This is David writing for Eva.
So many things have happened since I last wrote. So little has changed.
The big change is that Eva was diagnosed with C.diff, , a nasty little bug that lives in the intestines. It can cause, among other fun symptoms, diarrhea and intestinal pain. It is possible that all the symptoms we’ve been attributing to the tube can be laid at C. diff’s metaphorical feet. Or not. The good news is that C. diff is treated with antibiotics. The bad news is that it is extremely difficult to treat. It takes specialized antibiotics that function in the intestines, and often requires extended courses (like six to eight weeks). Eva is coming to the end of the first week with no significant improvement, is waiting on insurance approval for a switch to an even more targeted antibiotic, and on it goes.
C. diff, is something familiar to anyone who has spent any time working in a health care setting. It requires certain precautions before going into a room: putting on a full gown and gloves. It is both extremely contagious and an extremely resilient bug. Assuming I am negative for it (which, given a lack of symptoms, we are assuming), we must be doing really good basic hygiene. Alternatively, my body just fought it off, or I’m not particularly symptomatic?
In any case, we now have a disease for Eva to fight off which is curable, which makes for a nice change of pace.
In terms of the tube swap, we have had so many steps forward and back that it is hard to keep track. We were scheduled for a tube swap on Monday of this week. This was an ambitious goal for insurance to render a decision, but with much chasing on the part of our complex care coordinators, we got an answer on Friday. Insurance approved the procedure, but not at Stanford. Procedure canceled.
By the end of Monday, we had gotten approval to do it at Stanford, but only after beginning to figure out how to do it at UCSF, and, of course, needing to restart the scheduling on the procedure.
C. diff throws a new wrinkle in. It turns out that the procedure can be done while Eva has C. diff, but it needs to be the last procedure of the day. But . . . there are questions about whether Eva should wait until the C. diff clears up so that the new tube isn’t exposed to C. diff. The medical consensus seems to be that waiting is the better course. Scheduling called today and offered two dates for a tube swap. Next Wednesday or December 18th. Eva had to take December 18th.
In case all of this wasn’t enough, there was an election this week, and the winner has been trying to end the ACA (Obamacare) since first taking office. Without Obamacare, we are uninsurable at reasonable cost. We would need to go into state high-risk pools. We are definitely beginning research on places that might accept us as immigrants and that have high quality medical systems.
Other than that, everything is just fabulous. Eva continues to be in lots of pain with sides of nausea. Except on days when the nausea is primary to the pain.