Laughter is the Best Chest PT: Progress!

A lot has happened over the last 2 days!

One thing I didn’t mention is that along with pseudomonas, they unexpectedly found a fungus in one of the surgical samples from my lungs. Due to this the transplant team ordered a CT scan to check for any signs of fungal infection. It wasn’t an urgent order, but for some reason they put me on the schedule for 11pm that night. I was surprised, but not super bothered, until I found myself struggling to stay awake at midnight with no sign of being taken down for a scan. I gave up and went to sleep… only to be woken at 1:30am and brought down to CT. Then when I got there, 4 people were ahead of me, so I didn’t end up getting back to my room until 2:30am. Yay hospital schedule!

I followed up that sleepless night with a painkiller snafu in the morning, and ended up really suffering for a few hours before finally getting what I needed. It then took several hours to get the pain fully back under control, and I was incredibly drained by the whole experience. Overall I wasn’t living my best life on Wednesday.

The labwork on the fungus had the transplant team a bit perplexed. They were able to see that it was a mold growth, but couldn’t identify exactly which species. The CT scan was also unclear, as there were some findings (ground glass opacities and a 6mm nodule for my medically minded friends) that could indicate a fungal infection, but could also be caused by multiple far less serious things. They started me on an anti-fungal right away just in case, but they also need more information. The bronchoscopy that was done during surgery only focused on and took samples from my left lung, since that was the trouble spot at the time, so now I need another bronchoscopy to see what’s going on in the right lung. Never a dull moment around here!

In more positive news, they finally removed the second large drain tube today! That was a BIG relief and I’m definitely more comfortable without it, as well as much more mobile now that I don’t need to lug a drainage collection box around everywhere I go. I’ve also gotten stronger and steadier on my feet in general over the last couple days, and now that I don’t need a place to hang the drain box, I was finally able to ditch the walker! I’m still very deconditioned and my heart rate jumps with the slightest exertion, but being more mobile and independent is a big relief. The one drain left is a much smaller tube and bulb called a JP drain, and my surgeon thinks we might be able to pull that one soon too and I’ll be fully drain free. If necessary I can go home with that drain still in me though.

Once the last big tube was removed, I was very happy to finally ditch my hospital gown and put on some comfy pajamas. For the most part I absolutely refuse to wear hospital gowns outside of procedures, so if you see me in one for more than a few hours you know it’s not a good situation. In this case the tubes were too difficult to manage in regular clothing, so I was stuck wearing hospital gowns for over a week. It was so nice to put on a pair of pajamas and start feeling more like a human being!

The plan for tomorrow is to get the bronch done. We don’t have a scheduled time because I’m an add on, so they’re pretty much squeezing me in whenever they can. I can’t have anything to eat or drink after midnight, but that shouldn’t be an issue because honestly my appetite has been almost non-existent since surgery anyway. The other big thing keeping me in the hospital right now is that we still haven’t gotten insurance approval for my current antifungal medicine. If they deny it, I’ll have to stay here until we can find one that they will approve to send me home on. And once they’re finally ready to discharge me, we need to make sure my home infusion company can get my antibiotic delivered the same day so there won’t be any gap in my treatment. Considering Shabbos starts shortly after 5pm, I am extremely doubtful that they’ll manage to pull everything together to get me discharged before then. But it DOES sound like hopefully, G-d willing, I should get to go home sometime this weekend. Here’s hoping!!