Looking back

I joined the Marines in 1990 when I graduated from high school because I had nothing better do to. I had two of my best mates joining at the same time so we off we went. I was a good artist, a promising bike racer riding with a small local team. I hadn’t won much of anything until I started racing on the track and found out I was quite an accomplished sprinter, I particularly like matched sprints. the tactics, the high gear ratios and sudden burst of speeds really were my thing and I had found a calling; although not until I got out of the Corps.

I LOVED the Corps. I quickly found that many of them were like brothers to me, and also discovered I rather enjoyed getting into trouble. I fucking loved the game playing and was good at playing them. I enjoyed Bootcamp immensely and made solid friendships many of which followed me through MCT and SOI, and then I volunteered for special duty and got selected to go to specific anti-terrorism training in the Security Force Batallion Pacific. Here I honed my marksmanship and continued my martial arts training an excelled within the unit. Then I started getting sick. Massive stomach cramps, bouts of nausea, loss of control of my bowels. You have to understand, for me, 18 at the time this was devastating, my morale sank quickly and I started getting pulled from classes and training to go to the medical facilities on the Presidio. They finally diagnosed me with Chrohns. Shit. (literally) they gave me some steroids and started my discharge process almost immediately. I couldn’t reliably stand duty or patrol the perimeter of the base, so they parked me in the sick-lame-and lazy platoon with about 50 other Marines with various diseases. My closest buddy at the time had stage 4 cancer and wasn’t going to make it through the coming Christmas. He was a great guy, good Marine and always had my back. I was separated from the Corps after 1 year and 9 months, just shy of the cutoff to get my full GI Bill funds.

So I returned home, to seek treatment at the VA Hospital in Portland. I can’t complain about the VA here in Portland, they’ve always been good to me, and within the next 3 years, my symptoms progressively got worse draining the life out of me. Constant stomach pain, increasing loss of bowel control, and more pain. Again they prescribe steroids, only this time the steroids decimated my immune system and made even the simplest of cuts turn into a weeks-long healing process and did nothing to lessen the symptoms. And I wasn’t able to control it at all. No food made it worse or better. I drank Metamucil like it was going out of style, and while it helped some, it just wasn’t enough. Finally, early in 1993 the diagnosis was Ulcerative Colitis, and my doc said that we would need to remove the colon altogether and the rehab would be hard. But I was still only 22 years old, and this shit doesn’t really compute to a kid who races road bikes and likes to bomb down hills without touching the brakes, and constantly seeking the “oh my God I’m going to die” feeling forever ride. Even with all of my health issues, I was indestructible and I liked to test that theory every chance I got.

The surgery was rough, it was 10 hours + on the table, 4 days in ICU, 7 more days in the hospital and then I went home. At this point, everything inside was in place and I had a temporary colostomy bag while my intestines healed fom the surgery. They said I would only have the bag 2 or 3 months, but after the steroids, I wasn’t healing as fast, so the bag had to stay in place a little while longer since they had to go back in and redo the stitches were off the dissolving kind. After about 4 months I finally got rid of that damn bag. I hated the bag. If the bag was the solution, I quite likely would not have done it. They leak, they pop, the fall off. The adhesive irritates my skin (still does from other things – like the biliary drain I’ve had in for more than 3 years now.

After the bag was gone, I was almost immediately back on my bike and riding. I was in excellent shape going into the surgery, so recovery was quick, and I felt like a new main. No more urgency issues, no more abdominal pain, it was almost like being normal again. I was elated. The Doctor did tell me I had PSC at the time, and that I would likely need a liver transplant in around 10 years, but I was feeling good at this point and being 22, I didn’t really give it a second thought. So I went back to doing what I loved; biking. I immersed my self in that world. I wrenched at my LBS and rode with those guys any chance I got and did some epic rides. Spectacular trail rides up Mt. St. Helen’s, insane singletrack rides out at Brown’s Camp in the coast range, century after century on the road and then I discovered track racing. Oh, my God, I was in heaven. I was good too. Match sprinting is the best. I trained 3 nights a week and rode my bike more than I drove my car, and for a good number of years, I put more n\miles on my bike than I put on my car. I decided to go back to school too, things were great. It stayed that way for a long time. I met my wife, bought our first house, had a son, and moved out to rural PA to get a great git designing and building awesome websites and applications for an internationally known company that desperately need to be brought into the modern age of the web.

Then in 2005, it all started to unravel. While on a trip to visit my Dad, I had my first major cholangitis attack that hospitalized me for a week while they did some tests and ultimately my first ERCP. My doc informed,y I had PSC, and that I was going to need a transplant in the coming years. That was a huge blow. I mean I knew all of this on some level since my GI Doc told me this a decade ago, but now my time was up; it was happening. SO I returned home and immediately set up appointments with my Doc who referred me to UPMC in Pittsburgh where they did more tests, and now the game was really afoot. It didn’t take long before I was traveling to Pittsburgh two or three times a month, sometimes in an ambulance since my local hospital couldn’t do ERCPs. And to be honest, I’m not sure I would have trusted any of them to do one. After almost a year of being in the hospital nearly every other weekend and endless ERCPs they put me on the list. After being on the list just under a year, and having 3 false alarms where I had to travel the 3.4 hours to Pittsburgh, on January 4th, 2007 I was transplanted at 4 am. I spent 4 days in ICU, and another 7 or 8 days in the hospital, and then another 2 weeks in a hospice facility in Pittsburgh during which I was unable to see my children. That was probably the hardest part believe it or not, but that was the beginning of the best 7 years I can remember.

