information manual - for liver transplant recipients and their families

INFORMATION MANUALFOR LIVER TRANSPLANTRECIPIENTS ANDTHEIR FAMILIESJune 2012AUSTRALIAN NATIONAL LIVERTRANSPLANTATION UNIT

THE LIVER TRANSPLANT UNITCONTENTSIntroduction...................................................................................................................................... 3Section 1. How the liver works 4Section 2. Assessment 6Section 3. Nutrition in liver transplantation 9Section 4. Information you might need 10Section 5. Waiting for the transplant 12Section 6. The right donor for you 13Section 7. Preparation for surgery 15Section 8. The transplant itself 16Section 9. After surgery 18Section 10. The immune system 19Section 11. Infection 20Section 12. Rejection 21Section 13. Nutrition following liver transplantation 22Section 14. Recurrence of original disease 25Section 15. Drugs used in transplantation 26Section 16. Patient information about drug trials 30Section 17. Other post-transplant problems 31Section 18. Outpatient visits 33Section 19. Follow-up medical care 34Section 20. Travel 35Section 21. Vaccinations 36Section 22. After discharge 37Section 23. Common Tests Performed 41Appendix A: Glossary 43Appendix B: Copy of Consent Form 48Appendix C: Contact numbers 49Appendix D: Liver Support Group Application Form 50Appendix E: The RPA Transplant Institute 52Professional Websites 53Notes 541INFORMATION MANUAL

THE LIVER TRANSPLANT UNITINFORMATION MANUAL2

THE LIVER TRANSPLANT UNITINTRODUCTIONThis booklet has been designed to give you the information you and your family need to help youunderstand what is involved in liver transplantation. Various members of the Transplant Team willdiscuss this information with you. You are encouraged to ask questions or talk about any anxietiesconcerning any of this information. Our aim is to inform you about liver transplantation, so that you canmake decisions about your treatment based on a good knowledge of the procedures, benefits and risksof liver transplantation.The Liver Transplant Unit at Royal Prince Alfred Hospital was opened in 1986. Since then the Unit hasperformed more than 1000 liver transplants.The general goals of liver transplantation are to prolong life and improve the quality of life whileoptimising the use of available liver donors. The liver transplant process continues to evolve andimprove, demonstrating excellent survival rates, now over 90% one year patient survival rates.Most diseases that end with liver failure have been successfully treated by liver transplantation. Themost common indications for liver transplantation in adults are chronic hepatitis C, hepatitis B, primaryliver cancer (also known as hepatocellular carcinoma), primary biliary cirrhosis, primary sclerosingcholangitis, autoimmune liver disease and alcoholic liver disease. Other indications include metabolicliver diseases including haemochromatosis and Wilson’s disease, acute liver failure and massive liverenlargement due to a variety of causesLiver transplantation is usually recommended when there is a progressive deterioration in liver function.Liver failure is manifested by a number of physical and clinical symptoms (eg: ascites (abdominalswelling due to fluid accumulation), variceal bleeding (bleeding from large veins in the oesophagus),hepatic encephalopathy (confusion and vagueness), or malnutrition) and by changes in blood resultsthat suggest deteriorating liver function (eg: low albumin, rising bilirubin and blood clottingabnormalities).3INFORMATION MANUAL

THE LIVER TRANSPLANT UNITINFORMATION MANUALSECTION 1:HOW THE LIVER WORKSLiver functionsThe liver is the largest and one of the mostcomplex organs in the body. It has manyfunctions; some of the most important include:• as a biochemical factory, it processesnutrients absorbed from the gut, and makesthem available for use by other parts of thebody• the production of bile and its excretion intothe intestine is important for absorption offats and certain vitamins• the production of blood factors includingmany of those necessary for blood clotting,and for normal body fluid balance• the removal of toxins from the bloodincluding those produced by bacteria in thegut and for the breakdown of alcohol andmany drugs• the removal of germs in the blood absorbedfrom the gut• the processing of some hormones andvitaminsLiver diseaseUnless liver damage is fairly severe or advanced,diseases of the liver are often “silent” andpatients may be unaware of any problem.The signs and symptoms of liver disease can beexplained by considering the various liverfunctions. Different liver diseases may affectsome functions more than others, resulting invariability between patients.The impairment of processing of nutrientsresults in wasting of tissues, particularly muscle.Impairment of the liver’s ability to excrete bilecauses accumulation of its constituentsincluding bilirubin pigment, responsible for theyellow discolouration of skin and urine4(jaundice), and bile acids which may beresponsible for the chronic itch suffered bysome patients.The decreased absorption of vitamin K andinadequate production of blood clotting factorscauses easy bruising and bleeding, initially fromthe gums.Massive bleeding from the gut is due, in part, toblood from the gut being diverted away from itsusual course through the liver, to other channelsin the oesophagus (gullet), which may ruptureunder pressure.The decreased production of blood proteinsinvolved in body fluid balance and the scarringof the liver contribute to the accumulation offluid in the abdomen and legs.The failure of the liver to deal adequately withpoisons produced in the gut can causedrowsiness, forgetfulness, and lack ofconcentration, confusion and coma.A damaged liver is also much slower at dealingwith alcohol and drugs causing increasingsensitivity to their use.Inadequate removal of micro-organisms or“germs” from the blood coming from the gutpartly explains the increased incidence ofserious infections in patients with liver disease.Signs and symptoms of cirrhosisAs continued scarring and damage to the liveroccur, the following signs and symptoms mayappear:• Loss of appetite• Weight loss• Jaundice - yellow discoloration of the whitesof the eyes and skin occurs because bilepigment can no longer be removed from theliver• Itching – due to the retention of bileproducts in the skin• Ascites – abdominal swelling due to anaccumulation of fluid caused by theobstruction of blood flow through the liver• Vomiting of blood – frequently occurs fromswollen ruptured varices (veins that burst) inthe lower end of the oesophagus due to the

THE LIVER TRANSPLANT UNITincreased pressure in these vessels causedby scar tissue formation• Encephalopathy (impending coma) – subtlemental changes ranging from poorconcentration advancing to profoundconfusion and coma.Treatment for these conditions• Ascites is treated by reducing the intake ofsalt and the administration of medications toimprove excretion of salt and water by thekidneys (fluid tablets or diuretics). Somepeople are unable to take fluid tabletsbecause of side-effects. In some instances,large amounts of fluid are removed by directcatheter drainage through the abdominalwall (a ‘tap’).• Treatment of encephalopathy includes useof specific medication such as lactulosesyrup.• Treatment of bleeding from varices (internalvaricose veins) includes taking medicationto reduce the likelihood of bleeding orrebleeding, ‘banding’ (the placement ofrubber bands on the varices at the time ofendoscopy), and occasionally, a radiologicalprocedure called transjugular intrahepaticportosystemic shunt (TIPSS).Management of encephalopathyWhen this condition develops at home it can bedistressing to deal with, so if you have noticedany worrying mental changes in your familymember or friend, please feel free to discuss itwith a member of the transplant team. We cangive you strategies to help prevent it or manageit, if it occurs.5INFORMATION MANUAL

THE LIVER TRANSPLANT UNITINFORMATION MANUALSECTION 2: ASSESSMENTReferral for TransplantIdeally, patients with cirrhosis should be referredto the liver transplant unit when they developevidence of deteriorating liver function,experience their first major complication e.g.ascites, variceal bleeding, spontaneous bacterialperitonitis (an infection that can develop in theabdominal fluid), encephalopathy ormalnutrition.Patients with hepatocellular cancer (primary livercancer) and cirrhosis should be referred forassessment by the liver transplant team as soonas the tumour is discovered, so that optimaltreatment can be decided.Transplant AssessmentA detailed assessment is carried out prior todeciding whether a patient is a candidate forliver transplantation.As a general rule there are four basicrequirements, which would indicate that youmay be considered suitable for assessment:a. irreversible, progressive liver diseaseb. the liver disease fails to respond to all otherforms of medical and surgical treatmentc. absence of other major diseasesd. ability to understand the nature and risks ofliver transplantationThe assessment processThere are a number of tests that will need to beperformed while you are undergoing assessmentfor transplantation. The results of these testsprovide an overall assessment of your currentstate of health and help determine iftransplantation is the right option for you. Thereare a number of baseline tests that all patientsneed to undergo; extra tests are tailored to theindividual situation.In most people, these tests are performed on anoutpatient basis.Time:usually 2 - 3 weeks needed to completetests.6The assessment period may vary greatlydepending on the availability of test procedures,personnel and, in particular, the complexity ofthe individual case.An outline of the tests you will need toundergoBlood testsA number of tests including:• Biochemistry• Haematology• Blood clotting profile• Cross-matching• Tissue typing• Hormone levels• Hepatitis screening• Screening for exposure to certain viruses,which will help to optimise your posttransplant management• A 24-hour urine collection to assess kidneyfunctionOther tests include:• Chest X-ray, hip X-ray, spine X-ray• ECG and cardiac ECHO• Lung function tests• Abdominal CT scan (This computerisedimage will show the size and shape of theliver and major blood vessels. At times, thistest reveals previously unsuspected livertumour.)• Bone density scan• Endoscopy• Female patients must have a Mammogramand Pap smear• Dental checkOther tests as individually indicatedTissue typingAlthough we perform tissue typing on all patientsawaiting transplantation, we do not matchdonors on the basis of tissue type. There arethree reasons:1. It does not seem to make any difference tothe outcome.2. There is usually insufficient time toaccurately tissue type a donor.3. There is a shortage of donors, so we wouldnever do any liver transplants if we had towait to have a tissue-type match.

THE LIVER TRANSPLANT UNITSECTION 3: NUTRITION IN LIVERTRANSPLANTATIONAdequate nutrition is a very important aspect ofliver transplantation. Your nutritionalrequirements will change over a relatively shortperiod of time depending upon where you are inthe transplantation process i.e. before the livertransplant, in hospital after the transplant ormonths to years after the transplant.Your diet whilst you are awaiting yourtransplantMany patients with severe liver disease have losta significant amount of their body fat stores andbody protein stores by the time they are referredto the liver transplant unit. The most importantnutritional goal whilst waiting for your transplantis to eat enough food to stop your body losingmore fat and more protein. This may be difficultif your appetite is poor. You will really need towork very hard at eating and this job does notend until some months after the transplant. Ifyou have been advised to restrict some foods,you will need to be more careful of the sorts offood that you eat but it is still important that youwork very hard to keep up a high energy/highprotein intake.The diet you were following when you first metthe transplant team may be changed whilst youare waiting for transplantation. The dietitian andthe doctors will discuss your individualrequirements with you.The most common restriction for people waitingfor a liver transplant is a salt (sodium) restriction.If you have been advised to reduce your saltintake you will need to discuss this with one ofthe dietitians as salt occurs in many foods, bothprocessed and naturally occurring. You will needsome professional advice about reducing yoursalt intake at the same time as maintaining ahigh energy/high protein intake. If you continueto eat foods with a high salt content it will bemore difficult to control the fluid in yourabdomen and legs.Most people waiting for a liver transplant havean increased need for protein and energy. If you9cannot eat enough to meet your body’sincreased energy and protein requirements youwill be asked to use dietary supplements suchas Ensure, Fortisip, Resource Protein, Polyjouleor Hepatamine or any combination of these.The Social Worker’s Role in the LiverTransplantation UnitThe Social Worker on the team is available towork together with you and your family, to assistyou with the ongoing process of livertransplantation and to support you in thedecisions you need to make.Some of the ways the Social Worker can assistare:*helping with the adjustment to living with anillness and negotiating the transplantprocess*relationship and family concerns*advising individuals of their rightsPeople can require added assistance withpractical concerns such as:*hospital procedures and documentation*financial concerns, such as Centrelinkoptions*accommodation – in or near the hospital*travel issues eg IPTAAS (Isolated Patients’Travel and Accommodation AssistanceScheme)*provide education resources eg books, webpages about liver transplantation*lifestyle options such as recreation activities*organise interpreters and liaise with culturalcommunity services*discharge planning eg community supportreferralsThe social work service is free and confidentialand available to all patients, their families andcarers.You can contact a Social Worker through theSocial Work Department telephone 9515 3787or ask the staff of the liver transplant team tocontact a social worker by page.INFORMATION MANUAL

THE LIVER TRANSPLANT UNITINFORMATION MANUALSECTION 4: INFORMATION YOUMIGHT NEEDAccommodationThe hospital does not provide patient/relativeaccommodation on site. There isaccommodation available at a hostel in Ashfieldwhich is about 15 minutes drive from thehospital. The hostel consists of 26 rooms, someof which contain one single bed and four roomshave two single beds. The cost ofaccommodation is $65 double and $45 persingle per night.Accommodation bookings for the hostelcan be made by contacting the RPAAccommodation Coordinator, Noeleen Frankson (02) 9515 9901. She will be able to adviseyou regarding other accommodation options inthe area. After hours phone NursingAdministration on (02) 9515 6111 to assist withorganising emergency accommodation.Ambulance fundIt is ABSOLUTELY VITAL that you have or getambulance cover while you are on the waitinglist. If you are on a Social Security Pension orBenefit you are already covered. You can checkthis with the Department of Social Security. Ifyou have private health insurance, you areprobably covered. You should check with yourinsurance company. If you have neither, youshould obtain ambulance cover from a privatehealth insurance company (eg: NIB orMedibank Private).Travel and accommodation expensesYou are responsible for your own travel andaccommodation expenses. However, if you livemore than 100 kilometres away from thehospital, you may be entitled to a refund of partof your travel and accommodation expenseswhen you come to the hospital to see a doctor.IPTAAS (Isolated Patients Transport andAccommodation Assistance Scheme)IPTAAS provides reimbursement for travel andaccommodation costs to people who need totravel more than 100 kilometres one way fromtheir home to obtain specialist medical10treatment. IPTAAS forms can be obtained viayour local doctor or the links below:NSW:www.health.nsw.gov.au/living/transport/pdf/terms.pdfACT:www.health.act.gov.au/iptas (ACT patients tocomplete prior to transplant).Income issuesIf you are still working, you may need to plannow for the time when you are not workingbecause of deteriorating health or while you arerecovering from your transplant. You may beentitled to a Department of Social SecurityBenefit or Pension, especially if you have noother income. Your carer may be entitled to aCarers Pension. Please see the Social Worker ifyou have any questions about this.Hospital chargesPatients' costs for Liver Transplant1. Do I have to pay for the liver transplantation?The Australian National Transplant Unit isfunded by the New South Wales StateGovernment. All your patient costs in hospital forthe transplant admission are covered by thisfunding. You should not receive any billassociated with your liver transplant procedure.This applies to your hospital admissions for thetransplant procedure. Once you are discharged,you will require ongoing drug prescriptions viathe hospital Pharmacy. The Pharmacy willcharge you the standard nominal chargeassociated with hospital prescriptions for anoutpatient. If you require further hospitalisationafter your transplant for whatever reason, youhave the right to nominate your insurancecategory as you think most appropriate.The InternetYou may find information about livertransplantation on the Internet. This informationmay be of interest you. However, you shouldremember that most of it applies to the UnitedStates, Canada or Europe. The informationincluded may not apply to Australia or theAustralian National Liver Transplantation Unit inSydney. Please check with your doctors aboutany questions you have about material you havefound on the Internet.

