It’s official: Pseudomonas REALLY loves me.
A few weeks ago, we got the results back from
the sample they took during my bronch. Unfortunately, even after all that
treatment in August, they STILL found Pseudomonas in my lungs. It’s unclear whether
we never fully eradicated it or if my sinuses just reinfected my lungs that
quickly, but either way it was very upsetting. I literally screamed with
frustration after hanging up the phone. Damn you Pseudomonas!!
The new plan is to put me back on a nebulized
antibiotic, specifically Tobramycin. Tobramycin is the one that gave me
tinnitus, but taking it via nebulizer is far less risky than IVs. I haven’t done
Tobra nebs in years because over time my airways became increasingly reactive,
and I started having significant asthmatic symptoms every time I took it. Hopefully
my new lungs will tolerate it better, especially since my clinic’s protocol is
to only give post-transplant patients a half dose. I’m also taking an albuterol
nebulizer beforehand to help open my airways and counteract any negative
reactions. The downside of this is that it’s been so long since I took albuterol
that I’ve completely lost my tolerance for it. For years I did albuterol nebs
at least twice a day, so they didn’t really affect me. Yesterday I took my first albuterol neb in
months, and boy did it mess with me. My heart was racing, my hands were
shaking, and for hours afterwards I felt shaky and worn out and had a headache.
I really hope my body gets reacclimated to albuterol soon!
I was pretty freaked out when I got the bronch
results, but I’m feeling calmer after hearing from some other post-transplant
CFers who have dealt with Pseudomonas without it impacting their lung function.
My team also wasn’t alarmed and reassured me that this is not uncommon, and
that I will likely just keep going on and off Tobra nebs as needed. I’m not
excited about getting back into a twice a day neb routine after having a nice
little break for the last year or so, but that’s definitely easier than IV
antibiotics. I also feel a little spoiled complaining about a few nebs after spending
most of my life doing multiple nebulizers 2-4 times a day on top of airway
clearance. My current nebulizer routine is still SO much lighter than it was
pre-transplant!
Unfortunately, I’ve still been struggling with
fatigue and low mood. We decided a couple weeks ago to discontinue the Trikafta
entirely, since it’s unclear how much benefit I’m getting and it could be worsening
those symptoms. I do think my mood has improved a bit, though I’m not sure
about the fatigue. We recently discussed the fact that my iron levels have been
a bit low, which could be contributing to my fatigue. Unfortunately, oral iron
supplements can slow down the gut, which is already a problem for me due to CF
digestive issues and gastroparesis (aka delayed gastric emptying). Due to this,
I’ll have to go in for iron infusions once a week for 3 weeks. During that time
I’m also scheduled to get an infusion of Reclast to improve my bone density,
which has been damaged by years of steroid use. Apparently infusions are the
theme for December! I’m a little worried about how my terrible veins will handle
all these IVs and infusions, since I no longer have a port and I doubt they’ll
give me a PICC line for just 4 infusions. Hopefully it won’t be too bad, and
HOPEFULLY treating the anemia will be the fix I need to get my energy back!
I’m super not excited about heading into cold
and flu plus Covid-Part-2 season. I guess it won’t really make much difference
since I’m already isolating and being super careful, but it’s never fun knowing
there are even more germs floating around trying to kill me. It’s also even
less fun hunkering down and trying not to die when it’s all cold and dark and
depressing outside. I remember how exhausting cold and flu season was last
year, and how much I was looking forward to spring, only to get slammed with
Covid instead. This year is worse since I’ve already been on varying degrees of
lockdown for a full year now. Hopefully all the promising news about the Covid vaccine
will come to fruition, and maybe I’ll FINALLY get released sometime this coming
spring or summer!
That’s the latest in my life of medical
shenanigans. Hopefully I’ll have a more uplifting update sometime soon!
