1. Liver Transplant For Patients with PSC
Jennifer Guy, MD, MAS
Director, Liver Cancer Program
Transplant Hepatologist
California Pacific Medical Center

2. Liver Transplant Questions
Who needs a liver transplant for PSC?
What is a liver transplant?
How do you get a liver transplant?
What is life like after liver transplant?
Healing is an art form; there is the science and the art.

3. Why do patients with PSC need a liver transplant?
Recurrent and Severe Episodes of Cholangitis
= Infections in Damaged Bile Ducts
Progressive Scarring Causing Cirrhosis
That is Symptomatic
Any liver disease can cause inflammation and injury – we’ll go through what are some of the most common
If the liver disease or injury is chronic or persistent it can cause scarring and eventually can cause scarring throughout the entire liver - cirrhosis
Cholangiocarcinoma
Abnormal growth of cancerous cells
in the bile duct

4. How to determine severity of cirrhosis?
Symptom
Lab
Swelling
Creatinine, sodium
(albumin)
Bleeding
INR
(platelets)
Jaundice
Bilirubin
Confusion
(ammonia)

5. MELDNa Score Predicts Death in Patients with Cirrhosis
MELD = Model for End Stage Liver Disease
MELDNa = MELD Sodium Score (NA)
Equation that Includes INR, Bilirubin, Sodium and Creatinine
Low Score Good
High Score Bad
Data from Chronic Liver Disease Surveillance Network from to get a population based assessment of the burden of chronic liver diseaes.
Wiesner, et al

6. UNOS MELDNa Score Calculator
Data from Chronic Liver Disease Surveillance Network from to get a population based assessment of the burden of chronic liver diseaes. .

7. Who Needs a Transplant? Not everyone with PSC needs a transplant
5% of all transplants in the US are for PSC
50-75% of patients with PSC on the wait list have cirrhosis
40% of patients with PSC on wait list have had a prior episode of cholangitis
30% of patients on the wait list will have another episode of cholangitis
Khungar, V et al. 2016
Pena Polanco, et al 2017

8. Liver Transplant Questions
Who needs a liver transplant for PSC?
What is a liver transplant?
How do you get a liver transplant?
What is life like after liver transplant?
Healing is an art form; there is the science and the art.

9. Deceased Donor Liver Transplant
Data from Chronic Liver Disease Surveillance Network from to get a population based assessment of the burden of chronic liver diseaes.
Bell B et al AJG 2008; 103:

10. Living Donor Liver Transplant
Data from Chronic Liver Disease Surveillance Network from to get a population based assessment of the burden of chronic liver diseaes.
PSC Patients are more likely than patients with other causes of liver disease to undergo LDLT
Bell B et al 2008
Goldberg, D et al 2011

11. Liver Transplant Questions
Who needs a liver transplant for PSC?
What is a liver transplant?
How do you get a liver transplant?
What is life like after liver transplant?
Healing is an art form; there is the science and the art.

12. Evaluation: Meeting the Team
Liver Doctor
(Hepatologist)
staff
scheduler
Liver Surgeon
NPs/PA
The Patient and caregivers!
Nurse
Social worker
cardiology, psychiatry
Phlebotomists/
Radiologiy techs
Financial Coordinator
Support Group Members
You LEARN about liver transplant , MELD allocation, logistics, the surgery, the medications
We LEARN about your liver, medical conditions, who you and your caregivers are

13. Liver Transplant Evaluation
Your goals:
Do I understand why I need a transplant?
What are the benefits and risks of transplant?
How can I expect to feel physically before and after transplant?
What should I expect mentally before and after transplant?
What resources are available to me?
Who do I call if I don’t feel well or have a question?

14. Liver Transplant Evaluation
Transplant committee goals:
Do you meet medical criteria for a transplant?
Is there anything medically or socially that makes transplant too high risk for you?
Justice
Utility

15. How do I get a liver transplant?
Step 1: Referred and Evaluated for Transplant
Step 2: Approved for Being Placed on the Wait List at the
Transplant Center (s)
Step 3: Priority on the Wait List is determined by how
sick each person is, as measured by the MELDNa Score
Step 4: You are matched with an organ offer when your
MELDNa Score is at the top of the wait list

16. MELDNa Score Predicts Death in Patients with Cirrhosis
MELD = Model for End Stage Liver Disease
MELDNa = MELD Sodium Score (NA)
Equation that Includes INR, Bilirubin, Sodium and Creatinine
Low Score Good
High Score Bad
Data from Chronic Liver Disease Surveillance Network from to get a population based assessment of the burden of chronic liver diseaes.
Wiesner, et al

17. How to account for recurrent cholangitis ?
Your transplant team can petition to the United Network of Organ Sharing (UNOS) regional review board for extra points, called an Exception Score
Guidelines for awarding an Exception Score for recurrent cholangitis include evidence of multiple, severe infections
If meets criteria, the MELDNa score that is requested is granted and requires re-certification every three months
Exception criteria also apply to certain cases of cholangiocarcinoma, where transplant is done at specific centers

18. MELD at Transplant Varies by Region
MELD Scores at Transplant Also Vary by Blood Type
High
MELD
Score
Data from Chronic Liver Disease Surveillance Network from to get a population based assessment of the burden of chronic liver diseaes.
Low MELD
Score
Source: Politico 6/21/15

19. Liver Transplant Questions
Who needs a liver transplant for PSC?
What is a liver transplant?
How do you get a liver transplant?
What is life like after transplant?
Healing is an art form; there is the science and the art.

20. Survival after Transplant for PSC is Excellent
PSC/PBC
Data from Chronic Liver Disease Surveillance Network from to get a population based assessment of the burden of chronic liver diseaes.
Data Source: UNOS thru 2004 .
Liver Transplantation 2004

21. Survival after Transplant for PSC is Excellent
Summary of small letters and numbers: 85% 5 year survival
Data from Chronic Liver Disease Surveillance Network from to get a population based assessment of the burden of chronic liver diseaes. .
Pena Polanco, et al. 2017

22. Considerations after liver transplant
Liver transplant is a “chronic cure”
Medications to prevent rejection lifelong
Medications to prevent infection in the early months post transplant
Potential for side effects from medications
The risk of recurrent PSC is up to 22% by 5 years
Surgical risks are low but surgical strictures can occur which require ERCP and stenting
Clinical course of IBD is variable post transplant
Adjustment to new phase -- living without PSC but living with a transplant

23. Working as a Team
Patients and caregivers should feel empowered to advocate
Communicate goals and set expectations
Be open to hearing the good and the bad
Take notes
Make a list of questions to review at your appointments
Let your team know if your needs are not being met
Patients should be aware that doctors/teams do not always have records/latest labs/necessary information at all times
Get copies of results and information if you can
Back up plans should be discussed
If I get sick, who should I call?
If plan A doesn’t work, what is plan B?
If you want straight talk, ask for it
Know what resources are available and use them
- Nutrition, social work, PSC Partners, support groups, mindfulness
classes

24. Thank you!