Ive been home a week now. Hubby got a small frig for our bedroom so I can keep my meds and IVs in without having to go up and down stairs...it has been great! I was having some stomach/heartburn/throwing up...not being able to eat or even drink. I checked my pills and realized I was out of Prevacid, which I've taken for years. With the hospital admission and coming home in a steroid haze, I didn't realize I wasnt taking them after I got home. (was in the hospital).I lost 8 lbs in the past week...yikes! But as of yesterday, I'm back on them and I can eat again!! Truly a magical pill!
I had an appointment with a new arthritis dr in Akron on Wed. It's a second opinion...she took 17 X-rays of my hands and back and 9 vials of blood. She doesn't think it's rheumatoid, but osteoarthritis or cf related arthritis. She changed plaquenil to Celebrex it was an exhausting day and I used O2 the whole time.
Yesterday was a CF appointment. I felt like I was breathing better, took O2 along...but didn't need it if I walked slow. They de/reaccessed port...IVs for another week for sure. But the best part was that my PFTs were at 42% and .99L. I was proud, amazed, thrilled! I haven't been out of the 30s in months. Now I just need to eat and get some strength back again! Next CF appointment is Thursday. I'm praying for more improvement!
Oh and enjoying our pretty snowfall today...