Complications

Yesterday was LONG.

I went down for the bronchoscopy around 2:45pm, but didn’t go into the OR until after 4pm. When I woke up around 6:30pm they said a room was finally available and being cleaned, so I waited in recovery instead of going back to the ER. By the time the room was ready, however, it was 7pm shift change, and nothing happens easily at shift change. I eventually got upstairs shortly before 8pm, but I STILL couldn’t eat because my meds hadn’t arrived from pharmacy yet, and I can’t eat anything without digestive enzymes and insulin. I FINALLY got my first (and only) meal of the day at 10:30pm. Whew!

Unfortunately there wasn’t a room available on my usual unit, Silver 11, so I ended up on Founders 14 instead. Silver lining: Founders 14 has the BEST views!

Today we got an explanation for how on earth I ended up with pneumonia after a month of IV antibiotics. Despite the fact that testing in June showed that my Pseudomonas infection was susceptible to Zosyn, the new testing showed that it was RESISTANT. I don’t know when that happened, but clearly the latest round of IV antibiotics was ineffective. So far they’ve identified 2 effective antibiotics: Tobramycin, and Amikacin. Those names might ring a bell… Tobramycin gave me tinnitus, and Amikacin caused some hearing loss. We’d REALLY rather not use those antibiotics if at all possible, so they’re doing more testing to see if we have any other options.

I also learned a new word today: Immunoglobulin G. Since I’ve been struggling with stubborn infections lately, they did bloodwork to check my antibody levels. They’re supposed to be low since I’m immunosuppressed, but turns out they’re even lower than expected. Apparently this isn’t unusual after transplant, and has a pretty easy treatment. We obviously don’t want to lower my immunosuppression, so instead I’ll just use someone else’s antibodies! Immunoglobulin G is an antibody that can be taken out of donated blood and infused into someone who needs it. Hopefully it’ll be the boost my body needs to fight off this super stubborn Pseudomonas infection!

Unfortunately, these complications mean I’m not getting out of here too quickly. It’ll take time to complete testing and determine a course of antibiotics, and then they need to get me stabilized on the right dose before sending me home. So I’m here through the weekend, and then we’ll have to see how things go next week.

On the plus side, I did have a reassuring conversation with my doctor today. I was a bit alarmed by this whole situation, as it was far too similar to last year’s unsuccessful battle with treatment resistant Pseudomonas which resulted in my lung transplant. My doctor reassured me, however, that this time it will NOT cause permanent lung damage. It’s almost impossible to eradicate Pseudomonas from CF lungs. You can reduce and control the infection, but it’s always there, causing permanent damage which builds up over time. These lungs, however, are different. Once we find an effective antibiotic, we’ll be able to successfully treat and eradicate the infection before it causes permanent damage. Hearing that was a HUGE relief!!

So for the first time in over a year I’m settling in for a stay at my home away from home here at HUP. And we all know what that means… Pole People, of course!