Back when I created this page, I was thinking there would be more news to report, but I am glad there hasn’t been. That being said, I will try to update more - Famous last words
To recap, in 1999, I was diagnosed with PSC after abnormal liver function tests from a life insurance physical indicated a problem. PSC’s main symptoms are fatigue and itching which have affected me somewhat over the years. Typically people will need to get a liver transplant 10-15 years from time of diagnosis. The first time I had problems started in 2005 where I became jaundiced and had a lot of pain in the abdomen. I was hospitalized at Johns Hopkins for a week. They did an ERCP procedure (endoscopy) to clear out blockages and stones from the bile ducts. This is called a “cholangitis attack” and is common in later stages of PSC.
When I was in Johns Hopkins in then, they said it appeared that things had worsened and that I would need a transplant within 5 years. I was put through the extensive transplant evaluation process and put on the transplant list in 2006. Since 2006 I have had regular checkups and blood work but I have remained stable and generally healthy. They measure how close to a transplant you are by a scoring system known as MELD. “Model for End Stage Liver Disease” The higher the score on a 6-40 scale, the sicker you are and the sooner you will get a transplant. Other than a score of 8 when I was in the hospital, my score has been at 6 for the last few years.
I do take medications, mainly Urso, a bile acid. There were a few studies over the last few years that tried to show a higher dose of Urso was more beneficial to PSC patients, but Unfortunately the study results have not proven that. I was on the higher dosage also, but not participating in the studies. Day to day I feel pretty normal. I avoid alcohol and eat reasonably heathy. I do have pains that come and go in my abdomen. Sometimes they are sharp stabbing pains that alarm people I am with. Other times they are a dull aching or heartburn feeling. So far these have only been short term things, but every time it happens I wonder if it will end in a hospital stay. The day before I went in the hospital in 2005 I felt very normal and did a long bike ride so sometimes there is little warning.
