liver transplant patient handbook - ucsf medical center

Liver Transplant Patient Handbook

Liver Transplant Phone Number

(548-3789)1 (800) LIVER TX

Leave your name, date of birth, phone number, and a brief message.

Your message will be returned within one business day.

Frequently Asked Questions

Medication questions:

• WhatdoIdoifIforgettotakemyanti-rejection(immunosuppressive)medication?See page 8 under "missed dose" listed under each medication description.

• WhatdoIdoifIneedaprescriptionrefill?Call your pharmacy who will contact the Transplant Office for refill authorization.

• WhatdoIdoifmypharmacyhasn’treceivedpriorauthorizationforamedication?Call (800) 548-3789 and leave a non-urgent message.

• WhatoverthecountermedicationscanItake?See page 46.

• WhatshouldIdoifamprescribedamedicationbyanotherprovider?See page 46.

Vaccination information:

• WhichvaccinescanIreceiveandwhichshouldIavoid?See page 28.

• WhatifIamtravelingoutofthecountry?See page 45.

Labs:

• WhatdoIdowhenmystandingorderexpires?Call (800) 548-3789 and leave a non-urgent message. Kaiser insured patients call (888) 551-2740 and leave a message for your Kaiser coordinator.

• HowoftenwillIneedtohavelabsdrawn?Frequently right after transplant, then once per month for a lifetime.

• HowcanIgetmylabresults?Ask your lab how you may also receive lab results.Some labs/providers have ways you can access your labs on-line.

• Domylabsneedtobedrawnwhilefasting? No, but you must draw labs first thing in the morning before taking medications.

Low Potassium diet:

• WhatfoodsshouldIlimittokeepmypotassiumlevelinrange?See page 33.

Illness and infection:

• WhatoverthecountermedicationscanItake?See page 46.

• WhenandwhoshouldIcallwhenIamnotfeel-ingwell? See page 46.

Dentist:

• DoIneedantibioticsbeforegoingtotheden-tist? See page 42.

Medical records

• HowdoIreceiveacopyofmymedicalre-cords?Call medical records (415) 353-2885. The transplant office is not authorized to send medical records.

Disability and FMLA forms and work re-lease forms: (See page 45.)

• HowdoIgetmyformsfilledoutandsignedformedicalleave?Call (800) 548-3789 and leave a message for the Social Worker.

• WhencanIreturntowork?See page 45.

Introduction

LiverTransplantServicePhoneNumbers . . . . 2

ConsultingOtherSpecialistsatUCSFMedicalCenter . . . . . . . . . . . . . . . . . 3

UCSFClinicPhoneNumbers . . . . . . . . . . . . . . 4

NowThatYouHaveYourLiverTransplant . . . . 5

YourLocalHealthCareProvider,theTransplantTeamandYourInsurance . . . . . . . . . . . . . . . . . 5

Medications and Diagnostic Tests

GeneralInformation . . . . . . . . . . . . . . . . . . . . . 6

Self-MedicationSchedule . . . . . . . . . . . . . . . . 6

YourMedicineSchedule . . . . . . . . . . . . . . . . . 6

MedicineTimes . . . . . . . . . . . . . . . . . . . . . . . 7

WarningsAboutMedications . . . . . . . . . . . . . . 7

ImmunosuppressiveMedications . . . . . . . . . . 8

Cyclosporine(Gengraf,Neoral) . . . . . . . . . 8

Tacrolimus(Prograf®,Tacrolimus) . . . . . . 10

MycophenolateMofetil(CellCept®,Myfortic) . . . . . . . . . . . . . . . . 11

Sirolimus(Rapamune®) . . . . . . . . . . . . . . 12

Prednisone . . . . . . . . . . . . . . . . . . . . . . . . 13

OtherMedicationsYouMayTakeAfterYourTransplant . . . . . . . . . . . . . . . . . . . 14

AntifungalMedications . . . . . . . . . . . . . . 14

Antivirals . . . . . . . . . . . . . . . . . . . . . . . . . 14

Antibiotics . . . . . . . . . . . . . . . . . . . . . . . . 15

Diuretics . . . . . . . . . . . . . . . . . . . . . . . . . 15

Anti-ulcerMedications . . . . . . . . . . . . . . . 16

HighBloodPressureMedications(Anti-hypertensives) . . . . . . . . . . . . . . . . . 16

Ultrasound . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

CTScan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

LiverBiopsy . . . . . . . . . . . . . . . . . . . . . . . . . . 17

When You Go Home

OutpatientCareGuidelines . . . . . . . . . . . . . . 18

LiverTransplantClinic . . . . . . . . . . . . . . . . . . 18

AdultClinic . . . . . . . . . . . . . . . . . . . . . . . 19

PediatricClinic . . . . . . . . . . . . . . . . . . . . . 19

OutpatientLiverBiopsy . . . . . . . . . . . . . . . . . 19

DailyRoutine . . . . . . . . . . . . . . . . . . . . . . . . . 20

RoutineFollow-upcare . . . . . . . . . . . . . . . . . 20

YourLocalHealthCareProvider'sRole . . . . . 21

LaboratoryTestsandLabLetters . . . . . . . . 21

LaboratoryRecordsandVitalSignsFlowsheet . . . . . . . . . . . . . . . . . . . 24

Immunization and Immune Protection

Immunizations . . . . . . . . . . . . . . . . . . . . . . . . 28

Diphtheria/tetanustoxoid/pertussis(DPT) . . . 28

HemophilusB(HIB) . . . . . . . . . . . . . . . . . . . . 28

HepatitisA(HepA) . . . . . . . . . . . . . . . . . . . . . 28

HepatitisB(HepB) . . . . . . . . . . . . . . . . . . . . . 28

OralPolioVirusVaccine(OPV) . . . . . . . . . . . . 29

InactivePolioVirusVaccine(IPV) . . . . . . . . . . 29

Measles,Mumps,Rubella(MMR) . . . . . . . . . 29

Table of Contents

FluShots . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29

Tetanus . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29

Tuberculosis(TB)testingusingpurifiedproteinderivative(PPD) . . . . . . . . . . . 29

Varicella(ChickenPox) . . . . . . . . . . . . . . . . . . 29

VaricellaZooster(Shingles) . . . . . . . . . . . . . . 29

Nutrition Following Liver Transplantation

ShortTermNutritionManagement . . . . . . . . . 30

NutritionforPediatricPatientsFollowingLiverTransplant . . . . . . . . . . . . . . . 34

LongTermNutritionalManagement . . . . . . . . 34

Low-FatCookingTips . . . . . . . . . . . . . . . . . . 35

Fitness For Life

HowtoStartanExerciseProgram . . . . . . . . . 36

U .S .TransplantGames . . . . . . . . . . . . . . . . . 38

Health Maintenance

SkinCancer . . . . . . . . . . . . . . . . . . . . . . . . . . 40

RoutineSelfExam . . . . . . . . . . . . . . . . . . . . . 40

Acne . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40

DrySkin . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40

CutsandScratches . . . . . . . . . . . . . . . . . . . 41

IncreasedHairGrowth . . . . . . . . . . . . . . . . . . 41

HairCare . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41

DentalCare . . . . . . . . . . . . . . . . . . . . . . . . . . 42

Smoking . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44

Alcohol/IllegalDrugs . . . . . . . . . . . . . . . . . . 44

Sexuality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44

FamilyPlanning . . . . . . . . . . . . . . . . . . . . . . . 44

ReturntoWork/School/Disability . . . . . . . . 45

Travel . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45

OtherHealthCareConcerns . . . . . . . . . . . . . .46

IllnessandInfection . . . . . . . . . . . . . . . . . . . . 46

ColdsandFlu . . . . . . . . . . . . . . . . . . . . . . . . . 46

HerpesZoster(Shingles) . . . . . . . . . . . . . . . . 47

PersistentHeadaches . . . . . . . . . . . . . . . . . . 47

SkinEruptions . . . . . . . . . . . . . . . . . . . . . . . . 47

Thrush . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47

ChickenPox,Measles,andMumps . . . . . . . 47

EmergencyMedicalIdentification . . . . . . . . . 47

GuidelinesforVisitingTransplantChildren . . 48

Resources

GettingBackintoLife! . . . . . . . . . . . . . . . . . . 50

Pamphlets/Organizations/Websites . . . . . . 52

2INTRODUCTION

Introduction

Liver Transplant Service Phone Numbers

TheLiverTransplantOfficeisopenfrom8amto5pm,MondaythroughFriday .TheLiverTransplantanswer-ingservicewillacceptemergencyphonecallsbeforeandafterofficehours,onweekends,andallholidays .

Urgent Calls Only

The24hoururgenttransplantnumberis(415) 353-1888.Thisnumberisanswered24hoursaday,7daysaweek .Ifyouexperienceanurgenthealthconcernduringnon-businesshours,pleaseusetheurgenttrans-plantphonenumber .Ifyoufeelyourconcerncanwaituntilthenextbusinessday,pleasecallduringbusinesshoursandaskthatyourtransplantnursepractitionerbepaged .

Leavethefollowinginformationwhenyoucallthe24hoururgenttransplantnumber:

• Yourname(spellitfortheservice)anddateofbirth

• Yourphonenumber(s),includingareacode

• Briefreasonforcall

National Emergency Number Is 911

• Call911orhaveafamilymemberorfriendtakeyoutothenearestemergencyroomifyouhaveanyofthefollowing:

Chestpain

Troublebreathing

Bleeding

Unconsciousness

Non-Emergency Calls

• Reportinglabvaluesisnotanemergency .

