Well just got back from Jersey (Dr Fiel) and it went in a different direction than I thought. My weight was down 8 pounds, but my Pulmonary Functions were the same as last time I was there (27% of predicted). Still under the magic 30% to be listed for transplant. I asked them why I had not heard anything from Penn yet about testing and they did not know if the records were sent yet. They will let me know tomorrow.....sigh!
Since I can barely walk around right now without being short of breath this evaluation makes no sense to me. I sounded good with no wheezing and just normal crackles. So, the good news is no hospitalization or home IVs for now. Going to try avelox, a fourth generation Fluoroquinolone. I have been allergic to other quinolones (Cipro, Oflox), so we will see how this goes. Last time it felt like bugs crawling under my skin. I'm taking Benadryl just in case, so nighty night soon...LOL
If I react to the Avelox then going to do oral Zyvox (have tolerated this via IV before). So the short of it is we have a plan and it does not require needles in my arm (other than the H1N1 shot I got)....
This disease is imposable to figure out sometimes. Last time I was at Dr apt I was feeling great, weight was up, and because they said I was sick I left with the need for IVs. This time I feel like shit, can't even walk around right and they say I'm OK. So I guess we are going to have to ride this one out and see what happens.
Oh and I have to start eating more!....I suck at that, never have an appetite...My goal is back up to 160 by first of the year.