liver transplant program guide for patients · 1 liver transplant program guide for patients. the...

LIVER TRANSPLANT PROGRAM

GUIDE FOR PATIENTS

TABLE OF CONTENTS

SECTION PAGE

INTRODUCTION 1

THE SHANDS LIVER TRANSPLANT TEAM 2

HISTORY OF LIVER TRANSPLANT 2

THE LIVER 3

LIVER DISEASE 3

TRANSPLANT EVALUATION 5

ACTIVATION PROCESS 8

PRE-TRANSPLANT FOLLOW-UP 9

TRANSPLANTATION 10

TRANSPLANT TYPES 11

THE TRANSPLANT SURGERY 11

WHAT TO EXPECT AFTER SURGERY 12

THE SICU (SURGICAL INTENSIVE CARE UNIT) 12

RECOVERY AND EDUCATION 13

RECOVERING ON THE TRANSPLANT UNIT 13

EDUCATION 13

TRANSPLANT MEDICATION 14

COMPLICATIONS AND SIDE EFFECTS 14

POST-TRANSPLANT FOLLOW-UP 16

GLOSSARY 17

THE PRE-LIVER TRANSPLANT PROCESS 18

SHANDS ADULT LIVER TRANSPLANT SUPPORT GROUP 19

INTRODUCTIONWelcome to the Liver Transplant Program at Shands at the University of Florida (SUF).

We are located: 1600 SW Archer Road PO Box 100271 Gainesville, FL 32610-0271

Telephone: 352.265.0754Toll Free: 855.5.TRANSPLANT (855.587.2677)Fax: 352.265.1053 – Pre-Transplant 352.265.0571 – Post-Transplant

Website: www.UFandShands.org or https://ufandshands.org/transplant-center/liver

This handbook was designed to: •Giveyouanoutlineofthelivertransplantprocess•Answersomecommonlyaskedquestions•InformyouandyourfamilyabouttheShandsTransplantCenter•Helpyoutoknowwhattoexpectafteryourtransplant

Please read this handbook carefully. If you have any questions, please call your transplant coordinator.

1 LIVERTRANSPLANTPROGRAMGUIDEFORPATIENTS

THE HISTORY OF LIVER TRANSPLANT

TRANSPLANT SURGEONSJeffery Fair, MD Surgical Director of Liver TransplantKenneth Andreoni, MDBrendan Boland, MD Ivan Zendejas, MD

PHYSICIANS ASSISTANTValerie Greene, PA-C

HEPATOLOGYRoberto Firpi, MD, MS Medical Director of Liver TransplantRoniel Cabrera, MD, MSVirginia C. Clark, MD, MSAlpna Limaye, MDGiuseppe (Joe) Morelli, MDDavid R. Nelson, MDConsuelo Soldevila-Pico, MDAmitabh Suman, MD

CLINICAL PSYCHOLOGYRobert Guenther, PhD

FINANCIAL COUNSELINGGwen Bradley

PHARMACYJohn William Harbilas, PharmDJoy Wright, PharmD

THE SHANDS LIVER TRANSPLANT TEAM

LIVERTRANSPLANTPROGRAMGUIDEFORPATIENTS 2

ADULT POST-TRANSPLANT COORDINATORSMojdeh Bannister, RN, BSNCheryl McGinnis, DNP, ARNP-BC, CCTCLaura Schoonmaker, RN, MSN, CCTCKris Wynne, RN, BSN

ADULT PRE-TRANSPLANT COORDINATORSAmy Camire, RN, BSNKatie McDowell, RN, BSN, CCTCTree Kasper, RN, MSN, CCTC

PROGRAM MANAGERLe Jones, RN, MSNc, CCTC

TRANSPLANT ASSISTANTSShelly DampierTheresa ElliottStephanie GreenDiane GrillJeri MuseDonna O’DonnellDru’anne Skinner

SOCIAL WORKERSLisa Rule, LCSW, CCTSWKelli Walker, LCSW

ThefirstsuccessfulhumanlivertransplantwasperformedattheUniversityofColoradoin1963.Sincethattime,theresultsoflivertransplantationhaveimprovedandrecipientsoflivertransplantsarenowachievingexcellentsurvivalrates.Therisingsuccessoflivertransplantsoffersnewhopetopatientssufferingfromend-stageliverdisease.

