Royal Prince Alfred Hospital

Liver transplantation —
Information for recipients
and families
Contents

Introduction 5

Members of the Liver Transplant Team at Royal Prince Alfred Hospital 6

Section 1: Assessment 7

Section 2: Information you might need 9

Section 3: Waiting for the transplant 12

Section 4: The right donor for you 14

Section 5: The transplant surgery 15

Section 6: After surgery 18

Section 7: The immune system and rejection 21

Section 8: Infection 22

Section 9: Recurrence of original disease 23

Section 10: Other post-transplant problems 24

Section 11: Nutrition 25

Section 12: Medicines used in transplantation 27

Section 13: Life after discharge 33

Section 14: Travel 36

Section 15: Vaccinations 37

Appendix A: Glossary 38

Appendix B: Consent for a liver transplant operation 40

Appendix C: Transplantation Research at Royal Prince Alfred Hospital 41

Liver transplantation – Information for recipients and their families 3

 The general
goals of liver
transplantation
are to prolong life
and improve the
quality of life

4 Liver transplantation – Information for recipients and their families

Introduction

This booklet has been designed to give you the information you and
your family need to help you understand what is involved in liver
transplantation. Various members of the Transplant Team will discuss
this information with you, and you are encouraged to ask questions
or talk about any anxieties concerning any of this information. Our aim
is to inform you about liver transplantation, so that you can make decisions
about your treatment based on a good knowledge of the procedures,
benefits and risks of liver transplantation.

Royal Prince Alfred Hospital (RPA) has a long history as pioneers in

transplant services. In 1986 RPA established the Australian National Liver
Transplant Unit (ANLTU). Since then, ANLTU has combined with The
Children’s Hospital in Westmead (CHW) and have performed more than
2,000 liver transplants. The liver transplant process continues to evolve
and improve, demonstrating excellent survival rates with over 90% one
year patient survival rates.

The goal of liver transplant is to prolong a patient’s life and improve quality
of life, while optimizing the use of available liver donors. Most people who
need a liver transplant suffer from long term disease (cirrhosis) that is
advanced and irreversible. Usually the disease has progressed over months
or years before symptoms occur. Not everyone with cirrhosis needs
a transplant and many people can live active lives with mild forms
of liver disease. Our team assess every patients needs to determine
if a transplant is the appropriate treatment.

Liver transplantation – Information for recipients and their families 5

 Members of the Liver Transplant Team at RPA

Physicians:
Prof Geoff McCaughan, A/Prof David Koorey, A/Prof Simone Strasser,
A/Prof David Bowen, Dr Avik Majumdar, Dr Ken Liu, Dr Anastasia Volovets

Surgeons:
Dr Michael Crawford, Dr David Joseph, Prof Henry Pleass,
A/Prof Charbel Sandroussi, A/Prof Jerome Laurence, Dr David Yeo,
A/Prof Carlo Pulitano

Anesthetists:
Dr Andrew Watts, Dr Michael Paleologos, Dr Mark Porter,
Dr Gerald Wong, Dr Veronica Payne, Dr Ryan Downey,
Dr Jonathon Byrne, Dr Jackie Robson

Drug and Alcohol Specialist:

Professor Paul Haber, Dr Anastasia Volovets

Psychiatrist:
Dr Robert Gribble - 9515 6111 and page #80135

Liver Transplant Registrar:

M-F 8am - 5pm. 9515 6111 - ask for the Liver Transplant Fellow (Medical)

Gastroenterology Registrar:
After hours/weekends. 9515 6111 - ask for the Gastro Registrar on call

Transplant Coordinators:
Claire West - 9515 7274, [email protected]
Susan Virtue - 9515 8226, [email protected]

Clinical Nurse Consultants and After Hours Transplant Coordinators:

Fiona Burrell - 9515 7263 [email protected]
Catherine Brannigan - 9515 7801, [email protected]
Eamonn Browne - 9515 6408, [email protected]
Margaret Fitzgerald - 9515 6228, [email protected]

Dietitians:
Dr Helen Vidot and Dr Joanne Heyman - 9515 8053

Liver Health Counsellor:

Dr Cathy Heyes – 0459 869 433,
[email protected]

Pharmacists:
Ceridwen Jones 9515 6111, page #80914 and afternoon pharmacist #80702

Social Worker: 9515 6111, ask for the Liver Transplant Social Worker, page #80029

Nursing Unit Manager 9E Ward: 9515 7657

Clinic appointments: 9515 0056, Fax 9515 8242

[email protected]

RPA Switchboard:
9515 6111 – please ring this number for the paging service

6 Liver transplantation – Information for recipients and their families

Section 1: Assessment

Many people live for years unaware that their liver is damaged and will not require
transplantation. For those with severe or advanced liver diseases liver transplantation
may be an option in the following circumstances:

• irreversible, progressive liver disease

• the liver disease fails to respond to all other forms of medical and surgical
treatment
• absence of other major diseases
• ability to understand the nature and risks of liver transplantation.
The hepatologist will assess the severity of your disease and can start the process for
you to be considered for a liver transplant. They will work with a liver transplant nurse
to manage, treat and coordinate your care.

The assessment process

While undergoing assessment for a transplant, you’ll need to undergo a number of

tests. The process usually takes two to six weeks to complete, but varies depending
on the availability of tests and complexity of individual cases.

All patients need to undergo baseline tests, and extra tests are tailored to the
individual situation. For many people, these tests are performed on an outpatient
basis (which means there’s no need to stay overnight in hospital).

Base line tests include:

• blood tests
• screening for viruses or hepatitis
• X-rays
• Computed Tomography (CT) scans
• heart assessment
• lung assessment
• kidney assessment
• endoscopy
• dental check
• nutritional assessment
• surgical assessment
• anaesthetic review.
Other tests may include:

• bone density scan

• female patients must have a Mammogram and Cervical Screening Test
• Phosphatidylethanol (PEth) testing and other alcohol biomarkers in selected
patients to confirm alcohol abstinence
• social work review
• drug and alcohol counselling
• psychiatry review.
The test results provide an overall assessment of your current state of health,
and will help determine whether a transplant is a suitable option for you.

Liver transplantation – Information for recipients and their families 7

 Following Assessment

Once your test results are available, your hepatologist will meet with the
Australian National Liver Transplant Unit (ANLTU) to discuss your suitability
for a liver transplant.

They could recommend one of the following:

• you are considered suitable for transplant, and the severity of your liver
disease warrants your name being placed on the active waiting list. Your
details will be entered onto a confidential national registry and our local
transplant waiting list
• you are considered suitable for transplant, but deferred for an
indefinite period because your quality of life remains good in the
context of the symptoms and severity of your liver disease. If this is
the recommendation, you will remain under the care of your referring
physician who stays in contact with the hepatologist at RPA
• you are not considered suitable for transplant. Your hepatologist will
discuss appropriate care for you, which may include continued review
by the ANLTU hepatologist or returning to the physician or hepatologist
who originally referred you.
Your hepatologist will discuss the recommendation with you and your
family, so you can make a decision. Even if you are suitable for a transplant
now or later, you retain the right to decide that you would prefer NOT to
undergo transplantation. The team will respect your decision.

8 Liver transplantation – Information for recipients and their families

Section 2: Information you might need

Social Worker

The Social Worker on the team is available to provide you and your family/carer
with support through the ongoing process of liver transplantation. They offer:

• support regarding adjustment to living with an illness and negotiating the

transplant process
• counselling and emotional support
• carer support
• advising individuals of their rights
• planning and assistance for admission and discharge
• information and referral to community services
• information and referral for financial assistance, such as Centrelink options
• accommodation options near the hospital
• assistance with travel issues e.g. IPTAAS (Isolated Patients Travel and
Accommodation Assistance Scheme)
• provide educational resources about liver transplantation (e.g. web pages).
This service is free and confidential and available to all patients, their families/carers.
You can contact a Social Worker through the Social Work Department telephone
9515 9902 or ask the staff of the Liver Transplant Team to contact a Social Worker
by pager.