THE LIVER TRANSPLANT UNITYou may be interested in looking up thefollowing sites for information:1. http://www.cs.nsw.gov.au/gastro/livertransplant2. http://www.gesa.org.au3. www.transplant.org.au4. www.myDr.com.au5. http://www.hepatitisaustralia.com6. http://www.hepatitisc.org.au7. http://www.liverfoundation.org8. http://www.health.nsw.gov.au9. http://www.trioweb.orgINFORMATION MANUAL11

THE LIVER TRANSPLANT UNITINFORMATION MANUALSECTION 5: WAITING FOR THETRANSPLANTTo those people who have been told to preparefor placement on the Waiting List.(If you are unsure then you have not been told).(1) Have a mobile phone(2) Install “call waiting” on your home phone.(3) Make sure you have ambulance cover.(4) Let the Transplant Team know as soon aspossible for any changes in yourcircumstances.(5) Do not hesitate to contact us regarding anyissues that are of concern to you.(6) Become thoroughly familiar with this book.(7) It is strongly advised that you have all youraffairs in order prior to being actively listedfor transplant. This includes making a willand organising power of attorney.(8) It will be very much to your advantage if youcan arrange for your GP to be involved inyour ongoing care after the transplant.Please discuss this with them.(9) Await further instructions.Meeting with Transplant CoordinatorIf you are considered as suitable for immediate“Listing” for Transplant, the TransplantCoordinator will contact you to arrange anappointment.At this appointment:• Details of the surgery will be discussed withyou.• Discussion will take place of what to dowhen the call comes.• The Coordinator will confirm your contactdetails with you, this will include all relevanttelephone numbers including a mobiletelephone number (you will need to becontactable at all times)• The Transplant Coordinator can becontacted on:Claire BakerMon-Fri 7.00am - 3.30pmTel: 9515 7274After hours:Switchboard 9515 6111 and ask to speak tothe Transplant Coordinator on-call12Once you have been accepted on the waitinglist, the final decision to have a transplant is stillup to you. Be ready and available for atransplant call at all times, unless otherwisediscussed with medical staff and the TransplantCoordinator.You will need to be contactable 24 hours a day,7 days a week. The Liver Transplant Coordinatorwill discuss this with you. They also discusstravel and accommodation arrangements withyou. Waiting time can vary from one day to manymonths, possibly years. There can be muchanxiety and stress whilst you wait for a suitableorgan.Whilst waiting for transplant, you will return tothe clinic for regular follow up, usually on amonthly basis. You need to notify us if youbecome unwell or if you are admitted to hospitalfor any reason.WHAT TO DO IF YOU BECOME UNWELLAT HOME OR HAVE ANY CONCERNSRELATED TO YOUR TREATMENT:• Contact Margaret Gleeson at theAW Morrow Liver Centre, Monday - Friday8am - 4.30pm. Tel. 9515 7263• After hours: Call Liver Registrar on-callTel. 9515 6111• If you feel your illness is unrelated to yourtransplant or liver disease, you should seeyour local General Practitioner (GP)• If you are admitted to another hospital,please ask the team caring for you tocontact the transplant unit to inform us ofyour condition

THE LIVER TRANSPLANT UNITSECTION 6:THE RIGHT DONOR FOR YOUSelection of a suitable donorIt is important to understand that no one knowsexactly when a donor organ will be available foryou. In Australia, only around 1% of all deathsoccur in such a way that organ donation ispossible. Injuries or illnesses that result in organdonation may include bleeding into the brain,accidents, infections or tumours. Potential organdonors are always on a mechanical ventilatorand in hospital (because without a supply ofoxygen, organs would not be suitable fortransplantation). The vast majority of organdonors in Australia are ‘Brain Dead’. Brain deathis the permanent loss of brain function which isdetermined by rigorous testing. Brain deadpeople are able to donate because the heart isstill beating blood around to the organs. Thealternate deceased donor is one who donatesafter ‘Cardiac Death’.Donation after Cardiac Death (DCD)Donation after cardiac death is a newer initiativeto allow more people to be deceased organdonors. These donors have severe andirreversible injuries or illnesses. Following anindependent decision by the family and treatingmedical team to withdraw active treatment,some families request that organ donation beconsidered. When suitable, organ donation canoccur in this setting particularly for kidneys, liverand lungs. Following withdrawal of treatment,organs are retrieved as rapidly as possible afterthe donor has died (determined by the heartstopping) according to a strict NSW governmentapproved protocol. There is a small amount ofdamage that can occur during the dying phaseespecially to the liver, so the transplant doctorsare very selective about the donors they woulduse for liver transplantation to minimiseproblems for the recipient.Equally important is the decision to donate. Ifthe deceased did wish to donate his/her organsand the family support that decision, then allsteps will be taken to ensure those wishes arefulfilled. Over 90% of Australians support organdonation ‘in-principle’. However, actual consentsin the hospital setting are lower, at around 50%.13Following rigorous tests to confirm brain deathand after consent for organ donation is obtainedfrom the next of kin , the donor will be assessedfor their suitability to donate. If the donor issuitable to donate organs, they will be taken tothe operating theatre for organ retrieval surgerythat takes several hours to complete. Donororgans are allocated by matching the bloodgroup, size of the donor and the recipient. Theliver is offered to the neediest patient on thewaiting list who is the best match.Increasingly, donor organs that are offered fortransplantation have some reason why they arenot absolutely optimal. With the poor organdonation rates in Australia, and the increasingnumber of people that need a transplant, evensuboptimal donor organs are considered fortransplantation. Thus, donors may be older,have some evidence of excess fat in the liver orhave evidence of exposure to hepatitis virusinfection.Hepatitis C-positive donor livers (that do nothave evidence of significant liver disease) areoffered to recipients with chronic hepatitis C. Inall patients with hepatitis C, the hepatitis Cinfection comes back after transplant, and thereis no evidence that the course of the hepatitis Cin the new liver is any different if the donor liverhas hepatitis C as well. Such a liver will not beused in a recipient who does not already havehepatitis C.Some donors have evidence of previousexposure to another hepatitis virus, hepatitis B.In most of these cases the donor does not haveevidence of active infection, but on the basis ofblood tests, we can tell that there are smallquantities of the virus in the liver. Withoutpreventative medication, this virus can reactivatein the new liver and cause long-term problems.Therefore, it is policy of transplant units totransplant such a liver and then to use highlyeffective preventative medicine (an extra tablet aday, called lamivudine) to prevent reactivation.If it is thought that it is in your best interest toaccept such a donor, the issues will bediscussed with you prior to proceeding totransplant.In all cases, the transplant team will consider thequality of the donor organ carefully, and will notINFORMATION MANUAL

THE LIVER TRANSPLANT UNITproceed to transplantation if it is thought that therisks to the recipient are too high. A decision not toproceed may be made fairly early in the process,just after a recipient has been notified, or if newinformation comes available, may be made evenafter the recipient has been transferred to theoperating room. While this is obviouslydisappointing, it is in the patient’s best interest notto proceed to transplantation under suchcircumstances.WRITING TO THE DONOR FAMILYFor the family of an organ donor, receiving a cardor letter of thanks from a transplant recipient isvery special. Donor information and details areconfidential, but if you would like to send ananonymous card or letter to the donors’ family,contact the Transplant Coordinator.INFORMATION MANUAL14

THE LIVER TRANSPLANT UNITSECTION 7:PREPARATION FOR SURGERYWhen a suitable donor has been foundWhen a suitable donor has been found, you willbe contacted and asked to activate the travelarrangements as discussed with the LiverTransplant Coordinator. The form of transportchosen for your journey to the hospital willdepend upon your health and the distancetravelled. Private cars are the usual first option.Ideally, you should travel with at least onemember of your family, although this is notalways possible.Once the call has been received, you mustcommence fasting for surgery, that is, you mustnot have anything more to eat or drink.When you arrive at the hospital, you shouldreport to the Emergency Department. Youshould inform the staff that you have been calledin to have a transplant.with your legal rights in the event of negligence.Following admission to hospital you will be askedto sign a separate hospital consent form prior totransfer to the operating theatre.Cancellation of surgeryThe fact that you have been called to thehospital does not guarantee that you will have atransplant. It is quite possible that you could becontacted on more than one occasion withoutthe transplant going ahead. If the liver is foundto be unsuitable for you at any point then theprocedure will be cancelled These facts cansometimes only be ascertained in the last hoursbefore the transplant goes ahead. In thesecircumstances, it is in your best interest not toproceed with the surgery.Consent for surgeryAt the time of entry on to the Waiting List orbefore, you will be required to sign a “Consentfor an operation for liver transplantation”. A copyof this form can be found on the at the back ofthis booklet. It says the risks from the operationare three kinds. Firstly, although every effort hasbeen made to screen the donor for transmissibledisorders, there can be no guarantee that thedonor did not have such a disorder. Secondly,the drugs required to control rejection have sideeffects specific for each drug. Thirdly, thecomplications of the operation itself includeinfection, bleeding, poor function and rejectionof the liver. There is a possibility (currently aboutone in ten) of death. This information needs tobe explained to you in detail before you sign theconsent.You will need to sign that you understand thatliver transplantation is a treatment for liverfailure, not a cure, and that you understand youwill need to take drugs to suppress rejectionindefinitely. You need to be satisfied with theexplanation of the risks of liver transplant anddiscuss it further with your doctors if you needto. Signing of the consent form does not interfere15INFORMATION MANUAL

THE LIVER TRANSPLANT UNITINFORMATION MANUALSECTION 8:THE TRANSPLANT ITSELFThe surgical procedureThe diseased liver is removed and a normal liveris transplanted into the space where thediseased liver was located, ie. on the right-handside of the upper abdominal region. Thisrequires a large incision on the upper abdomen.The operation is very complicated and takesapproximately four to eight hours. Removing theold liver can be extremely difficult, particularly ifyou have had previous abdominal operations.Diagram of the operationFig.1IVCPortalVeinArteryDuring surgery your old diseased liver will beremoved and a new healthy looking livertransplanted in its place. (A gallbladder will notbe transplanted with the liver).16The Liver Transplant Operation.The liver is attached to a number of vitalstructures, all of which have to be cut andrejoined.These are:o the inferior vena cava (IVC), the major veinthat drains into the heart above the livero the portal vein, the vein that feeds bloodfrom the intestines into the livero the hepatic artery that carries oxygen to thelivero the common bile duct, the major ducttransporting bile from the liver to theintestineOnce all these major structures have beenjoined from the donor liver to yours theabdominal cavity is washed with warm saline.Two white drains called Jackson Pratt drains areinserted into your abdominal cavity. They will beattached to another suction container. The fluidwhich drains into them will be blood stained.This is quite normal. Your abdomen is closed inlayers of muscle under the skin.You will be transferred to ICU from the operatingtheatre where the staff will observe the drainage.Once drainage ceases, the Jackson Pratt drainswill be removed, usually one to two days afterthe operation.Gall bladderBoth your own gallbladder (if you still have one),and the gallbladder attached to the transplantedliver will be removed at the time of the operation.Do check with your surgeon if you have anyquestions.DressingsWe use clear dressings to cover the incision.The skin clips used to close the skin are visiblethrough them. The dressings are permeable towater vapour but impermeable to organisms.Sometimes blood or fluid will be visible but it willnot effect the skin healing. The dressings are lefton for up to 7 days. You are able to shower withthem on.Split-Liver TransplantationBecause of the disparity between the increasingnumbers of people waiting for transplant, andthe numbers of donor livers available, ways are

