Recovery is a cold-hearted bitch

It’s true, like Dotty, recovery is a cold-hearted bitch from which there is no escape. Ask me how I know, go ahead…. ask me.

No? Fine. I’m telling you anyway. It’s been 7 months since my transplant and I’m still not working full time, I still don’t have 3 good weeks strung together that I can say I’ve been energetic, alert and engaged in life. It’s because I’m not. I’m tired, often in pain, also nauseous, and disinterested in most things. It’s a struggle to stay on task and get work done. And I mean quality work, not just showing up and keeping a seat warm because that’s not me -well, it didn’t used to be me any way. I’m not sure who the hell this guy who is writing this shit really is any more.

I hurt my back a few months ago, and apparently did a real number on it since I have osteoporosis. I have slight impact fractures in 5 of my lower vertebrae. Now the docs tell me it isn’t anything to freak out about, my back isn’t compromised to the point that I’m in any danger of real damage or paralysis, but none the less it causes me pain ranging from moderate to debilitating.

My intestinal function is all wonka-doo too after the transplant. It’s like they went in and played twister with what little digestive system I have left. So I have areas of really thin scarring where you can actually see it move, it’s right out of a page of Aliens. Christ, I’m growing a head-crab in my gut.

Now, you might say “dude, you’re complaining that you’re alive”. And I would say retort by saying “YEAH!? SO!?” I am fucking complaining. I’m pissed that I’m not as healthy as I thought I would be after the transplant. I’m pissed and I’m depressed. This wasn’t supposed to persist. It was supposed to go away. You know, like “fuck off, I’m busy livin'”. Nope, no such luck. I’m often in pain, sometimes I can barely stand let alone walk, or I feel like I’m going to throw up for days at a time or even better, I spend days at a time sleeping. But at least I’ve got a good view for a few days.

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Amazingly 6 months is nearly here

I can still remember thinking that I don’t know how I’m going to be able to handle another transplant. Even as I was being prepped for surgery in August I was worrying about how hard it was the first time and how the surgeons made it seem like the first transplant was a cake-walk by comparison. In many ways they were right. My first transplant was much easier than the second, but I have to consider how much healthier I was the first go around. Funny right? Here I am talking about being “healthy” in reference to having to have a liver transplant. Thing was, I was healthier then. I was riding my bike a lot, and I don’t just mean the 5 miles to work and home, I mean going on a few centuries and numerous half centuries (which for those who don’t know, a century is 100 miles).

Things were a lot more dire this time around, and my recovery reminds me of that every single day. I have equally as many good days as bad days still. Fatigue is still my arch nemesis. He’s a dick. There are a lot of things I was hoping to have started to be able to do by now, and I just can’t yet – and that is sometimes a real bear to wrap my mind around. Realistically, I’m doing very well and I have an excellent set of lab numbers every week to drive that point home, but just the same I was still hoping to be back on my bike by now. Maybe not riding half centuries yet, but at least being able to crank out a few 10 mile rides here and there. But nope, I’m not there yet.

Happily I can say that I’m starting to sleep better and wake up rested more frequently than I had been and the night sweats that had been plaguing me are becoming the exception these days. I’ve started a couple of new medications to help with both sleep and to get me off of the opiate based pain killers. Mirtazapine is what my doc has prescribed me to take for sleep, and so far it’s helped a good deal in getting me to sleep. Staying there is another thing all together, but this seemed to help a little bit with that as well. I haven’t noticed anything funky, and it doesn’t cause to me to have crazy ass dreams like some of the OTC sleeping pills do – bonus!

Getting back to work full-time has been a struggle too, and I’m still not there yet. It’s still pretty easy for me to “over do it” as far as activity and days in a row I am active for a good amount of time. After which, I get treated to being just flat out exhausted, like tired down to my bones exhausted. Not much fun, but it is improving so I can see a light at the end of the tunnel. I’ve been working part-time for closing in on 3 months here soon. Getting back to work has been good though, and it’s good to be around people who are not my dog.

Looking at two months and counting

Well, it’s October and now I’m looking at nearly two months post transplant and things are still going pretty well all things considered. My wound sis healing up quite well, and I think in another week it’ll be healed enough to not have to bandage up in order to cart her and weeping or seeping from the wide spots, which will be nice. What’s still not going that great is sleeping. I don’t sleep well at all. When I do sleep I wake up frequently in a sweat, which makes it hard to go back to sleep since now I’m all wet and cold. I stay up far later than I want because I can’t sleep, so I sleep in spurts of a couple hours here and there during the day which impacts how often I go for walks which means my docs and coordinator harass me about it since I’m supposed to be walking 4 times a day in 30 minute intervals. I’m not coming anywhere close to that, although I generally hit 2 to 3 miles a day.