Aboriginal Liaison Officers

RPA has Aboriginal Liaison Officers for inpatients, their relatives and carers. If you
wish to see an Aboriginal Liaison Officer please speak to your liver transplant nurse.

Accommodation

The hospital does not provide patient/relative accommodation on site. There is

basic accommodation available at The Norland Hostel in Ashfield which is about
15 minutes’ drive from the hospital. Bookings for the hostel can be made by
contacting the RPA Accommodation Officer, on (02) 9716 7294. After hours phone
Nursing Administration on (02) 9515 6111 can assist with organising emergency
accommodation.

Other accommodation options in the area are listed in the RPA Accommodation
Guide found at slhd.nsw.gov.au/rpa/pdf/accommodation.pdf

Ambulance fund

It is ABSOLUTELY ESSENTIAL that you have, or get, ambulance cover while you
are on the waiting list. In NSW, ambulance services are provided free of charge
to Holders of a Health Care Concession Card, Pensioner Concession Card or
Commonwealth Seniors Health Card, you can check this with Centrelink. If you have
private health insurance, check with your insurance company. If you have neither, you
should obtain ambulance cover from a private health insurance company.

Liver transplantation – Information for recipients and their families 9

 IPTAAS (Isolated Patients Transport and
Accommodation Assistance Scheme)

IPTAAS provides reimbursement for travel and accommodation costs to

people who need to travel more than 100 kilometres one way from their home
to obtain specialist medical treatment. IPTAAS forms can be obtained from
your local doctor, social worker or the links below:

NSW: iptaas.health.nsw.gov.au

ACT: health.act.gov.au/iptas
(ACT patients to complete prior to transplant)

Income issues

If you are still working, you may need to plan now for the time when you
are not working because of deteriorating health or while you are recovering
from your transplant. You may be entitled to a Centrelink Benefit or Pension,
especially if you have no other income, this may also apply to your carer.

Hospital charges

Do I have to pay for the liver transplantation? The ANLTU is funded by the
New South Wales State Government, and your patient costs in hospital for the
transplant admission are covered by this funding. You should not receive any
bill associated with your liver transplant procedure, including any return to
hospital admissions related to your transplant.

You will be responsible to pay for medications (please refer to page 27)

If you require further hospitalisation after your transplant for any reason,
you have the right to nominate your insurance category as you think most
appropriate.

Non English speaking background (NESB)

For NESB patients presenting for assessment we will use the NSW interpreter
service, to ensure effective health care communication. There is no cost to
patients for this service.

People with disabilities

Like everyone in NSW, people with disability may require a transplant

assessment. We endeavour to accommodate all referrals on a case by case
basis. The decision to proceed will be based on the individual’s needs and
goals.

The internet

You may find information about liver transplantation on the internet, however,
you should remember that most of it applies to the United States, Canada or
Europe. The information included may not apply to Australia or the ANLTU.
Please check with your treating team about any questions you have about
material you find on the Internet.

10 Liver transplantation – Information for recipients and their families

You may be interested in looking up the following sites for information:

1. slhd.nsw.gov.au/services/transpl

2. gesa.org.au

3. transplant.org.au

4. hepatitisaustralia.com

6. donatelife.gov.au

7. health.nsw.gov.au

Social media

Social media is very popular but it is important to be cautious about our online
presence/posts. Sharing personal information can be harmful to yourself and
others in ways that are not always immediately obvious. Please be mindful that
what you post can be read by anyone, even if there is no identifying information,
your unique circumstances may still be recognised by the public.

Liver transplantation – Information for recipients and their families 11

 Section 3: Waiting for the transplant

Waiting time for your liver transplant can vary from a single day to months or
years, until a suitable donor is available. While waiting for a transplant, you will
return to the RPA Hospital for regular follow-ups (usually monthly).

When you are on the waiting list, you must be ready and available for a
transplant call at any time of the day or night. You will need to have travel
arrangements in place. The contact details we have for you must always be
updated (even if they only change for a short period of time).

At all times, the final decision to have a transplant is still up to you.

Maintaining your health while waiting for a liver

Lifestyle modifications can make a significant difference to your current

quality of life, suitability options and post-transplant recovery. You don’t have
to wait for a transplant to start improving your lifestyle, follow these steps
to help:

• regular follow ups to monitor your symptoms

• have a good diet
• mobilising as much as possible
• avoid alcohol
• follow your prescribed medications.

What if I become unwell while on the waiting list?

• between 07:30am and 17:00pm, contact your liver transplant nurse

• between 17:00pm and 07:30am, call RPA Hospital switchboard on
9515 6111 and ask for the Gastroenterology Registrar on-call
• if your symptoms are acute and urgent, call Emergency on 000
• if your symptoms are unrelated to your transplant or liver disease, see
your local General Practitioner
• if you’re admitted to another hospital aside from RPA Hospital, please ask
the team caring for you to contact the RPA Hospital transplant unit to
update us on your condition.

How is the next liver transplant recipient determined?

When a donor liver becomes available, it is first offered to the local Australian
state-based liver transplant unit. If the originating state is unable to use the
liver, the organ is referred to the other transplant units in Australia and New
Zealand on a rotational basis. Occasionally a liver will be offered interstate
for a patient with severe liver failure in intensive care requiring urgent
transplantation.

A recipient is matched from NSW liver transplant waiting list based on blood
group, body size and priority. Priority is determined based on a clinical
assessment of liver disease severity and a ‘model for end-stage liver disease’
(MELD) score (a formula calculated using blood test results).

12 Liver transplantation – Information for recipients and their families

When a suitable donor has been found

You will be contacted by a liver transplant coordinator and asked to activate the
travel arrangements previously arranged and discussed. Ideally, you should travel
with at least one member of your family, although this is not always possible.
The coordinator will tell you the time when you should stop eating and when to
attend the RPA emergency department.

Cancellation of surgery

A decision not to proceed may be made at any time through the process as new
information comes available. If the liver is found to be unsuitable for you at any
point then the procedure will be cancelled. It is quite possible that you could be
contacted on more than one occasion without the transplant going ahead. While
this is obviously disappointing, it would be in your best interest not to proceed to
transplantation under such circumstances.

Consent for surgery

During your surgical assessment appointment, all risks associated with the
transplant operation will be outlined. You will be required to sign a Consent for
a liver transplant operation form (there’s a copy of this form at the back of this
booklet).

Liver transplantation – Information for recipients and their families 13

 Section 4: The right donor for you

Each year, hundreds of lives are saved by the generosity of organ donors and
their families.

Following the identification of a suitable donor, consent for organ donation is

sought from the family. This process is managed by DonateLife, the Australian
Government Organ and Tissue Authority. Organs considered suitable for
donation include the heart, lungs, kidneys, pancreas, intestines, liver, tissue
and eyes.

It is important to understand that no one knows exactly when a donor organ

will be available for you. Allocation of organs depends on matching the blood
group and the size of the donated liver to the most unwell patient.

Types of donors

• Donation after Neurological Determination of Death (DNDD). These are

the usual donors, with permanent loss of brain function and blood flow.
They are always on a ventilator and undergo rigorous testing to ensure
the diagnosis of ‘death’ as well as checking for suitability to be a donor
• Donation after Circulatory Determination of Death (DCDD). These
donors usually have a severe, irreversible brain injury. The family and
treating team independently make the decision to withdraw active
treatment. The surgery to remove organs happens as soon as possible
after the donor dies and have been under more stress. Not all recipients
can receive a DCDD donation because of their diagnosis or previous
history
• Liver donation from living adults to paediatric or adult recipients
is performed when the circumstances justify it.
In all cases, the transplant team will consider the quality of the donor organ
carefully, and will not proceed to transplantation if it is thought that the risks
to you are too high. Risks specific to your situation and risks related to the
donor organ will be discussed with you by your hepatologist and Transplant
surgeon.