THE LIVER TRANSPLANT UNITalways being undertaken to increase the numberof people able to undergo transplantation. Astrategy that is used in many transplant centresaround the world, including RPAH, is split-livertransplantation. In this procedure, a donor liveris divided in two parts, a larger right lobe, and asmaller left lobe (see figure 2). With this strategy,an adult and a child can be transplanted fromthe same donor organ. Not all people waiting fortransplants are suitable to have a right lobetransplant and the transplant team will alwaysselect an appropriate recipient. The chance ofdeveloping complications from a split livertransplant is slightly higher than if a whole livergraft is used. Within the first few months aftertransplantation, the split liver increases in sizeuntil it is the size of a full-sized liver. Since theimplementation of split liver transplantation, thenumber of children waiting for transplantation inAustralia has significantly reduced.Fig.2Donation after Cardiac Death (DCD)Livers retrieved from these donors (see section6.) have been under more stress than normaljust prior to the donor surgery. This can mean aslight increase in both early and latecomplications. Early on the experience is thatthere is a slightly higher risk of the liver notworking straight away after transplant. Later onthere seems to be a higher risk of problems withthe bile ducts. We reduce these risks by beingvery cautious about which of these livers we willaccept for you.Transplantation from living donorsAdult to Child transplantationLiver donation from living relatives to paediatricrecipients is performed when the circumstancesjustify it. The procedure is almost identical to thesplit procedure. There is a separate informationbooklet for live donor transplant to paediatricrecipients. If you are interested please speak tothe liver transplant coordinator.Figure 2. Split liver transplantation. The left lobeis used for a child, and the right lobe is used foran adult.17Adult to Adult transplantationA new initiative is adult to adult live donor livertransplant where an adult patient can receive aportion of liver from a relative or close friend.The donor is a healthy adult 18-55years old. Thedonation must be completely voluntary. Thedonor undergoes rigorous testing to ensure theirsafety and that there is a good match with therecipient. The operation to donate a large part ofthe liver to an adult is a major one and carries arisk of dying that is as high as 1 in 200 chance.There is a separate information booklet aboutadult to adult live donor liver transplantation. Ifyou are interested, you should check with yourtransplant doctors to see if you are suitable andask for a copy of the live donor transplantbooklet.Survival chancesLiver transplantation is a major operation.However, due to various recent advances theperi-operative mortality is now less than 10%.The 10-year post-transplant patient survival isabout 70%. No doubt, these figures willcontinue to improve.INFORMATION MANUAL

THE LIVER TRANSPLANT UNITSECTION 9: AFTER SURGERYIntensive careFollowing surgery you will return from theoperating theatre to the Intensive Care Unit,which is located on Level 3 of the hospital. Whenyou first wake up, you may be a little drowsy.The anaesthetic drugs take a while to wear off.You will be given pain relief intravenously duringthe early postoperative period. These can alsomake you sleepy. A stay in the intensive careunit allows your body time to recover its basicbodily functions (e.g. breathing, heart rate, bloodpressure).Most patients will have a breathing tube still inplace attached to a breathing machine called aventilator for the first 24 hours. You will alsohave a number of intravenous lines (tubes) inplace, one in your neck and also attached toblood vessels in your arms. You will have a nasogastrictube coming from your nose, a smalltube to empty your bladder and a number oftubes draining fluid from your abdomen. You willalso be attached to a heart monitor, which willrecord your vital signs. The staff who work in anintensive care unit have been specially trained tosee you safely through this period. Family will beallowed to visit once you are settled in intensivecare. If you cannot talk, you will be provided witha message board to write on. As time passes,the I.V. lines and drainage tubes will gradually beremoved. All tubes should be able to beremoved in the days following the operation.You will not be able to eat straight away, but canusually have something to drink within hours ofthe breathing tube being removed, andsomething to eat a day or so later.Your sleep pattern may be disrupted initially.This is not uncommon after major surgery and astay in the ICU, which can be noisy at night. Thehigh doses of anti-rejection medication dosesyou are given in the first few days can also bedisruptive to your sleep, but this usually settlesdown after a few days on the transplant ward.Your daily routine will include, daily blood tests,showering, wound dressings, assistance withactivities of daily living until you graduallybecome more independent. There will be regularward rounds by the Transplant Team, whichinclude Surgical and Medical Doctors. Yourmedications will be given intravenously at first,and then by mouth once you commence solidfood.Family and friends are encouraged to visit andtheir help and support plays an important role inyour recovery. As you recover your health, youwill be expected to become more active. Thismeans spending more time out of bed, andwalking a little more each day.The hospital has chaplains from manydenominations and religions. If you would like avisit from a member of your own religion, pleaselet the ward staff know.Recovery timeThe average stay in the Intensive Care Ward is 2to 3 days. The average stay in hospital wards is1 to 4 weeks. This may be extended due tocomplications. Most people, although well, takemany months to get over the effects of thesurgery and may not feel their normal selvesagain for several months.INFORMATION MANUALThe Transplant WardAfter a short stay in the intensive care unit youwill be transferred to the transplant ward onLevel 9. Once on the transplant ward you will beencouraged to mobilise as early as possible tofacilitate your recovery. You will have regularchest physiotherapy to help with your breathingand you will also be given breathing exercises todo. If at all possible the nursing staff will assistyou to get out of bed to shower by day two orthree at the latest.18

THE LIVER TRANSPLANT UNITSECTION 10:THE IMMUNE SYSTEMYou will be on anti-rejectiondrugs for the rest of your life.The immune system creates our defence againstinfectious organisms, such as bacteria andviruses, foreign substances or transplantedorgans, including a new liver.Your body will recognise your new liver asforeign tissue and your immune system willattempt to reject it. This is a normal reaction.After your operation, medications such astacrolimus/cyclosporin, prednisone andmycophenolate/azathioprine are used to loweryour body’s immune response(immunosuppression), so as to lessen thechance of rejection.These medications do result in less rejection.However, because they alter your immuneresponse, they also make you more likely tosuffer from infections, because the immunesystem also serves as a defence mechanismagainst bacteria and viruses entering your body.In many ways your medication treatment is acareful balancing act - to give enough so thatyour body does not reject your new liver but nottoo much so as to predispose you to infectionsor other side-effects. Because these medicationshave such an important function, they aremedications that you will always have to take.You will also have to be closely followed by theTransplant Team.Despite the tremendous progress in livertransplantation, it is still not a cure. It is atreatment for your liver disease. This is why it isso important for you to follow the medication andlifestyle regime that will be recommended foryou. Your efforts, together with those of theTransplant Team, are intended to increase yourquality of life and return you to as normal life aspossible. Complications that can be preventedwill be picked up early with regular follow-upand allow treatment to be given straight away.19INFORMATION MANUAL

THE LIVER TRANSPLANT UNITSECTION 11: INFECTIONWith immunosuppression, your ability to fightinfection is decreased; this is particularly so inthe first few months when the doses ofimmunosuppressive medications are relativelyhigh.Common sense precautions need to be taken:avoid exposure to sources of infection, such aspeople with the flu and colds, children withchicken pox or other viral infections, dirty anddusty buildings (buildings under construction ordestruction), and large compact crowds at leastinitially. Normal hygiene precautions should helpprevent infection and no extra measures need tobe taken.Care of your skin is very important. If a cut orgraze does occur, cleanse the area and apply aclean, dry dressing or plaster and watch forsigns of infection. Should healing be prolongedand/or pain, swelling, redness, or infection benoted, you should notify your GP or theTransplant Team. Symptoms of cystitis (urinarytract infection), sore throat, cold sores or mouthsores should also be reported to your GP or yourTransplant doctor if visiting clinic.As your general health improves, the dosages ofyour immunosuppressive medications areusually reduced, which means that you willregain resistance to most infections.Pay careful attention to personal hygiene. Thisinvolves regular showering and keeping yourmouth clean, regular brushing of your teeth aftereach meal and last thing at night with a softtoothbrush.INFORMATION MANUAL• Avoid changing cat litter boxes or birdcages; they can be major sources ofinfection• Wash your hands as often as possible20

THE LIVER TRANSPLANT UNITSECTION 12: REJECTIONRejection is common following livertransplantation. Your body recognises thetransplanted liver as a foreign object and tries todestroy it through a process known as rejection.It is not uncommon to experience one or moreepisodes of rejection during the recovery period.It most commonly occurs 7 - 10 days aftersurgery. It is controlled in over 90% of cases bytransient increases in medication.The chances of rejection diminish with time, butrejection can occur at ANY TIME followingtransplantation. Frequently an episode ofrejection is not associated with symptoms,however it is important that you be aware ofsome signs and symptoms of possible rejection.- Intravenous steroids (IV methylprednisolone)(a ‘pulse’)- Other immunosuppressive drugs such asAzathioprine (Imuran), Mycophenolate(Cellcept) or ATG.The onset of rejection does not mean that yourliver will be lost but prompt treatment isimportant.Very rarely, a transplanted liver fails to functionor undergoes irreversible rejection. There is nodialysis treatment for livers as with kidneys.Thus, if a liver fails completely, the only hope isfor a second transplant.Signs and symptoms of rejection mayinclude:1. Fatigue, lethargy or malaise2. Lack of appetite3. Fever4. Abdominal pain or tenderness5. Light coloured stools (faeces from thebowel)6. Dark coloured urine7. Yellow eyes and skin8. Elevations in liver function tests9. Flu-like symptoms - fever, joint andmuscle pain.If you develop any of these signs or symptoms ofrejection once you leave hospital, notify the LiverTransplant team. However these symptoms donot always appear before a rejection episode.Many episodes are picked up by routine bloodtests at the time of your outpatient visits. Abiopsy may be required to make a definitivediagnosis.Rejection may be mild or severe. In most cases,liver rejection can be controlled satisfactorily iftreated promptly.There are many methods for controlling rejectionand they may include:- Tacrolimus or Cyclosporin dosageadjustment21INFORMATION MANUAL

THE LIVER TRANSPLANT UNITINFORMATION MANUALSECTION 13: NUTRITIONFOLLOWING LIVERTRANSPLANTATIONYour diet during your hospital stayafter transplantationMost patients do not start to eat until the secondor third day after the transplant. Your first mealwill usually consist of fluids and you will progressrapidly to a full ward diet.By the end of the first week of eating you willfind that the nursing staff, the doctors and thedietitian are all very concerned about how muchfood you are eating and you will receive constantinquiries about your food and fluid intake.The reason for the concern is that most patientscome to transplant in a malnourished state inspite of pushing themselves hard to eat. Manystudies have shown that people who are poorlynourished take longer to recover and longer toheal their wounds after an operation and may bemore susceptible to infections.There are studies to show that liver transplantrecipients need a high protein intake as well as ahigh-energy intake in the period after theoperation. It also seems that liver transplantpatients go through a period where they needlots of calories just to maintain their weight andin fact may lose weight rapidly even on a veryhigh energy intake.At this stage eating may seem to be one of thehardest things you have ever had to do. You willreceive constant reminders from all theTransplant Team about eating enough food tohelp your wound to heal and to prevent furtherweight loss.You will be asked to supplement your intake withhigh protein drinks such as Resource Protein,Fortisip, Resource Fruit Beverage or Sustagen .You may receive large meals. You are notexpected to eat all the food at one meal butrather to spread it out over the day, so that youspend your day grazing. Your family is22encouraged to bring in some of your favouritehome-prepared foods in an effort to increaseyour intake.Occasionally it may be necessary to supplementa patient’s intake by feeding through a fine tubewhich passes from the nose down the back ofthe throat and into the stomach. This happenswhen the team identifies that the patient iseating poorly, and not able to drink enoughsupplements in the presence of significantweight loss or poor wound healing. This feedingmay be either over twenty fours hours or onlyovernightThe dietitian will monitor your weight andnutritional progress closely and you willconstantly be pushed to increase your proteinand energy intake. It will be reassuring for you toremember that these increased requirements donot last forever.The dietitian will discuss your ideal or preferredweight with you. When you are nearing this goalyou will need to reduce your food intakedramatically, as there is a great tendency to gainweight rapidly several months after transplant.Long-term weight control may be a seriousproblem in the future if you do not reduce yourintake when advised to do so.Any dietary restrictions that were needed beforeyour transplant are no longer necessary. Somepatients have high blood sugar levels after theirtransplant and this may be related to theirmedication doses. It is not necessary to go ontoa special diet to control the blood sugar levels atthis stage. Insulin is used to control blood sugarlevels as it is much more important to eatenough foods rich in protein and energy orcalories. As the medication is reduced the bloodsugar levels often normalise.If you continue to have problems with fluidretention after the transplant reducing your saltintake may help to make it easier to control theexcess fluid.