• Prescriptionrefillsarenotanemergency .

• Call1 (800) LIVER TX(548-3789)withquestions,ormessagesforthetransplantteam .Messagesmaybeleft24hoursaday .Yourmessagewillbereturnedwithinonebusinessday .

• Requestsforroutineprescriptionrefillsshouldbecalledinbyyourpharmacytotheabovenumber .

• Pediatricpatientsshouldcall 1 (800) UC KID GIor(415)476-5892or(415)476-8636 .

3 LIVER TRANSPLANT HANDBOOK

Consulting Other Specialists YoumaybesenttospecialistsinotherdepartmentsattheMedicalCenterandclinic,soyouneedtokeeparecordoftheprovider’snameineachdepartmentinordertomakeanappointment .Keepalistoftheseprovidersandtheirdepartmentsforfuturereference .

Yourprimarycareprovidermayreferyoutospecialistswithinyourinsuranceplan .Includetheseprovidersonyourlist,also .

Providers in Other Departments

• Cardiologist(Heart)

• Dentist(Teeth)

• Dermatologist(Skin)

• Endocrinologist(Diabetes)

• ENT(Ear/Nose/Throat)

• Ophthalmologist(Eye)

• Gynecologist(Women’sissues)

• Orthopedist(Bone)

• PrimaryCare/Internalmedicine

• Other

4INTRODUCTION

All UCSF Clinic Phone Numbers are in the (415) Area Code

Dental . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 476-1891

Dermatology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353-7800

Eye . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353-2800

ENT . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353-2757

Gastroenterology

Adult . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353-2318

Pediatric . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353-5892

Gynecology/Obstetrics . . . . . . . . . . . . . . . . . . . . . . . . . . . 353-2223

AdultPostLiverTransplantClinicappt . . . . . . . . . . . . . . . 353-9130

PediatricLiverTransplantClinicappt . . . . . . . . . . . . . . . . 353-2813

Medicine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353-4624

Neurology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353-2273

Orthopedic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353-2808

UCSFPharmacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353-1544

Urology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353-2555

Other Services:

FinancialCounseling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 353-8776

SocialWork(messageline) . . . . . . . . . . . . . . . . . . . (800)548-3789


Now That You Have Your Liver Transplant

Thisbookletwaspreparedtohelpyoulearnwhatyouneedtoknowaboutyournewliver .Althoughweareheretohelpyou,itisyour responsibilitytolearnhowtotakecareofyourselfandyournewliver .Youarethemostimportantpersoninyourhealthcareteamsoyouneedtoknowyourmedications,labvalues,andtheroutinefollow-upcareneeded .

Inthehospital,yournurseswillbegintoteachyouassoonasyouareabletolearn .Atfirstitmayseemlikealotofinformation,butitwillgeteasier .It’snormaltohavequestionsafteryouaredischargedfromthehos-pital .Thishandbookisaquickreferenceguideanda“startingpoint”foransweringyourquestions .Alwaysaskyournurseorthetransplantteamanyquestionsyoumighthave .Weareheretohelpyou .

Writeyourquestionsdownsoyoudonotforgetthem .Thereisspacetowriteyourquestionsattheendofthishandbook .

Your Local Health Care Provider, The Transplant Team, and Your Insurance

Yourlocalhealthcareprovidersandthetransplantteamarecommittedtoprovidingcareforyouinthebestwaypossible .Thiscommitmentincludesprovidingcarewithintheguidelinesoutlinedbyyourinsurancecompany .Afterthefirsthospitaldischargeandfollow-upappointment,youmayneedtogetpre-autho-rizationfromyourprimarycareproviderforclinicvisitsorprocedureswiththetransplantteam .It is your responsibility to get any necessary authorizations have been requested and obtain these from your primary care physician or you may be billed for some charges.Youmaybeabletohavesometestingsuchasliverbiopsiesdoneinyourlocalarea .Knowasmuchasyoucanaboutthepre-authorizationrequire-mentsofyourinsurancecompany,aswellasanyspecialfeaturesaboutyourcoverage .Examples: when do you need a pre-authorization? Which pharmacies are “preferred” within your insurance system?

6MEDICATIONS AND DIAGNOSTIC TESTS

Medications and Diagnostic Tests

General Information

Youwilltakeseveralmedicationsafteryourlivertransplantfortherestofyourlife .Eachmedicationhasbeenindividuallyprescribedforyou,anditisveryimportantthatyoutakeyourmedicationsasyouaretaught .Wewantyoutoberesponsiblefortakingyourownmedications .Wealsowantchildrentobeinvolvedintakingtheirownmedications .Thereismoreinformationaboutthesemedicationsfollowlaterinthischapter .

Self Medication Schedule

Afteryourtransplantyournursewillsetupamedicationscheduleforyou .Thismedicationscheduleissetuptohelpyoulearnaboutthemedicationsyouaretaking,whentotakethem,whattheylooklike,howmuchtotake,whattheyarefor,andtheirsideeffects .Whenyoubegintotakeyourownmedicineaftersurgery,yournursemustalwayscheckyourpillsbeforeyoutakethem .Whenyougohomefromthehospitalyoumaybetaking10–14differentmedications .Theseincludemedicationsyouwilltakefortherestofyourlifeandothermedicationsthatwillstopinweekstomonths .

Your Medicine Schedule

Youwillbegivenacopyofyourmedicineschedulewithalistofallyourmedicationstokeepatyourbed-side .Recordanychangesonthisscheduleinpencil .

• Neverfollowthedirectionsonthebottleasthesedirectionsmaychange .

• Writeanydosagechanges,medicationchanges,ornewmedicinesonyourschedule .

• Remembertobringyourmedicineschedulewhenyoucometotheclinicortothehospital .Alsobringthemedicationbottlesifyouhaveanyquestions;pediatricpatientsalwaysbringmedicationbottlesinadditiontoyourschedule .

• NevertakeanynewmedicationswithoutlettingtheLiverTransplantOfficeknow .Manymedicationschangetheeffectsofyourimmunosuppressivemedications .Theseincludebutarenotlimitedto:Eryth-romycin(Pediazole®),Azithromycin(Zithromax®),Clarithromycin(Biaxin®),Voriconazole,Fluconazole,Ibuprofen(Advil®,Motrin®),Dilantin®,Phenobarbital,andherbalsupplements .


Medicine Times

Youmusttakeyourpillsatthesametimeeveryday .Inthehospital,weusestandardtimesof9am,12noon,6pm,andbedtime .Whenyougohome,youshouldusetimesthatfitsyourlifestylebutthemedicationsshouldbetakenatthesametimeeachday .Yourtacrolimusorcyclosporineshouldbetaken12hoursapartfromeachother,example9amand9pm .Yournurseswillhelpyousetupasystem .

Warnings About Medications

Never:

• Neverchangeorstopanyimmunosuppressivemedicationthetransplantteamhasprescribedwithoutcheckingwithusfirst .

• Youmustneverforgettotakeyourmedications .

• NevertakeMotrin,Ibuprofen,Advil(NonSteroidalAnti-inflammatorydrugalsocalledNSAIDS)asthecombinedeffectwithTacrolimus(Prograf)orCyclosporine(Neoral,Gengraf)cancausekidneydamage .

Always:

• Useacetaminophen(example:Tylenol®)onlyforheadacheorpain(maximumdose2000mg/day) .Parentsshouldbesurethedoseiscorrectfortheirchild’sweight .Remember,Tylenolisalsoinsomenarcotics,forexampleVicodinandNorco .Thetotalmaximumdoseof2000mg/dayincludesprescrip-tionandoverthecountermedication .

• Checkwithyourpharmacistortransplantteamifyouhaveanyquestionsaboutanyofyourmedications .

• Storeyourmedicineoutofthereachofsmallchildren .Rememberthatyourmedicinecouldbedeadlyifaccidentallytakenbyachild .Pharmaciesputallprescriptionsinchildproofcontainers .Ifyoudonotwantchildproofcontainers,askyourpharmacistforregularcontainers .

• Planahead:alwayscallforprescriptionrefillsatleast1–2weeksbeforeyourunoutofmedication .

• Call1 (800) LIVER TXwithanyquestionsyouhaveaboutmedications .Wemakeallattemptstogetbacktoyouwithin24hours .Officehours:Monday–Friday,8am–5pm .


Immunosuppressive Medications

Becauseyournewliverisa“foreigner,”yourimmunesystemwilltrytorejectit .Therefore,itisnecessarytosuppressyourimmunesystemtoprotectyournewliver .Thedrugsdescribedinthischapterpreventand/ortreatrejectionofyournewliver .Immediatelyafteryourtransplant,whenyouaremostlikelytorejectyournewliver,youwillbetakingveryhighdosesofthesemedications .Astheriskofrejectiondecreases,thedoseswillbereduced .Whenthedosesarehigh,youmayexperiencesomesideeffects .

Rememberthatnoteverypatientexperiencesallofthesesideeffects,buttheyoccuroftenenoughthatyoushouldknowaboutthem .Donothesitatetotellthetransplantteamaboutanysideeffectsorproblemsyoumayhave .Wecanoftenhelptolessenthesideeffects .