14 Liver transplantation – Information for recipients and their families

Section 5: The transplant surgery

In Australia, liver transplants are performed as open surgery. The operation

is very complicated and can take between four to twelve hours. Removing
the old liver can be extremely difficult, particularly if you have had previous
abdominal operations.

An adult liver is usually about the size of a football, and is located in the upper
abdomen, just under the diaphragm. This requires a large incision that can be
a long straight, an ‘L’ Shape or a Y shaped one.

Your old diseased liver will be removed and a new healthy looking liver
is transplanted in its place.

The liver is attached to a number of structures which have to be cut and rejoined.
Both your own gallbladder (if you still have one), and the gallbladder attached
to the transplanted liver will be removed at the time of operation. Do check with
your surgeon if you have any questions.

Fig. 1 Diagram of the operation

Artery

IVC

Portal Vein

Liver transplantation – Information for recipients and their families 15

 Split-liver transplantation

Because there are fewer donor livers available than people who can benefit
from a transplant, different ways to increase the number of people able to
undergo transplantation are used. One of these is split-liver transplantation.

In this procedure, a donor liver is divided in two parts, a larger right lobe, and
a smaller left lobe (see figure 2). The left lobe is used for a child and the right
lobe is used for an adult, meaning an adult and a child can be transplanted
from the one donor organ. The chance of developing complications from split
liver transplant is slightly higher than if a whole liver graft is used, however the
donors chosen for this procedure are the best. This means that our outcomes
are equivalent.

Fig. 2 Split liver transplantation.

Hepatic Vein

Artery

Bile Duct Portal Vein

The left lobe is used for a child and the right lobe is used for an adult.

Survival chances

Liver transplantation is a major operation. The 1-year post-transplant survival

is about 90%, and the 10-year survival is 70%. While the chance of dying
within the first year approaches 10%, we have seen a year on year reduction
in death after transplant in the 30 plus years we have been performing them.

Live donation

In Australia most donor organs come from deceased donors but in some
cases, liver transplantation using a live donor is an alternative. In brief, part of
the live donor’s liver will be removed and transplanted into the recipient. There
is significant caution when considering this process as we are creating risk to
a healthy person.

16 Liver transplantation – Information for recipients and their families

Adult to child

The world’s first successful living related liver transplantation from mother to
her child was performed in Brisbane in 1989, and is routinely performed in liver
transplantation centers throughout the world. Australian National Liver Transplant
Unit (ANLTU) has the expertise and has offered this service for 15 years. Recipient
survival is the same as for those patients that receive a liver from deceased
donors with 95% of the children alive at one year.

Under certain circumstances it may be possible for an adult to donate a portion

of their liver to a child. These donors must be a relative to the child or someone
known to the family. The child, who would be under the care of the paediatric
team at The Children’s hospital at Westmead, would be very unwell for us to
consider this process.

The adult would undergo the donation procedure which is similar to the split
procedure at RPA Hospital and the child undergoes the transplant at The
Children’s hospital at Westmead. There is a separate information booklet if this
procedure is offered to you.

Adult to adult

Some transplant units perform adult to adult living donor liver transplantation
however this is not a procedure which is done by our unit often. Living donor liver
transplant from an adult to another adult is an important strategy in parts of the
world where deceased donation is rare (such as Asia).

It is rarely used in Australia because we have a reasonable donor rate, and

because the surgery is complex, meaning that the results in recipients are likely
to be poorer than with a whole liver. It is a way, however, of assuring a timely
transplant and can be discussed with the surgeon at the surgical meeting. There
is a separate information booklet if this procedure is offered to you.

Liver transplantation – Information for recipients and their families 17

 Section 6: After surgery

First, you will be in intensive care

After surgery, you will be transferred to the RPA Hospital Intensive Care Unit.
The average stay in the Intensive Care Unit (ICU) is two to three days. When
you first wake up, you may be a little drowsy, as the anaesthetic drugs take
a while to wear off. You may not be able to talk as there will be a breathing
tube in your mouth. This will be removed when you are able to breath without
support.

There will be an ICU nurse monitoring you constantly and the Intensivists,
Transplant medical team and transplant surgical team will be routinely seeing
you.

Whilst in ICU:

• your pain levels will be monitored

• you will also have a number of lines (tubes) in place that will be removed
over the following days
o intravenous lines in your neck and arms for fluid, monitoring and pain
relief
o nasogastric tube to allow for feeding (with increasing oral intake
over time)
o abdominal drains to remove post-operative fluid from the abdomen
o urinary catheter draining your bladder
• calf compressors to your lower legs to reduce the risk of venous
thrombosis.
Family will be allowed to visit once you are settled in ICU.

The amount of time you spend in the ICU will depend on your recovery
progress and whether there are any complications.

Then, you’ll be moved to the transplant ward

After a stay in the intensive care unit, you will be transferred to the RPA
Hospital Transplant Ward. The average stay in the transplant ward is one
to four weeks, but may be extended due to complications.

You will be cared for on the ward by specialised transplant nurses, supported
by the Nursing Unit Manager and Clinical Nurse Educator. The Transplant
Team, including the Surgical and Medical Doctors will make regular ward
rounds. A team of allied health supports including social workers, dietitians
and physiotherapists will also assist your recovery.

18 Liver transplantation – Information for recipients and their families

The team will encourage and support you as you focus on:

• mobility
• chest physiotherapy and breathing exercises to reduce the risk of pneumonia
• food intake
• wound management
• monitoring bloods
• increase your activity becoming more independent
• regular rounds by the medical and surgical transplant teams.
Family and friends are encouraged to visit and their help and support plays an
important role in your recovery. From time to time, if there are concerns about
infection risk the hospital may restrict the number of visitors that may attend.

Discharge

Your stay may be extended due to complications but at the time of discharge
you should be well enough to do most things, like showering and dressing
yourself. You will be advised of an expected discharge date to allow sufficient
time to prepare for your discharge. For patients living outside the Sydney region
you will be expected to stay close to the hospital for 1–2 weeks or until your
doctor agrees you may go home.

Before discharge you will have education from:

• your liver transplant nurse will provide one to one education with you which
will continue in the outpatient setting
• the pharmacist will explain the importance of your medications and when
to take them
• the dietitian will discuss dietary requirements and food safety
• the social worker sill supply any supports you may need
• the physiotherapist will clear you for independent mobility
• the surgical team will review your surgical wound and make a plan for any
needed follow up.
Most people, although well, take many months to get over the effects of the
surgery and may not feel their normal selves again for several months.

Risks associated with liver transplant surgery

The major risks of liver transplant surgery include:

• intraoperative bleeding
• primary non-function (rare condition when the new liver does not work)
• hepatic artery thrombosis (formation of blood clot in the artery to the liver
which may result in the liver failing)
• kidney failure requiring temporary dialysis
• cardiac complications
• unexpected transmission of other diseases from the donor
• death (there is a 1 in 100 risk of dying during the transplant operation).

Liver transplantation – Information for recipients and their families 19

 Long term risks after a transplant include:

• your body rejecting the new liver

• infection
• bile duct narrowing (strictures)
• your disease coming back.
The transplant team will be an integral part of your transplant journey which
will be lifelong. We monitor you closely whilst you are an inpatient and you
will have regular contact with the team as an outpatient. The clinical expertise
and support offered will help reduce any risks that may arise.

