status update

Pulmo rehab is fun.  I’m the baby, but that’s ok.  Really a nice bunch of lungers…of course I’m the only sarckie in the whole bunch.  Four old ladies, four old men and me.  They sit at tables segregated by sex, which I think is a hoot.

Cardiac echo came back normal.  Interestingly, it hurt like the bejesus.  I was not prepared for that.  The sarc pulmonary fibrosis made it difficult for the tech to see parts of the heart the way they would normally do the prodedure, so she had me assume unnatural positions (in a manner of speaking)…and she had to press really hard which was not fun.  I actually had some bruising from it.

Otherise I feel good, most of the time.  I have my own sarc scale:
Good, Meh and Bad.  Right now I’m about 33% on each for overall days.
“Good” is feeling energetic and able to do a lot.
“Meh” is ‘my old normal’.
“Bad” is in bed or so tired I’m not worth a damn to anybody.

Pulmodude is s-l-o-w-l-y titrating down my prednisone.  Now on 15mg a day until mid-May.  I am much more achey on this lower dose and seem to be having more skin problems…breakouts on my face that i’m treating with OTC pred creme.

I saw an opthalmologist.  I have the typical dry eyes of sarc patients.  My eye pressures are elevated.  Could be sarc, could be pred.  Watchful waiting now.

Lungs feel good.  Using IS up to 2000 right now, which is damned good.  PFTs coming the first week in May.


One thought on “status update

  1. Did I not tell you that I’d rather have ten right heart caths than one echo?

    I always come out bruised.

    Sorry I didn’t tell you.

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