Cyclosporine (Neoral®, Gengraf®), Tacrolimus (Prograf®), Mycophenolate Mofetil (CellCept® Myfortic), Prednisone, Sirolimus (Rapamune®)

Thesearetheimmunosuppressivedrugsprescribedtopreventrejectionofyourtransplantedliver .Youwillbeonacombinationofthesedrugsatdifferenttimesafteryourtransplant .Thedrugorthedoseofeachofthesedrugsmaychangedependingonyourparticularcondition .Yourtransplantteamwillhelpyouwithchangesinyourmedicationswhileyouareinthehospital .Afteryouleavethehospital,youwillreceivephonecallstoadjustthedosagesbasedonyourlabresults .Writethesechangesonyourmedicationsched-uleimmediatelyalongwiththedateofthechange .

Cyclosporine (Neoral® or Gengraf®):

Purpose Cyclosporineisanimmunosuppressantmedicationthathelpspreventrejection .

Dose Cyclosporinecapsulesareavailablein25mgand100mgstrengths;liquidis100mg/ml .Donotcombinethetypesofcyclosporineyoutake .Inotherwords,prescriptionsforboth25and100mgcapsulesshouldbeconsistentlyfilledwiththesamebrandofcyclosporinemicroemul-sion .Callthetransplantteamwithanyquestions .Thedoseisadjustedbyyourlaboratoryvalues .Itisveryimportanttohaveyourlabsdrawn12hoursafteryourlastCyclosporinedoseandbeforeyoutakeyourmorningmedicationsforproperadjustmentofthismedication .


Cyclosporine (Neoral® or Gengraf®):

When to Take AMDose:takewithyourbreakfastafteryourlabworkiscompleted(usuallyaround9am) .

PMDose:12hoursafteryourAMdose(Usuallyaround9pm) .

Forchildrenwhotakethesedrugsthreetimesaday,theadditionaldoseshouldbetakenatnoonwithlunch .

Missed Dose Ifyoumissadose,makeitupassoonasyouremember .But,don’ttaketwodosesatonetimewithoutcontactingthetransplantoffice .

Precautions Cyclosporinecanbealteredbysomemedications .Beforeyoutakeanynewdrugsincludingoverthecountermedicationsandmedicationspre-scribedbyyourlocalproviderpleasecontactthetransplantoffice .Itisrecommendedthatmothersdo notbreastfeedwhentakingthismedi-cation .Grapefruitsandgrapefruitjuicecaninterferewithyourcyclospo-rinelevel .Youshouldavoidgrapefruitandgrapefruitjuice .

Common Side Effects

Headaches

LossofAppetite

Tremors

Diarrhea

Seizures

Nausea/vomiting

Nightmares

Rash

Memoryloss

Hairgrowth

Fluidretention

Gumswelling

Decreasedkidneyfunction

Increasedriskofinfection

Elevatedpotassiumlevels

Jointdiscomfort

Highbloodpressure

Legcramps

Hotflashes


TacrolimusPrograf®

Purpose Tacrolimusisanimmunosuppressantmedicationthathelpspreventortreatrejection .

Dose Thetabletsareavailablein0 .5mg,1mg,and5mgstrengths;liquidis0 .5mg/ml .Theliquidmustbespeciallymadebyyourpharmacist .Thedoseisadjustedbyyourlaboratoryvalues .Itisveryimportanttohaveyourlabsdrawn12hoursafteryourlastTacrolimusdoseandbeforeyoutakeyourmorningmedicationsforproperadjustmentofthismedication .

When to Take AMDose:takewithyourbreakfastafteryourlabworkiscompleted(usu-allyaround9am) .

PMDose:12hoursafteryourAMdose(usuallyaround9pm) .

Missed Dose Ifyoumissadose,makeitupassoonasyouremember .BUT,don’ttaketwodosesatonetimewithoutcontactingthetransplantoffice .

Precautions Tacrolimus(Prograf)canbealteredbysomemedications .Beforeyoutakeanynewdrugsincludingoverthecountermedicationsandmedicationsprescribedbyyourlocalproviderpleasecontactthetransplantoffice .Itisrecommendedthatmothersdo notbreastfeedwhentakingthismedi-cation .Grapefruitsandgrapefruitjuicecaninterferewithyourlevel .Youshouldavoidgrapefruitandgrapefruitjuice .

Common Side Effects

The side effects of Tacrolimus are similar to those of Cyclosporine.

Headaches

Diarrhea

Seizures

Highbloodpressure

Tremors

Rash

Mentalstatuschanges

Decreasedmagnesium

Insomnia

Highbloodsugar

Anemia

Highpotassium

Nausea/vomiting

Decreasedkidneyfunction

Decreasedappetite

Legcramps

HairLoss


Mycophenolate MofetilCellcept® or Myfortic®

Purpose Mycophenolateisanimmunosuppressantmedicationthathelpspreventrejection .MyforticisentericcoatedformofMycophenolatethatcanhavelessstomachandbowelsideeffects .

Dose Mycophenolateisavailablein250mgstrengthand500mgtablets .Notethattabletsarealsoavailablein500mgstrength,butwewillwriteyourprescrip-tionsusing250mgstrengthsoitwillbeeasiertomakedosagechanges .Myforticisavailablein180mgand360mgtablets .Liquidcomesin200mg/mlstrength .Besuretocheckthebottleyougetfromyourpharmacytomakesureyouhavetherightdose .DonotcrushorchewMyfortictablets .

Note: the doses of Mycophenolate and Myfortic are not the same due to the way they are absorbed in the system.

When to Take AMDose:Takewithyourbreakfast(usuallyaround9am) .

PMDose:12hoursafteryourAMdose(usuallyaround9pm) .


Precautions AntacidssuchasMaalox®andMylanta®decreasetheabsorptionofMyco-phenolate .YoushouldnottakethesewhileonMycophenolate .Wedorecom-mendthatyoucontinuetotakeamedicationsuchasOmeprazole(Prilosec®),Pantoprazole(Protonix®)orLansoprazole(Prevacid®),etc .whileyouareonMycophenolate .YoushouldnottakeMycophenolate(Cellcept®orMyfortic®)foratleast3monthsbeforeconceivingchildren,socheckwiththetransplantofficeifyouareconsideringaddingtoyourfamily .

Common Side Effects

decreasedwhitebloodcount

diarrhea

abdominalpain

ulcers

inflammationofthepancreas


SirolimusRapamune®

Purpose Sirolimusisanimmunosuppressantmedicationthathelpspreventortreatrejection

Dose Thetabletsareavailablein1mgand2mgstrength .Thisisaonceperdaydosingschedule .Thedoseisadjustedtoyourlaboratoryvalues .Itisimportanttohavelabdrawn24hoursafteryourlastdosepriortoyournextdose .Liquidisavailableas1mg/mLandshouldbemixedwithorangejuiceorwateronlyinaglassorplasticcontainer .

When to Take IfyoualsotakeCyclosporine(Neoral®orGengraf®)asanotherimmunosup-pressantmedication,youmusttaketheSirolimus4hoursaftertheCyclospo-rinedoseasthesedrugsshouldNOTbetakenatthesametime .

IfyoutakeTacrolimus(Prograf)itisoktotakeSirolimusatthesametime .


Precautions Pleasecheckwiththetransplantofficebeforeyouconsiderbecomingpregnant .

Itisrecommendedthatmothersdo notbreastfeedwhentakingthismedication .

Common Side Effects

ThemostcommonsideeffectsofSirolimusarechangesinbloodcounts:anemia(lowredbloodcounts),lowplatelets,lowwhitebloodcells .Othersideeffectsmayinclude:

Mouthsores

Rash

Poorwoundhealing

Headaches

Diarrhea

Tremors

Swelling

Kidneydamage

*Alert: you will need to be taken off of Sirolimus approximately one month prior to any surgery due to delayed wound healing. Please inform your transplant team of any upcoming surgery.


Prednisone

Purpose Thisisanimmunosuppressantmedicationthatisusedtopreventortreatrejection .

Dose Adults:Useonly5mgand10mgtabletsunlessfirstcontactingthetransplantoffice .

Children:Prednisonesolutionisavailableinthefollowingconcentrations:1mg/ml;5mg/ml;and15mg/5ml .Be sure you read the label.Ifyouhavequestions,callthetransplantoffice .Also,Prednisoneisavailablein1mgand5mgtabletsforolderchildrenwhoareabletoswallowpills .

When to Take Prednisoneistakenonceperdayinthemorning .Youwillbegivenascheduletofollowthattellsyouhowmuchprednisonetotakeeveryday .Youwillbeonahigherdoserightaftertransplantandwilldecreasethedailyamountbyfollow-ingthewrittenschedule .Bythetimeyouaretwomonthsposttransplantyouwillusuallybeon5mgonceadaytakeninthemorning .Takewithfoodtoavoidupsetstomach .

Thedoseforchildrenvariesdependingontheirweight .


Precautions ItisimportantthatyouneverstoptakingyourPrednisoneabruptly .Thiscouldcauseseveresideeffects .

IfyouareadiabeticitisimportanttorememberthatasyourPrednisonedosedecreases,yourinsulinrequirementswillalsodecrease .

Common Side Effects

Moodchangesormoodswings

Depression

Euphoria

Irritability

Visionchanges

Thrush

Acne

Increasedriskofinfection

Stomachupset

Highbloodsugar

Moonface

Cataracts

Sensitivitytothesun

Highbloodpressure

Jointdiscomfort

Nausea/vomiting

Musclewasting

Ulcers

Increasedappetite


Other Medications You May Take After Your Transplant

Anti Fungal MedicationsFluconazole (Diflucan®)

Purpose Preventsortreatsfungal(Candida)infectionsoftenfoundinthemouth .