20 Liver transplantation – Information for recipients and their families

Section 7: The immune system and rejection

The immune system creates our defence against infectious organisms, such
as bacteria and viruses, foreign substances or transplanted organs, including
a new liver.

Your body will recognise your new liver as foreign tissue and your immune
system will attempt to reject it. This is a normal reaction, but we use medications
to lower your body’s immune response (immunosuppression), so as to lessen the
chance of rejection. These medications do result in less rejection but also alter
your immune response, making you more likely to suffer from infections.

Rejection is common following liver transplantation and can be experienced

more than once. It most commonly occurs 7 to 10 days after surgery but can
occur at ANY TIME following transplantation. It is controlled in over 90% of cases
by a brief increase in medication.

Signs and symptoms of rejection may include:

• fatigue, lethargy or malaise

• lack of appetite
• fever
• abdominal pain or tenderness
• light-coloured stools (faeces from the bowel)
• dark-coloured urine
• yellow eyes and skin
• elevations in liver function tests
• flu-like symptoms – fever, joint and muscle pain.

If you develop any of these signs or symptoms notify the Liver Transplant team.
The onset of rejection does not mean that your liver will be lost but prompt
treatment is important.

Very rarely, a transplanted liver fails to function or undergoes irreversible

rejection. If a liver fails completely, the only hope is for a second transplant.
You will be on anti-rejection drugs for the rest of your life.

Liver transplantation – Information for recipients and their families 21

 Section 8: Infection

You will be more susceptible to infection as you are on high doses of

immunosuppressant medications which decrease your ability to fight
infection. Immediately post operatively patients may experience chest
infections, wound infections or blood infections and your team will manage
this.

Other common sense precautions need to be taken by avoiding exposure

to sources of infection:

• people with the flu and colds

• children with chicken pox or other viral infections
• dirty and dusty buildings (buildings under construction or destruction)
• large crowds at least initially
• avoid changing cat litter boxes or bird cages; they can be major sources
of infection
• if viral illness is prevalent in the community, then precautions to prevent
exposure to infection, such as social-distancing, use of hand sanitiser etc,
are important for all transplant recipients regardless of the time since
transplant.
Any infection that is of concern will be treated promptly with appropriate
antibiotics.

Transplant-specific infections

Infection Type of Symptoms Treatment

infection

Cytomegalovirus Viral Infection fevers, aches, Valganciclovir

Infection (CMV) pains and 3–6 months
diarrhoea post Tx

Methicillin- Bacterial nil Antibiotics and

resistant infection isolation whilst
Staphylococcus in hospital
aureus (MRSA)

Vancomycin- Bacterial nil Antibiotics and

resistant infection isolation whilst
enterococcus in hospital
(VRE)

Pneumocystis Lung Infection pneumonia Resprim

jiroveci fungus 3 doses per
(PJP) week for
a year

22 Liver transplantation – Information for recipients and their families

Section 9: Recurrence of original disease

Diagnosis Recurrence rate Treatment

Hepatitis B Can be prevented Successful treatment

with antiviral
medications

Hepatitis C Can be prevented Successful treatment

with antiviral
medications

Liver Cancer 8% Monitoring is routine

post-transplant

Primary sclerosing 20–30% Monitoring is routine

cholangitis post-transplant

Primary biliary cirrhosis 20–30% Monitoring is routine

and autoimmune post-transplant
hepatitis

Relapse to harmful Counselling and

alcohol supports encouraged
for 2 years after your
transplant

Liver transplantation – Information for recipients and their families 23

 Section 10: Other post-transplant problems

Possible post transplant complications will be managed by your transplant

teams or a referral will be made to an appropriate specialist.

Surgical post-operative problems

There may be a problem related to the flow of bile from your liver. A bile leak
or the development of a stricture (narrowing) in one of the bile ducts may
cause abnormal liver tests and jaundice. There also may be problems with
the blood vessels going into the liver, shown through elevated blood tests and
a scan. These complications may require invasive procedures or even surgery
to correct.

Other post-operative issues:

• wound complications
• Diabetes
• Osteoporosis
• problems with kidney function
• high cholesterol and blood fats (hyperlipidaemia) and high blood
pressure.

Emotional changes to expect

It can be a tense, anxious time for you and your family while you are on the
waiting list, have the transplant itself and through the recovery period. The
drugs given produce physical side effects that can be distressing to patients
as they face changes in their body image and can also contribute to increased
mood changes. Such mood changes may be irritability, depression and
feelings of elation.

Although you will have been looking forward to the day when you leave the
hospital, it is normal to feel apprehensive and insecure. It may take time to
adjust to your new healthy role, not only in yourself and your capabilities, but
also in your relationships with your family and friends. At the same time, it is
important to remember that family and friends have been under enormous
pressure as well.

24 Liver transplantation – Information for recipients and their families

Section 11: Nutrition

Adequate nutrition is a very important aspect of liver transplantation. Your

nutritional requirements will change over a relatively short period of time
depending upon where you are in the transplantation process i.e. before the liver
transplant, in hospital after the transplant or months to years after the transplant.

Pre-transplant

Most people with severe liver disease have lost a significant amount of muscle
and body fat. The most important nutrition goal is to eat the appropriate foods
to improve your nutrition and to stop any further muscle loss.

People waiting for a liver transplant are often asked to reduce their salt (sodium)
intake as salt retains fluid in your body. However it is important that you eat more
protein and more calories.

Dietary supplements are prescribed to help you meet nutritional goals.

Post-transplant

After your transplant your need for protein and calories is higher as it helps
with wound healing. You will be fed through a feeding tube to assist with your
nutritional requirements for up to a week. You will be able to have sips of water
shortly after your breathing tube is removed. And you will increase to a full diet
when you can tolerate it. Once we are comfortable that you are close to meeting
your increased nutritional needs we will remove the nasogastric feeding tube.

Once you are on the ward your family is encouraged to bring in some home-
prepared foods in an effort to increase your intake. Food safety is particularly
important after transplant and the dietitian will discuss this with you and your
family/carer.

The following nutritional guidelines will help you control your weight:

• try to eat regularly

• avoid frequent snacking between meals
• try to choose fat reduced alternatives. These include fish, lean poultry,
lean meats, reduced fat spreads and low fat or fat reduced dairy products,
legumes such as chick peas, kidney beans, and lentils
• avoid fried foods and foods with a lot of oil or cream
• you should include a small amount of olive oil daily in your diet either
in cooking or drizzled over a salad
• keep up your fluid intake with 2 – 3 litres per day preferably water
and no added sugar drinks
• eat generous amounts of vegetables
• always include a protein rich food
• limit your fruit juice to one small glass a day
• choose 2 – 3 serves a day of fresh fruit or fresh fruit combinations
• sucking sweets or lollies, eating chocolate and snack foods such as potato
chips regularly makes it virtually impossible to control your weight.

Liver transplantation – Information for recipients and their families 25

 Safe food handling

Safe food handling practices become more important for people who
are immunosuppressed. As a general rule of thumb, use separate cutting
boards and knives for raw meats, cooked meats, raw vegetables and cooked
vegetables. In addition, never refreeze raw meat, poultry or fish once it has
been thawed or defrosted.

Avoid:

• raw shellfish, including oysters

• raw fish including sashmi
• raw meats, uncooked smoked meats (salami, prosciutto, etc)
• uncooked eggs
• commercial coleslaw, potato and pasta salads
• commercial fruit salads
• raw bean sprouts
• soft serve ice creams
• soft cheeses and blue cheese.
You will receive a detailed brochure about safe food handling and possible
food sources of this bacterium from the dietitian after your transplant.

If you have any enquiries about your nutrition at any stage you should
not hesitate to contact the dietitian. Similarly, if you are having difficulty
controlling your weight at home after your transplant you should contact
the dietitian earlier rather than later.

