Day 13 at pulmonary rehab.
The nice weather seems to have made
people more voluble, even those who are normally silent and withdrawn.
One girl I talked with - whom I've seen almost every visit, but haven't
previously had a chance to chat with or who put off vibes that caused
me to defer - has quite a long history at rehab, having been coming here
for four years! She's a college grad and recounted what she believes
tipped her into the long decline to where she is now - a bout of
influenza. I too took such a hit in 2009 and in retrospect it probably
was the beginning of my irreversible decline, too.
chatted with a post-transplant guy who just looks GREAT and she
commented to me how it was a complete 180 from the version of him she
first met. She noted that's true of so many; she's seen a lot of people
come and go. I respect her seniority; and I suspect she was trying to
tell me something, too, possibly that she's afraid I'll also pass her by
while she continues to walk loops of the track.
that while she is definitely sick, her team doesn't want to list her
needlessly early. Her summary began sounding familiar. I talked to her
about my concept of the donut hole and how it has landed me in an
untransplantable grey zone on the list at Columbia -- and she completely
agrees that's what's happening here with her. But she also agrees that
she won't have to be death-bed ill in order to be transplanted here at
Duke - that she'll be listed once she's just a little bit sicker than
she currently is. And as she has CF, that's frankly only a matter of
when, not if. We talked about our fears of one or two more good lung
infections sending us rather speedily to our graves, if the transplant
team can't "catch" us fast enough. But we don't believe that's as big a
danger here as elsewhere. We believe we're in good hands, not because
everything is perfect at Duke, but because we believe nobody else is
doing better, or even coming close.
Today I'm reminded of the
ties that bind us - across distance, across the isolation imposed by our
disease, and across the differences in our transplant journeys, we have
common experiences, open lines of communication, and often arrive
independently at the same conclusions. We may be ships passing in a
dark and foggy night, but we have the comfort, at least, of the wireless
bringing us each other's voices. "We're here, we're here. And we