It was a clinic day for a lot of us. The NY crew Denise Horgan, Piper Beatty, and myself) were all there at the same time. We even got a quick picture together. I think I will treasure this picture of us long after all of us are transplanted and back home. We're all smiling, though Denise's smile and mine can only be seen by our eyes; we're wearing masks. Piper has a commanding position from her wheelchair, while Denise wields her IV pole like Gandalf's staff. As for me, I have my hands on my hips in a "come at me bro" attitude.
But then we had our appointments and got a fresh look at things. Denise has hit a wall: waiting for a liver doc to weigh in on her case, an intractable chest infection that she's being re-admitted for, and still not listed. Piper has hit a wall: can't get in enough calories by mouth so she's sucking them in with a g-tube and she can't get enough CO2 out, so she'll be learning to sleep with a bipap to blow the CO2 out at night. As she puts it, "late-stage rejection both sucks and blows!"
As for me, my wall is also CO2, and a lung infection that, this time, doesn't even show up on the sputum cultures! The IVs have barely made a dent, but we'll continue them through Friday. Worse, my PFTs weren't great. My FEV1 hasn't budged, but my FVC has plummeted from 60% to 51%. Possibly the most telling is that while waiting to do the arterial blood gas, off oxygen, my sats hit 87% sitting quietly in just under 9 minutes. I've never dipped below 91% in 15 minutes in that situation.
Today, we each of us got a fresh hard look at the walls we face. But looking at that photo, I'm reminded of how tough we are. This is a picture of a crew that's going to fight to the bitter fucking end, one way or another. Never give up, never surrender. We will surmount any wall placed in our way.
No comments:
Post a Comment