TheShandsTransplantCenterattheUniversityofFloridawasfoundedin1966whenDr.WilliamPfaffperformedFlorida’sfirstkidneytransplant.In1990,theShandsLiverTransplant

Programwasfounded.Weareonlyoneofafewcenterstoalsoofferkidney,kidney-pancreas,liver,heart,heart-lung,andbonemarrowtransplants.

Thehealthcareprovidersatourcenterarecommittedtofocusingtheirknowledgeandresearchontheproblemsofpatientswithadvanced liver disease. We are dedicated to keepingthehighestlevelofpatientsatisfaction.Themaingoalofourprogramisnotonlytoprolonglifebutalsotoimprovequalityoflife.


THE LIVERThe liver is the largestinternalorganinthebody.Itislocated on the rightsideoftheabdomenbehindthelowerribs.Itspurposeistocontrolmanyimportantfunctionsthatarevitalfora

healthybody.

Duringthesurgery,yournewliverwillbeplacedinthesamelocationasyouroldliver,afteryouroldliverhasbeenremoved.

SOME OF THE LIVER’S FUNCTIONS ARE:•Tochangefoodintobuildingblocksneeded forlifeandgrowth•Tofilterandremovedrugs,alcohol,andother thingsthatmaybeharmfultoyourbody•Tocleanthebodyofbacteriaandwaste products•Toproducebile,ayellow-greenfluidthatis neededforthebodytousefatsandvitamins•Tomakeproteinsforcellgrowth, reproduction,repairandbloodclotting•Tostoreandreleasesugarforenergy

Althoughthelivercanrepairitsowncells,therearemanyillnessesthatwillleadtoend-stageliverdisease,alsocalledcirrhosis.Oncethis has happened, liver transplantation is the onlyoptionthatwillreturnnormalhealthandstrength.

LIVER DISEASE

CIRRHOSIS

CIRRHOSIS CAN BE CAUSED BY ANY OF THE FOLLOWING:•Alcoholuse•Autoimmunehepatitis:thebody’simmune systemdoesnotrecognizetheliverasitsown andattacksit•Chronicbileductblockage:PrimaryBiliary Cirrhosis(PBC),PrimarySclerosing Cholangitis(PSC),andBiliaryAtresia(BA)•Chronicviralhepatitis(TypeBandC)•Cryptogeniccauses•GeneticDisorders -AlphaI-antitrypsindeficiency:aninherited disorder -Hemochromatosis:anabnormalstorageof iron -Wilson’sdisease:anabnormalstorageof copper -Non-AlcoholicFattyLiverDisease•Othercauses

PEOPLE WITH LIVER DISEASE MAY HAVE ANY OF THESE SYMPTOMS:•Jaundice(yellowingoftheeyesandskin)•Itching•Malaiseandfatigue•Weightlossandmusclewasting•Dark,tea-coloredurine•Grayorclay-coloredstools

SIGNS AND SYMPTOMS OF LIVER DISEASE

•Mentalconfusionorcoma(thisiscalled encephalopathy)•Ascites(anabnormalcollectionoffluidinthe abdomen)•Vomitingofblood•Frequentnosebleeds•Easybruising

Patientswithliverdiseasemustremainfreeofanyandallalcoholuse.Werequirealcoholabstinenceforallpatientsconsideringlivertransplantation.


Beforeourdoctorscandecideifalivertransplantisyourbesttreatmentoption,youwillneedtocompleteatwo-dayoutpatientevaluation.Thisisascheduleoftestingtoseehowbadyourliverdiseaseisaswellastoensurethattherestofyourbodyishealthyenoughtosurvivetransplant.

Yourtransplantevaluationwillmostlikelyincludeallofthefollowingtests:

ARTERIAL BLOOD GASES:Asampleofbloodistakenfromanarteryinyourwristandusedtoseehowwellyourlungsfunction.Thismeasurestheamountofoxygenandcarbondioxideinyourblood.

BLOOD DRAW:Bloodisdrawntoevaluateyourliverfunction,kidneyfunction,andbloodtype.Wewillalsoperformabatteryofviraltests.Allbloodtestsaretobettercareforyoubeforeandafterlivertransplantation.AnHIV/AIDStestwillalsobedone.

CHEST X-RAY:Thiswillevaluateforanyproblemswithyourheartorlungs.

