The downside of having holes

Holes leak. By nature a hole means something is not 100% water tight anymore, and I have two of them in the form of Biliary drains, and one of them is leaking like a sieve. Fortunately it’s not all of the time or I wouldn’t be able keep up with but it randomly decides the bile needs to come out – I would prefer it come out in the tube like it’s been told many times, but it’s not asking where it just pronounces here I come saturates the pad then leaks out of the tagaderm covering.

Dick move move bile.

So I go in Tuesday to swap the drains and for the IR docs to look around and see what’s what. Great. At least they’re finally giving me general anesthesia so I won’t feel it. Then I get to stay in the VA Hilton for a day or two to make sure they didn’t stir up some infection to bother me with. Joy. They should make credits with a points system for days spent in the hospital, I’d have me some points racked up by now – like frequent flier miles.

In the meantime my MELD score holds pretty steady around 25 – 30, and I just sit back wait and hope to get the call for a new liver.

New site header graphic

I’ve had an other than normal amount of “free” time on my hands these past months and I’ve been doing a lot drawing, doodling and lettering to pass the time and get back into drawing. So one of the things I have been working is a header graphic or site badge for the blog.

Deliver my liver

So it’s time to break out the scanner and get a clean scan  rather than just a so-so shot from my iPhone. Plus it also gives me opportunity to use my sweet Copic markers. Yes they are expensive, and yes they are so very much worth every penny. The only downside is they are still hard to come by due to a dock workers strike. I guess the strike has ended but shipments are still sporadic and irregular. Which isn’t a huge deal, but I need a good set of primary and secondary colors.

Health update:
I continue to fight recurring infections and with the two drains I have now trying to keep my malfunctioning Biliary system which is basically trying to kill me through a series of carefully crafted dick-punches. But I’ve been out of the Hospital for nearly a week,  so maybe I can get a respit for a while here and stay at home long enough to feel like a regular human for even a short while.

As an aside: I hate flies. All of them. Big ones, little ones but especially those little green bastards that bite.

Damned Dirty Liver

Like the day after I wrote the last post I developed another blood born infection from my damn dirty liver, and as it is it likely keep happening until I get transplanted, which right is somewhat promising because I’m at the top of the least for now.

Seeing how there’s not a lot I can do, I’ve been working on a header graphic for the site, maybe I’ll finish that this week.

I must stay it’s easy to get around in a hospital. Makes easy to just get up wander halls. at I have to go for a walk, and all that that entails. Not that I would to stay at the when I really don’t need to.

Here we go again

David Coverdale and Whitesnake put it better than I ever could, but……

Here we go again. A fever presented itself not even two days after I left the hospital which was low enough to warrant a huge fuss, but by morning it had gone up to compell me to come into the VA again. Not that I wanted to mind since I felt fine, but since it was nearly 102 we hopped in the car.

Very frustrating.

Now it’s 3 am, I can’t sleep, and the fever is back up to 102.7. Unfortunately they don’t really know what’s causing the fever and my birthday is just days away, so it looks I’m going to have my 44th in hospital.

Perfect.

 

Two weeks to Vascular stability

After coming back to the VA in an event I have no recollection of, I get to go home today I think. Just shy of my birthday I’m looking at getting out of here and back to trying to get healthy. Oh, did I mention my name is going to show up the UNOS listing as well? Yup, I’m very soon to be listed in this region looking for Liver #2, that is if I’m not listed already. I finished all the requirements and the Liver team has accepted my case – Hostile Abdomen and everything.

This hospital stay saw me in th ICU for more than half the time, and left me with a gaping hole of more than 3 days in my memory, which is a very scary feeling. I got so bad before going to the ER that my confusion was bad enough to affect memory, and by affect I mean erase or prohibit retention. There’s a big long name for this too, though I can’t remember it but Neurocognitive impairment is a major issue in patients with liver disease. The worst part is that there really isn’t anything I can do to recognize symptoms as they onset. This was triggered by bleeding vessels in my stomach and created a whole host of issues. I think in total I received 5 units of blood over the duration of my stay. Some were hung while I was in the ER and more while I was in ICU for the second time. My second ICU visit was precipitated by a fever, infection and a clogged Biliary Drain.

All this aside I’m happy to be heading home.

Two weeks is looking to be long enough for me and I’ll be more than a little glad to be home, sleeping in my own bed, and able to wander my house aimlessly if I so desire and hopefully it’ll be a few weeks at least before I end up back in the clutches of the PVAMC.

Working hard at getting better

This is by far, hands down, this single most difficult thing I have ever had to deal with in my life. I’m… what? 12 days into my transplant? 13 days? Something like that. I still have trouble even remembering what the freakin day is – but I think I am doing well, and that is what they tell – me so it’s going well.

This is going to be short, as I am getting tired. Thanks for alll the support from family, friends, and folks I don’t even know. As I get more energy I will start making some more posts, and calls.

My liver numbers are almost normal at this point, something I don’t think they have been in a decade – so that’s always good news.