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….