Every PSCer experiences different symptoms which can progress at different rates, some rapidly, some remaining asymptomatic for years and years. Some of us need never be considered for a liver transplant, while others do.
Professor David Adams once described having a transplant with PSC was a ‘new lease of life’. We tend to focus on the transplant itself, but what is life really like after a liver transplant? What does it feel like to be assessed and put on the Waiting List for a liver? What happens when you get 'The Call'?
Many thanks to the PSCers who have kindly shared their experiences of life before, during and after transplant, and life with PSC generally, including Yvonne's Liver Transplant Journey (an incredible video diary from before the call to being released from hospital after transplant) and Maxine's blog, documenting her 15 months on the liver transplant waiting list and details about her transplant and road to recovery. They can be found in PSC Stories.
PSC Support is an active contributor to the Liver Patients' Transplant Consortium, the partnership of liver charities and support groups helping shape transplant policy.
Your consultant will monitor your symptoms and liver function, and, when he/she deems necessary, will refer you to a liver transplant unit to be assessed for your suitability for liver transplant. If you are deemed suitable, you will be added to the Transplant Waiting List for a transplant and receive regular monitoring. At this stage you will be given plenty of information and support. PSC is so variable, that some PSCers’ conditions have improved so much they have actually been removed from the Transplant Waiting List! Other PSC patients’ conditions deteriorate rapidly, hence the value of regular monitoring once on ‘the List’. The transplant doctors are aware of the variability and unpredictability of PSC and will look after you. Special thanks to Practice Nursing for allowing us to publish their article about Transplant Assessment on this website.