It is so
important
for you to follow
the medication
and lifestyle
regime

26 Liver transplantation – Information for recipients and their families

Section 12: Medicines used in transplantation

In order to control rejection a combination of medicines is given which suppress

or reduce the effectiveness of the body’s immune system. These are called
immunosuppressant’s and must be taken for life. Other medicines are used
for a while after transplant to prevent infections and to manage other health
problems. All patients will have a MEDICATION CARD, on which current
medications and dosages are recorded. This card should be brought to all clinic
appointments.

It is important that you do not run out of medication.

Immunosuppressant medicines

Immunosuppressants stop special white cells (T cells) from becoming active

in your blood and attacking your transplanted liver. Currently, most patients
take tacrolimus (Prograf or Advagraf XL) or cyclosporin (Neoral). Some patients
will be commenced on prednisolone. Some patients require a third drug,
mycophenolate mofetil (Cellcept) or azathioprine (Imuran). The hepatologist
will determine which drugs and dosages are best suited to you.

Any form of long-term immunosuppression brings with it an increased risk from

infection. These risks have to be balanced against the necessity to take the drugs
that prevent the body from rejecting the liver.

Some risks include:

• increased risk to infections

• raised blood sugar levels or diabetes
• high blood pressure
• high cholesterol
• kidney damage
• increased risk of cancers.
Most of these complications can be managed by reducing or changing
the immunosuppressive drugs or using additional medications.

The pharmacist will discuss all the medications with you prior to your
discharge. They will discuss how and when to take them along with side
effects of each. After discharge you can enquire with your transplant
coordinators or hepatologist.

Common transplant medications

Tacrolimus (Prograf, Advagraf XL)

Tacrolimus is the mainstay of immunosuppression post liver transplant. Doses

are adjusted according to blood levels taken before the morning dose. Always
save your morning dose until after the planned blood test. Tacrolimus (Prograf)
is taken twice a day. Once your health is stable it may be switched to Advagraf
XL (slow release) once a day.

Liver transplantation – Information for recipients and their families 27

 Cyclosporin (Neoral)

Tacrolimus and cyclosporin are similar medicines, but sometimes cyclosporin

is used as an alternative to tacrolimus because of intolerance of tacrolimus.
Again doses are adjusted using blood levels taken before the morning dose
and 2 hours afterwards.

How to take your Tacrolimus (Prograf) or Cyclosporin (Neoral)

Tacrolimus (Prograf) and cyclosporine (Neoral) are given in two divided doses
12 hours apart usually taken at 8am and 8pm. Missing doses increases the
risk of rejection. If you are vomiting, or have severe diarrhoea, or miss a dose,
ring the clinic for advice. Tacrolimus/cyclosporin are dispensed free through
the hospital pharmacy as a ‘S100’ authority prescription, but may be available
from your local pharmacy with a GP prescription with a charge. It is preferred
you continue on the same brand unless your hepatologist is aware.

Further possible side effects:

• tremors in the hands

• insomnia
• raised potassium level
• hair thinning/growth of hair on face and arms
• rarely severe side effects such as confusion, seizures
• hot flushes or sweating
• numbness in the hands feet and mouth.
Prednisolone

Is a corticosteroid hormone similar to cortisol, which your body produces

normally. It dampens down the inflammatory response and your body can
stop making its natural cortisone after a few weeks on prednisolone. It takes
time to adapt to making it again, so prednisolone is slowly reduced to allow
this. Missing regular prednisolone (even due to vomiting or diarrhoea) can
leave you adrenally deficient, as well as giving a risk of rejection.

Never stop or reduce prednisolone without medical advice.

Other immunosuppressant medication

Mycophenolate mofetil (Cellcept)

Do not take Cellcept while trying to get pregnant (for both males and
females) or during pregnancy. Talk to your hepatologist before planning
your family.

Azathioprine (Imuran)
Sirolimus
Everolimus

28 Liver transplantation – Information for recipients and their families

 IMMUNOSUPPRESSANTS

PL PL
5 25

Prednisolone 5mg Prednisolone 25mg Cyclosporin Neoral® 25mg Cyclosporin Neoral® 50mg

PN
5

Prednisone 5mg Prednisone 25mg Cyclosporin Neoral®100mg

Azathioprine 50mg Azathioprine 25mg

Sirolimus 1mg Sirolimus 2mg

g

Mycophenolate mofetil 250mg Mycophenolate mofetil 500mg

Mycophenolate E.C. 180mg Mycophenolate E.C. 360mg Everolimus 0.5mg Everolimus 0.75mg
(as Sodium) Myfortic® (as Sodium) Myfortic®

am Tacrolimus XL 0.5mg Tacrolimus XL 1mg Tacrolimus 0.5mg Tacrolimus 1mg

ADVAGRAF XL ADVAGRAF XL PROGRAF PROGRAF

mg

Tacrolimus XL 5mg Tacrolimus 5mg

ADVAGRAF XL PROGRAF

50mg
Sponsored by
Renal Services Network,
a program of the
Greater Metropolitan
Clinical Taskforce,
NSW Health.

escent
AVS 83244

Liver transplantation – Information for recipients and their families 29

 TO PREVENT INFECTION
To prevent FUNGAL INFECTION To suppress HEPATITIS B

Fluconazole 200mg Itraconazole 100mg Lamivudine 100mg Entecavir 0.5mg

Tenofovir 300mg Entecavir 1mg

Nystatin oral drops

To prevent PNEUMONIA To prevent VIRAL INFECTION

R
GX CF1

Resprim® 400mg/80mg Resprim Forte® 800mg/160mg Valganciclovir 450mg Valaciclovir 500mg

or
Mycop
Septrin Forte® 800mg/160mg

Roxithromycin 150mg
Myco
(a
To prevent STOMACH PROBLEMS For the BONES

CALTRATE

Ranitidine 150mg Pantoprazole 40mg Caltrate 600mg Calcitriol 0.25 microgram Ta

L-S
CA

UP

Colecalciferol 25 microgram Calcium Carb 500mg

Sodium Bicarbonate 840mg Ursodeoxycholic Acid 250mg

Magnesium Asparate 500mg Phosphate 500mg effervescent

30 Liver transplantation – Information for recipients and their families

Other medications used after transplantation

Valganciclovir (Valcyte)

Valganciclovir is used to prevent and treat CMV (cytomegalovirus). It is

treated with either intravenous (through a vein) ganciclovir or oral (by
mouth) valganciclovir. Prophylactic tablets are taken for 3 – 6 months after
transplantation. Family members should handle valganciclovir with gloves,
as it is a cytotoxic medication.

Valaciclovir (Valtrex)

Prevents and treats herpes viruses which causing cold sores, genital herpes
and chickenpox. A large proportion of the population have been exposed to
the herpes virus and it may become activated during times of stress, or when
a person is immunocompromised.

Resprim

Prevents a type of chest infection called Pneumocystis pneumonia (PJP) which

immunosuppressed patients may be prone to. Half a Resprim-Forte tablet is
given three times a week for 12 months, to all patients after transplant.

Pentamidine

Alternate medication used for PJP as some people are allergic to sulfa-containing
antibiotics (such as Resprim). This is an inhaled medication given once a month
for 12 months. It may also be used for those who have a low white cell count. It
must be given at RPA.

Fluconazole

Fluconazole is a medication used to treat Pneumocystis pneumonia (PJP) and

prevention of yeast infections such as thrush. Fluconazole may interact with
some of the other medications, so it is important not to start or stop fluconazole
without direction from your hepatologist. It is usually stopped 1 – 2 months after
transplant

Acid-lowering medications (proton-pump inhibitors)

Pantoprazole (Somac), esomeprazole (Nexium) and similar drugs are used to

prevent the development of stomach ulcers that can be caused by stress and/or
prednisolone.

