Holding steady

Well it was definitely a FRA-lichen Chanukah (thank you Shira Rubin for the wonderful wordplay)!

It is sooo good to be home! I’m still not getting excessive amounts of sleep due to coughing and needing to run an IV every 8 hours, but I am far more rested than I was in the hospital. And of course the food situation is greatly improved! Week #2 of the Fancy Restricted Antibiotic, however, hasn’t been quite as dramatic as I would’ve liked, and medically I’m basically at the same place as I was when they discharged me. I’m still dealing with a fair amount of congestion and tightness. My oxygen levels mostly hold steady when I’m sitting still, but slide with the slightest exertion. Unfortunately for me, they only slide to juuuust over the cutoff point for supplemental oxygen. Which means it’s difficult for me to manage basic daily living tasks, but I also don’t qualify for the in-home supplemental oxygen that would make things easier. It’s a bit of a catch-22: I know I’m deconditioned and need to exercise, but I don’t have the supplemental oxygen that would make exercise easier. I do have a possible lead on that issue though, and it may be resolved within the next couple days… Stay tuned for further developments!

Another catch-22 is that for the last week I’ve been having sporadic episodes of coughing up small amounts of blood. The usual response to that is to hold some of my more irritating treatments to allow the wound to heal – but those treatments are also clearing the congestion out of my chest. Clearing congestion helps reduce infection, which helps reduce the risk of bleeding. So we’re walking a delicate balance between not provoking a bigger bleed – because G-d knows I don’t need any more drama in my life! – and not undoing the progress we’ve made in clearing things out. Oh, and all my bleeds in the last week have followed more significant exertion, since an elevated heart rate puts more pressure on the blood vessels and makes it more likely that any weak spots could give way. Apparently I need to just be very chill for the next however long until things finish healing… which doesn’t exactly help with the whole trying to exercise and not become even more deconditioned thing.

Of course I can’t just be boring and straightforward about things, everything has to be complicated. I’m so high maintenance.

My follow-up appointment is on Wednesday, and I fully expect at least another week of treatment, possibly with yet another antibiotic. My lungs are being so very stubborn this time around (which I guess shouldn’t be a surprise, they are MY lungs after all)! I’m super curious to see what my pulmonary function testing looks like. I know I’ve improved from that dismal 45% a month ago, but I also know I’m not back to my usual 60%. The question is how much progress have I managed, and how much more might I be able to accomplish.

So, not exactly the glowing update I would have liked to share, but also not terrible. Holding steady is definitely better than going down! And being home is definitely, DEFINITELY better than being in the hospital!!