How is my life going to change as PSC progresses?
As PSC advances, you can expect more of everything – symptoms, medical appointments, bloodwork, and food restrictions. The goal is to stay as healthy as possible for as long as possible and to monitor any changes in your liver.
If the scarring in your liver develops to a stage of cirrhosis, you can also expect discussions about the potential need for a liver transplant and what is required to get on the list to receive a transplant. Although the prospect of transplant surgery can sound frightening, many Canadians have had liver transplants and are living fulfilling lives.
Increase in health monitoring
As your liver becomes more damaged, increased monitoring helps your medical team identify changes early as the risk of liver failure increases.
A family member, friend, or caregiver can be a big help by joining you at medical appointments and keeping track of your PSC progression and medication. If you are feeling fatigued or experiencing brain fog, it can be hard to stay on top of things.
Understand more about the types of medical appointments you might have and why they are needed to reach out for support.
Worsening symptoms and food restrictions
As PSC progresses, you may feel as though you have no control over the disease. Fortunately, there are some medications or medical procedures that might help with some symptoms, such as itching, brain fog, and fluid retention. Social isolation can be an issue as you experience increased fatigue and feeling unwell. There are many ways to connect with others online with first-hand knowledge of your situation.
If you have cirrhosis, your medical team may provide direction on dietary and lifestyle changes. Changes can include eliminating alcohol, reducing your sodium intake, taking vitamin and mineral supplements, and ensuring sufficient protein intake. It is always important to discuss any dietary or lifestyle changes with your doctor before implementing them.
Exercise is critical. Even if you can only walk ten to twenty minutes a day, do your best to make time to exercise. If you work out regularly you might need to shift your workouts to exercises appropriate to your changing condition.
Get tips for managing symptoms and making healthy choices.
What happens when I develop cirrhosis?
While there are no clear stages for PSC itself, there are stages of scarring of the liver due to PSC. Fibrosis, scar tissue formation in the liver, is typically estimated based on repeated transient elastography (TE, Fibroscan) measurements or through a liver biopsy and is categorized into 4 stages. Stage 4, cirrhosis is divided into 2 stages, compensated cirrhosis and decompensated cirrhosis.
When you reach the stage of cirrhosis, your doctor (most likely your hepatologist) may recommend that it is time to consider a liver transplant.
For more details about the stages of fibrosis and cirrhosis.
Connect with others living with PSC
- Follow PSC Partners support groups on Facebook – open and closed .
- Join peer-to-peer virtual ZoomRoom support gatherings or attend an event to network with other people diagnosed with PSC
- Get a first-person perspective from Canadians living with PSC .
- Find a mentor
- Join the Patient Registry to stay informed about opportunities to participate in research studies and clinical trials.
Key facts about PSC
- It is possible to live many years with compensated cirrhosis.
- For these experiencing fatigue, adopting healthy habits like regular physical activity and better sleep routines can help. This approach has shown positive effects in managing fatigue associated with various health conditions.
- People with PSC have increased risk for osteoporosis and regular bone density monitoring is recommended.
- Liver transplant centers are located across Canada – Vancouver, Edmonton, Toronto, London, Montreal, and Halifax.
- The survival rates for those receiving livers from either deceased or living donors are similarly high.
Related Resources
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2023 Publication Alert: Living donor liver transplantation can address disparities in transplant access for patients with primary sclerosing cholangitis Published in August 2023, this study, partially funded by PSC Partners Seeking...
PSC Alert Sheet Acute Cholangitis – Canadian Version Left untreated, acute cholangitis in PSC can cause serious complications, such as sepsis, jaundice and liver decompensation. This PSC Alert Sheet is...