THE LIVER TRANSPLANT UNITYour diet when you go home aftertransplantAround two to three months after leavinghospital the emphasis on eating changes.Food starts to taste good again, your appetiteincreases and you start to gain weight.Unfortunately this combined with the fact thatyou now have a liver that works and the highprednisone doses means that it is now all tooeasy to gain weight.Prednisone has the effect of stimulating yourappetite at the doses you are taking when you gohome. Patients frequently say that they nolonger know when they have eaten enough andthat they are always hungry. They also say thatthis effect may last for years.It is very important to reduce your food intakewhen you are within three to four kilograms ofyour goal or desired weight. You will gain theremaining weight without really trying.Weight control is the most important nutritionalissue when you are discharged aftertransplantation. Rapid excessive weight gainmay affect your liver function tests. Regularexercise and a sensible eating plan will help tocontrol your weight.Your exercise program should start from the timeyou leave hospital even if you are stillsignificantly underweight at this stage. Gentleregular exercise will not harm your new liver norwill it open up the scars.The following guidelines will help you in thestruggle to control your weight:• Try to eat regular meals• Frequent snacking between meals will makeit difficult for you to control your weight. Ifyou need to eat between meals, choosehigh-fibre foods such as crisp crunchyvegetables. Vegetable soups are oftensatisfying on a cold winter’s day and are lowin fat and calories.• High fat foods are high in calories orkilojoules. Try to choose the reduced fatalternatives at all times. These include leanmeats, lean poultry, fish, reduced-fatspreads and low-fat or reduced-fat dairy23products. Try to avoid fried foods and foodsladen with oil or cream.• Fluids are important. Choose low caloriedrinks such as iced water, tea or coffeewithout sugar, plain mineral water or sodawater, diet soft drinks and diet cordial.• Vegetables, including potatoes and cerealssuch as bread, rice and pasta shouldprovide the basis of your meals with smallerserves of lean meats, lean poultry, fish etcrather than the other way around.• Choose fresh fruit or fresh fruit combinationsto finish off a meal rather than the highercaloriealternatives.• Sucking sweets or lollies or eatingchocolates regularly makes it difficult tocontrol your weight.Some patients may go home with high bloodsugar levels and may require insulin injections ortablets to control their blood sugar levels. If thispersists for six months you will need to go on toa special diet to make it easier to control yourblood sugar levels. Regular exercise also makesit easier to control your blood sugar levels.The dietitian will discuss your diet details withyou and your family prior to discharge. This willbasically involve eating at regular intervals withan emphasis on reducing the amount of fat youeat and avoiding foods with a high concentrationof sugar.You may find that your blood sugar levelsnormalise within twelve months aftertransplantation and that you are then able to eatan unrestricted diet. Remember, that if this doeshappen then you still have the ability to gainweight easily.Fluid retention may be a problem even by thetime you go home. Avoiding added salt and foodwith an obviously high salt content would assistin controlling this excess fluid. Many patientsmay have been on a salt restriction prior totransplantation. It is not necessary to limit yoursalt intake as severely after your transplant.As transplanted patients are immunosuppressedit is important to be aware of the possibility offood poisoning. There are two bacteria inparticular which may be a serious problem forpatients who may be immunosuppressed. TheyINFORMATION MANUAL

THE LIVER TRANSPLANT UNITare Listeria monocytogenes and Vibriovulnificans.Vibrio vulnificans is a bacterium that may bepresent in raw shellfish. It is particularly harmfulin people with a suppressed immune system.Although contamination with the bacteria is rare,all transplant patients are advised not to eat anyraw shellfish.Listeria monocytogenes is a bacterium that ismore widespread in our food supply. It also lovesto grow in the cold. Keeping foods in therefrigerator will not safeguard you from this“bug”. Careful handling of food and anawareness of possible contamination of specificfoods will help prevent infection. You will receivea detailed brochure about this “bug” and itspossible food sources from the dietitian whenyou have your transplant.Finally, you always have access to the livertransplant dietitian. If you have any inquiriesabout your nutrition at any stage, you should nothesitate to contact the dietitian. Similarly if youare having difficulty controlling your weight athome after your transplant you should contactthe dietitian earlier rather than later.You can contact the dietitian through theDepartment of Nutrition and Dietetics - telephonenumber (02) 9515 8053. Alternatively you canask the staff at the Liver Transplant clinic tocontact the dietitian.INFORMATION MANUAL24

THE LIVER TRANSPLANT UNITSECTION 14: RECURRENCE OFORIGINAL DISEASERecurrence of your original disease may occur,particularly if your original disease is due to viralhepatitis. B or C. Hepatitis B recurrence afterthe transplant was previously fairly high riskwithout preventative treatment. Nowadays thereis good preventative treatment available againstrecurrence, in the form of anti viral drugs thatact against the hepatitis B virus. Treatment isusually commenced in the pre-transplant phaseand continues indefinitely post transplant inconjunction with regular monthly injections ofHepatitis B Immunoglobulin.Recurrence of the Hepatitis C virus is universalfollowing transplantation. The majority ofpatients will have a mild recurrence which willnot cause significant problems for the first fiveyears after transplant. Problems beyond thistime may emerge. A small group of patients willdevelop a more severe recurrence with thedevelopment of cirrhosis within three to fiveyears of transplantation. Most patients who havea transplant for hepatitis C will have regular liverbiopsies (perhaps once or twice a year) tomonitor for any damage caused by the virus.Your transplant doctor may make alterations toyour immunosuppression medications and mayrecommend a course of antiviral treatment withpeginterferon and ribavirin. Some patients canclear hepatitis C infection after transplant witha course of antiviral treatment. This is an areaof active research and treatments are beingdeveloped to prevent and treat viral recurrencepost transplant.If you had a liver cancer in your old liver, there isa possibility this may recur after transplantation.Your doctors will take all steps to minimise thechance of this occurring, but it is always a risk.Recurrence of liver cancer, may first be noticedin the bones or the lungs, rather than in the newliver. Your doctor will be constantly monitoringyour condition.Recurrence of primary biliary cirrhosis,autoimmune chronic active hepatitis andprimary sclerosing cholangitis are reported butthe incidence is rare.25INFORMATION MANUAL

THE LIVER TRANSPLANT UNITINFORMATION MANUALSECTION 15: DRUGS USED INTRANSPLANTATIONIn order to control rejection a combination ofdrugs are given which suppress or reduce theeffectiveness of the body’s immune system.These drugs are called immunosuppressivesand must be taken for life. Other drugs are usedfor a period of time after transplant to preventinfections and to manage other health problems.All patients will have a MEDICATION CARD, onwhich current medications and dosages arerecorded. This card should be brought to allclinic appointments.Immunosuppression DrugsLife-long immunosuppression is necessary andtablets must be taken daily. Some patients mayremain on a small dose of prednisone. Currently,most patients also take tacrolimus (Prograf) orcyclosporin (Neoral) twice daily, with the dosebeing decided on the basis of blood test levelstaken just before the morning dose is due. Somepatients require a third drug, azathioprine(Imuran) or mycophenolate (Cellcept), takenonce or twice a day. All drugs as an outpatientare taken orally (by mouth).Side-effectsAny form of long-term immunosuppressionbrings with it an increased risk from infection.The risk is highest during high-dose prednisonetherapy, so during such times patients need tobe isolated from anyone suffering from aninfection. Other risks include the developmentof diabetes, high blood pressure, highcholesterol and kidney damage. Most of thesecomplications can be managed by reducing orchanging the immunosuppressive drugs or usingadditional medications. In the long-term, there isalso a slightly increased risk of malignancy inpatients taking immunosuppressive drugs.These risks have to be balanced against thenecessity to take the drugs that prevent the bodyfrom rejecting the liver.There are three main drugs used for livertransplant patients and your liver specialist willdetermine which drugs and dosages are bestsuited to you.26Here is a list of the drugs that may be used aftera liver transplant, giving the reasons for their useand possible side effects.Tacrolimus (FK506) (Prograf)Stops special white cells (T cells) from becomingactive in your blood and attacking yourtransplanted liverTacrolimus and cyclosporine are similar drugsand work in a similar way but have somedifferent side effects. Tacrolimus/Cyclosporin arethe mainstay of the immunosuppression postliver transplant. Doses are adjusted according toblood levels. They are never used togetherbecause of their shared toxicities.Side effects of Tacrolimus include:i) impaired kidney function (picked up onroutine blood tests).ii) increase in blood pressure.iii) neurological side effects that includeheadaches, mild tremors, insomnia,possible nightmares. Rarely patients mayexperience severe side effects includingconfusion, seizures and coma.iv) raised blood sugar levels or diabetes.v) increased risk of infection.vi) raised potassium level.vii) nausea and vomiting.viii) mild hairlossCyclosporin (Neoral)Again Cyclosporin is a strongimmunosuppressive drug that stops specialwhite cells (T-cells) from becoming active in yourblood and attacking your transplanted liver thatnormally fight against transplanted tissueintroduced into your body. It is almost alwaysgiven along with prednisone.Side-effects of Cyclosporin include:i) impaired kidney function (picked up onroutine blood tests).ii) high blood pressure.iii) hot flushes or sweating.iv) numbness or tingling in the hands, feet ormouth.v) shaking or trembling hands and feet, butthis decreases with the reduction in doseover time.vi) hair growth, most commonly noted on theface, arms and legs but this decreaseswith reduction in dose over time.

THE LIVER TRANSPLANT UNITvii) overgrowth of gums, sometimesassociated with soreness, swelling andredness, hence the need for regularmouth care.viii) sinus drainage, “runny” or “stuffy” nose.ix) increased risk of infection.How to take your Tacrolimus(Prograf) or Cyclosporin (Neoral).i) Tacrolimus/cyclosporin is given in twodivided doses 12 hours apart usuallytaken at 8am and 8pm.ii) It is very important to taketacrolimus/cyclosporin regularly exactlyas prescribed. You must not alter thedose or time taken without medicaladvice.DO NOT RUN OUT OF CAPSULES.iii) Tacrolimus/cyclosporin is usuallydispensed initially through the hospitalpharmacy. In patients who are onstable doses, the medication may beavailable from your local pharmacyusing an Authority Script.iv) Do not take your Tacrolimus orCyclosporin prior to having your bloodtaken on the morning of your visit.Bring your morning dose of medicationwith you and take as soon as possibleafter the test. Some people takingCyclosporin will be asked to have theirblood tests exactly 2 hours after takingthe morning dose.Generic MedicationThere are now some generic brands ofimmunosuppression medication on the market.You may be dispensed one of these if you getyour medications from a pharmacy other thanhere at RPA. As a general rule, it is preferredyou continue on the same brand as supplied bythe hospital. Please discuss with your Doctorbefore taking any generic immunosuppression.27Once Daily TacrolimusSome patients on stable doses of twice dailytacrolimus may be swtiched to a once dailyprolonged release formulation (Prograt XL). Thisshould be taken at least 1 hour before breakfastor 2-3 hours after breakfast. It is much easier toremember to take a capsule once a day! Bloodtests to monitor the level are taken just prior totaking the next dose.Prednisone is a steroid hormone similar tocortisol, which your body produces normally. Itreduces the number of circulating white cells inthe blood by dampening down the inflammatoryresponse. The dose given is initially high posttransplant and is gradually tapered down untilyou are on fairly small dose. It is given inconjunction with other drugs to preventrejection.Side-effects include:i) Stomach irritation that may occasionallycause stomach ulcers. Never takeprednisone on an empty stomach so youshould take it after breakfast each day.ii) Fluid retention, high blood pressure andswelling of the face, hands or ankles.iii) Weight gain due to an increase in yourappetite and subsequent increase in foodintake.iv) Increased risk of infection, especially inthe first few months after transplantationwhile your prednisone dose is high.v) High blood sugar (diabetes) may occurwith high doses of prednisone therapy.This is called “steroid-induced” diabetes.If you are a diabetic, you may requireadditional insulin to maintain a normalblood sugar. You will be instructed in adiet that will help you control this sideeffectif necessary.vi) Skin changes such as acne, rashes orbruising.vii) Mood changes that may swing fromfeeling “up” to feeling “down”.viii) Softening of the bones (osteoporosis)can be experienced after long-term useof steroids. A diet high in calcium orsupplementation with calcium andvitamin D capsules will help, and theprednisone dose is reduced as soon aspossible after transplant.INFORMATION MANUAL

THE LIVER TRANSPLANT UNITINFORMATION MANUALNEVER STOP OR REDUCE PREDNISONEWITHOUT MEDICAL ADVICEAzathioprine (Imuran)Azathioprine is used for the suppression of yourimmune response. It acts on the bone marrowby decreasing the number of white blood cellswhich fight infection. With azathioprine there isan increased risk of infection and an increasedtendency for skin cancers.Side-effects include:i) Bone marrow depression - a low whitecell count is the most common problem,but a low platelet count and anaemia mayoccur.ii) Nausea or vomiting - so take your Imuranafter meals to lessen stomach upset.iii) Occasionally, people are allergic toazathioprine, and are unable to take it.Mycophenolate mofetil (Cellcept)One of the newer immunosuppressantmedications similar to azathioprine that may beadded to some patients drug regimen. It is takentwice a day 12 hours apart.Side – effects include:i) Vomitingii) Diarrhoeaiii) Low white cell countSirolimus/RapamycinThese belong to a newer generation ofimmunosuppressant drugs. They act bystopping special white cells (T cells) frombecoming active in your blood and attackingyour transplanted liver. They have a differentside effect profile from tacrolimus/cyclosporine.They are taken once a day and the dose given isdependent on the level of the drug in your blood.Side – effects include:(i) Hyperlipidemia (high cholesterol levels inthe blood)(ii) Abdominal pain and diarrhoea(iii) Low red blood cell count (anaemia)(iii) Low white blood cell count(iv) Low platelet count (thrombocytopenia)(v) Acne and rash28Other Drugs used after TransplantationValganciclovir (Valcyte)Ganciclovir is used for the prevention andtreatment of CMV (cytomegalovirus) viralinfection. This is a viral infection transplantedpatients may be prone to because of theirsuppressed immune systems and usuallyreactivates from prior infection in either therecipient or donor. It is given as capsules for3-6 months after transplantation. Some patientsmay still develop CMV once ganciclovir tabletsare stopped and this will require treatment witheither intravenous (through a vein) gancicloviror oral (by mouth) valganciclovir.Valaciclovir (Valtrex)Valaciclovir is used for prevention and treatmentfor viruses know as herpes simplex (causingcold sores) and varicella zoster (which causeschickenpox). A large proportion of thepopulation have been exposed to the herpesvirus and it may become activated during timesof stress, or when a person isimmunocompromised (lowered resistance toinfection, by medication or disease). Thismedication is not used routinely after transplant.Bactrim/ResprimOne Bactrim/Resprim tablet is given three timesa week to all patients after transplant to preventa type of chest infection called Pneumocystiscarinii (PCP) which immunosuppressed patientsmay be prone to. This medication is continuedfor 12 months.PentamidineThis is an alternative drug to Bactrim, which isused as preventative treatment for PCP, forpatients who are allergic to Bactrim or those whohave a low white cell count. It is inhaled througha nebuliser once a month for 12 months.FluconazoleFluconazole is a medication used for treatmentand prevention of yeast infections. An exampleof a yeast infection is thrush. Fluconazole mayinteract with some of the other medications,so it is important not to start or stop fluconazolewithout direction from your transplant doctor. Itis usually stopped 1-2 months after transplant.