Dose Thismedicationistakenonetimeweekly .Thedoseisgenerally100mg .Thismedicationwillbediscontinuedonceyourprednisonedosereaches5mgdaily,usuallytwomonthsafteryourtransplant .

When to Take Onceperweek .

Missed Dose Ifyoumissadose,makeitupassoonasyouremember .But,don’ttaketwodosesatonetime .

Precautions Nevertakethismedicationmorethanonceperweekunlessunderspecificin-structionwiththetransplantdepartmentduetotheinteractionwithyourtrans-plantmedications .

AntiviralsValgancyclovir (Valcyte®) and Acyclovir (Zovirax®).

Purpose PreventsortreatsviralinfectionssuchasCMV,coldsores,herpeszoster,andchickenpox .

Dose Valgancyclovirisavailablein450mgtablets .Theadultdoseisusually900mgperdayforthefirstthreetofourmonthsaftertransplantbutdependsonyourkidneyfunction .Acyclovirisavailablein200mgcapsules,800mgtabletsorinliquidform(200mg/5ml) .Theadultdoseisusually800mg4timesadayfor3to4monthsaftertransplant .Thechildren’sdoseisbasedonbodyweight .

Adultsareusuallytreatedfor3monthsaftertransplant .

Childrenareusuallytreatedfor4to6monthsaftertransplant .

Missed Dose Takeassoonasyouremember .Neverdoubledose .

Side Effects Mayincludedecreasedwhitecount .

Dosagemaybedecreasedforpeoplewithkidneyproblems .


Antibiotics

Trimethoprim/sulfamethoxazole (Bactrim® or Septra®), dapsone, pentamidine

Purpose Treatsorpreventsbacterialinfections,suchapneumocystispneumonia .

Dose ForTrimethoprim/Sulfamethoxazole(Bactrim®orSeptra®)theadultdoseis1tableteveryMonday,Wednesday,Friday;Dapsoneis50–100mgonceaday;Pentamidineisaonceamonthinhalationtreatment .Pediatricdosesarebasedonbodyweight .


Side Effects Sideeffectsoftrimethoprim/sulfamethoxazoleincludearash,decreasedwhitecount,nausea,vomiting,diarrhea,sunsensitivity .

SideeffectsofDapsoneincludedecreasedredbloodcellcount,fatigue,short-nessofbreath .

Sideeffectsofpentamidineincludecoughing .

YouwillbeonthismedicationaslongasyouareonPrednisone .

Precautions SomepatientsmaynotbeabletotakeSeptra/Bactrim®(sulfamedications) .Forthosepatientsdapsonewillbeprescribed .Anotheralternativeispentamidinewhichisgivenmonthlyasarespiratoryinhalationtreatment .

Diuretics – “water pills”Furosemide (Lasix®)

Purpose Toremoveexcessfluidfromyourbodyandsometimesforbloodpressureman-agement .

Dose Variesaccordingtoyourweight,kidneyfunction,potassiumlevel,urineoutput,andbloodpressure .Trytotakedosesinthemorningorearlyafternoontoavoidfrequenturinationinthemiddleofthenight .


Side Effects Weakness,musclecramps,light-headedness,dizziness .


Anti Ulcer Medications Omeprazole (Prilosec®), Esomprazole (Nexium®), Pantoprazole (Protonix®), Lansoprazole (Prevacid®)

Purpose Topreventulcers .UlcerscandevelopwithhighdosesofprednisoneandwhiletakingMycophenalate(Cellcept®orMyfortic®)

Dose Doseandtypeofmedicationisbasedonindividualneedandbodyweight .


Side Effects Sideeffectsareuncommon .

High Blood Pressure Medications (Anti-hypertensives) Nifedipine (ProcardiaXL®), Metoprolol, Amlodipine (Norvasc®)

Purpose Tocontrolyourbloodpressure .

Dose Doseandtypeofmedicationisbasedonindividualneedandbodyweight .


Side Effects Dizziness,nausea,headache,flushing,changesinheartrate .


Diagnostic Tests

Thelistbelowdescribesthepurposesofavarietyofdiagnosticproceduresyoumayundergoafteryouhavehadyourlivertransplant .

Ultrasound

Sometimesdonethedayaftertransplanttobesurethemainbloodvesselsleadingtotheliverarefunction-ingnormally .Anultrasoundcanalsobeusedtocheckforabnormalfluidcollection(blood,bile)intheabdo-menandtolocalizepositionforbiopsiesinchildren .Agelisputonyourabdomenandatransducer(awandlikeinstrument)ispassedovertheabdomen .Imagesofyourliverappearonamonitor .

ERCP/PTC

Theredifferenttypesofx-raysthatcheckbileductsforleaks,blockages,orotherpotentialproblems .ERCP(endoscopicretrogradecholangiogram)isdonebyplacingatubedownyourthroatthroughwhichacatheterisinsertedintoabileduct .PTC(percutaneoustranshepaticcholangiogram)isdonebyinsertinganeedleintotheliverthroughtheabdomen,thenplacingthecatheterinthebileducts .YouwillbegivenmedicationtorelaxyoubeforetheERCPorPTC .Childrenusuallyhavethesetestsdoneunderanesthesia .

CT Scan

Atypeofx-raythatlooksatyourliverfromseveralanglestocheckforinfectionorfluidcollections .

Afteryoudrinkaliquiddye,picturesaretakenwhileyouliestill .Childrenareusuallygivensomethingtorelaxthembeforethisprocedureisperformed .

Liver Biopsy

Aliverbiopsychecksforrejection,hepatitis,andotherpossibleproblems .Youmayneedaliverbiopsyifyourlivernumbersgoup .Therightsideoftheabdomenisnumbed,abiopsyneedleisinserted,andasmallpieceoflivertissueremoved .Youmustlieonyourrightsideforatleast1hourandstayinbedfor4hoursafterthisprocedure .Youmaynottakefoodorfluidsduringthistime .

Youmusthavetransporationarrangedbyafriendorrelative .Publictransportation(cabs,buses)isnotal-lowed .Yourprocedurewillbecancelledifyoudonothaveadequatesupervisedtransportation .

Youmustbeoffbloodthinners,suchascoumadinoraspirinorIbuprofenpriortobiopsy .See page 19 for guidelines.

Infantsandchildrenaregivenmildsedationduringthebiopsy .

18WHEN YOU GO HOME

When You Go Home

Outpatient Care Guidelines

CalltheTransplantEmergencyphonenumber,(415)353-1888,oryourlocalhealthcareproviderfortempera-turesover100 .4°(38°C) .Themostimportantthingyoucandotoensureyourlongtermhealthistorecog-nizeandreportanychangesinthewayyouarefeeling .Pleasedonottryto“selfdiagnose .”Becauseoftheimmunosuppressivemedicationsyoutake,symptomsmayneedurgenttreatment .

Liver Transplant Clinic

YouwillbefollowedbyaTransplantCenterfortherestofyourlife .YouwillbeseenonaregularbasisintheLiverTransplantclinic .ChildrenwillbefollowedinthePediatricGI/Transplantclinic .

Pleasebringyourmedicineschedule,andmedicationsfortheentiredaywithyou .Remembertocheckinattheclinicdeskwhenyouarrive .Returnappointmentsmaybemadeatthedeskwhenyouleaveoryoumaycall(415)353-9130 .Pediatricpatientscall(415)353-2813 .

Labs

Youneedtohaveyourblooddrawntwiceweeklythefirstmonthafteryourtransplantandonceweeklythenextmonthfollowingyourtransplant .Afterthatyouwillprobablyhaveyourlabsdonetwiceamonth,thenonceamonth .YoucanhaveyourblooddrawnatalocallaboratorywhowillfaxyourlabresultstotheLiverTransplantOffice .Fax for adults: (415) 353-2102. Fax for children: (415) 476-1343.

Adult Clinic

TheadultLiverTransplantClinicisonthe6thflooroftheAmbulatoryCareCenter(ACC)andmeetseveryTuesdaymorningfrom8am–12pm .Call(415)353-9130tomakeappointmentsattheadultclinic .Youwillbegivenaspecifictimeforyourappointment .Ifyourinsurancerequiresauthorizationforclinicvisits,itisyourresponsibilitytoarrangewithyourprimarycarephysicianandhavethisapprovedpriortothevisit .

Pediatric Clinic

ThePediatricGI/LiverClinicisonthesecondflooroftheAmbulatoryCareClinicandmeetsThursdaysfrom8am–12pm .Call(415)353-2813tomakeappointmentsatthepediatricclinic .Pediatricpatientsalternatetheirweeklyclinicvisitsbetweentheadulttransplantclinicandthepediatricclinicforthefirst4–6weeksaftertransplant .


Outpatient Liver Biopsy

Thefrequencyofoutpatientliverbiopsieswilldependonwhattypesofproblemsyouhave .Biopsiesmaybedonetoevaluateforrejectionorhepatitis .Donoteatordrinkanythingaftermidnightbeforethebiopsy,exceptforyourmedications .Youmusthaveacurrentsetoflabsdrawnoneweekpriortoyourbiopsy .Youwillbeinstructedtostoptakingaspirin(alsodon’ttakeMotrin,AdvilorIbuprofen)5daysbeforeand5daysafteryourbiopsy .Ifyouaretakinganyotherbloodthinner(suchascoumadin)yourbiopsywillrequirecarefulcoordination .Besuretotakeyourmorningmedicationsthedayofthebiopsy .Ifyouarediabetic,askaboutadjustingyourinsulindosageforthatmorning .Youwillstayinthesurgerycenterforabout6hoursafterthebiopsyisperformed .

