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
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.