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Feb 08 2009

Symptoms Start to Escalate

December 2008 through January 2009 proved to be very difficult and brought some new additions to my existing symptom portfolio which already includes itching and fatigue. I’ve now turned a nice shade of yellow — not exactly the “canary” variety, but more of a tasteful light pastel that’s most noticeable in what used to be the whites of my eyes. Only my vanity suffers on this one, but the yellowness is typically joined by nausea which has all but eliminated my appetite. As a result, I lost even a few more pounds over the holidays.

The other thing I’m now dealing with is insomnia. I had already experienced occasional bouts of something like this, but in retrospect that wasn’t really insomnia, it was my sleep being temporarily disrupted by fierce itching. My insomnia seems altogether different in that it is not always caused by itching and is far more persistent. I’ll go to sleep by 11pm or midnight, and within an hour-and-a-half, I’m wide awake.

It may be important at this point to explain that I love sleep. I have historically been able to sustain myself on about 5-6 hours of sleep each night, so I’ve never been the type that needs 8-10 hours to feel rested, but I still LOVE sleep. I’m also a firm believer in naps, although I rarely get the opportunity to indulge in them. So sincere is my belief in naps that I’d like to see a sanctioned 20-minute Power Nap each afternoon during the work day; I’m convinced it would result in another 1-2 hours of productive time (by the way, I’ve never proposed this at work for fear that it would be interpreted as laziness, but I support the concept 100%).

Back to the insomnia, and now this self-professed sleep lover is facing nights of about 1.5 – 2.5 hours of sleep. I can do this for a few nights. I can even go a week. But shortly thereafter I have found that my sanity begins to erode. During my first prolonged struggles with insomnia, I made a concerted effort to stay as positive as I could and saw the additional awake hours as productive time. I’d come downstairs each morning at about 2am and get caught up on work, read the news online, do some miscellaneous surfing, watch a movie, or read a book. Prior to this, I had always thought insomnia meant that you were awake because you weren’t sleepy. The truth is far more insidious — my body is completely exhausted and wants desperately to go to sleep, but I just can’t make it happen. So I shuffle through the following day, zombified, nauseated and itching like I’m on fire.

During this time, I felt like I had entered a new chapter in the progression of my PSC, and one that I didn’t care for. My doctors prescribed something for the nausea, moved me from cholestyramine to rifampin for the itching, and put me on Ambien for the sleep. Unfortunately, nothing really touched the nausea, and the Ambien would knock me out within 15 minutes, but by 2am I was up again. The latter was corrected by switching me to Ambien-CR which has proven very effective, although I intensely dislike needing to take something every night just to sleep.

By January 2009, I was still feeling pretty miserable and my hepatologist was sure I needed an ERCP to open the common bile duct back open. I’ve never looked forward to an ERCP as much as this one, so you can imagine my disappointment upon waking from the procedure to learn that they were unable to stent me since the common bile duct, and the ducts that branch immediately from it were wide open. A few weeks later I had an MRI to determine if there was a mass causing a blockage somewhere within my liver. I already have a golfball-sized mass that was discovered there two years ago, so I wondered if it had grown. The MRI determined that the mass had not grown, and that my deteriorating condition was not the result of a dominant stricture, but rather diffuse strictures all throughout the microscopic ducts that cannot be treated endoscopically.

This was pretty unwelcome news since it now puts me in a stage of my disease that has no real treatment option other than managing the symptoms. Fortunately, within a week or two of the ERCP, my symptoms started to subside somewhat. The nausea comes and goes, as does the itching, so it’s obvious to me that I was having some sort of acute attack in December 2008 and January 2009. Ultimately my hepatologist confirmed that this had all likely been a bout of cholangitis, and that I could expect to experience similar events more frequently in my future.

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