Around the Penthouse in 36 hours

I’m home again after spending another night in the ER and 3 days in the Penthouse here in PDX. See they call it the penthouse because it is newly refurbished and the one side, transplant ward, is pretty snazzy. Al hardwood flooring, new individual rooms and all. Still, not my favorite place to hang out. Although 3 stays in 3 weeks is pretty often so I’m getting to know the staff both on the floor and the transport staff to take you places between floors and locations inside the VAMC.

I guess I have what you might call a hostile abdomen. I’ve been opened up enough and cut on enough that there’s quite a lot of scar tissue ensnaring things and not let them be all bouncy and free like normal. So every so often I get all puffy and bound up because they shut and get clogged with food and gas instead of just being able to change shape and let the stuffs go through. Which really hurts. A lot in fact, and sometimes it comes on and I get stuck in this loop of pain killers and bindy pain that is with end and I have to go to the Hospital. This is exactly what happened the last two times I went to the VA the other being that my liver was packing up with bile causing my pain and sending my Bilirubin counts through the roof. It’s all a lot more fun that I make it sound though, really, it’s blast.

But that was last week, and now I’m home again. Friends brings us dinner, and stop to see how I’m doing and it’s nice. Now if I can get back into the swing of things with the bile drain they installed and get back to work that’d be nicer yet.

It’s back and so am I – Reoccurring PSC is a bitch.

Some time in 2006 I started this blog as I started to really understand that I really was 34, my liver was trying to kill me and I really did need a transplant or continue to get more and more sick, got to hospital more often, and get used to the fact that I looked like Grandpa Simpson. Truth be told I just couldn’t live with looking like a Springfield resident for the rest of life.

The disease I have is Primary Sclerosing Cholangitis (PSC), and the bitch is back. It decided to be my friend again a couple of years ago and I started getting sick. I started off slow hiding by other things like Lymphoma and Pouchitis (what I get for having a J-pouch from my very first major surgery in 1995 where they excised my dirty colon). First fatigue. Mind numbing fatigue actually. The kind that wraps you like a swanky-franky and then lets you over-cooked until the bacon is more like strap leather and there is no hope of escape.

Next comes if buddy, persistent nausea. It like being motion sick more than half the time, so you can imagine what that does ones appetite too.

And to top it all off, it’s totally different this time around, and the internal anatomy around my liver is different to the treatments aren’t the same.

Oh, and often I can’t sleep.