Just checking in...

Hi everyone, just thought I'd pop in and say hi. I'm feeling pretty good overall. The first night home from the hospital was absolute hell - though more on mom than on me! I was scheduled to either take some medication or change my tube feeds or something. I even set my alarm so I could at least help out, but I completely slept through all alarms and equipment beeping. Needless to say, it was a night from hell.

On Wed, we had a 7 am appt (ick!) for "follow-up". Well, I guess somebody "told" me that I was supposed to bring all my meds, but my drugged-up, just-out-of-surgery self plain forgot. This really ticked off the nurse. They said I was dehydrated and put 2 bags of saline in me, and basically sent us home. This, of course, was after the nurse decided that I should cut my pain meds in half and try to stretch out the time in-between. I'm fine with trying to reduce the narcotics, but not once did we ever see or speak with a doctor.

They wanted to see me again today (at 8 am, but I negotiated to 10!) This time we brought all my meds. The nurse asked me if I was less nauseous - I said no. So she left to call the Dr (I assume) who said I need to start taking zofran again. Zofran has never worked for my nausea, and I reminded her of this. She said, "Yes, I told him and he says he doesn't care." Seriously. Then they sent me home. Without ever reviewing my meds (which we remembered to bring this time). And still never saw a Dr. My main Dr (Dr. Dunn) is amazing, but is out of town till Mon so her service is covering her. Anyway, I'm going to call Louise (the transplant coordinator) tomorrow about all this. I'm done lugging myself down to the hospital to be treated that way. I think the goal here is that I have to be able to clamp my g tube (the one that drains my stomach contents) before I'm able to eat anything. But I have to have my nausea under control before I can clamp my tube, and my nausea is NOT under control. If you saw what was coming out of that tube, you'd be nauseous too!

So there - I have done my checking in. Other than the nausea, I'm really feeling pretty darn good. The pancreas pain remains gone! I only have 3 more tubes to get out of me. :-)  I have to keep ahead of the surgical pain, but it's all getting better each day. I love and miss everyone back in Tucson and can't wait to see you all! Not sure exactly WHEN that will be, but soon enough... :-)