Wednesday, May 23, 2012


So even though I finished two weeks of oral antibiotics a week ago I'm not feeling so hot.  I called today to ask for IVs.  I just got off the phone with the doc.  We're running out of options of things to treat me with.  Wonderful.  My options are : immipenem or merropenum (both of which are famous for lowering the thresh hold for seizures and I had a bad reaction to merro in the past), tobramycin (which they almost never use on me because I have some minor hearing loss that I doubt is even related), zosyn (which I had an allergic reaction to last time so it would require I get desensitized to it in the ICU), or one of the cefs (ceftaz or cefipime).  So I'm going on ceftaz, cayston, and oral cipro.  Joy.

The doc acted like he was listening to my concerns but then just blew them off.  I just....uhg!  I have a track record of going on and off IV antibiotics when they don't take a chance on them with me.  I'm supposed to go to Oregon in a month.  I don't want to be doing this back and forth shit while trying to take a trip too.

I want to move to a place that has doctors who are willing to be a little bit risky if it means I will do better!



Thandi said...

"not feeling so hot." Simple line, deep meaning. Hope you get what you need from those who should be doing more :(

Anonymous said...

I know what you mean. You might want to contact the cf center at children's hospital/brighamandwomens hospital in Boston. They seem to like a challenge and can be quite innovative. On two occasions they have consulted with other physicians from around the country about me. They're great!