I’m tired.
Since getting home from the hospital at the end
of August, I’ve been very fatigued and kind of depressed. I wasn’t exactly full
of joy and energy before then, but things seemed to get markedly worse. After about
a month I realized that this coincided with starting Trikafta, so I reached out
to my doctor. Turns out these can be side effects of Trikafta, so we halved my dose.
I felt less depressed the following week, but have still been very fatigued. My
doctor said this could be due to the CMV flare up over the summer, and that unfortunately
it can take a while to recover.
Part of the problem is that it’s very difficult
to tease out which issues are medical symptoms, and which are related to mental
health. Transplant is a VERY intense experience, and depression and anxiety after
transplant are not uncommon. I still have lingering trauma from what I went
through before and during the transplant process. In addition, life after
transplant is fragile and uncertain, a reality that is very stressful to live
with. And as if that isn’t difficult enough, I also end up feeling guilty about
being depressed and anxious! I feel like I should be perpetually full of joy
and gratitude for this precious gift of life and relative health, and that I
have a responsibility to live my best life for my donor as well as for myself. So
I end up not only feeling depressed and anxious, but feeling bad about feeling
depressed and anxious. It’s super fun.
Now take all that, and throw a life threatening
and confining global pandemic on top of it. Just what I needed: another threat
to add to my already long list of fears! How am I supposed to distract myself
from those fears and live my best life when I can barely leave the house? I’m
dealing with the same stresses and fears and struggles as everyone else, ON TOP
of my already elevated baseline of stresses and fears and struggles. This makes
it REALLY hard to figure out the cause of various symptoms. Is the fatigue a
symptom of depression, or a medical issue? Have I been depressed because of
medication, or because of the world at large? What is going on???
Despite all this, overall I’ve still been doing
really well medically. I had a follow up appointment on Friday and once again
my lung function was an amazing 92%! My chest CT scan looked good and showed that
the pneumonia from August has cleared up completely. Tomorrow I have a
bronchoscopy, so we’ll see how my airways look and get a sputum sample to check
for infections. Here’s hoping Pseudomonas finally got the message and moved
out!
I’m just trying to put one foot in front of the
other and keep getting through this 2020 life. Hopefully it’ll get easier soon!
