All of which is fine. The point is that today I’m sacrificing aesthetic choices for the ability to post in-the-moment. Consider it my version of Anderson Cooper’s tears.)
12:15p – The walk to Ashley’s doctor’s office’s building involves going upstairs to eighth to cross the bridge which puts us disorientingly on third and then an elevator to what purports to be the ground floor but then we descend a bit to take what I always think of as a tunnel but then 3/4 of the through we come across windows that clearly show us a few stories high and finally we’re deposited on the third floor of another building with again little change in personal altitude. This Theseus-ness of the whole thing is inescapable. Nor is my notion that Pittsburgh was built on earthen undulations that froze mid-sine. Next up: PFTs.
12:56p – PFTS: FVC: 3.59, 91%. FEV1: 3.23, 102%. FEF25-75%: 5.20, 144%. PEF: 10.03, 151%. All very good!
1:05p – In which while attempting to take video of Ashley’s doctor’s office’s toilet’s teratoid roar I nearly drop my phone into its open, high-gallon-per-flush maw but instead drop it on the floor at which it instantly goes dark and I think I’ve broken my phone while embarrassingly filming, yes, a flushing toilet, but it turns out not to be broken yet nevertheless the video is gone and of course I’m too embarrassed to go back in there to get the video even though I’m sure Christiane Amanpour would if she were the type of journalist who videos flushing toilets. So you’re just going to have to imagine the monstrous thing for yourself.
1:15p – The actual appointment. The star attraction, as it were. We meet with one of Ashley’s doctors for a while who asks the same basic questions that pretty much any doctor would ask anyone. It gives you a clear idea that initial assessment – any coughing? any fevers? any emotional troubles? – is the same for everyone, that there are lowest-common-denominator-type symptoms that affect and signify for everyone.
After that, though, it gets a little surreal. I don’t say a whole bunch ever, but I feel like Ashley talks way more than necessary at these appointments. Or at least more than I would talk to my doctors. Then again, though, we have very different objectives in visiting very different types of doctors. And aside from that I’ve seen it more than once that an off-hand comment by Ashley will result in a raised doctoral eyebrow and follow-up questions will ensue.
I told Ashley before the appointment that I was going to rat her out w/r/t not doing her inhaled antibiotic, TOBI. And when the doctor brought it up, rat her out I did. I feel bad about it because I totally understand why she doesn’t do it yet at the same time I’m pretty sure a doctor wouldn’t ask a patient to do TOBI if the patient didn’t need it. So but anyway the doctor took on something of a matronly tone and said a totally matronly thing: ‘What are we going to do with you?’ And then looked at me: ‘What are we going to do with her?’ I told the doc that so far I hadn’t been able to find the proper motivation for Ashley on the TOBI thing.
Eventually someone brought up a new type of nebulizer, the eFlow, which from what I’ve read pretty much rules, comparatively. I’ve mentioned it to Ash in the past but she didn’t think Medicare would cover it for her. Her doctor told us that they probably would. So Ash said she’ll look into it next week. Hopefully it helps because TOBI is really the only thing she and I consistently fight over.
Things get really surreal when the doc checks up on Ashley’s meds. This always seems to take roughly the same amount of time as an average James Cameron film. There’s always something new that one of Ashley’s cadre of docs has put her on without informing Pittsburgh. Then opinion abound as to whether she should really be on that. It is head-spinningly complex.
Finally Ashley’s transplant doc comes in for a quick visit. He’s a pleasant but literally egg-headed man, clearly intelligent and devoted to helping pulmonarily afflicted people feel better. And he always picks out the one thing that no one has yet talked about that’s been in the back of my mind all along. Viz., today he brought up that Ashley’s PFTs are still really grand but have been trending downward over the last year. This is exactly what I thought when I saw the results. He said it’s nothing to get terribly concerned about but he wants her to do PFTs at her local clinic more frequently. I’m all for this because PFTs are about the best way to know if things are moving with a southward list.
But otherwise everything is grand. My job over the next few months is to help her get more exercise, no small task for a 300+ lbs. man. But more exercise will mean better PFTs, and right now that’s what’s worrying her primary doc.
2:30p – We’re done for the day. We stop at the UPMC cafeteria for the prenominate yummy rice krispie treats and then head back to Family House. Debate ensues re: do we stay the night or head home now. Since we couldn’t check out of the House before noon, Ashley feels bad about the American taxpayers paying for an unused room if we go home. So we’ll stay in Pittsburgh tonight and head out in the morning.
And there you go. Except for the ill-advised toilet-flush-video thing, this is pretty much what we go through every four months. It can be a bit nerve-wracking sometimes, and other times everything goes so smoothly it’s almost like a little vacation. You just never know.