October 24, 2013

We're all in this together

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The nice weather seems to have made people more voluble, even those who are normally silent and withdrawn.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.

We'd just 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.

She lamented 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 understand."

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