I just realized it’s been almost 3 months since
I wrote a health update. I’ve *thought* about writing, and really felt like I
*should* post something, but I just haven’t been able to muster up the mental energy
to actually do it. Don’t let the social media break fool you into thinking that
my life is quiet, however. It’s almost always a safe bet that I have some sort
of stress and drama going on.
I once came across a little picture book called
All My Friends Are Dead, which was a good fit for my often dark and morbid
sense of humor. I’ve been thinking of that book a lot lately, because my life
is starting to feel that way. This year has been pretty brutal for the CF server
on Discord. In May we lost Jacob, less than 4 months after his double lung
transplant, at just 25 years old. And then, a couple weeks ago, we lost Eve. Eve
got her transplant in 2019 at only 13 years old. She struggled with rejection
pretty quickly, and was waiting for a second transplant, but sadly she couldn’t
hold on any longer. She was just 15 years old.
In the midst of all this death and tragedy, I
also had my own health struggles. In June I started running a low grade fever, culminating
in a sudden spike to 102.4. You don’t play around with any sign of infection when
you’re immunosuppressed, particularly fevers, so a fever that high sent me straight
to the ER. I followed almost exactly the same fever pattern last summer, and
sure enough I once again had a pseudomonas infection brewing in my lungs. You
might remember from last year that my pseudomonas has basically been
supercharged from decades of antibiotics and is now resistant to almost everything.
There’s now only 1 IV antibiotic that we can use without putting my hearing
and/or kidneys at risk. Fortunately, that antibiotic can now be administered at
home, so I only had to spend a few days in the hospital instead of the full 2
weeks. Unfortunately, I had to give myself a 3-hour infusion every 8 hours, which
was divided into 2 separate 1.5 hour doses, so I didn’t get much in the way of
sleep that whole time.
It’s very frustrating to keep battling these
infections, especially since I know where they’re coming from yet can’t do much
about it. I already had surgery last summer to try to clear out my sinuses and
reduce the infections, but it doesn’t seem to be helping. I’m now back on a
nebulized antibiotic every other month to try to keep things under control, and
probably will be for life, since I ended up in the hospital when I tried
stopping for a few months. My current medical routine is still WAY better than
my pre-transplant life, but I can’t help wishing things would be just a little
easier. Of course, then I feel bad about complaining, since I know many people
struggle so much more than I do. Survivor’s guilt sucks.
And then of course there’s Covid. While it
seems that the rest of the world is making their way back to business as usual,
I remain mostly locked down. I remain at high risk for severe, life-threatening
illness, as unfortunately my anti-rejection meds prevented me from producing
Covid antibodies. This wasn’t surprising, but was still disappointing. My doctor
does believe, however, that the vaccine produces other immune responses that
don’t show up on testing, as vaccinated transplant recipients aren’t getting quite
as severely ill if they catch Covid. There’s also evidence that some immunosuppressed
people who didn’t respond to the first 2 shots DO respond to a 3rd
dose, so I got my 3rd shot just over a week ago. Here’s hoping!!
Overall I’ve had a lot weighing me down over
the last few months. I wasn’t exactly a paragon of emotional stability before
that either, so I really didn’t need more stress and sadness in my life. With
Covid continuing to hang over my head, and the annual danger of cold and flu
season coming up, things aren’t feeling particularly hopefully right now. I am
physically and mentally exhausted.
I don’t look at Facebook very much these days,
so please don’t be offended if you share something important and I don’t react.
Chances are I didn’t see it. I’ve also been even more terrible than usual at
responding to texts and phone calls, as I tend to crawl into an antisocial cave
when I’m stressed and unhappy, so please don’t take it personally. I really appreciate
the efforts of those of you who continue reaching out to me despite this! Thank
you for putting up with me!
