Backtracking: February 16th-24th

I write out the word 'calm' with slight amusement tonight, as I realize my definition of calm is and was anything but. Needless to say, home IVs were not the cakewalk I'd hoped for; I woke up with my usual start-of-IV-fever, and coughed up streaky blood two days in. After one week of IVs not much had changed, if anything I felt worse on my insane schedule coupled with the pressure to gain weight and monitor my blood sugars (which is difficult to do when all you want to do is sleep, plus the blood sugar monitoring required 2-hr fasting). I spent the week in a complete zombified state, hanging my Tazocin every 6 hrs and Meropenum every 8, whilst doing my regular treatments in between (three nebulizers a day and three physios a day for those taking note). At the beginning of the week, I was ambitious enough to continue walking around the block so I wouldn't evolve into some sort of useless lump on the couch, but by the weekend I was completely drained and couldn't get off the couch--I had no problems with accepting my role as couch mole.

Follow-up clinic reflected my so-so change in symptoms: my WBC (white blood cell count, which measures the amount of infection-fighting cells in your body) had dropped from 17 to 13.5, and my FEV1 (which measures how well your lungs are managing airflow by measuring how much you can breath out in one second) was slightly up to .75 from .73 the previous week, and lastly my FVC (which measures the total amount of air in your lungs) was also up from 1.39 (43%) to 1.87 (58%)--they don't really mention this number THAT often, but it meant I had a lot less secretions blocking up my airways that day. The Big T (head doc of our clinic) wasn't very impressed with my sluggish feeling (despite me having lots of support at home, I just wasn't recovering) and my lack of results, so she switched my meds to Meropenum and Colistin (the latter which I'd never been on through IV), and said I should get a hospital bed by the end of the week.

Should go smoothly, right? Wrong.

By Thursday night I was calling the on-call respirology doc in a panic because my tongue had been numb all day. I could have called during regular 'business' hours like a normal person, but I opted to ignore my 'slight' numb tongue all day until it worsened after my evening dose. At the urging of my cysta, H, I called the doc and described my oddly numb and itchy tongue and throat (which is my usual allergic reaction to meds, opposed to getting hives or anything typical). The doc told me to stop the Colistin, as it could by an allergic reaction or (more likely) a toxic reaction and that I would be getting a bed the next day. At this point, I was slightly frustrated, because within two days (Feb 23rd-24th) I felt AMAZING on this medication combo, and this was another setback... by the next morning I was back to feeling lethargic, no voice, and short of breath... Oh Colistin, how I longed for you...