Drug interactions

Many medicines have the potential to interact with your transplant medications.
Please check with your hepatologist before commencing any new medication.

Medications/foods that may increase blood levels of tacrolimus/cyclosporin

include:

• Pneumocystis pneumonia (PJP) antibiotics such as erythromycin or

roxithromycin (Rulide)
• antifungal medications such as fluconazole
• certain blood pressure medication (calcium channel blockers)
• grapefruit, pomelo, pomegranate and star fruit.

Medications that may decrease blood levels of tacrolimus/cyclosporin include:

• Antacids • St John’s Wort • Rifampicin • Anti-epileptics

Liver transplantation – Information for recipients and their families 31

 Over-the-counter drugs

Check with your physician before you take ANY over-the-counter

medications, such as cold or cough medications or herbal medications. These
medications may mask a serious infection that must be investigated by your
hepatologist.

Unless specifically ordered by your physician do not take aspirin or anti-

inflammatory drugs such as ibuprofen (Nurofen), as they may cause stomach
irritation and kidney impairment.

Herbal remedies

These preparations may interact with the absorption or metabolism of your

immunosuppressive medications and alter your blood levels. The effects of
many herbal preparations on the liver are not known. St. John’s Wort, which
treats mild depression, is associated with rejection. Valerian also causes
abnormalities in liver function tests.

Paying for your medications

Once you are discharged you will be responsible for paying for your own
medications. This can be expensive, especially at the beginning. Some
medications can be obtained through the hospital pharmacy for no charge.
Make sure you keep your Prescription Record up-to-date so that you will know
when your Safety Net total is reached.

You may be entitled to a concession card, or Close the Gap, or the Safety Net
Scheme. Please talk with the Pharmacist or Social Workers if you need further
information about these schemes.

Compliance: a crucial factor

After transplant the most important compliance is taking your medicine

exactly as the transplant team instructed you – without missing a single dose
– even if you feel fine. Not taking your immunosuppressive medicines at the
right time and in the correct amount is one of the most common reasons for
rejection and transplant failure.

Helpful hints to help medicine taking:

• use the alarm on your phone at medication times as a reminder

• download a medication app to your mobile
• get help from a family member
• use the medication box provided
• have your pharmacy pack your medicines in a blister pack
• if you forget your medicines you will know as they will still be in the box/
pack – take as soon as you notice. If it is more than 6 hours late, discuss
with your clinic nurse about what to take for the following dose. (Do not
take two doses of the same medication at once)
• vomiting or severe diarrhoea can reduce absorption. Ring the clinic
for advice.

Do not self-medicate with any medication other than those prescribed by

your hepatologist.

32 Liver transplantation – Information for recipients and their families

Section 13: Life after discharge

Clinic

Following discharge your progress will be monitored in the Liver Transplant Clinic
on level 9 at RPA Hospital.

You will probably need to attend two times in the first week following discharge
and visits will become less frequent as time progresses. After one year from
transplantation most patients will attend clinic every 3 months. However, lifelong
follow-up is necessary.

Preparing for your outpatient visits:

• check your medicine supply to see whether you have enough medication
until your next visit. If not, remember to get a new prescription while at the
clinic
• do not take your morning dose of cyclosporin/tacrolimus until after your
blood has been taken
• bring your MEDICATION CARD, so that it can be updated
• if necessary, write down any questions you have so that you remember
to ask them while at the clinic.

Lifestyle

The whole purpose of your transplant is to return you to a normal lifestyle, there
are very few restrictions.

Driving: Most people can resume driving about six weeks after the operation,
check with your team.

School and work: Most people are able to return to school or work in time and
will vary from individual to individual, our team will discuss this in clinic.

Activity and exercise: You must maintain a regular daily exercise program, build
up your exercising gradually from walking to more strenuous activities as your
able. Swimming may be resumed after about six months, along with gradual
participation into sports. Ask at the clinic for more information.

Lifting: You may not lift anything that weighs more than 7kg (15lbs) – about the
weight of an average bag of groceries – for eight weeks after your surgery.

Alcohol: People whose liver disease was caused by alcohol should never drink
alcohol again.

Alcohol should be avoided for the first year after your liver transplant under
any circumstances. If you feel you are having difficulties complying with this
requirement, please discuss these issues with your transplant physician or nurse
who will arrange appropriate support through the transplant alcohol clinic.

Smoking: It is essential to STOP SMOKING before transplant and never return

to smoking. Smoking has been associated with an increased risk of severe
complications including blockage of the artery supplying blood to the liver.
If you require help to quit smoking please discuss with your transplant team.

Liver transplantation – Information for recipients and their families 33

 Sexual activity: Sexual activity can be resumed as soon as you feel able.
It may take a while to regain confidence and your sex drive, please discuss
any concerns or worries with your team.

Pregnancy and birth control: We advise you do not become pregnant within
the first 12 months after transplant. If you do become pregnant inform your
hepatologist as soon as possible.

It is unwise to embark on an unplanned pregnancy as medications you

are taking may have an effect on a developing foetus. Women who are of
childbearing potential must use effective contraception and will need to
have a discussion with your partner, hepatologist, general practitioner and
obstetrician/gynecologists before starting a family.

Female patients generally resume their menstrual cycle after liver

transplantation. High-dose prednisolone may stop the menstrual flow, but
ovulation (the time when you are fertile) will continue. Therefore, you may
become pregnant even though you are not yet having normal periods, so birth
control is necessary.

Tattoos and body piercing: There is a risk of increased infection with tattoos
and body piercing therefore you should discuss with your hepatologist before
having any. It is particularly important you do not have any within the first
12 months after transplant.

Pets: Usually there is no reason why you cannot keep pets after a transplant.
However, the only exception to the rule is if you have birds, especially
pigeons. Birds are known to carry a germ which can increase risk of serious
lung infection. If you have birds please discuss with your hepatologist before
transplant. Avoid changing cat litter boxes or bird cages; they can be major
sources of infection.

Regular medical reviews

Dentist: Routine dental care should be maintained and you should make your
dentist aware of your medications, particularly of your Cyclosporin regime.
Cyclosporin therapy can cause gums to swell or bleed, it also may cause an
overgrowth of your gums that will decrease when your dosage is reduced.

You will need to tell your dentist that you need antibiotics to prevent
infection.

Eye checks: Routine eye examinations are very important because prednisone
may cause a change in your eyesight or blurry vision. You should alert your
eye doctor or optometrist to all of your medications. It is recommended that
you not change your glasses prescription until your doses of prednisone have
stabilised.

Cervical screening tests and mammograms: Women should continue to have

regular cervical screening tests at least every 5 years. Examine your breasts
regularly, one week after your period and report to your transplant team if any
lumps develop. Mammograms should be performed according to standard
recommendations.

Screening for bowel cancer: Some patients are at increased risk of bowel
cancer after liver transplantation. In particular, patients with a history of
Primary Sclerosing Cholangitis, Inflammatory Bowel Disease, previous polyps
or bowel cancer or a strong family history of bowel cancer should undergo
regular colonoscopy after transplant. Annual colonoscopy is recommended.

34 Liver transplantation – Information for recipients and their families

Monitoring for osteoporosis: Regular bone density scans (DEXA) are
recommended for patients with a history of thinning of the bones, or who require
ongoing use of significant doses of prednisolone. These are usually performed
every one to two years.

Skin cancer and skin checks: There is a much higher risk of skin cancer
amongst all transplant patients. Therefore it is most important to avoid sunlight
for prolonged periods of time. Wear long sleeves and a hat at all times when
outdoors. Routine skin checks are essential.

