PSC causes damage to the bile ducts, and damage to the liver. For some people, a liver transplant is considered to treat the effects of the bile duct damage or liver damage. In fact, 10%–15% of all liver transplants in Europe are now for PSC 7. People with PSC have an excellent outcome after liver transplant compared to those with other liver diseases 2.
Professor David Adams describes having a transplant with PSC as giving a ‘new lease of life’.
Liver transplant relies on organ donation. PSC Support is working hard to raise awareness of the importance of organ donation and having a conversation with family and friends about it.
Watch the footage of Dr Thorburn speaking about liver transplant - a UK perspective including indications and outcomes at the PSC Support Information Day at the Royal Free, London:
Will I need a transplant?
Not everyone with PSC will need a liver transplant.
A large international study of over 7,000 people with PSC found that less than half did not need a transplant 7. Everyone with PSC experiences the disease differently; no single person has the same symptoms, biliary damage, associated IBD or rate of progression 78. PSC can advance at different rates, rapidly in some people, and slower in others 7 so it is very difficult to say who will need a transplant.
However, in general, one of the following situations could indicate it is time to assess your suitability for liver transplant 80:
- a very badly damaged liver; or
- constant and repeated, uncontrolled bile duct infections (recurrent cholangitis); or
- persistent itch (intractable pruritus) that cannot be controlled with medicines.
In the UK, fatigue and bile duct cancer are not accepted indications for liver transplant but the issue of bile duct cancer is being looked at by Professor Nigel Heaton in conjunction with the NHSBT Liver Advisory Group.
As part of your routine care, your PSC doctor will monitor your symptoms and liver function, and if the disease has progressed, will refer you to a liver transplant unit to be assessed for your suitability for liver transplant. This is called a liver transplant assessment.
In the UK, doctors use scoring systems to indicate when a patient is likely to need referral to a liver transplantation unit. The score referred to is UKELD. In countries outside the UK, you will see similar approaches used but the scoring system is different. One such scoring system is the MELD score. Nonetheless, the principle is the same: both inform doctors when the degree of liver failure merits consideration for liver transplantation. Once a patient has reached a UKELD greater than 49, discussions should already be taking place about the possibility of liver transplantation.
Where do people have liver transplants?
What is a liver transplant assessment?
The liver transplant assessment is a medical, psychological and social assessment of your condition and needs. It will look at your liver, and your health generally, to make sure you are strong enough to have the transplant, that all other medical options have been considered, and to make sure that a liver transplant is right for you at that time.
What tests will I have to have as part of the transplant assessment?
The assessment usually includes:
- blood tests
- a chest X-ray
- an ultrasound scan of the abdomen
- an electrocardiogram (ECG) - check your heart's rhythm and electrical activity
- echocardiogram – a scan of your heart and blood vessels within it
- spirometry – measures your lung capacity
- detailed liver imaging and perhaps an ERCP
- arterial blood gases – measures the PH (acidity) of your blood, as well as the oxygen and carbon dioxide levels.
- upper and lower gastrointestinal endoscopy may be performed.
- discussions with members of the transplant team.
The assessment is also a chance for you to find out all you need to know about having a liver transplant, and how you and your family feel about it. You may even get the chance to talk to others going through the same process and those who have already had a liver transplant. Each liver transplant unit organises their assessment differently. Some run the assessment over two to three days in outpatients, others will ask you to stay in as an inpatient for the assessment.
It’s a good idea to keep notes of the tests you’ve had and any questions that come to you during the assessment.
It’s important to note that a multidisciplinary team (MDT), not a single person on their own, assesses your results and makes the decision. The decision could be:
- you are suitable to be added to the waiting list for a liver transplant.
- a liver transplant might be necessary for you in the future, but the risks outweigh the potential benefits at the time of your assessment.
- a liver transplant is not a suitable option for you. This might be the case if you have other diseases such as heart or lung disease that make you more unlikely to survive the operation.
Because of the unpredictable nature of the condition, most transplant centres try to list PSC patients early for transplant. Once people start getting complications related to PSC like recurrent cholangitis, ascites or persistent jaundice, then transplant may be considered, and you should be under the care of a doctor experienced with PSC and transplant.
More information about liver transplant assessment can be found in this Practice Nursing Transplant Assessment article.