Our working theory for the sweats and insomnia is that it’s the prednisone they have me taking that is causing these “hot flashes” and insomnia. That’s frustration number one. Number two is the fact that I’m still not allowed to drive myself around since I’m still taking some pretty potent pain killers. I’ve been doing well getting the dosage down to Aaron, but I’m not quite there yet and it’s starting to drive me a little stir crazy having to rely on other people to take me places since I’m still not really up to walking long distances all at once. 

All in all though I really can’t complain too much, and the only real pain I get regularly now is from the drain tube they inserted into one of the bile ducts to scar it open. Biliary drains suck, take my word on it, I’ve had at least one sticking out of me for the last year and because of some stricture gentlemen in the biliary tree I get to have one for around another 6 months. Hooray for not being water tight. At least it’s the winter and I don’t own a hot tub, so there isn’t really anything I’m missing out on right now by not being able to be submerged in water. 

The thing I didn’t really account for however is how damn bored I get. I mean, I have very little human contact during my typical day since everyone I know works, and I’m home alone by myself all day since I can’t drive. I’ve said it before that I am not the most gregarious dude on the west side, but damn, I miss being around humans. My dog can’t really hold a very stimulating conversation. Hell, half the time if I didn’t have my phone handy I wouldn’t know what day it is.

Thirteen days and a wake up 

Tomorrow marks two weeks after my second liver transplant and I’m back home sitting in my new recliner. It’s been pretty smooth despite it taking a while to get my pain under control. I feel much stronger and more stable, even though things took a little turn to the south yesterday. The plan was to be transferred to a rehabilitation facility to help me get stronger and provide a stop-gap between the hospital and home since we have a lot of stairs. Once we got to the facility though it didn’t take long to decide this was not a good place for me to be. It was more of a low-end nursing home than a rehabilitation center and the vibe was not good, not one of healing and Litsa felt pretty much the same way so we simply took our leave and went about securing the remaining medications that hadn’t been physically supplied to me yet. The docs were a little freaked out that we bailed and tried a bit to get us to come back to the hospital, but having gone up and down the stairs at home already, I feel pretty confident that we did the right thing and mentally being home will be far better than being in the rehab center. Besides, I’ll still be going into the VA twice a week for labs and liver clinic, so it’s ultimately not that different other than the location – and I get to sleep in my own bed.

My mobility is increasing and my pain is manageable, and the incision looks to be healing well even though there’s a couple of spots that need to be packed with gauze. After labs tomorrow I will be checking with my coordinator to have the wound looked at to make sure we’re doing a proper job at changing the bandages and keeping it clean etc.

The other big change is having to check my blood sugar and injection insulin if needed. I’ve only had to insulin up 3 times so far and I’m hoping to not have to do this very much longer since it’s the Prednisone that is making it necessary for me check my blood sugar and I won’t be taking the prednisone forever.

I feel good about my progress and the docs do as well, but that being said I’ll be happy to be 1 more week out, then 2, then 3….

Nearly a week goes by….

After nearly a week post transplant I still feel pretty good if you subtract all of the pain. Today was especially bad for pain. I think I got a little behind my pain meds overnight, but my bowels just aren’t quick to wake up right now, so now I’m back to NPO (nothing by mouth) which is funny since I always thought it was short for “now phuk off”. Realistically I should’ve known it was Latin “nil per os”, but they don’t want me to make things worse, so I guess I can get on board if my morning is less painful than today’s. 

I’ve been up and moving around still, they’re just being pokey to get moving. I’m still doing well and better than the first time, so we’ll just have to see how the next few days go.

Here’s an interesting bit of info;  if you lay on your left side, your bowels are more apt to loosen up and wake up…..

Now I’m going to try and get some rest.

Goodness gracious great balls of fire!

There’s always something that no one talks about, some part of a process that gets tabled – the fact that my nuts are all swollen up is one of those things. Not that I really want to talk about it, but it’s not a lot of fun, and somebody should have said something. So I will just put it here. Hehehe

A lot of bits are still swollen and puffy which means I get to stay on water pills to help “pee off” excess water trapped inside. So I’m peeing like a race horse. Could be worse though, I could be the dude who just came in on LifeFlight.

The rest of the story is following a pretty awesome and good trajectory. Tomorrow I get the incision  coverings removed so that the wound will air out and heal that way. I’m not sure how I feel about that yet, so I’ll leave off with some AC/DC while I work through some pain………

And my balls are always bouncing

My ballroom always full

And everybody comes and comes again

If your name is on the guest list

No one can take you higher

Everybody says I’ve got great balls of fire!

I’ve got big balls

I’ve got big balls

And they’re such big balls

Dirty big balls

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.