Youmusthavetransportationarrangedbyafriendorrelative .Publictransportation(cabs,buses)isnotal-lowed .Yourprocedurewillbecancelledifyoudonothaveadequatesupervisedtransportation .

Infantsandsmallchildrenmayhaveliquidsupuntil4hoursbeforethebiopsy .Infantsandsmallchildrenarealwaysadmittedtothehospitalforthisprocedure .Checkwithyourphysicianortransplantnursepractitionerforquestions .

Location

AdultoutpatientliverbiopsiesareperformedattheSurgeryCenter,400ParnassusAvenue .ItislocatedonthePlazaLevel .Youshouldreportthereat7:45amthemorningofyourbiopsy .

Yourlocalgastroenterologistmayperformthisprocedureatyourlocalhospitalandtheslideswillbesenttoourpathologydepartmentforreview .

Pediatricliverbiopsiesaregenerallydoneinthehospital .Mostchildrenareadmittedinthemorningoftheprocedureandspendthenight .Ifrejectionisseenonthebiopsychildrenmayremainhospitalizedforacoupledaystoaweek,dependingonthetreatment .PediatricoutpatientliverbiopsiesareperformedintheSurgeryCenterat400ParnassusAvenue .Generalanesthesiaisoftenused .Anultrasoundtomarkthespotforbiopsywillbeperformedeitherthedaybeforeorat8:30amthemorningofthebiopsy .Besuretocheckwithyourtransplantnursepractitionerastowhenthisisscheduled .Whenyoubringyourchildforanoutpa-tientbiopsyyoumustbring:1)ahistoryandphysicalperformedbyyourpediatriciannotmorethan2daysbeforethescheduledbiopsyand,2)labworkperformedwithin48hoursofthescheduledbiopsy .

Afterthefirstfewmonths,yourlocalgastroenterologistmayperformthisprocedureatyourlocalhospitalandtheslideswillbesenttousforreview .

20WHEN YOU GO HOME

Daily Routine

Followadailyroutinesimilartotheoneoutlinedbelowafteryougohome .

Mornings

1 . Weighyourselfeachmorningaftergoingtothebathroom .Recordyourweightinyourhandbook .

2 . Takeandrecordyourtemperature .

3 . Takeandrecordyourbloodpressureifyouaretakinganti-hypertensivemedications .

4 . Takeyourmorningmedications,exceptasdescribedinnumber"5"below .

5 . BringyourCyclosporine(Gengraf®orNeoral®)orTacrolimus(Prograf®)orSirolumus(Rapamune®)withyoutothelabonthedaysyouhaveyourCyclosporine,TacrolimusorSirolumusleveldrawn;thentakeyourmorningCyclosporine,TacrolimusorSirolimusdoseafteryourbloodisdrawn .

Noon

6 . TakeyourmedicationsasorderedbytheTransplantTeam .

Nights (between 7–9pm):

9 . Takeyourbedtimemedications .

10 .Setoutyourmedicationsforthenextday .Useofamulti-chamberedplasticpillboxmaybehelpful .

Routine Follow-up Care

Thefirst60–90daysafteryourtransplantarethetimeofhighestriskforrejectionandinfection .Youwillneedtohavefrequentbloodtests .Yourvitalsigns(pulse,bloodpressure,temperature)mustbecheckedoftenduringthefirstthreemonthsthenyourvitalsignscanbecheckasneeded .Theriskofrejectionusuallydecreasesafterthefirst60–90days .Thefrequencyofbloodtestsandvitalsignscanalsobereduced .Yourtransplantteamwillletyouknowwhenyoucandecreasethefrequencyofyourlaboratorytests .

BesuretokeeptheTransplantOfficeinformedofyourcorrectaddressandphonenumber(s),andanychangesinyourhealthcareprovider’sname,address,orphonenumber(s) .

Itisalsoimportanttotelluswhomtocontactincaseofanemergency .Youwillbegivenaformtocomplete .Besuretoreturnthecompletedformtous .

IfyouareanoutpatientandneedurgentmedicalcareorneedtoseeahealthcareprovideratUCSF,call(415)353-1888(days,evenings,andholidays)orgotoyourlocalemergencyroom .


Pediatricpatientsshouldcall(415)476-5892

Do notcometothePatientCareUnitorClinicunlesstoldtodosobytheTransplantTeam .

Your Local Health Care Provider’s Role

YourlocalhealthcareprovidermaybetheonewhotookcareofyoubeforeyoucametoUCSFforyourlivertransplant,orwhoreferredyoutous .Yourvisittothisproviderisveryimportantandshouldoccurnolaterthanonemonthafteryoureturnhome .Youshouldalsocontinueseeingthosespecialistswhowereinvolvedinyourcarebeforeyoureceivedalivertransplant .Forexample:yourpediatricianforchildren,yourcardiolo-gistforheartdisease,yourgynecologistforwomen,yourophthalmologistforeyecare,and/oryourfamilyproviderforgeneralhealthcareneeds,etc .

Aftertheimmediateposttransplantperiod(inotherwords,morethan6–12weeksafteryourreleasefromthehospital),yourfirstcontactforillnessesshouldbewithyourlocalprovider .Afterheorshehasseenyou,yourprovidershouldcontacttheTransplantOfficewithanyquestions .

Remember – Contact the Transplant office during business hours if a new medication is prescribed by your local health care provider. Many medications have significant interactions with your antirejection medications. Inform the Transplant Office of any changes in your health care provider’s name, ad-dress, or phone number(s).

Laboratory Tests and Lab Letters

Bloodtestsneedtobedonefrequentlyforabout90daysafteryourtransplant .Theyaredoneeverydaywhileyouarehospitalizedandtwiceweeklyafteryougohome .

PreferredlablocationsareKaiser,LabCorporQuestlabsaswereceivetheseresultspromptly .

Infantsandsmallchildrenareoftendischargedaftertransplantwithacentrallineforblooddraws .Thecen-trallineisanintravenouscatheterplacedatthetimeoftransplantinthefrontofthechest .Yournursewillshowyouhowtotakecareofitbeforeyougohome,andyouwillhaveahomehealthnursecheckinginwithyouafteryouaredischargedfromthehospital .Whenblooddrawsaredecreasedtoonceaweek,thecentrallineistypicallyremoved .Thisrequiresa“comeandgo”surgicalprocedurewhichisdoneinthesurgerycenter .See page 19 .

RegularlaboratorydaysafteryougohomeareMondaysandThursdays .YouwilltakehomeaLaboratoryLetter(see example on the next page) thatlistsalltheteststhatneedtobedoneandhowoften .Givethislettertoyourlaboratory .

YourlabshouldfaxormailresultstotheTransplantOfficeandtoyourlocalprovider .Askyourlaborproviderforacopyofyourlabs .

LabresultsshouldbefaxedtotheTransplantOfficeat(415)353-2102(adult)or(415)476-1343(pediatrics)

22WHEN YOU GO HOME

UCSF Post Liver Transplant 350 Parnassus Ave, Su. 805

San Francisco, CA 94117 6-Month Standing Order Effective Date: _________________________ Account numbers: Quest Sacramento: 6006480 Quest San Jose: 76164 Labcorp: 04336680 Ordering Provider: John Roberts, MD 41192 NPI#1437113446 Claudia Praglin, NP 56755 NPI#1255355616 Carolyn Nguyen, NP 99829 NPI #1578762902 Jennifer Cademartori, NP 72437 NPI#1770504300 ___________________________________________ FAX RESULTS TO:

Post Liver Transplant Clinic (415) 353-2102 Patient

Additional Physician: _____________________________________ Fax # _________________________

To report CRITICAL LABS call: 415-353-1888

Patient Name ___________________________________ DOB ______________UC MRN_____________________ Please perform the following checked-off laboratory tests:

Twice weekly Once Weekly Twice monthly Once Monthly Other __________________ Routine Lab Tests ICD-9 Codes Drug Levels ICD-9 Codes CBC with diff 996.82, V42.7 Cyclosporine V42.7, V58.83 Electrolyte Panel 996.82, V42.7 Tacrolimus (Prograf) V42.7, V58.83 BUN /Creatinine 996.82. V42.7 Sirolimus (Rapamune) V42.7, V58.83 Glucose 790.29, V58.6 Magnesium 275.2 AST, ALT, Alkaline Phos 996.82, V42.7 Other Tests ICD-9 Codes Total Bilirubin 996.82, V42.7 Calcium 996.82, V42.7 PT/INR 996.82, V42.7, 790.4 Phosphorous 275.3, 794.4 Albumin 996.82, V42.7,

Direct/Indirect Bilirubin 996.82, V42.7 GGT 996.82, V42.7

Once Weekly Twice Monthly Once Monthly Every 3 Months Other

_________________

Specialty Lab Tests ICD-9 Codes Specialty Lab Tests ICD-9 Codes Hemoglobin A1C 250.00 HCV RNA Quantitative

viral load by bDNA 790.4, 070.54

Triglycerides 272.4, V58.83 HCV RNA Qualitative viral load by PCR 790.4, 070.54

Lipid Panel: Chol, Trig, HDL, LDL 272.4, V58.83 HBV DNA 790.4, 070.32 Uric Acid 790.6, V58.83 HBsAg 790.4, 070.32 TSH 244.90, 242.90 Ferritin 285.9 CMV PCR 078.5 Iron 285.9 AFP 155.0 Transferrin/ %saturation 285.9

Twice weekly Once Weekly Twice Monthly Once Monthly Other __________________ Other Tests ICD-9 Codes Other Tests ICD-9 Codes