THE LIVER TRANSPLANT UNITAntihypertensivesAntihypertensives are drugs used to treat highblood pressure. Patients taking Cyclosporin orTacrolimus often get an increase in their bloodpressure. If this occurs, a variety of medicationscan be used.Listed below are other medications that may berequired after a transplant:InsulinInsulin may be required for patients who havehigh blood sugar levels after transplant.Oral diabetes medicationsSome patients develop only mild diabetes thatcan be managed with tablets such as gliclazide(Diamicron) or metformin (Diabex, Glucophage).Acid-lowering medications (proton-pumpinhibitors)Rabeprazole (Pariet), pantoprazole (Somac),esomeprazole (Nexium) and similar drugs areused to prevent the development of stomachulcers that can be caused by stress and/orprednisone.DRUG INTERACTIONSMany drugs have the potential to interact withyour transplant medications.Please check with your doctor about thepossibility of any drug interactions with yourtransplant medications before commencing anynew medication.Drugs that may increase blood levels oftacrolimus/cyclosporin include macrolideantibiotics such as erythromycin orroxithromycin (Rulide), antifungal medicationssuch as fluconazole, certain blood pressuremedication (calcium channel blockers), andgrapefruit juice.Levels may be lowered by other medications,including rifampicin, St John’s Wort, and antiepileptics.Over-the-counter drugsCheck with your physician before you take ANYover-the-counter medications, such as cold orcough medications. These medications maymask a serious infection that must beinvestigated by your doctor. Unless specificallyordered by your physician do not take aspirin oranti-inflammatory drugs such as ibuprofen29(Nurofen), as they may cause stomach irritationand kidney impairment.Paying for your drugsOnce you are discharged you will be responsiblefor paying for your own drugs. This can beexpensive, especially at the beginning. You maybe entitled to one of the various concessioncards. Check with the Social Worker about this.As well, you will probably be able to takeadvantage of the Safety Net Scheme. Make sureyou keep your Prescription Record up-to-date sothat you will know when your safety net total isreached.You will then be able to get your drugs at areduced rate. Please talk with the pharmacistor Social Workers if you need further informationabout these schemes.Compliance: a crucial factorWhen you, as a patient, are said to be“compliant”, it simply means that you are, to thebest of your ability, following the instructions ofthe doctors, nurses, and other professionalsresponsible for your care. Specific examples ofcompliance include:• not missing any of your follow-up visits andlaboratory tests• exercising regularly and maintaining yourweight• learning all you can about the long-termcare of your transplantHowever, for transplant recipients the mostimportant aspect of compliance is taking yourmedication exactly as the transplant teaminstructed you - without missing a single dose -even if you feel fine. For as long as you have atransplant, you will have to takeimmunosuppressive drugs. Not taking yourimmunosuppressive medication at the right timeand in the correct amount is one of the mostcommon reasons for rejection and transplantfailure.INFORMATION MANUAL

THE LIVER TRANSPLANT UNITSECTION 16: PATIENTINFORMATION ABOUT DRUGTRIALSTransplantation has been improving steadily overthe years because of better surgical techniquesand better use of immunosuppressive drugtherapy.In most transplant centres clinical trials arecarried out with the aim of finding the bestregime of immunosuppression to improve organsurvival rates, decrease the number of rejectionepisodes and to reduce side effects.The usual means of carrying out these trials isby comparing the “new” treatment with the bestavailable standard treatment. This is called acontrolled clinical trial.Where does this fit in for me as a patient on thetransplant list? The transplant team will discussany clinical trials that the Liver Transplant Unit atRoyal Prince Alfred Hospital is currently involvedin. All trials are approved by the Ethics ReviewCommittee at the hospital. You may be invited toparticipate in such a clinical trial, and if so, youwill be provided with a written Information Sheet.By taking part in a trial you may have access totreatments that are not currently approved inAustralia and will also be helping to advancemedical science and thus improve prospects forpatients in the future. Remember if you chooseto participate in a trial it should be your choice.If you choose not to participate you will receivethe standard treatment in use at the time.INFORMATION MANUAL30

THE LIVER TRANSPLANT UNITSECTION 17: OTHER POST-TRANSPLANT PROBLEMSYou may not have any problems after yourtransplant but most people experience at least afew minor or possibly more serious problems.These are some of the problems transplantpatients may experience:-InfectionYou will be given fairly high doses ofimmunosuppressant medications during yourearly postoperative period to overcome the riskof your body rejecting your new liver. This willmake you more susceptible to infection. You willbe monitored for the presence of any infectionon an ongoing basis while you are recovering inhospital following your transplant. Any infectionthat is of concern will be treated promptly withappropriate antibiotics.During the first few weeks following transplantthe most common sites of possible infection areyour chest, (particularly if you are not coughingand doing your breathing exercises) and yourwound.If you had a lot of ascites prior to transplant, thistends to persist for a short period after thetransplant operation. It will eventually disappear,but is prone to cause infection and leakage.Wound ComplicationsIf wound infections develop, treatment consistsof opening the wound, changing the dressings,and allowing healing to occur spontaneously.You will also require antibiotic therapy.Occasionally infection may develop in theabdominal cavity, if this should happen it wouldbe diagnosed and treated promptly. A surgicalprocedure may be required.DiabetesThere is an increase in the frequency of diabetesin the first year following transplant. This is dueto the side effects of two of the transplantmedications, in particular, prednisone andTacrolimus. This often settles down over time asthe doses of your immunosuppressivemedication are reduced.Drugs that lower blood sugar levels may berequired. This may take the form of tablets (oral31hypoglycaemic agents) or Insulin by injection.If it is likely that you will be discharged homerequiring regular Insulin injections, educationwill be provided by specialist Diabetic Sisters.Arrangements will be made for you to befollowed by the RPAH Diabetes Centre or yourown doctor.CMV InfectionPrior to the routine use of valganciclovir (Valcyte)after transplant, this was quite a commoninfection that could cause fevers, aches andpains and diarrhoea. Now it is extremelyuncommon early after transplant but may comeon weeks to months after stoppingvalganciclovir. If you get this infection, you willreceive anti-viral treatment (either oralvalganciclovir or intravenous ganciclovir) andmay require admission to hospital.Other possible post operative problemsThese include problems related to the flow ofbile from your liver, either a bile leak (whichusually results in abdominal pain) or thedevelopment of a stricture (narrowing) in one ofthe bile ducts which may cause abnormal livertests and jaundice. There may be problems withflow with the blood vessels going into the liver.These complications may require invasiveprocedures or even surgery to correct.Emotional changes to expectNot only does transplantation involve manyphysical changes to the body, but it also meansmany emotional changes. It is a tense, anxioustime for both patient and family while they livethrough the waiting period, the transplant itselfand often a prolonged recovery period. Along theway they may encounter and have to cope withmany problems as they occur.The drugs given produce physical side effectsthat can be distressing to patients as they facechanges in their body image and can alsocontribute to increased mood changes. Suchmood changes may be irritability, depressionand feelings of elation.High blood pressureHigh blood pressure may be caused by thetacrolimus/cyclosporin or prednisone. It this isINFORMATION MANUAL

THE LIVER TRANSPLANT UNITINFORMATION MANUALa problem you may require treatment withantihypertensive medication or alteration in yourdrug dosage.PCP (Pneumocystis)This is a lung infection that doesn’t hurt healthypeople even though we are exposed to it all thetime. When the immune system is modified bydrugs, this infection can cause a serious form ofpneumonia, especially in the first six monthsafter transplant. This is prevented by takingBactrim/Resprim three times a week for the firstyear following transplantation.OsteoporosisBone mineral density can decrease during thefirst 3 months after transplant, due to the highdoses of immunosuppressant medicationrequired to prevent rejection. This ‘thinning ofthe bones’ may result in fracture, particularly inthe vertebrae (back-bones) or the ribs. OralCalcium and Vitamin D supplements are given toprevent this. Other treatments are also availablefor patients at higher risk.MRSA Infection (Golden Staph)MRSA is a bacterial infection that can beacquired in hospital. It is a bacteria that isresistant to a number of antibiotics. If you shouldhappen to acquire this infection while inhospital, you may be treated by an intravenousantibiotic (vancomycin). To stop the spread ofthis infection, you will be nursed in a single roomor in a ward with other patients who have thisinfection. Visitors will be asked to wear protectiveclothing.VREVRE stands for Vancomycin ResistantEnterococcus. Enterococcus is a bacteria thatcan be found normally in the bowel. On rareoccassions it can go to other parts of the bodyand cause infection. Sometime VRE can befound in your body and not make you feel unwellor give you any signs or symptoms of infection.Most patients with VRE are colonised with thebacteria and do not have an infection. Patientswith VRE may be isolated from other patients toprevent the spread of bacteria.32Potential ongoing/long-term problemspost transplantProblems with Kidney functionRegular blood tests will monitor your kidneyfunction. Medication you are required to takefollowing your transplant, particularlytacrolimus/cyclosporin can cause deteriorationof your kidney function. Your renal function ismonitored in all your regular blood tests. Thetransplant team will adjust your medications tominimise the risk of kidney dysfunction. It is agood idea for you to maintain a good fluid intakeat all times, particularly in hot summer weatherto minimise any adverse effects your medicationregime may have on your kidney function.High cholesterol (hyperlipidaemia) andhigh blood pressureThese are common problems after transplant.Other risk factors, which may influence thedevelopment of hyperlipidaemia, include age,diabetes and obesity.Dietary reduction in calories and fat intake isrecommended, combined with exercise. Yourlipid (blood fat) levels will be monitored atregular intervals following your transplant. Yourblood pressure is also checked at each clinicvisit. Many patients require ongoing treatmentwith antihypertensive medication and yourdoctor may suggest the use of cholesterolloweringtherapy.Early recognition and treatment of high bloodpressure, control of hyperlipidemia, control ofobesity and good blood sugar control for diabeticpatients are important in preventing long-termcardiovascular problems, such as heartproblems or strokes.

THE LIVER TRANSPLANT UNITSECTION 18:OUTPATIENT VISITSFollowing discharge your progress will bemonitored in the Liver Transplant Clinic on 9 East.You will probably need to attend two to threetimes in the first week following discharge fromhospital, then once or twice a week for anotherweek or two, and then less frequently as timeprogresses. After one year from transplantationmost patients will only be required to come forclinic visits every 3 months. However, lifelongfollow-up is necessary.Preparing for your outpatient visits:1. Check your medicine supply to seewhether you have enough medicationuntil your next visit. If not, remember toget a new prescription while at the clinic.2. Do not take your morning dose ofCyclosporin/Tacrolimus (Neoral) until afteryour blood has been taken.3. Bring your MEDICATION CARD, so that itcan be updated.4. If necessary, write down any questionsyou have so that you remember to askthem while at the clinic.Post-op surgical appointmentOn discharge, you will be given an appointmentcard to visit the surgeon around 6 weeks afteryour transplant operation. On the same day youwill have a Doppler Ultrasound of your liverperformed on Level 2 of the Missenden MedicalCentre, 54-60 Briggs Street, Camperdown(Tel. No. 9550-4733). This appointment will alsobe made prior to discharge.33INFORMATION MANUAL

THE LIVER TRANSPLANT UNITSECTION 19:FOLLOW-UP MEDICAL CAREthinning of the bones, or who require ongoinguse of signficant doses of prednisone. These areusually performed every one to two years.INFORMATION MANUALDentist1. Routine dental care should bemaintained. However, gums may swellor bleed because of Cyclosporin therapy.2. You should make your dentist aware ofyour medications, particularly of yourCyclosporin regime.3. Cyclosporin may cause an overgrowth ofyour gums that will decrease when yourdosage is reduced.4. If you have your teeth cleaned or filledor require dental surgery, such as a toothextraction, or root canal work, you willneed to tell your dentist that you needantibiotics to prevent infection.OphthalmologistRoutine eye examinations are very importantbecause prednisone may cause a change inyour eyesight or blurry vision. You should alertyour eye doctor to all of your medications,especially your prednisone. It is recommendedthat you not change you glasses prescriptionuntil your doses of prednisone have stabilised.Pap smears and mammogramsWomen should continue to have second yearlypap smears and gynaecological examinations.Examine your breasts regularly, one week afteryour period and report to your doctor if anylumps develop. Mammograms should beperformed according to standardrecommendationsScreening for bowel cancerSome patients are at increased risk of bowelcancer after liver transplantation. In particular,patients with a history of Primary SclerosingCholangitis, Inflammatory Bowel Disease,previous polyps or bowel cancer or a strongfamily history of bowel cancer should undergoregular colonoscopy after transplant.Monitoring for osteoporosisRegular bone density scans (DEXA) arerecommended for patients with a history of34

