The hits keep coming

Can I return 2022? Mine is already broken.
 
Last week we were waiting for the results from susceptibility testing, desperately hoping to find an antibiotic with a less grueling infusion schedule. Instead, we found out that the previous 2 and a half weeks of sheer exhaustion were a complete waste, because MY INFECTION IS RESISTANT TO THE ANTIBIOTIC WE WERE USING. Not gonna lie, that was pretty crushing news, both because Katherine and I went through so much for no benefit whatsoever, but also because the only antibiotics left have bad side effects. Specifically, I have 2 antibiotics to choose from: tobramycin, which has already given me permanent (thankfully mild) tinnitus, and amikacin, which has already given me (also thankfully mild) hearing loss. The last time I tried tobramycin the tinnitus started getting louder in less than a week, so I decided to gamble on amikacin being slower to cause damage. Plus, hearing aids are a thing if necessary, whereas there is nothing you can do for tinnitus. What a garbage choice to have to make!
 
I have not yet started the new antibiotic schedule, because first they want to drain the abscesses so the antibiotics can penetrate more quickly. But they DON’T want to do full surgery, because my anti-rejection meds impede healing, so surgery could actually end up spreading the currently-contained infection without having a good arsenal of antibiotics available to treat it. Right now we’re waiting for the abscesses to get a bit bigger so they can go in and drain them with a needle, and THEN we’ll get me back on IV antibiotics.
 
We’re also exploring an experimental treatment called bacteriophage therapy. Bacteriophages are viruses that don’t cause infection in humans, but do infect and destroy bacteria. The catch is that each bacteriophage only targets a specific bacteria, so you need to cultivate exactly the right phage to treat an infection. There has been a fair bit of research on using bacteriophages to treat multi-resistant pseudomonas infections specifically, which is good news for me. So my pseudomonas sample was shipped off to Yale, and they were very impressed with how extremely nasty it is. Apparently it takes 4-6 weeks to get phage therapy approved and set up, so it’s a waiting game to see if I still need it by then or if the drainage and antibiotics take care of everything. At least I can say that I’ve gone to Yale and they were very impressed with me!
 
And because when it rains, it pours, we have even more on our plate. Unfortunately, after struggling for months, Katherine’s mother was sent home on hospice over the weekend. Katherine has been driving over an hour every day to be there, and will likely be visiting multiple times a week until she passes. To complicate things further, there was a potential Covid exposure in the home, so my doctor has recommended that I not go and that Katherine and I maintain social distance and wear masks to keep me safe. Hopefully we’ll be able to ease up on some of those restrictions soon, but for now the situation has been very difficult.
 
I really don’t have any good news to share right now unfortunately. I hope everyone else’s new year is going better than mine!

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!