November 21, 2013

Having Faith

Pulmonary Rehab Day 33: Should've started with a better breakfast.

Went to rehab at 11:00 only to find out the change in scheduling that had been benefiting me was redacted, leaving me with scheduling problems again. Then I had to abort floor class (yoga today) so I could jet over to the hospital at noon for what I thought would be a short endocrinologist consult. We didn't leave the hospital until 3:00! And walking to and from the clinics with my portable tank, it has become clear that I now need more oxygen than the pulse regulator can provide; I'm going to need to move to the constant flow regulator and carry extra tanks. It's the CO2 buildup that's the real culprit, not just oxygen sats.

I had just enough time to get back to rehab, rush through weights and a 20 minute walk, and sneak into seminar a few minutes late. Then sneak out again to hook up an IV and sneak back in again. My first good meal of the day came at 6:15!! And now I end the day with some harsh criticism coming out about the windows at Macy's on State, handiwork I'm largely responsible for (though I can't say I'm surprised). I'd like to say I can finish therapy now and the day will be over, but I have another IV in an hour and another after that at 11:30. There have many blows to my psyche today; and what I wouldn't give for about 12 straight uninterrupted hours of sleep right about now.

And yet ... still my thoughts are with my other NY-Durham "family", my "cysters" Denise and Piper. I'm relieved Denise is discharged and gets to sleep in her own bed tonight. Her CF has been presenting her with complication after complication. If I think I am fed up with these old lungs, I can only imagine how over it she is! She bears up through it all with the fortitude of a Spartan; even I don't have that kind of strength.

Piper's call from NY turned out to be an exhausting dry run for her, disappointing to her and her family, disappointing to her friends. While I have the utmost confidence she'll get her double lung transplant here at Duke, I understand it is so easy to get discouraged when you're sucking wind w/ every breath and there's just no way out but forward. I understand because I'm living that same inability to breathe.

The light at the end of the tunnel sometimes looks very dim. But the light is yet on and progress is being made. And nobody I know from my scant eight weeks here in Durham has yet died while waiting for lungs. In fact, one of my first pre-transplant rehab friends, Rodney, showed up today for his first workout as a post-transplant. It was, I kid you not, like seeing a pillar of fire appear in the desert. The sight of this man walking tall and proud and without oxygen was so beautiful I wanted to weep. This! Is! Happening! I am not a religious man, but I am learning the meaning of faith.

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