First, the good news: it’s NOT
rejection!
I’ve been kinda quiet about my
health status the last couple weeks, because I didn’t want to say anything
until I knew what was going on. Now I know what’s going on: but first, we need
to go back to something that I think I might not have mentioned. Immediately
post-transplant my sputum culture showed some of the infections that I had
pre-transplant. My treatment team didn’t seem too concerned, however, since my new
lungs don’t produce the sticky CF mucus that would allow infections to settle
in and make big problems. With antibiotics those infections eventually
disappeared, and I had infection-free sputum cultures for the first time in
decades. That lasted for a few weeks, but 2 weeks ago the infections showed up
again. This isn’t surprising, as I still have my same old terrible CF sinuses,
which have the same infections and will probably keep re-infecting my lungs. Again,
my treatment team wasn’t concerned, and we just put me back on an inhaled
antibiotic to treat the infections.
A week later, not only was I still
slightly more congested, but I was also wheezing a little. Worse, my PFT (Pulmonary
Function Test) numbers had dropped, from 80% (!!!!) to 75%. We added an oral
antibiotic and continued monitoring. This week the wheezing was more pronounced
and I started having a dry, scratchy cough early in the morning. Today my PFTs had
dropped even more and were down to 69%. I was trying not to panic, as I was convinced
this meant that I was experiencing rejection. However, to quote my doctor, “rejection
doesn’t wheeze.” Apparently it also doesn’t cough, or choose sides, as my right
side sounded junky and wheezy while the left side was clear. My doctor said it’s
just scabs and scar tissue narrowing the airways on the right side, which they
had already seen during my last bronchoscopy. During my next bronchoscopy they’ll
go in and open things up again, which should solve the problem. Originally I
wasn’t supposed to have a bronchoscopy until the end of August, but they’re
going to move it up since I’m having issues. I hope it happens soon so I can
stop wheezing and rattling!
Despite the drop in numbers, I’ve
still been feeling pretty good! I’m still keeping active and my endurance hasn’t
dropped significantly. I think things were SO bad before transplant that even
dropping down to 69% still feels AMAZING! My biggest problem, aside from wheezing
and rattling being mildly uncomfortable, has actually been… my hips! During my
last couple weeks of pulmonary rehab I started having significant hip pain. We
think the rigors of rehab after being mostly bedridden for so long might have
been too much for my body. The pain level goes up and down day by day, but
there are some days where I’m almost hobbling from the pain. My lungs are ready
to go, but my body not so much! I’ll be starting physical therapy this week to
address that as well as back pain. My back has been a mess for years from all
the coughing, and being bedridden and going through major surgery didn’t do it
any favors. Hopefully I’ll actually be able to do something about it now that I
hardly cough anymore!
So that’s the story around here. Speedbumps
are expected during this process, and as speedbumps go it sounds like this isn’t
a bad one. Hopefully I’ll get those numbers back to 80% and beyond soon!
