Another round of Verices

I just spent nearly another week in the hospital again with a bleed in my throat or Verices bleeds. I should have seen it coming but I was too busy being distracted by nearly not being able to stand up without falling over and high ammonia levels that were altering my state of mind. Grrrreat!

I finally called in the the towel when I started hurking-up blood a few hours hours later. A bit late, so it earned me an ambulance ride to OHSU up on the hill across the bridge from the VA. Let’s go ahead and give that another greeeattt! The best part of ambulance rides? Nothing. Nothing at all, so the fire truck came then the ambulance and within 30 minutes I had hurled blood up all over the front of my Puppet t-shirt with is now in a bio-hazard container since they cut it off of me. That was my Monday.

Now I’m home and I still can’t sleep, but at least I have something to do here, namely blog. So there is a lesson here kiddies, I should have stayed at the hospital Monday.

My coordinator said she told me as much but that I insisted I go home. That’s not how my feeble brain remembers it, but who knows. I knew I was in trouble once I got home and could barely walk, but I guess a part of me was hoping it would just pass. Since I had no real perspective on it it all, it seemed reasonable at the time – now? Not so much. And what is it with IR (interventional radiology) docs? It seems like I have to tell them all 3 or 4 times before they catch on that moving and swapping out my biliary drains is painful enough that I have to be put completely under to do it, but they’re like “nah. We can get r’ done all normal like”. It’s kinda like an episode of Fargo that has no humor in it, just me being in pain.Jackasses.

At least now I’m home again so I can get back to where I was 5 days ago health and strength wise and hopefully soon I will have a new liver so I can start putting all of this behind me again.

The importance of friendship

I’ve been thinking a lot lately about friends. Close friends and acquaintances who enrich our lives in some way. I have fewer than a dozen people that I could name as a close friend that I would tell just about anything to, they would understand and forgive me if necessary – no questions asked. I have about the same number of folks I could list as people I can speak freely to, but without the same kind of sharing. For this I count myself blessed. Mainly because I’m married to such an amazing woman (and one has been been my friend as much as my wife), and secondly that I have any friends at all being a real pain to get to know.

One friend took me by surprise about 20 years ago; Terry Toedtemeier. Terry was the Curator of Photography at the Portland Art Museum and graciously introduced me to people such as Stu Levy, Chris Rauschenberg, and Walter Rosenblum. But mostly I remember him as an on again off again friend who I could not see for 5 years and pick up a conversation with the minute I saw him again. He was an advisor and mentor and in the nearly eight years since he passed not more than a week goes by that I don’t think of him. I was lucky to know the goofy photographer/historian/geologist, and learn from his amazing insight. I have several of his prints and even the camera that was used to capture the images of his which I own – it’s terribly intimidating to use however and I have not produced any images worth the film that captured them – but I will.

So what’s my point here? PSC is a debilitating disease. It’s a real fucker in fact. My sleep cycle is dicked to all hell, I’m tired ALL THE TIME and half of that I’m in some sort of pain but I have so much scar tissue that I really have to be careful about the amount that I medicate myself to combat the pain or it makes things worse. It’s super easy to forget about your friends and what you have that’s good and just spiral into depression (yeah, I got that too) and focus on the Greyhound Bus sized ball of shit you lug around. I’m not that good at it yet, but I’m trying.

Friendship is grounding, rehabilitating, rejuvenates the soul and makes it worth pushing through the sludge of days and weeks when things are the hardest. It offers a different perspective and shines light on areas you might not think about. Even if you’re listening to someone else’s troubles for a bit it’s better than dwelling on your own. When your shit sucks it feels good to be able to help someone who needs a little friendship of their own. I feel just as good to give as I do to receive – that’s why it’s important.

So to all my friends; thank you. You help more than you know.

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.

28 of the last 60

That’s how many days I have spent in the hospital in the last 2 months – nearly half of those two months I had been holed up either in ICU or on the Penthouse floor of the VA.

Now, I’ve been out for nearly two weeks and I’m hoping to keep this going. My counts are declining a bit since they put in the new larger drain tube, which hurts quite often, but it seems to be doing the trick for the time being. Which is good.

My MELD has gone down to 25, but the AB Positive transplant list for the region is still a short list of two, so who knows what it all means as far as timing and getting the call to come in, but I feel pretty good for the most part right now so I’ll take it.

f*ck-psc

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.

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.