Exhaustion

I’m utterly exhausted.

As expected, this infusion schedule is brutal. The first few days were particularly fun because I was teaching Katherine how to do them, which meant both of us weren’t sleeping more than 3 consecutive hours at a time. Once she got the hang of it we sort of settled into shifts, but that still involves a very disrupted sleep schedule. We’ve both been kinda zombie-ing around for the last few weeks and revolving our lives around my infusions.

To add to the excitement, my PICC line was defective. I requested a double lumen PICC line, which means it has two hubs that can be used to simultaneously infuse different medications. I just knew if I had only one lumen they’d find another infection that needed a different antibiotic and would need to replace the line. Well joke’s on me, because from the day they put it in one lumen leaked and couldn’t be used, so just a few days after being discharged I got to go back to HUP to have my PICC line replaced. Fortunately PICC replacements are pretty easy, but it was still super annoying.

I also had 2 follow up appointments last week, one with Infectious Disease, and one with the transplant team. Of course all these appointments and procedures interrupted hours that I could have been sleeping, or messed up my infusion schedule, or both. And to top it all off, the CT scan I got on Friday showed that not only have my lumps not improved, they’re actually bigger. Fortunately my doctor didn’t seem concerned about this and reiterated that abscesses take a long time to respond to treatment. Which isn’t what I wanted to hear, but at least it wasn’t worse news.

The million dollar question is, how did I end up with pseudomonas in my chest wall?? Apparently CF lungs are usually really degraded and hard to remove, and during the transplant process infections can escape from the lungs into the chest cavity. The catch is that we would have expected any infection to cause problems well before now since I’m immunosuppressed. But my Infectious Disease doctor said she’s seen infections become active years after transplant, and my transplant doctor says that she’s the smartest person he knows, so I’ll take her word for it. It just confirms for me that pseudomonas is absolutely my lifelong nemesis. I guess every superhero needs one.

The hope now is that susceptibility testing will find another antibiotic with an easier schedule that can be used instead. Apparently the testing got held up by a paperwork snafu, but my doctor harassed them into submission and is expecting results any day now. I’m honestly not hopeful, as decades of IV antibiotics have basically supercharged my pseudomonas into a multi-resistant monster, but for some reason my doctor thinks we may end up with another option. It’s funny, every medical professional I talk to agrees that my infusion schedule is absurd and unsustainable, yet thus far no one has been able to do anything about it. Here’s hoping that changes soon!