another day, same view

by kaleidegirl

i woke up early today and i guess since i had to go to the bathroom right away i decided to get in my chair and order up my coffee.

so here i am feeling like it is later than it is. not by much though. just waiting on the drs. they are outside my door. they are gonna chat about me for a bit out there and then come in here and tell me i’m not going home soon like we were all hoping.

they have been lowering my oxygen to see how i do and i thought i was doing ‘ok’ but then i went to bathroom and fixed up my blankets in my chair and down went my sats. i was lightheaded and had dropped into the low 60’s just as one of the transplant drs came in.

apparently my chart said i might go home today. that isn’t happening now.

~~drs came and went~~

the transplant team had their meeting today where they discuss all their cases and they want to do some tests again to see if they can get my score up more. so they are pretty aggressively trying to get me those lungs.

~~and then~~

pysical therapy was just here and we did some exercise and a walk and some stairs. it was hard. it was upsetting. just when i was thinking i might be doing a little better i get hit over and over with the realization that i’m really not.

i realized i haven’t been thinking much about the surgery itself. just about what i want to do after, being able to breathe. its a little jarring when i find myself imagining getting the call. i almost feel like i should be really visualizing that more. like i could will it to happen sooner. yes, i know that is silly.

anyway at some point today there will be a special transport team taking me down to the pulmonary fuction test lab for breathing tests and then some time this week i have another heart cath test. the heart cath involves them going in through my neck to measure the pressure in my heart. they are doing this again to see if the pulmonary hypertension that seems to have started about a year ago has gotten worse. if my breathing tests are worse and the hypertension is as well these things will increase my score.

i’m trying not to do too much today aside from my walks and meals. my dear friend Carolyn is coming to do my hair which is awesome mostly because i haven’t seen her since she met me here Sunday with my bag. i mean, we all know i hate not having my dreads in but really looking forward to seeing her.