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Ok so here is a more official update.
I have gotten some of my labs, xrays and culture results back. Labs and xrays look fine. Lungs are still full of mucus and infection but there is no pneumonia so that is good. They cultured for the MAC bacteria again…the one they found last time in december. I have been treating it with intense antibiotics for four months now. They said within 60 days there should some kind of improvement, which would result in the bacteria decreasing and even disappearing and should begin to culture negative. But that is not the case right now. The bacteria is still there, and it is still growing…at actually a fast rate. This is the reason my lungs continue to decline and why even walking up stairs is becoming something I dread. So the next step is to meet with an Infectious Disease Consultant who specializes in this bacteria. They will set me up with a new treatment plan. Right now I am in the process of transferring my care to UCSF, so I will either meet with someone here or preferably someone from UCSF when I get out.
That news was a little discouraging and frustrating. I am willing to do anything i have to do to get better, i will do any course of treatments they tell me..but no matter what I do it just never seems enough.
The good news is i will probably only have to stay in here a week. I will do one week of IV antibiotics here and then take them home for another 1-2 weeks. So that is something to be happy about. I have done home IVs so many times I am a pro. And hopefully this will be my last stay here in sacramento. I hate this hospital, there are to many reasons to list. But the care is really not that great, like right now….i asked for fresh water 25 minutes ago and I still havent got it!! And then when I finally do get it (i will probably have to call them again and remind them) they say “wow you sure drink a lot of water” like its annoying them, and I say “well yeah im on 3 really intense IV antibiotics so I can get dehydrated really easy” augh….idiots.
Anyways…thats it for now. Casey got here today, so that makes everything better:) And i think I will have some visitors later. :)
