Greetings, all. Since I'm new here, I figured I'd introduce myself. I'm male, 45, and live in Albuquerque, NM, USA. I work as a systems engineer, which in my case involves lots of on-site electromechanical troubleshooting of factory automation equipment and high-speed packaging machinery. Much of my current work is in a factory that makes desiccant canisters and packets for the pharmaceutical industry - the annoying little plastic cylinders or paper packets that you find in pill bottles, that invariably say "Do Not Eat" on them. It's likely that most people here have at some point handled products that came from machines that I work on. :-)
When I'm not working, I'm with my family. I have two sons and a stepdaughter, all either "tweens" or early teenagers. I got remarried about a year and a half ago, so my second marriage is still pretty new, but my wife is wonderfully supportive of me with my various medical problems.
I'm also a hot air balloon pilot. I fly in many of the local balloon festivals, including the Albuquerque International Balloon Fiesta, which is one of the largest (if not the largest) balloon events in the world. Sharing the sky with 550 other balloons is really a treat.
I was diagnosed with UC in 1988, and PSC in 2001. However, my elevated liver enzymes go back to at least 1990, so I'm pretty sure that I've had PSC since long before the diagnosis. However, by 2001 my history of elevated enzymes was long enough that my GI did an ERCP and came up with the diagnosis. I was entirely asymptomatic (apart from elevated liver enzymes) until the spring of 2011, when I started having problems with itching and fatigue. I'd have a few days of symptoms, then it would clear up for weeks or months, but I had several bouts until November 2012. I was visiting family in California for the Thanksgiving holiday, and very suddenly developed a complete biliary obstruction. Fatigue, nausea, and itching were suddenly horrible, and made the rest of the trip pretty miserable.
In December of 2012, my GI did an ERCP and stented the left and right bile ducts. Unfortunately my ducts don't follow the usual routing, and he was working largely blind because of the blockage, so one of the stents ended up puncturing the bile duct. I woke up from the anesthesia feeling OK (other than nausea, which is my routine reaction to anesthesia), but as they were getting ready to discharge me, I was suddenly in the worst pain I could imagine. In a matter of seconds I went from getting ready to go home to lying on the gurney screaming. They pumped me full of morphine, which did nothing for the pain, and I spent the next three hours in the worst agony I've ever experienced, until enough of the morphine had cleared my system that they could give me something else that finally knocked down the pain. I spent the night in the hospital and was discharged the following afternoon, but within two hours of getting home I started having increasing RUQ pain and started running a fever, so I went back to the ER and was admitted again. That was when the GI realized what had happened, and the following day did another ERCP to remove the offending stent.
I continued to have milder symptoms on and off for the next year and a half, until mid-2014 when a blocked duct led to pancreatitis. It was a bit of an awkward time - I had just gotten married, and on July 1 I was going to get on her insurance so I could stop paying for my COBRA insurance. On June 29 I ended up in the ER with severe pain and other symptoms, and they found that my pancreas was inflamed to the point that other organs (my kidneys in particular) were shutting down. I spent five days in the hospital, which got into the time period when I was supposed to be on a different insurance plan, and thus in a different hospital. Much confusion ensued, which took months to unwind, but the pancreatitis cleared up uneventfully once they took out my gallbladder.
As part of the insurance change, I had to switch GIs, from the one who'd treated me since 1988 to a new one who I'm still working to break in. I've had ongoing problems with smaller biliary blockages (not like the total blockage in 2012, but enough to kick up the itching and fatigue), and it's sometimes hard to get appointments in a timely manner. In September of this year I called for an appointment about increasing RUQ pain, and the office staff wouldn't schedule me until November. In mid-October I ended up hospitalized for five days total with ascending cholangitis secondary to the biliary obstruction that was causing the RUQ pain, and I took the opportunity to work on my new GI to get me in on some sort of priority schedule - waiting six weeks for an appointment when I have PSC symptoms is simply unacceptable. I think we may have the problem worked out; I suspect that he realizes that my recent hospitalization was directly related to his staff's unwillingness to even discuss with him whether I should be scheduled sooner than their "next available" appointment. We shall see, though. At least now I have a good relationship with both of his nurses, so I can get past the front desk scheduling people to someone who understands the need for prompt medical care.
Meanwhile, I'm continuing to have RUQ pain and PSC symptoms. He did a balloon dilation during the ERCP last month, but when I saw him last week he said that we may need to do another ERCP and put in stents. I worry about that with the increased risk of ascending cholangitis, but the fatigue I've been having is making it hard to get my job done and do things with my family, so I suppose I'll take the risk for the chance to feel better for a few months.