THE LIVER TRANSPLANT UNITSECTION 20: TRAVELThe major aim of transplantation is to enable youto resume a normal or near-normal lifestyle. Thisincludes resuming work and enjoying leisureactivities.Many people want to take a holiday after theTransplant Team has given them clearance.This is both welcomed and encouraged.ALWAYSREMEMBER TOPLAN AHEAD.If you wish to travel, especially overseas or to aremote area, you need to make some extraplans. Check with the Transplant Team first,because there are special problems if you wantto travel in some countries.1. If travelling outside of Australia, you mustcarry a letter from your doctor detailingwhat medicine you are on, how much youare taking, and that the medicine is foryour personal use.2. You must leave all medicine in its originalpackaging.3. Ensure you have enough supply ofmedications to last for the duration ofyour holiday. You should carry extra incase some are destroyed. If travellingoverseas, put some medications in yourluggage and carry spare stock in yourhand luggage. This is in case of loss ortheft of luggage.4. You should make a note of where localhospitals are in case of a problem andhave a contact number for RPAH to givethem if you need to.5. NEVER travel with a depleted stock ofdrugs - this is both irresponsible anddangerous.6. You should travel overseas with someform of travel insurance that covers youfor illness associated with your transplantand for other illnesses and accidents. Youmight find it very difficult, if notimpossible, to obtain insurance coveragefor transplant-related conditions. Youshould be aware that overseas medicaltreatment can be very costly.7. Check with the doctors on the TransplantTeam before receiving any vaccinations.Transplant patients MUST NOT receivelive vaccines.35INFORMATION MANUAL

THE LIVER TRANSPLANT UNITSECTION 21: VACCINATIONSIf you are planning a holiday, please check withthe clinic about vaccinations.YOU MUST NOT RECEIVEANY LIVE VACCINES ATANY TIMELive vaccines:BCGYellow fever vaccineMMR (mumps, measles and rubella)vaccineVaricella-zoster virus vaccineSmallpoxOral polio (live) Sabin vaccineVaccines which you may have:Tetanus toxoidInactivated polio vaccine (IVP)Hepatitis B vaccineHepatitis A vaccineMeningococcal polysaccharide vaccineDiphtheriaInfluenzaPertussis (whooping cough)Pneumococcal vaccineCholera (in patients over 6 monthsof age)Typhoid (in patients over 12 monthsof age)If you come into contact with chicken pox orother viruses, notify the Transplant Teamimmediately.INFORMATION MANUALCheck with the doctors on the Transplant Teambefore receiving any vaccinations.We recommend that all patients have an annual‘Flu Shot’. This can be obtained from your GP.Pneumococcal vaccine every 5 years may alsobe recommended for some patients.36

THE LIVER TRANSPLANT UNITSECTION 22: AFTER DISCHARGEThe whole purpose of your transplant is to returnyou to a normal lifestyle. There are very fewrestrictions. Here are some points to note thatmight answer some questions you have aboutyour new lifestyle.Activity and exerciseThis is very important in maintaining youroptimum health. It increases energy, reducesstress, aids sleep, improves digestion and helpsyour emotional and psychological stability.Build up your exercising gradually from walkingto more strenuous activities, such as runningand cycling. Indoor/outdoor activities are limitedonly by threat of potential injury or limits ofphysical stamina. Swimming may be resumedafter about six months. Once you are dischargedyou are encouraged to return to your normalactivities. Your energy level will slowly increase.Each day you will find you can do more andmore. Moderation is the key. You may take longwalks or walk up and down stairs.Muscle weakness is common in most liverdiseases and it will be worse immediately afterliver transplantation. You should maintain aregular exercise program that is geared for yourindividual progress.Regular physical activity and exercise arenecessary post-liver transplant in order tomaintain normal weight, minimise thedestructive effects of prednisone on musclesand bones and to reverse pre-transplantdeconditioning. It will also increase energy levelsand fitness, reduce stress and help emotionaland psychological wellbeing.You must maintain a regular exercise program,progressed specifically to your own individualneeds.Exercise - GuidelinesFrequency – daily - you should aim to exerciseon a daily basis.Intensity - light to moderate - you should still beable to talk whilst exercising.37Avoid strenuous activities particularly in theinitial stages post-transplant. These can beresumed once your energy levels and physicalstamina have improved.Duration - up to 45min of continuous exercise -15-20 mins if exercise is more strenuous.Initially you may need to exercise for shorterperiods several times a day until you build upstrength and endurance.Type - walking is recommended;Walking is an easy, effective and inexpensiveform of exercise, associated with very fewinjuries. Other safe forms of exercise includeswimming and stationary cycling.Running/jogging/jumping and other high-impactactivities are not recommended due to theincreased risk and severity of injuries.Warm up/cool down;5 minutes of each is encouraged to help preventmuscle tears and unnecessary soreness withexercise. Gentle stretching is also encouragedprior to exercising.Sample of program progression:Week 1 walk 10minWeek 2 walk 15minWeek 3 walk 20minWeek 4 walk 30minWeek 5 walk 45min2 x day2 x day2 x day2 x day1 x day & thereafterRemember:i) start slowly & progress gradually;ii) a physiotherapist is available for furtheradvice.AlcoholPeople whose liver disease was caused byalcohol should never drink alcohol again.Alcohol should be avoided for the first year afteryour liver transplant under any circumstances.Alcohol is processed by the liver and mayproduce changes in your liver function tests.These changes can be confused with signs ofINFORMATION MANUAL

THE LIVER TRANSPLANT UNITINFORMATION MANUALrejection or liver infection. Moderate alcoholconsumption may damage the new liver.If you wish, you may have an alcoholic beverageto celebrate special occasions. Please limit yourintake to one to two glasses of wine orchampagne or one to two glasses of beer.People whose liver disease was caused byalcohol, or people who have a history ofexcessive alcohol use that is thought to havecontributed to their liver disease, should notdrink again. This is sometimes a difficult task,and issues surrounding life-long abstinenceshould be explored prior to transplant. If you feelyou are having difficulties complying with thisrequirement following transplant, it is veryimportant you discuss these issues with yourtransplant doctor or nurse who will arrangeappropriate support.Birth controlThe choice to have children is an importantdecision that is influenced by a number offactors that should be discussed with yourpartner, transplant physician, generalpractitioner and obstetrician/gynaecologist.Medications you are taking may have an effecton a developing foetus, therefore it is unwise toembark on an unplanned pregnancy.Mycophenolate (Cellcept) is of particularconcern in pregnancy and should not be usedunless absolutely necessary. Women receivingMycophenolate who are of childbearing potentialmust use effective contraception before, duringand for six weeks after receiving Mycophenolate.Female patients generally resume theirmenstrual cycle after liver transplantation. Highdoseprednisone may stop the menstrual flow,but ovulation (the time when you are fertile) willcontinue. Therefore, you may become pregnanteven though you are not yet having normalperiods, so birth control is necessary. Ask yourphysician for advice.Contact phone numbersIt is vitally important that you notify theTransplant Nurses on 9515 7263 or theReception Staff on 9515 7268 if you changeyour contact telephone number, eventemporarily. We sometimes need to notify you38urgently about blood test results and must havethe correct contact telephone numbers at alltimes. If you have an email address, you shouldensure we have it recorded.DietIf you are underweight, you need to gain weightto ensure that you have adequate nutritionalreserves for protection during any periods ofrejection or infection. Being overweightincreases the risk of developing other problems.Keeping your weight within an ideal range istherefore most important. The dietitian will beable to discuss with you what your target weightshould be and how to attain it.DrivingAll States and Territories in Australia have lawsabout reporting health conditions that mightaffect a person’s ability to drive safely. Theselaws have been created to protect public safety.The laws require drivers to report to the DriverLicensing Authority any permanent or long-termillness that is likely to affect their ability to drivesafely.Your doctor or other members of the transplantteam will not normally communicate directly withthe Driver Licensing Authority (RTA in NSW).However, your doctor will provide you withadvice about your ability to drive safely and canprovide a letter or report to take to the authority.The guidelines list a number of conditions thatdrivers MUST report to the Driver LicensingAuthority, if they wish to continue to hold adrivers license. These conditions include• If the person has chronic liver disease andclinical evidence of hepatic encephalopathy• If a person has had a liver transplantIn both conditions, a conditional license may begranted. Further information can be obtainedfrom the AUSTROADS website athttp://www.austroads.com.au.Most people can resume driving about six weeksafter the operation. Even if granted a conditionallicense, you should ask yourself the followingquestions before driving:

THE LIVER TRANSPLANT UNIT• Am I well enough to drive today?• Am I experiencing side-effects from mymedications that would interfere with mymanual dexterity, such as severe tremors,blurry vision or light headedness?• Am I experiencing significant discomfortaround my scar area that would stop mefrom being able to brake suddenly?Caution and restraint in this early post-operativeperiod will help assure your personal safety andthe safety of others.Emotional issuesAlthough you will have been looking forward tothe day when you leave the hospital, it is normalto feel slightly apprehensive and insecure. Thesefeelings usually only last a few days. Once yourealise that nothing awful is going to happenbecause you are not having your blood pressurechecked regularly, you will soon gain yourconfidence and independence.It may take time to adjust to your new healthyrole, not only in yourself and your capabilities,but also in your relationships with your familyand friends. They too have to adjust to acceptingand treating you as normal and healthy.At the same time, you may miss the constantattention you have received before andthroughout your transplant. It is important toremember that family and friends have beenunder enormous pressure as well.Do not self-medicate with anymedication other than thoseprescribed by your doctor.LiftingYou may not lift anything that weighs more than7kg (15lbs) - about the weight of an average bagof groceries - for eight weeks after your surgery.Liver Support GroupThe Liver Support Group does valuable work forliver patients. It also offers the chance for liverrecipients and their families to get togethersocially. Ask at the clinic for more informationor go to the websitehttp://www.liversupportgroup.org/.An Application Form to join the Liver SupportGroup can be found on the website and is alsoincluded in the back of this Manual. Pleasephotocopy it or tear it out if you want to join.Nursing care after dischargeWhen a patient goes home after a transplant it isvery rare for them to need full time nursing care.It may be necessary for a community nurse tovisit to do daily wound dressings. The nursingstaff will arrange this before you are discharged.Apart from that, you should be well enough to domost things, like showering and dressingyourself.Herbal remediesTransplant patients are advised not to take anyherbal remedies as abnormalities of LiverFunction Tests have been reported after use ofcertain herbal preparations, while the effects ofmany herbal preparations on the liver are notknown.There have been a number of rejection episodesreported in patient’s taking the herbalpreparation “St. John’s Wort”, which manypeople take for depression. Valerian is anotherpreparation which is known to causeabnormality in liver function tests.These preparations may interact with theabsorption or metabolism of yourimmunosuppressive medications,tacrolimus/cyclosporin and altering your bloodlevels.39School and workFollowing your transplant you should be able toreturn to your normal lifestyle. Most people areable to return to school or work. You will knowwhen you are ready for this. Going back to workpart-time, if possible, is a good way to build upyour stamina.You will be advised at the clinic about yourfitness for work. Individual circumstances willvary.Sexual activitySexual activity can be resumed as soon as youfeel able. It is a good form of exercise! It maytake a while to regain confidence and your sexdrive, partly due to your medications and alsoyour previous feelings and attitudes fromINFORMATION MANUAL

THE LIVER TRANSPLANT UNITexperience of your illness. Please feel that youare able to discuss any concerns or worries withmembers of the Liver Transplant Team.Skin cancerThere is a much higher risk of skin canceramongst all transplant patients. Therefore it ismost important to avoid sunlight for prolongedperiods of time. Wear long sleeves and a hat atall times when outdoors and avoid being out inthe sun between the hours of 11.00am to3.00pm daylight-saving time and 10.00am to2:00pm in Eastern Standard Time. Apply SPF15or higher sun protection cream or lotion to anyexposed areas of the skin. If you are sittingoutdoors, you should sit in the shade.COMPLAINTS & FEEDBACKMaking a complaint will not affect your right toquality service and may help us to improve ourservice. If you feel there is difficulty in resolvingyour issue, please contact the PatientRepresentative on (02) 9515 5115. Positivefeedback is encouraged and welcomed.INFORMATION MANUALSportYou may wish to get involved in sport again. Ifyou do, do it gradually. Ask at the clinic for moreinformation about ‘come and try’ days withTransplant Australia (see below).Transplant AustraliaTransplant Australia activities include sports,social events, weekends away and fund raisingactivities. Transplant Australia organises theTransplant Games, held nationally andinternationally. Phone: (02) 9531 2589 or visitwww.transplant.org.auREMEMBRANCE AND THANKSGIVINGSERVICE - RPAHThe Remembrance and Thanksgiving Service isheld annually at RPAH – usually in February.This service is held for anyone who has beentouched by organ donation or transplant.ANNUAL ECUMENICAL ORGAN DONORTHANKSGIVING & REMEMBRANCESERVICEThe Organ Donor Thanksgiving andRemembrance Service is held annually – usuallyin May. This service is held for anyone who hasbeen affected by organ donation or transplant.40