ELECTROCARDIOGRAM (ECG/EKG):Agroupofwireswillbeplacedonyourchesttorecordyourheart’selectricalactivity.

TRANSPLANT EVALUATION

FINANCIAL ADVISEMENT:Youwillmeetwithahospitalfinancecounselortodiscussyourinsuranceco-pays.Pleasebringyourinsuranceinformationwithyou.Wewillhelpyoudeterminewhatfinancialresourcesareavailabletoyou.

PHARMACY ADVISEMENT:Youwillmeetwithapharmacistwhowilldiscusspost-transplantmedications.Pleasebringyourinsuranceinformationwithyou.The

pharmacistwillhelpyoutodetermineyourout-ofpocketexpensespermonthsoyoumayplanonhowtocoverthesecosts.

PSYCHOSOCIAL ASSESSMENT:Youwillmeetwithasocialworkertodiscussyoursupportsystem(familyandfriends),physicalandmentalabilitiesaswellasworkhistory.Sincethiscanbeastressfultime,wefeelthatitisimportanttoknowhowyouhandlestressaswellasassesswhowillbeavailabletoprovideyouwithemotionalsupport.Ifyouhavealivingwill,pleasebringacopyofitwithyou.Ifyoudonot

havealivingwillwewillhelpyoucompleteone.



SURGICAL CONSULT:Youwillmeetwithalivertransplantsurgeonwhowillreviewyourmedicalhistoryanddiscussthetransplantprocedurewithyou.Theywilltalktoyouaboutthesurgery,possiblecomplicationsandprojectedoutcome.Theymayalsodiscusstreatmentoptionsotherthantransplantation.

TRANSPLANT COORDINATOR:TheTransplantCoordinatorwillmeetwithyouduringyourTransplantSurgeryConsult.Theywillprovideeducationaswellasansweranyquestionsorconcernsthatyoumayhave.YourTransplantCoordinatorisyourmaincontactpersonatShandsatUF.Youwillneedtostayinclosecontactwithyourcoordinatorduringthisentireprocess.

ULTRASOUND OR CT SCAN:Thesetestsareusedtogaininformationregardingyourdegreeofcirrhosis,patencyofbloodvesselsandassessmentforpossiblelivercancer.IfaCTisordered,contrastdyeisused.Informtheradiologistifyouhavehadareactiontothedyeorifyouhaveanallergytoiodineorshellfishbeforehavingthistestdone.

ECHOCARDIOGRAM (ECHO):Soundwavesareusedtocreateapictureofthehearttoseehowwellitispumpingblood.

CARDIAC STRESS TEST (DSE OR ADENOSINE THALLIUM):Thisisatesttoevaluatetheheart’sabilitytoworkduringexercise.Youwillbegivenmedicationtoelevateyourheartrate.Thisisnotatreadmilltest.

Other evaluation testing may include:

LIVER BIOPSY:Aprocedureduringwhichapieceoftissue

isremovedfromyourliversothatitcanbelookedatunderamicroscope.Youwillbegivenmedicineduringthistesttohelpyourelax.

CLINICAL PSYCHOLOGY:Youmaymeetwithaclinicalpsychologistwhowilltalkwithyouaboutyouranxiety,depressionordrugandalcoholusehistory.Theyalsoassessyourabilitytofollowpost-transplantinstructions.


COLONOSCOPY:Atestthatallowsdoctorstolookattheliningofyourcolon.Beforethistest,youarerequiredtodrinkaliquidcalledabowelprep.It is very important that you drink all of the prep and that your colon is free of stool so the test will not have to be repeated.Youwillreceivemedicineduringthetesttohelpyourelax.

ENDOSCOPY (EGD):Atesttoseeifthereareenlargedveinsorulcersinyourthroat,esophagusorstomach.Youwillbegivenmedicinetohelpyourelax.

ENDOSCOPIC RETROGRADE CHOLANGIOPANCREATOGRAPHY (ERCP):Atestthatstudiestheducts(drainagetubes)ofthegallbladder,pancreas,andliver.Dyeisinjectedintotheductsandx-rayfilmsaretaken.Informtheradiologistifyouhavehadareactiontodyeorhaveanallergytoiodineorshellfishbeforehavingthistestdone.

MAGNETIC RESONANCE IMAGING (MRI):Acomputer,apowerfulmagnetandradiowavesareusedtoproducedetailedimagesoforgansandbloodvessels.Beawarethatyourheadandbodymaybeinanarrowspaceduringtheprocedure.PleaseremoveallmetalobjectsandcreditcardsbeforeenteringtheMRImachine.

