We’re finally getting somewhere!
There was some confusion and communication mix-ups
trying to coordinate between 2 surgeons, but in the end I’m scheduled for
surgery with just my transplant surgeon tomorrow morning. He thinks that there’s
a suture from transplant in my chest that has been harboring infection and
allowing it to resurface, so he’s going to clean out the infected tissue and
try to find and remove the suture. The last time I had these abscesses they
also looked for a suture but couldn’t find it, so he plans to go deeper this
time. Though I’ll be getting general anesthesia, he expects it to be a quick
and easy surgery. And at least this time I’m only getting one side opened up,
unlike last time when they had to open up both sides. Hopefully recovery will
be a little easier this time.
One somewhat alarming thing is that on the MRI
they saw a little bit of something starting on the other side too. They didn’t
see enough to merit going in surgically, however. The current hope is that if
an infection has also begun on the other side, the antibiotics I’ll be receiving
will be enough to take care of it. The bad news is that susceptibility testing
shows that my current infection is a multi-resistant monster like I had last
time, so there aren’t many antibiotic options available. So far they have
identified one antibiotic, which I started taking tonight. But they really want
me on 2 antibiotics simultaneously, so they’re doing extended susceptibility
testing in the hopes of finding other options. Right now the only other option
available is Tobramycin, which I refuse to take. Tobramycin has already given
me permanent (but thankfully mild) tinnitus, and the last time I attempted to
take IV Tobramycin the ringing got louder within just a few days. It’s pretty
clear that if I did a full 2 week course of IV Tobramycin, the ringing would
become unbearable. Hopefully the extended testing will find at least one more
antibiotic that I can use without terrible side effects.
We do still have another trick up our sleeve
though. My transplant doctor has already been in touch with the bacteriophage (aka
phage) therapy program at Yale. This is an experimental treatment that is not
widely available in the United States. Fortunately for me, Yale has a phage
therapy program specifically for CF patients with pseudomonas. Bacteriophages
are a type of virus that attack bacteria without causing harm to humans. The
catch is that each bacteriophage will only attack a specific bacteria, so they
must be grown tailor made to the infection you’re trying to treat, which takes
months. The current plan is to treat my infection immediately with surgery and
antibiotics, submit a sample to Yale to develop phages for me, and then hit the
infection again with phage therapy in a few months to hopefully eradicate it
once and for all.
Right now my focus is on getting and recovering
from surgery, and the impending course of antibiotics. It looks like I’ll be in
the hospital through the weekend, and they’re tentatively talking about
discharging me next week. It’s not fun being stuck in the hospital, and I’m definitely
not looking forward to going through multiple rounds of treatment, but I’m
grateful that I at least have some options available. Hopefully surgery will go
smoothly and the recovery will be quick, and they’ll find one more great
antibiotic for me soon!
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