It's been almost a year since I have posted an update on my illness (see part 1 and part 2), and the main reason for the long update interval is that there has been a lot of confusion, especially around the beginning of the year, as to a solid diagnosis.
Other than the surgery earlier this year to remove a loosely related infection, and another ERCP shortly before that, I have thankfully managed to stay out of hospital this year.
In the last 'update', I said that I had probably been misdiagnosed in terms of originally being thought to have primary sclerosing cholangitis (PSC). Unfortunately, around the end of last year I had stopped responding well to the steroids that we thought that was keeping my liver function indicators down, and despite attempting to ramp up the doses, it had no beneficial effect.
I was slowly weaned off the steroids (as is the standard practise), and my surgery coincided with the end of this process, as of course the surgeon wasn't too enthusiastic to cut me open whilst on was on strong immunosuppressant steroids.
Over the course of the end of last year and the first half of this year, it does appear that the original diagnosis of PSC is probably correct: the second ERCP earlier this year showed the constriction in my bile duct had spread. However the many gastro and liver specialists I have seen in the past year have all stated that I am not a 'normal' type of PSC patient (and i'm not totally sure whether this is a good or bad thing!).
There is some good news: I have started on some non-steroidal medication that has succeeded in keeping my liver function indicators mostly within normal range, which hasn't been the case since before the illness started.
So at the moment and into the future it's the normal PSC type of wait-and-see treatment: as long as my liver is functioning well (which it is at the moment) nothing drastic needs to be done until things start to decline at which time i'll probably need a liver transplant. The doctors tell us there's no way accurate way of predicting it (and especially so in my case), so it could be five, ten, or twenty years, or maybe even never (hopefully!). However, there is also an increased chance of developing bile-duct cancer, and if that happens a transplant is off the table because that type of cancer makes transplantation ineffective.
As always, your thoughts and prayers are still very much appreciated :).
1 thought on “Illness Update Part 3”
Lucas I hope and pray everything goes well for you and you get better soon and never have to have a transplant