______________________________________ Signature


UCSF Post Liver Transplant Clinic 400 Parnassus Ave, 6th Floor

San Francisco, CA 94143 6-Month Standing Order Effective Date: _________________________ Account numbers: Quest Sacramento: 6006480 Quest San Jose: 76164 Labcorp: 04336680 Ordering Provider: Philip Rosenthal, MD NPI 1417066242 ___________________________________________ FAX RESULTS TO:

X Peds GI/Hepatology/Liver Transplant (415)476-1343 X Patient

Additional Physician: _____________________________________ Fax # _________________________

To report CRITICAL LABS call: 415-476-5892

Patient Name ___________________________________ DOB ______________UC MRN_____________________ Please perform the following checked-off laboratory tests:

Twice weekly Once Weekly Twice monthly Once Monthly Other __________________ Routine Lab Tests ICD-9 Codes Drug Levels ICD-9 Codes CBC with diff 996.82, V42.7 Cyclosporine V42.7, V58.83 Electrolyte Panel 996.82, V42.7 Tacrolimus (Prograf) V42.7, V58.83 BUN /Creatinine 996.82. V42.7 Sirolimus (Rapamune) V42.7, V58.83 Glucose 790.29, V58.6 Magnesium 275.2 AST, ALT, Alkaline Phos 996.82, V42.7 Other Tests ICD-9 Codes Total Bilirubin 996.82, V42.7 Calcium 996.82, V42.7 PT/INR 996.82, V42.7, 790.4 Phosphorous 275.3, 794.4 Albumin 996.82, V42.7,

Direct/Indirect Bilirubin 996.82, V42.7 GGT 996.82, V42.7

Once Weekly Twice Monthly Once Monthly Every 3 Months Other

_________________

Specialty Lab Tests ICD-9 Codes Specialty Lab Tests ICD-9 Codes Hemoglobin A1C 250.00 HCV RNA Quantitative

viral load by bDNA 790.4, 070.54

Triglycerides 272.4, V58.83 HCV RNA Qualitative viral load by PCR 790.4, 070.54

Lipid Panel: Chol, Trig, HDL, LDL 272.4, V58.83 HBV DNA 790.4, 070.32 Uric Acid 790.6, V58.83 HBsAg 790.4, 070.32 TSH 244.90, 242.90 Ferritin 285.9 CMV PCR quantitative 078.5 Iron 285.9 AFP 155.0 Transferrin/ %saturation 285.9

Twice weekly Once Weekly Twice Monthly Once Monthly Other __________________ Other Tests ICD-9 Codes Other Tests ICD-9 Codes EBV PCR Quantitative 078.5

______________________________________ Signature

(pediatric lab slip)

24WHEN YOU GO HOME

Laboratory Records and Vital Signs

Date:

Hematocrit(Hct)

Hemoglobin(Hgb)

WBC

Platelets(Plts)

BUN

Creatinine(Cr)

Sodium(Na)

Potassium(K)

Glucose

Bili-Total

SGOT/AST

ALKP'tase

SGPT/ALT

CyclosporineorPrograflevel

Weight

Temp

BloodPressure



Date:

Hematocrit(Hct)

Hemoglobin(Hgb)

WBC

Platelets(Plts)

BUN

Creatinine(Cr)

Sodium(Na)

Potassium(K)

Glucose

Bili-Total

SGOT/AST

ALKP'tase

SGPT/ALT


Weight

Temp

BloodPressure

26WHEN YOU GO HOME


Date:

Hematocrit(Hct)

Hemoglobin(Hgb)

WBC

Platelets(Plts)

BUN

Creatinine(Cr)

Sodium(Na)

Potassium(K)

Glucose

Bili-Total

SGOT/AST

ALKP'tase

SGPT/ALT


Weight

Temp

BloodPressure


Medication Levels

IfyouaretakingCyclosporine(Neoral®,Gengraf®,Sandimune),Tacrolimus(Prograf®)orSirolimus(Rama-mune®),yourbloodmustbetestedfrequentlytomeasurethedruglevelinyourblood .Donottakeyourmorningdoseofmedicationbeforeyourlabs .TakeyourCyclosporine,TacrolimusorSirolimuswithyoutothelabandtakeyourmorningdoseafteryourbloodisdrawn .

28IMMUNIZATION AND IMMUNE PROTECTION

Immunization and Immune Protection

Itisextremelyimportantforpediatriclivertransplantpatientsandchildrenoftransplantrecipientstoreceiveappropriateimmunizationstopreventdisease .However,aftertransplanttherecipient’simmunesystemiscompromisedduetotheimmunosuppressivemedicationsthatmustbetakentopreventrejection .

Therefore,liver transplant patients should not receive any live virus vaccines,suchasmeasles,mumps,rubella(MMR),smallpox,chickenpox,shingles(Zostavax®),nasalflumistandoralpoliovaccine(OPV) .

Transplantpatientscanreceiveothervaccinesincludingdiphtheria,tetanustoxoid,pertussis(DPT),andinactivepoliovirusvaccine(IPV),orhumanpapillomavirus(HPV) .

Thefollowinghighlightsimportantinformationaboutimmunizationsandthelivertransplantpatientandfamily .

Immunizations

Ifyouareplanningatriptoaforeigncountrythatrequiresanyimmunizations,youmayneedtohaveyourhealthcareproviderwritealettertothePassportBureaustatingthatyoucannotreceivecertainvaccines .Ifyouhavequestionsaboutvaccinationsorprecautionstotake,askyourprimarycareprovider .Youmaybereferredtoatravelclinic .AnotherresourceyoumaycontactistheOverseasMedicalCenter,phone(415)982-8380 .

Diphtheria/tetanus toxoid/pertussis vaccine (DPT)

Inactivevirus:Transplantpatientsandhouseholdmembersmayreceivevaccine .

Human Papillomavirus (HPV)

InactiveVirus:Transplantpatientsandhouseholdmembersmayreceivevaccine .

Hemophilus B (HIB)

Polysaccharide:TransplantpatientsandhouseholdmembersmayreceiveHIB .

Hepatitis A (Hep A)

Inactivevirus:TransplantpatientsandhouseholdmembersmayreceiveHepA .

Hepatitis B (Hep B)

Inactivevirus:TransplantpatientsandhouseholdmembersmayreceiveHepB .


Oral Polio Virus Vaccine (OPV)

Livevirus:TransplantpatientsandhouseholdcontactswithpatientsshouldnotreceiveOPV .Vaccinestrainsaretransmissible .BecauseOPVisshedinthestool,itisrecommendedthatIPVbegiveninsteadtotrans-plantpatientsandthoseinfrequentcontactwiththem .Transplantpatients should notchangediapersofchildrengivenOPV!

Inactive Polio Virus Vaccine (IPV)

Inactivevirus:TransplantpatientsandhouseholdmembersmayreceiveIPVinsteadofOPV(oralpoliovac-cine) .

Measles, Mumps, Rubella (MMR)

LiveVirus:LivertransplantpatientsshouldNEVERreceiveMMRaftertransplant .Itmaybegiventosiblingsandotherhouseholdmembers .

Flu Shots

Polysaccharide:LivertransplantpatientsandhouseholdmembersmayreceiveflushotsincludingtheH1N1 .

Neverreceivethenasalflumist—thisisalivevaccine .

Tetanus

Toxoid:Generallygivenevery10years .Livertransplantpatientsandhouseholdmembersmayreceiveteta-nusshots .

Tuberculosis (TB) testing using purified protein derivative (PPD)

TBtestingusingPPDmaybeperformedonlivertransplantpatientsandhouseholdmembers .

Varicella (Chicken Pox)

Ifthefamilymemberbreaksoutwithvesicles(pox),thetransplantpatientshouldnottouchthem .Rarely,achildwhohasreceivedthevaccinemaybreakoutwithafewvesicles .Ifthisoccurs,thepoxshouldbecov-eredwithaband-aidandcontactthetransplantteamforfurtherguidance .

Varicella Zoster (Shingles)

Livevirus:Transplantpatientsshouldnotreceivethisvaccine .Familymembersmayreceivethevaccine .

30NUTRITION FOLLOWING LIVER TRANSPLANTATION

Nutrition Following Liver Transplantation

Nutritionplaysakeyroleinyourrecoveryafterlivertransplantation .Aswithanysurgery,adequatecalories,protein,vitamins,andmineralsareneededforwoundhealing .Also,yournutrientanddietneedsmaychangeifyouhavecomplicationsand/orsideeffectsfromyourmedicationsafteryourtransplant .

Onceyouhavesuccessfullyrecoveredfromtheearlystageaftertransplant(e .g .yourappetiteisbacktonor-mal,yourweightisstable,andyourwoundsarehealingwell),thenyoushouldchangetoadietthatislowinsaturatedfatandhighinfiber,fruits,andvegetables .Thistypeofdietwillhelpreducerisksforotherchronicdiseasesincludingheartdiseaseanddiabetes .Alwaysdiscussyourindividualdietaryneedsandconcernswithyourdietitianordoctor .

Itisimportanttomaintainahealthyweight .Obesity,gaininganunhealthyamountofexcessfat,increasesyourriskofchronicdiseasesandcandamageyournewliver .