THE LIVER TRANSPLANT UNITSECTION 23:COMMON TESTS PERFORMED INPEOPLE WITH LIVER DISEASEOR AFTER TRANSPLANTUltrasound - This is the most commonly usedtechnique to get a picture of the liver and bileduct system. Ultrasound involves using atransducer or handpiece to generate soundwaves, which are bounced off the liver toproduct an image of it on a television screen.In this way, ultrasound can show how big theliver is and whether there are any changes,lumps or areas of abnormality. It also shows thesize of the bile ducts and whether they areblocked. If necessary, ultrasound can be usedto measure blood flow through the veins andarteries supplying the liver (doppler ultrasound).Ultrasound is done after six hours of fasting.It is an easy and painless test and does notinvolve x-rays.CT scan (Computed Tomography) - Inthis procedure, a series of x-rays are takenwhich a computer builds into a threedimensionalpicture of the area underinvestigation. The liver, blood vessels, gallbladder, bile ducts and nearby organs such asthe pancreas, spleen and kidneys can be seen,as can any cysts or tumours. It is usual to needto fast for 4 hours before the test. Just before thetest is performed, you may be asked to drink aspecial liquid so that the stomach and intestinesare more easily identified. The radiologist mayinject a dye into the bloodstream to obtain aclearer picture of blood vessels. This dye maycause an allergic reaction in some people. If youknow you are allergic to iodine or contrast dye,you should notify your doctor. If your kidneys arenot functioning normally, your doctor maydecide to perform the study without the injectionof dye. A CT scan takes about 45 minutes and isperformed lying down in a comfortable position.Angiogram - This test is not required in allpatients. It involves passage of a fine catheterinto the artery in the groin, which is then passedinternally up to the artery supplying blood to the41liver. Contrast dye is injected through thecatheter and x-ray pictures are taken of theblood supply of the liver. In patients withsuspected or known liver cancer, this test maybe combined with a CT scan.MRI / MRCP (Magnetic ResonanceImaging) - MRI is another way of takingpictures of the liver and other internal organs,and does not involve x-rays. MRCP is a specialform of MRI that allows examination of the bileducts without insertion of any tubes or catheters.For an MRI scan, you have to lie on a narrowbed that slides inside a tunnel. People withclaustrophobia (fear of closed spaces) may findthis test difficult.ERCP (Endoscopic RetrogradeCholangio - Pancreatography) - This testis not required in all patients. It is a special testfor examining the bile ducts. An endoscope ispassed down through the mouth and stomachand into the upper part of the small intestine.A special fluid that shows up on X-ray is theninjected into the opening of the main bile duct atthe point where it drains into the small intestine.The resulting x-ray picture is used to diagnosecertain diseases affecting the bile ducts.Additional procedures can be performed at thesame time, such as removal of bile duct stones,or insertion of a plastic tube (stent) if bile flow isimpeded. ERCP may be associated withcomplications. You should discuss these riskswith your doctor.PTC (Percutaneous TranshepaticCholangiogram) - With the use of sedation orlocal anaesthetic, a small needle or catheter ispassed into the bile ducts through the skin andliver. Pictures are taken of the bile ducts. Thisprocedure allows access to the liver so thatprocedures, such as treatment of bile ductnarrowing, can be performed.Endoscopy - The inside of the oesophagus(gullet), stomach and upper small bowel can beexamined using a flexible telescope called an“endoscope”. This procedure is done using mildsedation injected into a vein and is usually notunpleasant. A similar device called a“colonoscope” is used for examining the largeINFORMATION MANUAL

THE LIVER TRANSPLANT UNITbowel via the anus. Endoscopy is commonlydone before transplantation to check for thepresence of varices, ulcers and cancer of thegastrointestinal tract. Your doctor will discuss thespecific risks of an endoscopic procedure.Liver biopsyA liver biopsy involves collecting a small sampleof tissue the size of half a matchstick from yourliver by passing a needle through the skin intoyour liver. The sample is then examined under amicroscope.It is an important way that your doctor candetermine the cause of a liver problem, andassess the severity of any damage. Liver biopsyusually requires admission to hospital for theday, and is generally performed by agastroenterology registrar or radiologist during anultrasound or CT scan. You lie flat on your backin bed as the doctor applies antiseptic to theskin over the right side of the rib cage then injecta local anaesthetic. The biopsy needle is thenpassed briefly through the skin and into the liverbefore being removed. The entire proceduretakes a few minutes and generally causes onlyminor discomfort. Liver biopsy may occasionallybe required prior to transplant, and is notuncommonly required after transplant if there isdeterioration of liver blood tests. The biopsy is acritical test for assessing rejection, hepatitis, orother causes of liver disease.INFORMATION MANUAL42

THE LIVER TRANSPLANT UNITAppendix A:GLOSSARYAcute: Occurring rapidly - commonly used by thepublic to convey seriousness or urgency. In medicalterminology it only refers to the time course of aproblem.Acute hepatitis: Acute inflammation of the liverwhich is usually due to viral infection.Albumin: One of the most important proteins madeby the liver. Low albumin levels in the blood usuallyindicate poor liver function.Auto-immune: Immunity misdirected against thebody instead of against an invading infection.Auto-immune hepatitis: A form of chronichepatitis which occurs when the body’s immunesystem attacks its own liver cells.Autosomal recessive inheritance: Aninherited problem which occurs only when aparticular inherited gene is inherited from bothparents.Bile: Yellow-green fluid produced in the liver andstored in the gall bladder. Bile helps the body breakdown fats and digest fat-soluble vitamins.Alcoholic liver disease: Liver damage, causedby excessive consumption of alcohol, ranging fromtoo much fat in the liver to cirrhosis.Alpha-fetoprotein: A protein normally present inthe foetus but occurring in high levels in primary livercancer.Alkaline phosphatase: An enzyme normallymade by bile duct cells. If the bile duct is blocked,the level of alkaline phosphate in the blood rises.Aminotransferase enzymes: Proteins thatoccur normally in liver cells which are released inincreased amounts into the bloodstream when cellsare damaged. Two of these enzymes - alanineaminotransferase (ALT) and aspartateaminotransferase (AST) - are commonly measured inliver function tests.Anaemia: A condition in which the blood isdeficient in red blood cells or oxygen-carryingproteins.Antibody: Part of the immune system that helps thebody fight infection and foreign substances.Antigen: A substance foreign to the body (usually aprotein) which causes the immune system toproduce antibodies.Anti-viral drugs: Drugs used to treat viralinfections including viral hepatitis, CMV and herpes.Ascites: Uncomfortable accumulation of fluidcausing abdominal swelling. This occurs when theblood flow through the liver is obstructed. Ascitesoften occurs with cirrhosis of the liver. It may persistfor some weeks after successful liver transplant.43Bile acids: Cholic and cheno deoxycholic acidsmade in the liver from cholesterol.Bile ducts: Tubes which carry bile from liver cellsto the gall bladder and duodenum.Bile salts: Sodium and potassium salts in bileacids. Produced in the liver, secreted into the bileand delivered to the intestine where they help thedigestion and absorption of fats.Biliary atresia: Congenital condition in which bilefrom the liver cannot reach the intestine because thebile ducts have developed poorly or not at all.Bilirubin: The breakdown product of old red bloodcells excreted by the liver. Bilirubin is normallyexcreted in bile. If this does not occur, theconcentration of bilirubin in the blood rises and leadsto jaundice.Blood pressure: The pressure of blood in thearteries. For blood to circulate through the body, thecirculatory system must be under pressure to forceblood through the system. When blood pressure ismeasured, the higher number, called the “systolic”,refers to blood pressure when the heart iscontracting. The lower number, the “diastolic”, iswhen the heart muscle is relaxed.Blood products: A general term for differentcomponents of blood which can be transfused intopatients to replace various deficiencies.Bone marrow cells: The cells in the bone wherered & white cells and platelets are made.Cholestasis: Failure of bile to flow from the liverthrough the bile ducts.INFORMATION MANUAL

THE LIVER TRANSPLANT UNITINFORMATION MANUALChronic: Occurring over a long period of time. Thisterm does not refer to the severity of a process, onlyits duration.Chronic active hepatitis: Long-term liver injurydue to inflammation of the liver.Chronic viral hepatitis: Chronic infection of theliver due to the hepatitis viruses B and C.Cirrhosis: The end stage of chronic liver diseasefrom any cause. The liver is scarred and its functionmay be significantly impaired.Clotting factors/proteins: Substances mademainly in the liver to help the normal clotting ofblood. The ability of blood to clot is controlled by thepresence of clotting proteins. Most of these proteinsare made in the liver and exported into the blood.Declining liver function results in reduced clottingpower. Patients with liver disease often have bleedingproblems and lack of clotting factors is one of thereasons for this.Creatinine: A product of muscle metabolism that isexcreted by the kidneys. Creatinine level serves as avery good indicator of kidney function.Cross matching: A test of compatibility betweenthe potential donor’s and prospective recipient’sblood.Cytomegalovirus (CMV): A very common virusthat harmlessly infects many normal people. Itcauses lots of trouble in transplant patients becausethe drugs that prevent rejection of the liver allow thisvirus to be active. Virus activity can effect the liver,blood and eyes. It can be treated if necessary with adrug called Ganciclovir.Coma: A state of drowsiness followed by loss ofconsciousness. May occur in liver failure.Computer Assisted Tomography (CT scan):An X-ray technique using a computer reconstructionof multiple images of the body.Corticosteroids: Drugs used to suppressinflammation, such as prednisolone, prednisone orhydrocortisone.Cryptogenic: Literally means “unknown cause”.Some cases of liver cirrhosis have no known causeand are given the diagnosis “cryptogenic cirrhosis” to44distinguish them from other known causes ofcirrhosis such as alcoholic cirrhosis.Cyclosporin (Neoral): A very important drugwhich virtually all transplant patients now receive.Its function is to prevent rejection of the liver by thebody’s immune system.Cytotoxic: Damaging to cells, for example drugsused to destroy cancer cells.Defective virus: A virus which needs the help ofother viruses to grow, eg. hepatitis D.Dehydration: Loss of water from body cells.Diabetes mellitus: A condition of abnormalglucose metabolism. Blood glucose levels increasedue to the lack of or low effectiveness of the hormoneinsulin. Also affects the way the body uses proteinsand fats.Donor liver: The liver provided to the recipientin a liver transplant operation.Donor: Someone who provides an organ fortransplantation.Doppler Ultrasound: An easily performed,painless test that is often performed after livertransplantation and shows whether or not the bloodflow to and from the liver is normal.Duodenum: The first part of the small intestinejoins the stomach to the jejunum.Electrolytes: Minerals in solution in body fluids.The major electrolytes, sodium, potassium andchloride, influence the distribution of water in thebody. Magnesium and calcium are also electrolytes.Encephalopathy: Confusion or unconsciousnessthat can occur when someone has advanced liverfailure or cirrhosis. It can be treated, but indicatesthat the liver disease is becoming severe.Endotracheal tube: An airway tube insertedthrough the mouth leading to your windpipe to helpyou breathe during surgery.ERCP: A special test for examining the bile ducts.An endoscope is passed down through the mouthand stomach and into the upper part of the smallintestine. Fluid that shows up on X-ray is then

THE LIVER TRANSPLANT UNITinjected into the opening of the main bile duct at thepoint where it drains into the small intestine. Theresulting X-ray picture is used to diagnose certaindiseases affecting the bile ducts.Fatty liver: Excessive deposit of fat in the liver.Fetor: A sweet smell on the breath of liver patientsthat results from an abnormal build up of certainchemicals in the blood.Fibrinogen: A protein factor important in bloodclotting.Fibrosis: Formation of excess fibrous (scar) tissuein an organ such as the liver.Flap: An uncontrollable jerking of the handssometimes seen in advanced liver disease. A flapindicates poor liver function.Foley catheter: A tube inserted into the bladder todrain urine.Gastroenterologist: A physician who specialisesin treating diseases of the digestive system and liver.Glucose: A type of sugar found in the blood.Graft: Your new liver.Haematemesis: Vomiting up of blood. May resultfrom bleeding from varices or a peptic ulcer (seebelow).Hepatitis: Acute inflammation of the liver oftencaused by viruses, drugs, alcohol or toxins.Hepatitis viruses: Viruses causing inflammationof the liver.Hepatocytes: Liver cells.Hepatologist: A physician who specialises in liverdiseases.Immune system: The body’s natural systemdefending itself from viruses, infections or any foreignbody (such as a new organ).Immunosuppressives: Drugs used to reduce thebody’s defence mechanism, the immune system.These drugs keep the body from rejecting thetransplanted organ, but they also reduce the body’sability to fight off infection.Immunosuppressive medication: A drug thatsuppresses the body’s immune system. It helpsprevent the recipient’s own immune system fromattacking and rejecting the new liver.Imuran: Trade name for azathioprine (see above)Inflammation: The end result of the reaction of theimmune system to any foreign infection.Interferon: A protein produced by the immunesystem to fight viral infection. It is given as aninjection to treat chronic hepatitis C.Haemochromatosis: Deposition of excess iron inthe liver, skin, joints and pancreas. This is aninherited disease in which large amounts of iron aretransported from the intestine, accumulate in theliver, and cannot be processed normally. Iron buildup affects other areas of the body as well as the liver.Haemoglobin: The red pigment in blood cells thatcarries oxygen to the tissues.Hepatic: Referring to the liver.Hepatic artery: The artery which carries blood tothe liver. The portal vein is the other main source ofblood flow to the liver.Hepatic vein: The vein which drains blood fromthe liver towards the heart.45Intravenous (IV): The infusion of fluids, blood ordrugs into a vein.Jaundice: Yellow colour of the eyes and skin due toexcess bilirubin in the blood. Usually occurs becausethe liver fails to excrete bilirubin in the normalmanner due to liver failure or obstruction to bile flow.Lipids: Another term for fats.Liver: The largest organ inside the body with manyfunctions, including manufacturing proteins andblood clotting factors, excreting bilirubin and storingiron.Liver biopsy: The process of removing andinspecting a small sample of liver. A needle isinserted into the liver and a tiny piece removed tobe inspected under a microscope.INFORMATION MANUAL

