Mallymookcf
New member
HEY GUYS!
ok so im not sure what needs to happen at this point, or if there are any options left. i hvae been on 10 rounds of iv antibiotics already this year. that is averaging once a month!!! i have a port so it isnt as troublesome to start IVs when needed, but is this my new way of life??? i feel better when i am on the IVS so i know the meds are working, and my bugs are not resistant.... right? but as soon as i finish a 2 or 3 week course, i start to decline again. about 1 week later i am calling doc again. then they resort to prednisone, which only helps the first few days im on it. then back to Ivs almost immediately after the 2 weeks of prednisone. tonight is day 5 off prednisone and about 3 weeks out from last round of IVs...i am running a 101.0 fever and i feel awful. my mucus production is unreal!!! my chest is crackling to the point others can hear it when i breath! I dont know what to do anymore. i feel like im just trying to buy time until the vertex or something better comes along to make my lungs feel a little bit better than they do now. my qualirty of life is starting to really be affected, as well as mentally and emotionally affecting. i do vest, ocapella, hypertonic, pulmozyme,cayston/tobi alternate, albuterol, advair, etc... so im not negligent by any means. any advice???
God Bless
Mallory(L)
ok so im not sure what needs to happen at this point, or if there are any options left. i hvae been on 10 rounds of iv antibiotics already this year. that is averaging once a month!!! i have a port so it isnt as troublesome to start IVs when needed, but is this my new way of life??? i feel better when i am on the IVS so i know the meds are working, and my bugs are not resistant.... right? but as soon as i finish a 2 or 3 week course, i start to decline again. about 1 week later i am calling doc again. then they resort to prednisone, which only helps the first few days im on it. then back to Ivs almost immediately after the 2 weeks of prednisone. tonight is day 5 off prednisone and about 3 weeks out from last round of IVs...i am running a 101.0 fever and i feel awful. my mucus production is unreal!!! my chest is crackling to the point others can hear it when i breath! I dont know what to do anymore. i feel like im just trying to buy time until the vertex or something better comes along to make my lungs feel a little bit better than they do now. my qualirty of life is starting to really be affected, as well as mentally and emotionally affecting. i do vest, ocapella, hypertonic, pulmozyme,cayston/tobi alternate, albuterol, advair, etc... so im not negligent by any means. any advice???
God Bless
Mallory(L)