What does the future hold ?
When I first found out I had PSC, there was no internet or smart-phones for information, so I had to go to local libraries to find out more (yes, I am practically a dinosaur, I know).
The sobering reality for me at the time was this : Depending on your level of severity and management, the lifespan of your liver post-diagnoses averages out to something like 11 years before you'll require a transplant. Sadly for many of us with PSC, that still holds true.
As medical technologies have improved over the years, and more studies into our condition are undertaken, the prognosis for patients like us is increasingly looking better, and will only get better as docs all over the world share their knowledge and expertise.
According to a study between 1984-1997 of 127 transplant recipients with PSC : "Liver transplantation provides excellent patient and graft survival rates for patients affected with PSC ... ". You can see more of that report here.
Rewind 20 years and I recall my original GP in 1996 telling me “25 years ago, people just died eventually from it”.
Put simply, I refused to go down without a fight.
So I armed myself with an arsenal of information, changed some lifestyle habits and nowadays I treat PSC as an annoying attention-seeking disease that's simply not worthy of any more of my time/energy than it already steals from me.
By no means does this make me the poster-boy for PSC management. I've learned through lots of trial and error what works for me. Despite the early doom and gloom, here I sit some 19 years later, after having 6x ERCP's and 1x stent inserted, countless blood-tests, CT-scans, ultrasounds, X-rays, etc, etc .... all designed to help me 'buy time to live a normal life' ... and whether by dumb luck or good management, luckily I'm still NOT on any waiting lists for a transplant.
The sobering reality for me at the time was this : Depending on your level of severity and management, the lifespan of your liver post-diagnoses averages out to something like 11 years before you'll require a transplant. Sadly for many of us with PSC, that still holds true.
As medical technologies have improved over the years, and more studies into our condition are undertaken, the prognosis for patients like us is increasingly looking better, and will only get better as docs all over the world share their knowledge and expertise.
According to a study between 1984-1997 of 127 transplant recipients with PSC : "Liver transplantation provides excellent patient and graft survival rates for patients affected with PSC ... ". You can see more of that report here.
Rewind 20 years and I recall my original GP in 1996 telling me “25 years ago, people just died eventually from it”.
Put simply, I refused to go down without a fight.
So I armed myself with an arsenal of information, changed some lifestyle habits and nowadays I treat PSC as an annoying attention-seeking disease that's simply not worthy of any more of my time/energy than it already steals from me.
By no means does this make me the poster-boy for PSC management. I've learned through lots of trial and error what works for me. Despite the early doom and gloom, here I sit some 19 years later, after having 6x ERCP's and 1x stent inserted, countless blood-tests, CT-scans, ultrasounds, X-rays, etc, etc .... all designed to help me 'buy time to live a normal life' ... and whether by dumb luck or good management, luckily I'm still NOT on any waiting lists for a transplant.