Sunday, May 12, 2013

Everything is Vanilla Right Now

Last Tuesday I had my clinic appointment.  I also met with the respiratory therapist to go over my vest settings and airway clearance tactics.  It is a new thing they are doing to try to get people more aware of how to use their devices and improve their health.  Nothing really changed with my settings.  She mentioned I should schedule in breaks between frequency intervals so I can do some huff coughing.  Its hard when I am not all gooey to get stuff up.  I told her I do the vest not because I feel better when I do it, but because if my lungs still crap out I can say well I am doing everything.  Its the truth.  And at least I am doing it!  Faithfully!  Seriously its been like 3 months now and I have missed a few days to being sick and that is it!  Considering it had been months before this is like wicked amazing.

Clinic was clinic.  Nothing changed.  I am more run down and feeling crappy but I also had the flu and she told me to finish the 2 weeks of orals I was given and see how I feel.  I go back in June and if I am crappy still I will see about IVs.  This is the longest stint without IVs since I moved up here.  I attribute it to my exercise regime.  Whether or not that is true I don't know, but I feel pretty good considering its been almost 5 months since my last course.  My lung function was the same 38%.  Weight was down 3lbs thanks to the flu.  O2 normal, HR normal, BP normal.  Booooring lol.  Nothing at all exciting, and quite frankly I will take it.

I am a little disappointed though.  My clinic is participating in the next Vertex trial and I was asked to do it, if I wanted to.  Unfortunately you have to have an FEV1 of 40% or higher, and even with a treatment I don't hit that mark.  So I am still out.  Kind of sad.  I enjoy the studies.  Maybe more exercise will bump me up more and I can do another one....this makes two in two months I was shot down.  le sigh...

1 comment:

  1. Glad to hear you are doing "just vanilla" - also glad to see you've picked up the New England "lingo" - proper usage of the word "wicked"!! - catchastar