THE LIVER TRANSPLANT UNITINFORMATION MANUALLiver cancer: Malignant cells in the liver whetherfrom a primary cancer (which originates in the liver),or, more commonly, a secondary cancer (whichspreads from somewhere else in the body). Primaryliver cancer usually arises in a liver that is alreadydamaged through cirrhosis. Primary liver cancer mayalso be called hepatocellular carcinoma or hepatoma.Liver failure: Failure of the liver to carry out itsnormal function. May result in jaundice, ascites orcoma.Liver function tests (LFTs): Blood tests tomeasure the function of the liver. These are bloodtests that are ordered regularly by liver doctors. Theygive an indication of how well the liver is working andhelp sort out the type of problem that may bepresent. They are done daily immediately followingtransplantation. Abnormalities can indicate rejection,infection, side effects from drugs and many otherthings. Experience is required to determine what theresults mean. Abnormal results do not necessarilyimply that a serious problem is present.Liver transplantation: The surgical removal ofa diseased liver and its replacement by a donor liver.Noncompliance: Failure to take medicine asprescribed or follow the advice of medical andnursing staff.Obesity: Excess accumulation of body fat.Oedema: Swelling of the ankles and legs due to anabnormal collection of fluid in the body and adeficiency of the blood protein albumin (see above).This is an effect of chronic liver disease.Oesophagus: The tube between the mouth andstomach. Also known as the gullet.Osteoporosis: A decrease in the density of boneassociated with advanced liver disease and also withprolonged corticosteroid use. Bones with osteoporosisare more likely to fracture.Platelets: Cells in the blood that help the blood toclot. Numbers may fall in cirrhosis.Pneumonia: Inflammation of lung tissue (differentfrom bronchitis).Portal hypertension: High blood pressure in theportal venous system that carries blood from the46intestine, spleen and pancreas to the liver.Portal hypertension can result in ascites or bleeding.Portal vein: A large vein which carries the majorblood supply to the liver from the intestine. Carriesnutrients resulting from digestion of food.Prednisone: A steroid hormone taken by mosttransplant recipients to help prevent rejection.Prevalence: The number of people with a givendisease at a given time.Prophylaxis: The prevention of a problem. Forexample, antibiotics are often given to transplantpatients in the first year after their operation toprevent Pneumocystis pneumonia - a complicationof the anti-rejection drugs.Red blood cells: Blood cells which carry oxygenattached to haemoglobin.Small intestine: Part of the gastrointestinal tractthat includes the duodenum, jejunum and ileum.The major site for digestion and absorption of food.Spider naevi: Small red skin spots with spideryprojections that indicate the presence of liver disease.Spleen: An organ which breaks down ageing bloodcells and is also an important part of the immunesystem.Tacrolimus (Prograf): Most commonimmunosuppressive drug used after liver transplant.Thrombosis: The formation or presence of a bloodclot.Tissue typing: A blood test done to evaluate thecloseness of tissue match between organ donor andrecipient (done before transplant).Transfusion: Giving blood or blood products (suchas platelets or plasma) through a vein.Triglyceride: A type of body fat or oil made up ofglycerol with three fatty acids attached. Triglyceridelevels in blood rise after a meal, falling again as thefat is used for energy or stored as body fat.A continuing high level may occur with high alcoholintake or diabetes.Vaccination: A technique to produce protectiveantibodies against an infection by exposing the

THE LIVER TRANSPLANT UNITimmune system to a vaccine made of living or deadorganisms.Valacyclovir (Valtrex): An anti-viral drug thatworks against the virus that causes cold sores.Valganciclovir (Valcyte): An anti-viral drug thatworks against a virus called CMV.Varices: Large veins in the oesophagus which maydevelop due to portal hypertension, and which placethe individual at significant risk of bleeding into theoesophagus or stomach.Viral hepatitis markers: Antigens andantibodies measured by laboratory tests to indicatethe presence or absence of viral infections that causeliver disease.White blood cells: Elements of blood that fightinfection.Wilson’s disease: A disease due to excessivestorage of copper in the liver and brain.47INFORMATION MANUAL

THE LIVER TRANSPLANT UNITAppendix B:ROYAL PRINCE ALFRED HOSPITALAUSTRALIAN NATIONAL LIVER TRANSPLANTATION UNITin association with the RPAH Department of Upper Gastrointestinal Surgery and the AW Morrow Gastroenterology and Liver CentreDirectors: Surgeons: Hepatologists:Prof GW McCaughan Dr PJ Gallagher Prof GW McCaughanDr MD Crawford Dr DJ Verran A/Prof S StrasserDr MD CrawfordA/Prof D KooreyProf RDM AllenDr N ShackelDr H PleassDr D BowenDr D JosephDr Gokulan PavenDr C SandroussiDr M Stormon (Paed)Dr A Shun (Paed)Dr G Thomas (Paed)CONSENT FOR A LIVER TRANSPLANT OPERATION…………………………………………………………….. request that a liver transplant operation be performedon me. The nature of the operation has been explained to me by Professor/Dr …………………………...I have been provided with a copy of the Patient Information Book on Liver transplantation.The process of organ donor selection and retrieval has been explained to me. I am aware that the donor livers maynot be entirely normal. Every effort is made to screen the donor for transmittable disorders. There can be noguarantee that the donor does not have such a disorder (including infection or cancer). Donor livers can sometimes have fatty deposits or other abnormalities, which may not be recognised before implantation. These cancause slow initial function, and occasionally transplanted livers do not function adequately, leading to a need forre-transplantation. I am aware that it is usual practice of the ANLTU to use organs from donors with primarytumours localised to the brain, as the risk of tumour transmission in these cases is extremely low.I am aware that in some circumstances I could be transplanted only a portion of a donor liver, if the organ hasbeen thought suitable for a split procedure for use in a child as well as an c adult. I understand that I may receivea liver from a donor after cardiac death and this is likely to have a slightly higher rate of initial non-function orlong term bile duct narrowings.The development of complications from the operation has been discussed with me. These include infection,bleeding, poor function and rejection of the liver.I understand that liver transplantation is a treatment for liver failure and not a cure and that I will need to takedrugs to suppress rejection indefinitely. These anti-rejection drugs have side affects specific for each drug andthese have been explained to me. Patients treated long-term with these agents are at increased risk of infection andcancer development.I understand there is a possibility (currently about 1 in 10) of death during the first year following the transplantoperation. I am satisfied with the explanations regarding the risk of liver transplantation that I have received.INFORMATION MANUALI have been informed that the details of my liver disease and of my transplant procedure will be discussed withrelevant health professionals and that these details will be included on clinical databases run by the livertransplant unit, which will be used for clinical audit and research purposes. I am also aware that tissue taken fromthe organ at the time of the operation for clinical management reasons may also be utilised for research.I understand that signing this consent form does not interfere with my legal rights in the event of negligence.SIGNED:………………………………………WITNESS:…………………………………….K:LIVER/LETTERHEADS/Ltx Consent Form_Jan09DATE:……………………Secretariat: Transplantation Services, Level 9 East, Royal Prince Alfred Hospital, Missenden Road, Camperdown NSW 2050Telephone: 02 9515 7275 Facsimile: 02 9515 3606Email: anltu@email.cs.nsw.gov.au http://www.anltu.com.au48

THE LIVER TRANSPLANT UNITAppendix C:CONTACT NUMBERSLiver Transplant Sisters:Monday to Friday - 8am-4.30pmSr Margaret Gleeson9515 7263 or 9515 6111 and page no 80883Email: Margaret.Gleeson@sswahs.nsw.gov.auSr Fiona Burrell9515 6408Email: Fiona Burrell@sswahs.nsw.gov.auSr Allison Hinckson9515 7801Email: Allison.Hinckson@sswahs.nsw.gov.auLiver Transplant Registrar:Gastroenterology Registrar:Monday to Friday – 8am-5pm. 9515 6111 and pageAfter hours and Weekends . 9515 6111 and pageChaplain 9515 6111Clinical Nurse ConsultantDietitiansSr Jennifer Watson (Theatre Sister)9515 7275 and page no 86542Ms Helen Vidot & Ms Joanne Heyman9515 8053Clinic appointments 9515 7268Liver TransplantMonday to FridayAdministration Centre 9515 7275Nurse Unit Manager 9515 7543PsychiatristDr Robert Gribble9515 6111 and page no 80135Psychologist Ms Suzanne Roche – 9515 7426Social Worker Through Switch on 9515 6111Transplant Coordinator:Claire Baker9515 7274Email: Claire.Baker@sswahs.nsw.gov.au49INFORMATION MANUAL

THE LIVER TRANSPLANT UNITAppendix D:Membership ApplicationName: __________________________________________Address: __________________________________________Phone:(Home)__________________________________________Please tick the appropriate box:(Work)__________________________________________Email: __________________________________________Yes, I would like to become a member, please find payment formembership.I would prefer not to become a member, however I would like to be keptinformed about the group.I would prefer not to become a member, please do not contact meagain.To enable us to produce a newsletter that is of both use and interest, please take a fewmoments to jot down some notes or questions that you may have;-INFORMATION MANUALMargaret McKinlayPresidentLiver Support Group4 Berowra RoadMount Colah NSW 207950

THE LIVER TRANSPLANT UNITThe Liver Support Group Inc was founded on the 10th 0f November 1992.It was established to aid transplantations patients with emotional supportwhere possible.Over the past 11 years the group has grown to provide the following services.The goal of the group today is to;-• Provide peer support to liver patients and their families.• Demonstrate the quality of life that may be obtainable after a liver transplant.• Offering opportunities to talk and meet with others that have experienced what they are or will beexperiencing.• Offering support to carers and their families.• Providing some financial assistance.• Moral support.• Practical support – many members have valuable expertise in various fields.• Raising funds to aid research projects.• Heighten the community’s awareness of Transplantation within Australia.• Provide a regular Newsletter to keep people informed, informal meetings, be it face to face or byphone or email.• The Liver Support Group Website is currently under construction and upon its completion will be asimple way for people to keep up to date and in contact with other people in the same position.How do we achieve this?• Through various fundraising activities, such as raffles and the monthly stall.• Provide a regular Newsletter to keep people informed and informal meetings, be it face to face orby phone or email.• Canvass for Corporate sponsorship• Assist in patient education schemes/days.Cost of Membership.The cost of membership is $5.00 per family per calendar year, (1st January to 31st December).NOTE: to be able to vote within the group it is necessary to be a financial member. Membership formsshould be completed and cheques made to The Liver Support Group and forwarded to the addressbelow.Contact Details.If you would like further information on the group or becoming a member of the group, please contact:Margaret McKinlay – PresidentEmail:mailto:president@liversupportgroup.orgWeb:http://www.liversupportgroup.orgAll mail can be forwarded to:The Liver Support Group4 Berowa RoadMt Colah, NSW 207951INFORMATION MANUAL

THE LIVER TRANSPLANT UNITAppendix E:Transplantation Research at Royal Prince Alfred HospitalThe RPA Transplant Institute was established in 2006 to formally recognize the interdependence of bestclinical practice and clinically based research at all levels.The scope of our research interests at RPA is as varied and as broad as our multi-disciplinary careteam. Our central research theme is the provision of greater access to better and safer transplantation,and revolves around the shortcomings of the following two truths about current clinical transplantpractice:1. More people can benefit from transplantation than we have kidneys or livers to transplant.2. The success of transplantation has been made possible by the combination of powerful drugs tocontrol transplant rejection and our sophisticated ability to diagnose and treat the problems causedby those drugs.Our MissionThe RPA Transplant Institute is the research heart of Transplantation Services at RPA. Our mission is toconduct high quality scientific and clinical research that will lead to cures for diseases and findsolutions to one of the key challenges facing transplantation medicine, the need forimmunosuppressant therapy and the side effects it brings.INFORMATION MANUALWe aim to advance the knowledge of transplant healthcare professionals and create treatments that willcontribute to prolonged, improved health for all transplant patients.Through the education of patients, physicians and the wider community we will create a greaterunderstanding of transplantation and the significance of transplantation as a critical means ofprolonging life.How can you help?The RPA Transplant Institute has unparalleled clinical facilities and transplant results. Our challengingclinical service provides a stimulating environment for research. The endeavors of our productiveclinical and laboratory research team require ongoing financial or equivalent support. Also, it is vital thatwe continue to grow and improve. Your donation will help us to attract and train the best and mostenthusiastic young clinicians and scientists, just as we have done for the last 40 years.Please ask the clinic staff or your transplant doctor if you would like more information about the RPATransplant Institute52

THE LIVER TRANSPLANT UNITProfessional WebsitesPlease note that some of these websites are international sites. Organ allocation is country specific.For information on organ allocation in Australia please talk to your doctor or the Transplant Coordinator.A. Liver TransplantationLiver Transplantation: Medline Pluswww.nlm.nih.gov/medlineplus/livertransplantation.htmlAustralia and New Zealand Liver Transplant Registrywww.anzltr.orgDigestive Diseases: Liver Transplantation – Medicine Netwww.medicinenet.com/liver_transplant/article.htmB. Liver DiseaseAustralian Liver Foundationwww.liver.org.auLove Your Liverwww.loveyourliver.org.ukAmerican Liver Foundationwww.liverfoundation.orgHealth Insitewww.healthinsite.gov.au/topics/Liver_DiseasesCanadian Liver Foundationwww.liver.caChildren’s Liver Disease Foundationwww.childliverdisease.org53INFORMATION MANUAL

THE LIVER TRANSPLANT UNITNotesINFORMATION MANUAL54

Missenden Road, CamperdownHospital Phone: 02 9515 6111AUSTRALIAN NATIONAL LIVERTRANSPLANTATION UNITAVS 69069