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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