PHYSICAL THERAPY:Youmaymeetwithaphysicaltherapisttoevaluatetheamountofmusclewastingorphysicalweakeningduetoyourliverdisease.Heorshewillalsodecideyourneedforpost-transplant care.

The doctors may request other consults or tests as seen necessary.

IMPORTANT:You are required to have a family member or close friend come with you to the evaluation. Heorshewillbeabletohelpyourememberthegreatamountofinformationthatyouwillreceiveaboutthetransplantprocess.Wewillbeunabletocompleteyourevaluationprocessunlessacaregiverattendsyourevaluation.

Afteryourevaluationhasbeencompleted,thelivertransplantteamwillmeettodiscussyourcaseanddecideifalivertransplantisthebestoptionforyou.ThisiscalledMedicalReviewBoard.

Aletterstatingtheresultsofyourevaluationwillbesenttobothyouandyourlocaldoctorwithin10businessdaysofyourevaluation.

Pleasestayintouchwithyourtransplantcoordinator’soffice.Itisimportantthatwemaintaingoodcommunicationthroughouttheevaluationandlistingprocess.

Pleasenotifyyourcoordinatorifyouareadmittedtoyourlocalhospitalorifyourinsuranceorcontactinformationchanges.

Youmustmaintainroutineappointmentswithyourlocaldoctors.Theywillbeveryimportantwithyourmedicalcare.


ACTIVATION PROCESS:Yourcoordinatormaytellyouthatyouhavebeenapprovedforatransplantbutyouneedtocompletesometestsbeforeyoucanbeactivated. Please complete these as soon as possible so that you can be activated on the list. If you are not activated, you CANNOT be transplanted.

Afteryouhavebeenapprovedfortransplantationandyouhavecompleted

everythingthatyourcoordinatoraskedyoutodo,yournamewillbeputonthenationalcomputerizedwaitinglist.Thisiscalledactivation.TheUnitedNetworkforOrganSharing(UNOS)managesthelistundercontractwiththefederalgovernment.

Thislistwillmatchyouwithasuitabledonorbasedonyour:•Bloodtype•Bodysize•Medicalurgency-MELDscore (MELDscoreisacalculatedscoreofmedical urgency.ItisbasedonyourBilirubin, Creatinine,andPT/INRlabvalues.The MELDscorerankspatientsinorderof medicalurgency.

The UNOS list is always changing, and it is not possible to tell you where you are on the list.

Onceyouareactivated,youwillneedtoobtainacellphoneandkeepthiswithyouatalltimes.Please call the liver transplant office with the number, and be sure to give us any other numbers where you might be reached. Besuretoprovideallupdatedphonenumbers

offamily,friends,andothersupportpersons.When we are trying to contact you for a transplant, the coordinator will call your home first, then your cell phone.

Ifyouplanontravelingorhavetoleavetown,pleaseadvisethetransplantofficeassoonasyouareawareoftravelplans.

PRE-TRANSPLANT FOLLOW-UP:Weknowthatwaitingforaliverisastressfultime.Whileonthewaitinglist,youmayfeelalossoffreedombecauseyoumustbereachable24hoursaday.Astimepasses,youmayfeelthatthetransplantteamhasforgottenyou.Itisimportanttokeepinmindthat,duringthiswaitingtime,thereislittlecontroloverwhenadonorliverwillbecomeavailableforyou.

WHILE YOU ARE WAITING:•Youwillbeseeninourlivertransplantclinic abouteverythreemonths.•Youandyourfamilymayattendsupport groupmeetingstohelpyoudealwiththe stressofwaiting.

TO STAY HEALTHY WHILE WAITING:•Maintainyourdietandexercise.•Followyourlivercoordinator’sinstructions aboutlabsandtests.

•Continuetoseeyourregulardoctorfor routinehealthproblems.•Besurethatyourdoctorkeepsyourliver coordinatorawareofanyvisitsandlabwork youhavedone.•Continuetoremainfreeofallalcohol, nicotine,andillegaldruguse.

CONCLUSION:Yourmaingoalwhilewaitingforatransplantistostayashealthyaspossible.Toachievethis:•Seeyourdoctorregularly.•Keepintouchwiththetransplantteam.•Watchyourdietcarefullyandexercise regularly.