Short Term Nutrition Management

Inthefirstmonthafteryourlivertransplant,youwillberecoveringfromthestressofsurgery .Itisimportanttotakeinenoughprotein,calories,vitaminsandmineralstohelpyourwoundshealandpreventmuscleloss .Limitconcentratedsweetsorfoodshighinsalttoreducestressonyourrecoveringbodyfunctions .Ifyouhavenausea,poorappetiteorabnormalbowelfunctions,askyourhealthcareteamforsuggestions .Itiscommonforpatientstofeelfullaftereatingaportionofthemeal .Ifthishappens,youshouldtryeatingsmallerportions6timesadayratherthanlargerportions3timesperday .

Calories

Youshouldeatenoughcaloriestopreventmusclewastingandallowforgradualregainingofleanbodyweightthatisoftenlostwithsevereillnessbeforetransplantandduringhospitalization(bed-rest)aftertrans-plant .Choosenutrientdensefoods(dairy,wholegrains,plantfoods)insteadoffoodsconsidered“emptycalories”(e .g .sodas,candy) .Ifappetiteispoor,broadenyourscopeoffoodchoicestoallowforfoodprefer-ences .Fruitsandvegetablesneedtobepartofyourdiettoprovideenoughvitaminsandminerals .


Protein

Proteinisimportanttopromotehealingandmusclegain .Extraproteinisneededtoovercomemusclebreak-downcausedbythehighdosesofprednisonegivenrightaftertransplant .

Everydayyoushouldeatsomefoodsthatarehighestinprotein .Meatsandfishhavethehighestconcentra-tionsofproteins,butmanyvegetariansourcesarealsoexcellenthealthychoicesthatcanaddvariety .

Animal-based products high in Protein Plant-based products high in Protein

• Fish

• Poultry(chicken,turkey)

• Eggwhites(eggsubstitute)

• Eggs(nomorethan4yolksperweek)

• Dairyproducts(milk,cheese,yogurt)

• Redmeat(beef,pork,veal)

• Unsaltednuts

• Peanutbutter(orothernutbutters)

• Soyproducts(tofu,soymilk,tempeh)

• Driedbeans,lentils(splitpeas,kidney,black,pinto,navybeans,etc .)

• Seitan(wheatgluten)

Chooseleanproteinfoodsmoreoftenandpreparethemusingleancookingmethods(i .e .grillorbakemeatsratherthanfrying) .

Sugar

Prednisonecandecreasetheuptakeofsugarfromyourbloodintoyourbody’scells .Thismaycauseyourbloodsugar(glucose)leveltorise .Thisconditioniscalled“hyperglycemia”(highbloodsugar)or“steroid-in-duceddiabetes” .Youcanhelpmanagethissideeffectbyavoidingfoodsthatareconcentratedwithcarbo-hydrate(sugars) .

Foods High in Simple Sugars and should be limited:

• Sugar

• Molasses

• Doughnuts,pastries,sweetrolls

• Pies,cakes,cookies

• Candy,chocolatecandy

• Icecream,frozenyogurt,sherbet

• Honey

• Syrups(corn,maple,etc .)

• Jam,jelly,marmalade(smallamountsOK)

• Softdrinks(dietsodasOK)

• Othersweetenedbeverages(fruitjuices,teas:dietOK)

• Jell-O


Ifyoudevelophighbloodsugars,yourdietmayneedtoincludethefollowingguidelines:

• Eatatleastthreemealseachdayatregular,evenlyspacedtimes .Avoidskippingmeals .Eachmealandsnackshouldincludesomehighqualityprotein .Forexample,turkeysandwichonwholegrainbreadwithsalad .Asnackcouldbe1/2cup1%cottagecheesewithfreshfruitorberries .

• Carbohydratefoodsshouldbehighinfiber .Choosetoeatmorewholegrainproducts,legumes,andvegetablesinsteadofrefinedwhitebreadsandcereals .

• Limitfruittooneservingpermeal .Oneserving=1/2cupchoppedorcannedfruit,oronemediumpieceoffruit .

• Readfoodlabels .Avoidfoodswithaddedsugarslistedintheingredients .Differentnamesforsugarsinclude:fructose,maltose,dextrose,cornsyrup,highfructosecornsyrup,honey,rawsugar,brownsugar,etc .

Therearemanyresourcesavailabletolearnhowtobestmanagebloodsugars .Askyourdietitianorhealth-careproviderforreadingandeducationmaterials .Manyhealthcareprovidersorinsuranceplansprovidediabetesmanagementclasses .Askiftheymayappropriateforyou .

Sodium (salt)

Surgeryandmedicationssuchasprednisonecancauseyourbodyto“holdonto”(retain)sodiumandwater .Thiscanthencauseincreasedbloodpressure .Tohelpavoidthis,itisbesttorestrictsaltintake .The“NoAddedSalt”diet,whichisusuallyrecommended,suggestseatinglessthan3000mgofsodiumeachday .Tofollowtheserecommendations,youshould:

1 . Limitsaltwhencooking .Useherbsandspicesforflavor .

2 . Donotaddsaltafterfoodisprepared .

3 . Avoidorlimitthefollowingfoods:

High salt soups

Mostcanned,dehydrated,andbullionsoupsarehighinsalt .Readlabelstochoosethoselowestinsalts .Manypopularbrandsnowcarrylowsodiumversionsofsoups .

Processed meats

Ham,bacon,sausage,frankfurters,coldcuts(bologna,salami,pastrami),cornedbeef,smokedordriedmeatorfish,cannedmeat(unlesslabeled“nosaltadded”),saltpork .

Processed / canned food products

Cheese,packagedmeals/dinner,mostcannedfoods(exceptthoselabeled“nosaltadded”),frozenveg-etableswithsauces,pickles,sauerkraut,cannedvegetablejuice .


Restaurant items

Averageamountofsodiumperentreeis3000mg .

Salted snacks

Saltedcrackers,pretzels,potatochips,cornchips,tortillachips,popcorn,nuts,seeds,etc .

Condiments and miscellaneous:

Useinmoderation:catsup,preparedmustards,horseradish,sauces(barbecue,chili,steak,Worcestershire,etc .),MSG(monosodiumglutamate),soysauce,meattenderizers,picklerelish,olives,garlicsalt,onionsalt,saladdressings .

Note:saltsubstitutesarehighinpotassiumandshouldonlybeusedwithyourhealthcareprovider’spermis-sion .

Potassium

SomedrugssuchasCyclosporineorTacrolimuscanincreaseyourbloodpotassiumlevels .OtherdrugssuchasFurosemide(Lasix®)candecreasebloodpotassium .Abnormalbloodpotassiumlevelscancauseproblemswithmuscleandheartfunction .Yourhealthcareteammaychangeyourmedicationsand/ordiettohelpmanageyourbloodpotassiumlevels .

Belowisalistofcommonfoodshighinpotassium .Youmaybeaskedtoeitherincreaseordecreaseyourintakeofthesefoods .Rememberthatthesearegeneralguidelinesanddonotincludeallfoodsthatcontainpotassium .Ifyourdietneedstobestricter,askyourdietitianforamorecompletelist .

Fruits Vegetables Juices Other Foods

• Apricots

• Avocados

• Bananas

• Driedfruit

• Melons

• Nectarines

• Oranges

• Peaches

• Leafygreens

• Pumpkins

• Potatoes

• Splitpeas

• Driedbeans

• Lentils

• Tomatoes

• Orangejuice

• Prunejuice

• Tomatojuice

• V-8juice

• Milkanddairy

• PeanutButter

• Nuts

• Chocolate


Nutrition for Pediatric Patients Following Liver Transplant Childrenandadolescentswhoreceivelivertransplantationmayhavehadweightlossordelayedweightgainandgrowthbeforesurgery .Youprobablyhadtomakeadjustmentsinyourchild’sdiettoreducethecom-plicationsordiscomfortofchronicliverdisease .Aftersurgery,however,theemphasisistoprovideenoughcalories,protein,andotheressentialnutrientstopromotehealing,weightgainandgrowth .Encourageyourchildtoeatavarietyoffoodsandtrytolimittheamountofdietaryrestrictionsyouputonyourchild .Howev-er,yourchild’sdietshouldbesomewhatlowinsodium(salt)andconcentratedsweetstoreducethebody’sstressfrommedicationsandrecoveryfromsurgery .Thismaybedifficultwhenchildren’sdietsoftenincludefastfoodfavorites .

Thedietitianwillworkwithyouandyourchildtoidentifywholesomeandtastyfoodsthatareeasilytoler-atedandgoodsubstitutesforfastfood .Someinfantsandchildrenmayneedtubefeedingsaftertransplantfornormalgrowthanddevelopment .Ifnasogastrictubefeedsarenecessary,yourhealthcareproviderwillprescribethemandyouwillreceiveinstructionsonhowtomanagethefeedingsathome .

Long Term Nutritional Management

Transplant patients have increased risks for excessive weight gain, heart disease, diabetes, and low bone mineral density (osteopenia or osteoporosis) in the months and years following surgery.Somemedicationscanbeinvolvedinthedevelopmentofthesecomplications,butresearchersandhealthcareprovidersbelievedietandactivitybehaviorsareveryimportant .Riskscanbereducedbyadoptingalowfat,lowsaturatedfat,lowcholesterol,highfiber“HeartHealthy”dietasoutlined:

Foods Choose more often Choose less often

Vegetables Minimum3servingseachday .Tryfreshorfrozenthatarepreparedplainorwithsmallamountsofunsaturatedfats .

Vegetablespreparedwithbutter,cheeseorcreamsauce .

Fruits Minimum2servingseachday .Fresh,frozen,canned,ordried .

Fruitjuice;fruitservedwithbutterorcreamsauce .