Alcohol abstinence: It is important to recognise that Alcohol Use Disorder is

a separate condition that requires treatment and monitoring in addition to the
liver issues. Patients with liver disease caused by alcohol should continue follow-
up in relapse prevention on a regular basis through the Transplant Alcohol Clinic,
as determined by the treating hepatologist during assessment. Both face to face
clinic visits and regular blood testing will be done. The appointments will be
coordinated with hepatology appointments where possible. Phone counselling
and telehealth can be utilised as needed.

Donor correspondence and support groups

Writing to the donor family

For the family of an organ donor, receiving a card or letter of thanks from
a transplant recipient is very special. Donor information and details are
confidential as per legislation. The transplant coordinator will discuss with
you regarding writing an anonymous card or letter to the donor family.

Transplant Australia

Transplant Australia is a supportive network with patient information on their

website. They also have activities including sports, social events, weekends
away and fund raising activities. Transplant Australia organises the Transplant
Games, held nationally and internationally. For more information, call
(02) 9531 2589 or visit transplant.org.au

Remembrance and Thanksgiving Service – RPA Hospital

The Remembrance and Thanksgiving Service is held annually at RPA. This service
is held for anyone who has been touched by organ donation or transplant.

Annual Ecumenical Organ Donor Thanksgiving and Remembrance Service

The Organ Donor Thanksgiving and Remembrance Service is held annually. This
service is held for anyone who has been affected by organ donation or transplant.

Complaints and feedback

Making a complaint will not affect your right to quality service and may help us
to improve our service. If you feel there is difficulty in resolving your issue, please
contact the Patient Representative on (02) 9515 5590. Positive feedback
is encouraged and welcomed.

Liver transplantation – Information for recipients and their families 35

 Section 14: Travel

If you wish to travel, especially overseas or to a remote areas, check with the
Transplant Team first, because there are special considerations if you wish to
travel to certain countries such as:

• when travelling outside of Australia, you must carry a letter from either
your GP or hepatologist detailing what medicine you are on, how much
you are taking, and that the medicine is for your personal use
• you must leave all medicine in its original packaging
• ensure you have enough supply of medications to last for the duration
of your holiday
• you should make a note of where local hospitals are in case of a problem
and have the RPA Hospital switchboard number (02) 9515 6111 to give
them if you need to
• you should travel overseas with some form of travel insurance
• check with your liver hepatologist before receiving any vaccinations.
Transplant patients MUST NOT receive live vaccines.

Always
remember to
plan ahead

36 Liver transplantation – Information for recipients and their families

Section 15: Vaccinations

YOU MUST NOT RECEIVE ANY LIVE VACCINES AT ANY TIME

• BCG
• Yellow Fever vaccine
• MMR (mumps, measles and rubella) vaccine
• Varicella-zoster virus vaccine
• Smallpox
• Oral polio (live) Sabin vaccine.

Vaccines which you may have:

• Tetanus toxoid
• Inactivated Polio vaccine (IVP)
• Hepatitis B vaccine
• Hepatitis A vaccine
• Meningococcal Polysaccharide vaccine
• Diphtheria vaccine
• Influenza vaccine
• Pertussis (whooping cough) vaccine
• Pneumococcal vaccine
• Cholera (in patients over 6 months of age)
• Typhoid (in patients over 12 months of age).
Vaccines you should have:

• Flu Vax annually – obtained at your GP

• Pneumococcal vaccination – repeat every 5 years.
If you come into contact with chicken pox or other viruses,
notify the transplant nurse or hepatologist immediately.

Check with
your hepatologist
before receiving any
vaccinations.

Liver transplantation – Information for recipients and their families 37

 Appendix A

Glossary

Acute hepatitis: Acute inflammation of the liver which is usually due to viral infection.

Alcohol-related liver disease: Liver damage, caused by excessive consumption

of alcohol, ranging from too much fat in the liver to cirrhosis.

Anaemia: A condition in which the blood is deficient in red blood cells or oxygen-
carrying proteins.

Antibody: Part of the immune system that helps the body fight infection and
foreign substances.

Ascites: Uncomfortable accumulation of fluid causing abdominal swelling. This occurs

when the blood flow through the liver is obstructed. Ascites often occurs with cirrhosis
of the liver. It may persist for some weeks after successful liver transplant.

Auto-immune hepatitis: A form of chronic hepatitis which occurs when the body’s
immune system attacks its own liver cells.

Bile: Yellow-green fluid produced in the liver and stored in the gall bladder. Bile helps
the body break down fats and digest fat-soluble vitamins.

Bile ducts: Tubes which carry bile from liver cells to the gall bladder and duodenum.

Bilirubin: The breakdown product of old red blood cells excreted by the liver. Bilirubin
is normally excreted in bile. If this does not occur, the concentration of bilirubin in the
blood rises and leads to jaundice.

Cholestasis: Failure of bile to flow from the liver through the bile ducts.

Chronic hepatitis: Long-term liver injury due to inflammation of the liver.

Chronic viral hepatitis: Chronic infection of the liver due to the hepatitis viruses
B and C.

Cirrhosis: The end stage of chronic liver disease from any cause. The liver is scarred
and its function may be significantly impaired.

Cross matching: A test of compatibility between the potential donors and prospective
recipient’s blood.

Cytomegalovirus (CMV): A very common virus that harmlessly infects many normal
people. Virus activity can affect the liver, blood and eyes.

Cytotoxic: Damaging to cells, for example drugs used to destroy cancer cells.

Donor liver: The liver provided to the recipient in a liver transplant operation.

Donor: Someone who provides an organ for transplantation.

Encephalopathy: Confusion or unconsciousness that can occur when someone has

advanced liver failure or cirrhosis. It can be treated, but indicates that the liver disease
is becoming severe.

Fatty liver: Excessive deposit of fat in the liver.

Fibrosis: Formation of excess fibrous (scar) tissue in an organ such as the liver.

38 Liver transplantation – Information for recipients and their families

Gastroenterologist: A physician who specialises in treating diseases of the
digestive system and liver.

Graft: Your new liver.

Haematemesis: Vomiting up of blood. May result from bleeding from varices

or a peptic ulcer.

Hepatic: Referring to the liver.

Hepatic artery: The artery which carries blood to the liver. The portal vein
is the other main source of blood flow to the liver.

Hepatic vein: The vein which drains blood from the liver towards the heart.

Hepatitis: Acute inflammation of the liver often caused by viruses, drugs,

alcohol or toxins.

Hepatitis viruses: Viruses causing inflammation of the liver.

Hepatologist: A physician who specialises in liver diseases.

Inflammation: The end result of the reaction of the immune system to any
foreign infection.

Jaundice: Yellow colour of the eyes and skin due to excess bilirubin in the blood.
Usually occurs because the liver fails to excrete bilirubin in the normal manner
due to liver failure or obstruction to bile flow.

Liver cancer: Malignant cells in the liver whether from a primary cancer (which
originates in the liver), or more commonly, a secondary cancer (which spread
from somewhere else in the body). Primary liver cancer usually arises in a liver
that is already damaged through cirrhosis. Primary liver cancer may also be
called hepatocellular carcinoma or hepatoma.

Liver function tests (LFTs): Blood tests to measure the function of the liver.
They give an indication of how well the liver is working and help sort out the
type of problem that may be present. They are done daily immediately following
transplantation. Abnormalities can indicate rejection, infection, side effects from
drugs and many other things.

Oedema: Swelling of the ankles and legs due to an abnormal collection of fluid
in the body and a deficiency of the blood protein albumin. This is an effect of
chronic liver disease.

Osteoporosis: A decrease in the density of bone associated with advanced liver

disease and also with prolonged corticosteroid use. Bones with osteoporosis are
more likely to fracture.

Portal vein: A large vein which carries the major blood supply to the liver from
the intestine. Carries nutrients resulting from digestion of food.