Remember that the healthier you are when you have the transplant, the easier your recovery will be.



Whenasuitabledonorbecomesavailable,youwillbecalledbyoneofthetransplantcoordinators.YouwillbeexpectedtoleaveforShandsassoonaspossible.Please do not eat or drink anything after receiving the call. Please travelinasafebuttimelymanner.

WHEN YOU ARRIVE IN GAINESVILLE:•Youwillcheckinwhereyouhavebeen instructedbythetransplantcoordinator.•Youwillhavebloodwork,achestx-ray,and anEKGdone.Thelocationofthosetestswill dependifyouarriveduringnormalbusiness hoursorafter hours.

YOU WILL BE TAKEN TO A ROOM ON THE TRANSPLANT FLOORWHERE:•Youwill receive an enemaanda showerwitha special soap.•Youwillbe given medicineto destroy bacteriainyourbowel.•Anintravenous(I.V.)linewillbeinserted.•Youwillmeetwithananesthesiologistanda surgeonwhowilldiscussyouranesthesiacare andaskyoutosignconsentforms.

TRANSPLANTATION

WHEN EVERYTHING IS COMPLETE:•Youwillbetakentotheoperatingroomin theSUFsouthcampus.•Yoursurgerywilltakeabout5hours.•Familymembersshouldwaitinthesurgical waitingroomonthesecond(2)floorofSUF southcampus.

It is important to know that you may be called in and prepared for surgery, and then be told that the transplant is cancelled.Thishappenswhentheliverisunsuitablefortransplant.Whensomeoneisbeingevaluated

fororgandonation, manytestsare done. However,thesetests cannot alwaystellusifthelivercanbeusedfortransplant.Onlyafterourtransplantsurgeonsinspect the livercanwebesurethattheliverisidealfortransplant. A

cancellationcanbeverydiscouraging,butitisinyourbestinterest.


TRANSPLANT TYPES:Therearenotcurrentlyenoughdonororgansavailabletomeettheincreasingdemandsandtherearepatientsthatdiewhilewaitingforaliver.Therearenowalternativestowholelivertransplantthatallowformorepatientstoreceive liver transplants.

SPLIT LIVER TRANSPLANT:Oneoftheseoptionsistosplitanadultcadaveric liversothattwopatients,oftenanadultandachild,butsometimestwosmalladults,canbetransplantedwithoneliver.Splitlivertransplantsarebecomingroutineandcurrentresultsarenodifferentthanwiththewholeorgantransplantation.

Splitlivertransplantationmaydecreaseyourwaitingtimeonthelist.Itmayallowyoutogettransplantedbeforeyoubecometooill,improvingyourrecoveryaftersurgery.Yoursurgeonwilldiscussthisoptionwithyou,ifyouareanappropriatecandidate,duringyourevaluation.

LIVE DONOR TRANSPLANT:Anotheroptionistousepartofaliverformalivedonor.Livingdonationhasbeenusedforkidneytransplantationwithexcellentresultsformanyyears.Overthepastfewyears,livedonorshavealsobeenusedforlungandpancreas transplantation. Live liver donation involvesremovinghalfofthedonor’sliverandimplantingthatpartintotherecipient.

Someoftheadvantagesofalivedonortransplant include avoiding a potentially long wait for a cadaveric organ and getting transplanted while you are still “reasonably healthy.”Thisalsoallowsyouandyourfamilythetimetoplanaheadbyknowingwhenthetransplant will occur. Your physicians will discussthisoption,alongwiththepotentialriskstothedonor,withyouingreatdetailifyou are an appropriate candidate.

THE TRANSPLANT SURGERY:Onceyouhavebeentakentotheoperatingroomandareasleep,itmaytakeanhourormoretocompletethestepsneededtopreparefortheactualsurgery.

HERE ARE THE STEPS TAKEN IN THE SURGERY:•Thesurgeonmakesanincisionbelowyour ribcage.•Thenextfewhoursarespentremovingyour diseasedliver.Yourgallbladderwillalsobe removed.•Afteryouroldliverisremoved,ittakes45 to60minutestosewthebloodvesselsofthe donorlivertoyourvessels.(seepictureon page12)•Next,yournewbileductwillbeattachedto eitheryouroldbileductortoyourintestines.•Yourabdominalwallandskinwillthenbe closed.


