It’s been a long haul, but I’m finally, slowly,
getting somewhere.
Katherine and I are utterly exhausted. We haven’t
had a decent night’s sleep in weeks, and it is seriously wearing us down. Then
of course we’ve had to deal with RSV symptoms on top of that. Katherine says it’s
the worst cold she’s ever had. My congestion got pretty rough last week, but
thankfully I finally turned the corner over the weekend and seem to be on the
mend. We’re very grateful that my symptoms didn’t get out of hand and that I
was able to stay out of the hospital. But now there’s the anxious waiting
period that comes with any infection, in which we monitor me closely afterwards
for any signs of rejection. So far in the last year I’ve managed to make it
through 2 viruses without triggering rejection, so here’s hoping virus #3 is
the same!
Last week I saw the plastic surgeon, who is the
doctor in charge of my wound. He said it was healing well, and that it was up
to me if I wanted to keep the wound vac or switch to a regular dressing. Well once
he gave me the option, you know I jumped at the chance to get rid of the wound
vac! Let me tell you, getting rid of that thing was SUCH a relief! I’ve had so
much less pain and been so much more comfortable without it. The trade off is
that the dressing needs to be changed every day, but the visiting nurses don’t
come out that often. And because of the location I can’t see or access the
wound to dress it myself. So it’s a good thing that Katherine has become less
medically squeamish over the years, because she is now in charge of dressing
changes! She has done a great job stepping up to the challenge despite some involuntary
horrified facial expressions.
I also saw the Infectious Disease doctor last
week, who is in charge of my IV antibiotics. She actually was ready to stop the
antibiotics last week, but needed to consult with all the other teams who are
currently following my case. So that meant coordinating with lung transplant
AND the plastic surgeon AND my transplant surgeon who did the surgery. She
finally got back to me today, and said I can finish up tomorrow’s doses and
then be DONE! Katherine and I are both looking forward to FINALLY being able to
get a full night’s sleep without waking up to run an infusion! I won’t be rid
of my PICC line quite yet though, as the Infectious Disease doctor wants to
wait a week after stopping antibiotics to see how I do before removing it. But
I’ll gladly put up with the discomfort of a PICC line as long as I can get some
sleep!
I still have a ways to go with my wound. The
plastic surgeon said that normally he’d expect a wound of this size to take 4-6
weeks to heal, but since I’m immunosuppressed it will likely take longer. I
have a follow up appointment in a few weeks to assess the progress. If he feels
it’s healing too slowly he will stitch it up, but otherwise we will continue to
let it heal on its own. Thankfully the wound really hasn’t been painful since
the wound vac came off. In fact the most uncomfortable part is the tape from
the dressing. My skin is really sensitive to adhesives, and having dressings
taped to my side for the last few weeks hasn’t been doing it any favors. I’m definitely
not excited about continuing to torture my skin over the next however many
weeks while this heals. We’ve been experimenting with different tapes and
bandages, so hopefully we can find something that my skin can tolerate.
I feel like I’ve really been through the wringer
over the last month, and I still have a ways to go. But thankfully I am finally
starting to see the light at the end of this tunnel!
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