Prophylaxis: The prevention of a problem. For example, antibiotics are often

given to transplant patients in the first year after their operation to prevent
Pneumocystis pneumonia – a complication of the anti-rejection drugs.

Varices: Large veins in the oesophagus which may develop due to portal
hypertension, and which place the individual at significant risk of bleeding
into the oesophagus or stomach.

Wilson’s disease: A disease due to excessive storage of copper in the liver

and brain.

Liver transplantation – Information for recipients and their families 39

 THE LIVER TRANSPLANT UNIT
Appendix B: Consent for a liver transplant operation
Appendix B:





ROYAL
ROYAL PRINCE
PRINCE ALFRED HOSPITAL

AUS T R ALIAN
AUSTRA AL I A N NATIONA
N AT I O N AL L
LIVER
I VE R TRANS
T RA NS PL
PLANTATION
ANT AT I O N UN
U NIT
NI T
in assoc
association
iaattion with the RPAH Depart
Department
r ment of Upper Gastrointestinal
Gastrointestinal Surgery and the AW Morrow
Morrow Gastroenterology and Liver Centre
Ceentre

Directors: Surgeons: Hepatologists:
Prof GW McCaughan
Prof McCaughaaan
n Dr DJ Verran Prof GW McCaughan
Prof an
Crawford
Dr MD Crawford Crawford
Dr MD Craw ford A/Prof
A/ Prof S Strasser
 Prof
Pr Pleass
of H Pl eass A/Prof
A/ Prof D Koorey
 Dr D JJoseph
oseph A/Prof
A/ Prof N SShackel
hackel
 A/Prof
A/ Prof C SSandroussi
androussi Drr D Bowen
D
 Dr A SShun
hun ((Paed)
Paed) Drr M Stormon (Paed)
D
 Dr G TThomas
homas ((Paed)
P aed) 
 Yeo
Dr D Ye o 
 A/Prof
A/Prof J Laurence
Laurence 
 

CONSENT FOR A LIVER TRANSPLANT
TRANSPLAN
NT OP
OPERATION
ER
RATION

………………………………………………
…………………………………………………………….. ……………….. request that a liver transplant operation be pe rffoormed
performed
nature of the operation has
on me. The nature has beenbeen explained fessor/Dr …………………………...
explained to me by Professor/Dr
Profess ……………………… ……...
I have be en provided
been p wit
withh a co py of the Information
copy P Info manualBook
formation
Patient Information for liver
on Livertransplant recipients and their families.
transplantation.
The process of organ donor selection and nd retrieval has been been explained
explaine ned to me. I am aware that the he donor livers
livers
enttirely
may not be entirely ir l normal. l Every
E efffoort is
effort i made made to screen the donor for
he donor for transmittable di d s. There
itt bl disorders. Th can be
no guarantee that thhat the donor does does not have such such a disorder
disorder (including infection fection or cancer).
innfe cancer). Donor livers livers can some
ffaatty
times have fatty tt de posits or other abnorm
deposits malities, which may not be rrecogni
abnormalities, recognised fore implantation.
sed before
befo implantatiion. These These can
cause slow init
cause initial ffuunction, and
tial function, and occasionally
occasionallly transplanted
transplanted livers do not functionffuunction adequately,
adequately, leading ng to to a need for
need for
re-transplantati
re-transplantation.tion. I aam m aware that it is us usual practice of the ANLTU U to use organsorgans from donorss with primary
localissed to the brain,
tumours localised brain, asas the risk of tumour transmission in these these cases extremely low.
cases is extremely
circum mstances, if my
In rare circumstances, my doctors
doctors are are very
vvery concerned
concerned about
about my chances of making it to transplant,
my chances transpplant, I may may bebe
offfeered a liver from
offered from a donor where the risk sk of transmission of a disease se (usually a virus or cancer)) is higher higher than
would usually be accepted for for transplant.
transplant. I (or my next next of kin) will formed of this and
willl be informed
info and will w be able to
de cline the off
decline ffer
offer e without affecting ffecting my chance
aff chance of getting an other off
another ffer.
offer.
am aware
I am aware thatthhat in some circumstances
circumstances I could could be transplanted only a portion of a donor liver, iff the organ has
been thought suitable
been suuitable for for a split procedure
procedure for ffoor use in a child as well as an adult. I understand that that I may receive
a liver from a donor don after fter circulatory deathh and this is likely to have a slightly higher
aft higher rate of initial function
al non-function
non-func
or long term bile ile duct narrowings.
bil
developm
The development ment of complications from ffrrom the operation has has been discussed
disscussed with me. These incclude infection,
These include fection,
infe
bleeding, poor
bleeding, ffuunction and rejection
poor function rej
ejection of the he liver.
I understand transplantati
understand that liver transplantation ation is a treatment ffaailure and
treatment for liver failure and not a cure and and that I willwil ill need to take
suppres
drugs to suppress ess re ejjection indefi
rejection finitely. These
indefinitely. The ejection drugs have
hese anti-rejection
anti-rej havve side effects
ffects specific
effe specifi fic for
for each
e drug andand
these have been een explained
explained to me. Patients treated long-term with these se agents are at increased
increased risk fection
sk of infection
infe
and cancer
and cancer development.
development
elopment.
I understandd there is a possibility (currently (currrently about 1 in 10) of death d ffiirst year following
during the first ffo
ollowing the
transplant oper
transplant ration. I am satisfied
operation. satisfified with the th
he explanations
explanations regarding the he risk of liver transplantation
transplantation on that at I have
received.
received.
I have been innfo
been informed formed that that the details of my m liver disease and and of
of my transplant
transplant procedure
procedure will be discussed discussed with
INFORMATION MANUAL

relev ant healthh pprofessionals

relevant rofe fessionals and and that these theese details will be included ed on clinical databases run un by the liver
transpl ant unit,, which will be used
transplant used ffoor clinical
for clinical audit an andd research pur rposes. I am also aware that
purposes. at tissue taken
from the organ at the time of the operation for ffoor clinical management
management reasonsreas
easons may also be utilised for ffoor research.
research.
I underst that signing this consent
and that
understand ffoorm does
consent form does not interferefere with my legal
interfe legal rights in the eventevent of negligence.
ne

SIGNED:………
SIGNED:
SIGNED:………………………………………
…………………………………
………

WITNESS:……
WITNESS:…………………………………….
………………………………….
………. DAT
TE:………………………….
DATE:………………………….




Secretariat:
Secretariat: Transplantation
Transpla
lantation Serv
Services,
ices, Level 9 East, Royal Prince Alfred
Alfr
fred Hospital,
Hospital, Missenden Road, Camperdownn NSW
NSW 2050
Telephone: 02 9515 7275 Facsim
Telephone: ile: 02 95155 3606 Email:
Facsimile: [email protected] http
Email: [email protected] ://www.anltu.ccom.au
http://www.anltu.com.au
Version:10
Version:10 JJune
une 2016

40 Liver transplantation – Information for recipients and their families

48
Appendix C: Transplantation Research at RPA

Make a donation to the RPA Transplant

Institute today and help us give the gift
of life

Transplantation Services at RPA are leaders in transplant surgery having

conducted kidney transplants since 1967 and liver transplants since 1986.
The RPA Transplant Institute (RPATI) helps fund vital equipment and research
in transplantation to help save lives of adults and children.

Our mission is to conduct high quality scientific and clinical research that
will lead to prolonged, improved health for all transplant patients.
Your donation will help us in this endeavor.

Please contact RPATI for more information on how you can support our life
saving work.

Call (02) 9515 1965

Go online to rpatransplantinstitute.com.au

Email [email protected]

Liver transplantation – Information for recipients and their families 41

42 Liver transplantation – Information for recipients and their families
Notes

Liver transplantation – Information for recipients and their families 43

Created: May 2021
AVS 88830