•YouwillbetakentotheSurgicalIntensive CareUnit(SICU).•Thesurgeonwillcontactthewaitingroomto speaktoyourfamilyandtellthemhowyou aredoing.

THE SURGICAL INTENSIVE CARE UNIT:YouwillwakeupintheSICUwherethesightsandsoundswillbestrange.Youmayexperiencefeelingsofbeingscaredorsuspiciousduetotheunfamiliarsurroundingsandtheresultofmedicationsyouarereceivingtopreventrejection.Moodswingsarecommonandwillimprovewithtime.Bepatientandbesuretoreporthowyouarefeelingtoyourtransplantteam.

IN THE SICU YOU WILL HAVE:•Anarterial lineinyourwristthatallowsus tomonitoryourbloodpressureandtake bloodsamples.

WHAT TO EXPECT AFTER SURGERY

•Twoorthreedrainage tubesinyour abdomentodrainbloodandfluidfrom aroundyournewliver.•AFoley cathetertoemptytheurinefrom yourbladder.• I.V. catheters togivefluidsandmedicine.•Anasogastric (NG) tubeinyournoseto keepyourstomachempty.•Apulse oximeterclippedtoyourfingerso yournursecanmonitortheamountof oxygeninyourblood.•AmassagestockingcalledaSequential Compression Devicewillbeonyourlegsto keepbloodmovingandtohelppreventclots.

YOU MAY ALSO HAVE:•Anendotrachialorbreathingtubeinyour mouththatgoesdownintoyourwindpipeto helpyoubreathe.•Thetubemaybeuncomfortablebecauseyou willnotbeabletotalkordrinkwhileitisin place.•Whenyouareabletobreatheonyourown, usuallywithinafewhours,thistubewillbe removed.

Yourincisionwilllooklikeanupside-down“V,”a“Y,”orabackward“L.”Somepatientsfindthattheyarenotinasmuchpainastheyexpected.Thismaybeduetothetypeofincisionmadeandtotheuseofsteroidmedications.

Liver

Bile Duct

Gallbladder

Stomach

Smallintestine

Pancreas


RECOVERING ON THE TRANSPLANT UNIT:YouwilltransfertotheTransplantUnitadayortwoafteryourtransplant.YoumayfindthetransplantunittobemorerelaxingbecauseyouwillnolongerrequiretheconstantmonitoringthatyouneededintheSICU.Mostofyourtubeswillberemovedatthistime.

•Youractivityanddietwillberesumedas quicklyaspossible.•Youwillbeexpectedtogetoutofbedandto walkasmuchaspossible.•Physicaltherapywillbestartedtohelpwith activity.

Theteammemberswhoareworkingwithyouarefamiliarwiththeneedsoftransplantpatientsandwillhelpyoutowalkandstartcaringforyourself.

Yourecoveryperiodwillbeamixofgoodandbaddays.Allpatientsrecoverdifferently.Comparingyourexperiencewiththoseofotherpatientsmaybeeitherconfusingorhelpful.However,talkingtootherfamiliesinthesamesituationcanofferalotofsupportforyourfamily.Ourexperiencehasshownusthatpatientswithstrongsupportsystemshavebetterrecoveriesandoutcomes.

RECOVERY AND EDUCATION

EDUCATION

DURING YOUR STAY, YOU WILL NEED TO LEARN:•Whenandhowtotakeyournew medications.•Thesideeffectsofyournewmedications.•Thesignsandsymptomsofrejection.• Otherimportantaspectsofpost-transplant care.

TO ASSIST YOU WITH LEARNING:•Wewillprovideyouwithamedicationsheet thatlistsallyourmedicationsandthetimes thattheyneedtobetaken.•Yourcoordinatorwillconductan individualizedmedicationclass.•Youwillneedtopassan“openbook”test usingyourbooktofindanswers.•Youwillalsoneedtopassa“closedbook” testwhereyoucannotuseyourbooktofind theanswers.

Youwillneedtolearnaboutyourmedicinesandpasstestsbeforeyoucanbedischargedfromthehospital.We require family members or friends to be involved and learn about your medications and care. When you go home, you may need this extra help.


