I did my final Colistin treatment this morning.  Granted I only had 8 days worth but still.  I am not refilling my rx.  I just can't do it.  I want my lungs to go back to normal.
I talked to Dr H on Thursday and he started me on 10mgs of Prednisone twice a day.  And to start tappering to 5mgs at night on Saturday night if I was feeling better.  I am still on 10mgs twice a day.  I feel no different, but yet I don't feel worse.  So maybe that is something.  I am supposed to call him today to update him.  I really hope he doesn't want to see me on Wednesday.  I will go home if he insists but I won't be happy about it lol.
At least it is not an infection and entirely from the drug.  That is a relief I think. 
My coughing attack Friday night when I got into bed left me at 80% O2 and 173 HR.  Insane!!!!  That has been the worst by far since I started.  At least when I am watching my numbers.  I have my pulseox glued to my hip so I can monitor.  I probably should have my O2 on constantly to help but when I am sitting here my HR is only about 110ish and my O2 is in the 93-94 range which is normal for me.  It's the up and moving around that gets me!
After I talk to him I will update my post.
 
Hi Amy...
ReplyDeleteI'm a 29 yr old CF'er from Eastern Canada. When I read your blog it's as if I'm reading my own thoughts!! I cried when I read the letter to your baby Maggie.
I'd love to speak with you sometime... My email is jlroche@live.com
Jenn