I haven’t written anything over the last couple
weeks, because unfortunately there wasn’t anything to write about. The decision
to move forward with surgery was made literally the last day before my surgeon
went on vacation for 2 weeks. I pretty much spent the last 2 weeks twiddling my
thumbs waiting for him to come back so we can finally DO SOMETHING. I already
know from unfortunate experience that this is the ABSOLUTE WORST time of year
to have any sort of medical issue, but this seems a bit excessive. I’m strongly
considering just skipping December entirely going forward. This is NOT my time
of year.
Of course, while waiting I’ve still been on IV
antibiotics, because at the very least they’re preventing things from getting
worse. But we’ve also been on pins and needles, because I have a habit of not
waiting for outpatient appointments and ending up in the ER instead. We thought
the time had come Friday night when I suddenly coughed up a blood clot. Pre-transplant
I coughed up far greater amounts of blood on a fairly regular basis, and one
little clot would have been nothing, but aside from when I’m recovering from
bronchoscopies I haven’t coughed up blood a single time since transplant. I had
no clue how significant one random clot was, and our stress level was not
helped by the fact that for some reason it took over an hour and a half to get
the after-hours transplant doctor on the phone. Thankfully, she said that as
long as I didn’t cough up anything more significant, I did NOT have to go to
the ER and we could just continue to monitor the situation. Whew!
Which brings us to yesterday, and my long-awaited
consult with the thoracic surgeon.
Surgery is officially a go. It’s currently
scheduled for the 29th, with a slim chance of possibly getting me onto the
schedule next week. Finally getting this show on the road is definitely good
news. The surgeon is also confident that during the procedure he will be able
to find and remove the suture that we assume is in there harboring these
infections, so that’s more good news.
The not good news is that the surgery sounds
intense. He’s expecting a 3-4" incision, and they have to pull my ribs
apart to get into my chest cavity. I will likely be hospitalized for at least
2-5 days afterwards and will have large chest tubes draining fluid from my
chest just like I did after transplant. Once those are gone I will probably go
home with a smaller device called a JP drain that will continue draining the
fluids for the next few weeks. On the plus side, he does NOT think I’ll need a
wound vac this time. Risks include potentially spilling the currently contained
infection into my chest cavity, and possibly causing injury to my lung if the
abscess is really stuck to it.
The even more upsetting news is that he expects
me to be on IV antibiotics for 6 more weeks after surgery, on top of the weeks
I've already done. I just finished 7 weeks and am moving into week number 8,
and it might be 3 more weeks until I even get to the surgery. I am SO OVER these
IV antibiotics!
And the potentially worst news is that if they
find any infection in my bones, they may have to remove a small piece of my
rib. The piece in question is right next to my scapula (aka shoulder blade),
and apparently if you leave a gap there the scapula can kind of fall into it.
Normally they put some sort of mesh in to prevent that from happening, but in
my case they can't do that because I have a nasty infection in there, and
infections love to attach themselves to things like that. We’re pretty sure a
leftover transplant suture that didn’t dissolve is the source of my current
infection, and the last thing we want to do is give it a new home. So if they
remove bone I may have my scapula randomly falling into the gap for the rest of
my life. Supposedly you can fix it easily by changing position, but it sounds
like it hurts. So that's not great. Buuut they may not find any bone infection,
in which case they can leave my ribs alone. Here's hoping!
So it’s still NOT cancer, and it’s NOT a double
lung transplant, but it is A LOT to deal with on top of everything I’ve already
been dealing with. Katherine and I are utterly exhausted, and I’m REALLY not
looking forward to yet another painful surgery and lengthy recovery. But I’m
also relieved to finally be moving forward towards a solution. And hopefully, someday,
eventually I will FINALLY see the end of the current long round of medical
drama!