TRANSPLANT MEDICATION:Yourmedicationswillbemanagedcarefullybyyourdoctors.Anti-rejectionorimmunosuppressionmedicationsmaybechangedasyournewliverbeginstoworkbetter.Themedicationroutinecanbeoverwhelmingatfirst.Forthisreason,weurgeyoutouseyourmedicationsheetandalsotoaskafriendorfamilymembertolearnyourroutine.

YOUR ANTI-REJECTION DRUGS MAY INCLUDE:•FK506/Prograf/Tacrolimus•Prednisone•Neoral/Cyclosporine-modified• CellCept•Imuran•Rapamune/Sirolimus

You will be taking only a few of these medicines after your transplant!

Youwillalsotakemedicinetopreventinfections.Someofthedrugsyoumaytakearelistedbelow:

ANTI-FUNGAL:(takenfor3-4months)=PreventsamouthinfectioncalledThrush.•Mycelex•Nystatin

ANTI-VIRAL:(takenfor3months)=PreventsaninfectioncalledCMV.•Acyclovir/Zovirax•Valganciclovir/Valcyte

ANTI-BACTERIAL:(takenfor6months)=PreventsapneumoniacalledPCP.•BactrimDS/SeptraDS

Ifyouareallergictosulfa,besuretotellthedoctor!

POSSIBLE COMPLICATIONS:Thereareriskswithanysurgery.Thesurgeonwilldiscusstheseindetailatyourclinicvisit.•Bleeding•Bileductleak/Stricture•Clottingofthebloodvesselsleadingtoor fromthenewliver•Infection•Non-functioningliver•Rejection


MEDICATION SIDE EFFECTS:Thedrugsthatyouwilltakereduceyourbody’sabilitytofightinfection.Youwillneedtousecautionandavoidcontactwithpeoplewhoaresick,especiallyduringthefirst3to6monthsaftertransplant.

Theanti-rejectiondrugsthatyouwilltakehavesideeffects.

THE MORE COMMON SIDE EFFECTS INCLUDE:•Blurredvision•Diarrhea•Handtremors•Headaches•Highbloodpressure•Highbloodsugar(diabetes)•Increasedriskofcancer,especiallyskin cancer•Lowwhitebloodcellcount•Moodswings•Nausea•Vomiting•Decreasedkidneyfunction

If you have any of these side effects, please let your coordinator know!

FOLLOW UP AT THE SHANDS LIVER TRANSPLANT CLINIC 1-3 MONTHS:•Forthefirstmonth, youmayhaveweekly clinic visits.•Youwillhave bloodteststwotimes aweek(mostlylocal labdrawswithresults faxedtothe coordinatoroffice).•Asyouimprove,you willbeseeninthe cliniclessoften.• Intime,youwill onlyneedtobeseenat Shandsonceayear..

THREE TO FOUR MONTHS AFTER TRANSPLANT:•Youwillreturntothecareofyourlocal doctorfornon-liverissues.•Youwillhavebloodworkevery2-4weeks andtheresultswillbefaxedtoyour transplant coordinator.•YoumayhavealiverbiopsyorCTdoneto checkforrecurrentdisease.

POST-TRANSPLANT FOLLOW UP

MEDICATION CHANGES:Manymedicationscaninteractwiththeanti-rejectiondrugsandcauseserioussideeffects,so:•Onlythetransplantdoctorsshouldmake changestoyouranti-rejectionmedications.•Callyourtransplantcoordinatorimmediately ifyourlocaldoctorprescribesanymedication foryou.•Callyourcoordinatorbeforetakinganyover- the-countermedications.

Informationaboutsurvivalratesisavailableathttp://www.ustransplant.org/csr/current/publicData.aspx?facilityID=FLUFTX1LI&t=00&r=florida.



