Tuesday, January 25, 2022

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!

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