In November my airways
looked so good during my bronchoscopy that we thought things were finally healing,
and that I’d be able to go longer than a month before needing another one. At
the time that was very exciting news, but unfortunately it was a bit overly optimistic.
A few weeks later I was already wheezing and my lung function started dropping.
I stubbornly tried to push through it, but finally gave in after drastically huffing
and puffing my way up a flight of stairs and watching my numbers continue
dropping rapidly at home on my hand-held spirometer. I didn’t expect to be able
to get in for a bronchoscopy until after the new year, so I was very surprised
when they had me on the schedule less than a week later on December 26th.
I guess not many people want to go in for procedures the day after Christmas!
They found a lot of
obstructed airways during the bronchoscopy, far worse than the one in November.
We don’t know why my airways were so good in November and then so bad a month
later, but I’m once again on a monthly bronchoscopy schedule to keep on top of
things. On the right side they once again found airways narrowed due to scar
tissue, but on the left side an airway was fully obstructed with “debris” such
as dried out mucus. Due to this I need to get back on track doing nebulizers at
least twice a day to help clear out secretions, after seriously slacking and hardly
nebbing at all during the last couple months. I’ve still been slacking, but I
have been consistently nebbing once a day, and am working on getting back up to
twice a day. My doctor also wants me to start a medication (Sirolimus) to help reduce
scar tissue, as he expected my airways to stop narrowing by now. I couldn’t
take Sirolimus before now as it impedes the healing process, which is pretty
much the opposite of what you want immediately after a major surgery. Sirolimus
is also an immunosuppressant, so we’ll have to keep an eye on my bloodwork and
adjust all my other anti-rejection meds accordingly. The whole thing is pretty disappointing,
and it kinda feels like I’ll be doing bronchoscopies every month for the rest
of my life, but hopefully my lungs will get their act together and chill out
already sometime soon.
I’ve been feeling kinda
blah the last few months. I became increasingly unhappy and demotivated while
dealing with months of debilitating joint pain, but even now that the pain is
gone I’m having difficulty getting my mojo back. I’m very tired a lot of the
time, which apparently is common post-transplant, but it’s hard to be social or
productive when all you want to do is sleep. It’s also a difficult time of year
for getting out and about, since right now a lot of activities involve indoor
crowds, which is really risky for me during cold and flu season. I keep
thinking of fun things to do, like going to the Convention Center portion of
the Mummer’s Parade, and then realizing I can’t. I’m also definitely still
adjusting emotionally to post-transplant life, and probably will be for a long
time. I randomly get overwhelmed by fear and anxiety when I think about what I
went through and all the risks and uncertainties that my future holds. A lot of
the time I just want to curl up on the couch and hide from everything. But I’m
trying to push back against that and figure out how to make a life that makes
me happy while also protecting my health.
I fully recognize how
extremely well my transplant is going and how very lucky I am. I’ve seen people
go through far worse, and am painfully aware of how bad things could be. At the
same time, no matter how smoothly things go, transplant is a difficult journey
on multiple levels. I’m navigating my way through both physical and emotional
challenges, and sometimes I get stuck. But I’ll keep pulling myself free and
moving forward, and putting the pieces together one by one, as I continue figuring
out my post-transplant life.