ASCITES: Thenormalbuildupoffluidintheabdominalcavity.ANESTHESIA: Adrugthatcausesyoutolosefeelinginpartorallofyourbody andmaycauseyoutoloseconsciousness.ANTIBIOTIC: Amedicationusedtotreatorpreventinfection.ARTERIAL LINE: Asmalltubeplacedinanarterythatallowsustomonitoryour bloodpressureorobtainbloodsamples.BILE DUCT: Aductthatcarriesbilefromthelivertotheintestines.BLOOD PRESSURE: Theamountofpressureyourbloodexertsagainstthewallsof yourarteries.Theuppernumberissystolicpressure(theamount ofpressurewhenyourheartcontracts),andthelowernumberis diastolicpressure(theamountofpressurewhenyourheart relaxes).CADAVERIC LIVER: Aliverthatistakenfromadonorwhohaspassedaway.CASE MANAGER: Anurseinchargeofoverseeingyourcasefromadmissionto discharge.CIRRHOSIS: Scarringanddecayoflivercells.EDEMA: Bodyswelling,especiallyinthelegs,anklesandhands.FOLEY CATHETER: Atubeplacedinyourbladderthatisconnectedtoadrainage bagtomeasureurine.HEPATITIS: Aninflammationoftheliver.INCISION: Asurgicalcutthatopenspartofthebody.IV: Atubeplacedinaveintodeliverfluidsandmedications.NG TUBE: Nasogastrictube,atubethatgoesinyournoseormouthand keepsyourstomachempty.NPO: Nothingbymouthtoeatordrink.REJECTION: Thebody’sattempttodestroyanewliver.SEQUENTIALCOMPRESSIONDEVICE: Amassagestockingplacedonyourlegsthatisconnectedtoa machine,whichtightensandreleaseslikeabloodpressurecuff.STAPLES: Metalclipsusedinplaceofstitchestoholdwoundedges together.SICU: SurgicalIntensiveCareUnit.VARICES: Swollenbloodvesselsinthethroatorstomach.VENTILATOR: Amachineconnectedtoaflexiblehosethatisinsertedthrough yourmouth,noseorthroat,thathelpsyoubreatheuntilyouare abletobreatheonyourown.VITAL SIGNS: Ameasurementofyourheartrate,breathingrate,bloodpressure andtemperature.

GLOSSARY

YouwillbeassignedtoaLiverTransplantCoordinatorandTransplantAssistantaccordingtoyourlastname.ThesestaffmemberswillbeyoumaincontactpersonsatShandsattheUniversityofFlorida.

Transplant Coordinator: Assistant: Patient’s Case Managed:KatieMcDowell,RN,BSN,CCTC Dru’Anne LastnamesstartingwithA-K

Transplant Coordinator: Assistant: Patient’s Case Managed:TreeKasper,RN,MSN,CCTC Donna LastnamesstartingwithL-ZAmyCamire,RN,BSN

Financial Representative:GwenBradley352-265-0472 Shewillmanageallinsurancecommunicationandneeds.

1. ReferraltotheTransplantCoordinatorOffice-AfteryourHepatologistrefersyouto thetransplantcoordinator’soffice,financialauthorizationwillbeobtainedtocover yourtransplantevaluation.Afterthisisachieved,thecoordinatorofficewillschedule a Two-Day Outpatientevaluationbasedonyourindividualmedicalhistory.Youwill receiveyourevaluationschedulethroughthemail.Thisschedulewillgiveyouthe dates,times,andlocationsforyourvariousappointments.

2. Medical Review Board-Oncethetwo-dayevaluationiscompletealltestresultswill bereviewedinourweeklyMedicalReviewBoard.Youwillnotattendthismeeting butyourcoordinatorordoctorwillbeincontactwithyoushortlythereafterto discusstheoutcomewithyou.Ifapproved,yourtestresultswillbeforwardedto yourinsurancecompanyforapprovalforthetransplantprocedureitself.Ifyouare deferredordeniedtransplantatthisMedicalReviewBoard,youwillbenotifiedofthe reason.Oftentimes,itisbecausefurthertestinginneededpriortofinalconsideration.

3. TransplantListinginUNOS(UnitedNetworkofOrganSharing)- Once all evaluationandfollowupitemsarecompletedandinsuranceauthorizationisinplace, yourcoordinatorandassistantwilllistyouontheUNOSNationalLiverTransplantlist.

4. OngoingEvaluationandHealthMaintenance-Wewillfollowyourliverdisease routinelyinourLiverTransplantClinic.Yourprimarycaredoctorswillneedto continueyourroutinehealthmaintenance.WomenneedannualGYN/PapSmears andMammograms.Menwillneedannualprostateexams.Ourlivertransplantteam willtrackyourroutineneedforlabs,CTscans,updatedcardiopulmonarytesting,as wellasanyotherupdatedtestingtomaintainyourtransplantcandidacy.

THE PRE-LIVER TRANSPLANT PROCESS



NOTES

Rev.3/1/13 PS48639

liver transplant program guide for patients · 1 liver transplant program guide for patients. the...

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