After the first transplant in 2007, I recovered quickly, but not without some setbacks. After getting home I came down with CMV and had to have a PIC line put in so I could self-administer the needed antibiotics in order to stave of the virus. It wasn’t so bad, and it made it super easy for me to squeeze the baseball size of juice into my body so I wouldn’t get too sick to stay home. That passed and never came back That was the biggest hurdle. After about 3 months, I was working full-time again, and after another couple of months I was back on my bike and riding harder and farther that I thought would be possible. After about a year I rode my first century, which mad eme feel great! Even if I was completely demolished by the end of the ride. This was the beginning of the best 7 years of my life to date.

My family and I moved back to Portland after a few more years as I just couldn’t take my job in PA anymore. The work was devoid of purpose, and the new leadership was incompetent to the point that I simply needed to leave. There was nowhere left for me to go with the company, and I wanted to get my boys back to their grandparents while the boys still worshiped them, and living 3,000 miles away from family was just too much to bear anymore. So we left. This was a great move for me financially, a big boost to my career, and just the best thing I could do for my family. Unfortunately,it also signified the next major health hurdle.

Shortly after coming home, I started to get fatigued more easily, and the more I worked out, the more I rode, the more tired I got. I didn’t get stronger, I got weaker and recovery from rides became laborious, and within a year I almost stopped riding altogether and turned to walking. I work right downtown in Portland, so walking around the city for me is very cathartic. I love being downtown early in the morning. It’s so peaceful. No one is here yet, there’s no sense of urgency, no honking horns, no mindless suits stalking the streets on their Blackberries, no pods of man-buns blabbing loudly so everyone can hear about their amazing techno-prowess within the blossoming PDX startup-up scene. Nothing. Just m,e, and the Crows. But eventually, this became a chore, and this was the beginning of the fatigue and it’s soul-crushing hold it would gain over me over the next months.

I was diagnosed with Lymphoma in the fall of 2013 I think, which happily turned out to be nothing after a few stints of chemo, it resolved itself, but yet there was no change to my fatigue, I just had less armpit hair. So after a few stints of cholangitis attacks, it started to become clear that the PSC back. Though, my current doc was reluctant to diagnose that since she had never seen a case during her career as a doctor, so I switched docs. This was the best decision that I made, mostly at my wife’s persistence, but my new Doc is great. He’s young, open-minded and down-to-earth. Unfortunately, the diagnosis was like we spoke of he who shall not be named, and Voldemort was now free to unleash unholy hell on my body, and that’s exactly what happened. My liver had now officially decided to wage all-out war on my system and was actively trying to kill me. This went on, getting worse every month, until August of 2016.

By now, I had been in and out of the hospital so many times I can’t even remember. I had pneumonia brain at this point too, so my cognitive abilities were impaired, and my memory was playing tricks on me. During 2016 I had been hospitalized nearly every month and had to have 3 full blood transfusions due to bleeding in my through and stomach. I quite nearly dies once, and by the beginning of August, that was pretty much looking like that was to be the outcome. By now I had made my peace. I hadn’t worked for a year now, and most of the time I left the house maybe 3 or 4 times a week other than to takes short walks around the neighborhood. I was hooked on Pokemon Go at the time so that at least was a good distraction for the walks

August 15, 2016, my coordinator called while I was out flying my quadcopter with my son and my Dad who was in town for a visit and said they had a liver, and that I needed to come in. Somehow I knew this wasn’t a false alarm, so I packed some things and off we went. My entire family was at my house for a Sunday dinner, so the timing was good, especially since my Dad was still there. This was loose of an operation at 12 1/2 hours long.

The recovery from this one has been a real bitch. It has not resembled at all what I signed up. All of the scar tissue is reeking havoc with all of my digestion tract, plus all of the banding to stop the bleeding from the multiple ascites incidents has left parts of my digestion system functioning at less than optimal parameters, so I still have a lot of the pre-transplant symptoms with no clear path to remedy them. The liver is working great, which is great, it’s just everything else down there that’s all dicked up right now, and I’m not certain (or optimistic really) that there’s a lot that can be done to fix it. But so it goes….

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.


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.

Nearing 4 months now….

It’s been almost four months now since my second transplant and the new liver is functioning great, my numbers are better than they have ever been, but things are still hard and I’m continually wrestling with fatigue. Being tired sucks, it messes with everything, work, life, sleep and my mind. I’m sleeping better than I was a month ago, but I still wake up 3 times es a night or more, mostly with night sweats. I tweeked my back again and that makes it even worse and makes everything harder as everything literally hurts when I do it.

I have a lot to be helpful no to look forward to though. The PSC is at least for now gone, my weight is more stable and up from my low of 148 lbs, and well, I’m no longer dying. W00t! Things are going pretty damned well actually, even though I don’t really feel that way. I’m sure that a year from now this will all be a distant memory, but right now that seems a long ways away.

On a more promising note, there was another Vancomycin study that ended with more encouraging results, and that in can be found over here at the National Library of Medicine.

Also, look to the Journal of Hepatology for more information than you can shake a stick at. 

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