Breads, Cereals, Grains, Dry Peas, Beans, and Soy

Wholegrainbread,cereals,pastaandrice;driedpeas,beans;bakedgoodsmadewithunsaturatedoilormarga-rine;soyfoods .

Refined,whitebreads,cerealsandbakedgood;whiterice;driedpeasorbeansmadewithcream,butter,orcheesesauce .

Eggs and Dairy Products

Eggwhitesandsubstitutes;skimor1%milk,yogurtandcottagecheese .

Eggyolks;wholeor2%milk,yo-gurtandcheese .

Meat and Poultry Leancutswithfattrimmed;turkeyorchickenwithoutskin;leanluncheonmeat;cookingmethodstohelpreducefat .

Fattycutsofmeat;baconandsau-sage;organmeats;anyfriedmeat;highfatluncheonmeat(salami)


Foods Choose more often Choose less often

Fish and Shellfish All,cookedusinglow-fatmethods . Fishandshellfishcookedwithbut-ter,cheeseorcreamsauces .

Fats and Oils Limitallfatsto<30%oftotalcalories .Margarine(madefromunsaturatedoils),includingreduced-ornon-fatva-rieties;reducedornon-fatsaladdress-ings(includingmayonnaise);liquidcookingoils;unsaltednutsandseeds .

Tropicaloils(palm,palm-kernel,coconut);transfattyacids(hydroge-natedfats);butter,lard,baconfat,shortening,fullfatsaladdressings;coconut .

Sweets and Snacks

*Remember that while some of these products are low in fat, they still contain calories, mostly from sugars.

Low-ornon-fatfrozendessertsandbakedgoods;flavoredgelatins;candysuchasgumdrops;lowsaltpretzelsandbakedsnackchips;air-poppedpopcorn .

Candyandbakedgoodsmadewithbutter,creamortropicaloils;highfaticecreamandfrozendes-serts;doughnuts;regularsnackchips .

Aneasywaytothinkofthisistoeatlotsofvegetable/plantfoods(wholegrains,fruit,vegetables)andfish .Limittheamountofhighfatanimalfoods .Readfoodlabelscarefullytoavoidunnecessaryfatsandsugars .

Itisalsoimportanttogetenoughcalciuminyourdiet .Adultsaftertransplantshouldhaveapproximately1200mgofcalcium(butlessthan2000mg)eachday .Thisamountmaybedifficulttoachieveifyoudon’teatdairyfoods .Talkwithyourhealthcareproviderordietitianaboutaddingcalciumsupplementsifyoufeelyourdietarycalciumislow .

Low-Fat Cooking Tips

• Microwave,broil,grill,orsteamwithoutaddingfat .

• Usenonstickspraysorcookware .

• Trimallvisiblefatoffmeatandremoveskinfrompoultry .(ItisOKtoremoveskinaftercooking)

• Experimentwithreducingtheamountofoilyouuseinbaking .(Oftenrecipeswilltastejustasgoodwithlessoil .)

Therearemanybooksandmagazinesdevotedtohealthandnutrition .Enjoytryingnewlowfat,healthyreci-pesforthewholefamily .

36FITNESS FOR LIFE

Fitness For Life

AtUCSF,westronglyfeelthatregularphysicalactivityisnecessaryaftertransplantforyoutobecomeashealthyandphysicallyfitaspossible .Everythingyoudotoimproveyouroverallhealthincreasesyourchanc-esofhavingalonglifewithyourtransplant .Withtheincreasingshortageoforgansavailablefortransplant,itisagoodideatomakehealthylifestylechoices . . . .asecondtransplantmaynotcomeeasily .

Thereisenoughscientificevidencetosaythatregularphysicalactivity:

• Decreasesriskofdeathfromheartdisease .

• Preventsordelaysthedevelopmentofhighbloodpressure .

• Reducesbloodpressureinpeoplewhoalreadyhavehighbloodpressure .

• Keepsmusclesandjointsstrongandfunctioning .

• Helpsbonesdevelopduringchildhoodandhelpsadultspreventosteoporosis(thinningofthebones) .

Special Importance of Physical Activity for Transplant Recipients

Longperiodsofinactivityand/orbedrestcauseslossofmusclemassandstrength(includingstrengthoftheheart)andlimitsyourabilitytoperformexercise .Asuccessfultransplantdoesnotautomaticallyreturnyoutonormalphysicalactivity .Formusclestoregaintheirfunctionandstrength,theymustbeusedregularly .Manypeopleaftertransplanthavehighbloodpressure,highcholesterol,andgainfatweight .Alloftheseincreaseyourriskofheartattacksorstroke .

Theweightgainfollowingtransplantisnotduetoprednisone .Theweightgainisaresultofthebalancebetweenhowmuchandwhattypesoffoodsareeatenandhowmanycaloriesareburnedthroughphysicalactivity .

How to Start an Exercise Program

Whenyoudecidetostartyourexerciseorphysicalactivityprogram,youshouldconsiderseveralthings:

• typeofexercise

• howoftenyouwillexercise(numberoftimesperweek)

• howlongyouwillexerciseeachsession(minutespersession)

• howyouwillcontinuetodevelopyourprogram

• howhardyouneedtoworkorexertyourself


Thekeyistostartslowlyandincreasegradually .Thatwayyourbodywilladapttotheexercisesoyouwillfeelcomfortableandnotgetdiscouraged .Youwilldefinitelyseeprogressaslongasyoustickwithaprogram .

TYPE of activity:

Thebestactivitiesuselargemusclegroupsinarhythmicmanner:walking,aerobics,cycling,swimming,jog-ging,machinessuchasclimbers,stationarycycles,skimachines .Chooseanactivitythatisconvenientandfunforyou .Therearenoactivitiesthatarerestrictedfortransplantpatients .

Ifyouhaveproblemswithyourjoints,anactivitythatsupportsyourbodyweightandisnotjarringwillbebestforyou(suchascycling) .If,afterstartingyoufeeldiscomfortinyourjoints,youmaywanttochangeyouractivitytoonethatis‘easier’onthejointssuchasswimming .Walkingiseasy,requiresnospecialequipmentotherthancomfortable,supportiveshoes,andmaybedoneanywhere,anytime .

FREQUENCY of activity:

Youshouldtrytoscheduleyouractivitysoyouaredoingsomethingatleast5daysperweek .Planningactiv-ityintoyourdailyschedulewillhelpyoustaywithitonregularbasis .Thereisnotimeofdaythatisbetterforexercise . . .italldependsonwhatworksforyouandwhenyouwillbeabletodoitregularly .

DURATION of Activity:

Startwithyouractivityfor10minutesandgraduallyincreaseby5minuteseveryweektoagoalof30ormoreminutespersession .Ifyouareworkingtoreduceorcontrolyourweightyouwillneedtoburnmorecalories,whichmeansthatyoumustexerciseforalongerdurationeachsession . . . .thelongeryouexercise,themorecaloriesyouwillburn .

INTENSITY of Activity:

Thequestionis“howhardmustIworkmyselfwhenIexercise?”Youshouldworkhardenoughto:

• makeyourheartbeatfaster

• allowyoutobreatheinawaythatyoucantalkwithsomeoneduringyoursession

• makeyoufeelwarm(perspirationisok)

• feelthattheexerciseis“somewhathard”foryou

Theincreasedeffortcanbeworkedinforshorttimesduringyourexercisesession .Forexample:climbhillsandthenwalkdown,orwalkmuchfasterforablockortwothenwalkingslowerforablockortwo,etc .Thiswilladdvarietytoyoursessionaswellasfurtherimproveyourfitness .

38FITNESS FOR LIFE

PROGRESSION of Activity:

Itisbesttostartslowlyandincreasegradually .Startwithashortdurationofactivityandgraduallyincreasethetimeofeachsession .Startwithacomfortable,lowerlevelofintensity(work)andgraduallyincreasetheexertionlevelasyougetusedtotheexercise .Peoplemayhaveproblems,suchasinjuries,whentheydotoomuchexercisetoosoon .Gradualprogressionwillpreventthosekindsofproblems .

Resistance (Weight) Training

Exercisesthatcaneasilybedoneathometostrengthenmusclesinclude:

• climbingstairs

• standingupandsittingdownintoachair(repeat10–15times,usingyourhandsaslittleaspossiblesoyourlegsdothework)

• liftingsoupcans

• push-upsagainstthewallorfromacounter

Asyoubecomestronger,youmaywanttousefreeweightsorweightmachinesatagym .Startwithalowweightthatyoucancomfortablylift10–12times .Rememberthattheweightbeingliftedwillincreasethestressonthejoint(suchaselboworshoulder),soiftheweightistooheavyortheexerciseisnotperformedcorrectlyyoumayhurtyourself .Don’tholdyourbreathwhenliftingweights .

The CHALLENGE = Sticking with it!!

1 .Youmustworkhardenoughwithyourbody(heart,lungs,muscles,etc .)sothatchangescanhappen .

2 .Youmuststaywiththeprogram .

Thefactis:increasedphysicalactivityisapersonalcommitment .Nooneelsecandoitforyouandyourhealthovertimeisdependentonbeingphysicallyactiveonaregularbasis .

U.S. Transplant Games

TheU .S .TransplantGamesisawonderfulcelebrationopentoallrecipientsofsolidorganandbonemar-rowtransplantsintheUnitedStates .Alltransplantrecipientsarewelcome,whetherornottheyareathletes .TheGamesprovidecompetitionforthoseinterestedinchallengingthemselvesandisalsoachancetomeetothersfromalloverthecountrywhohavethesimilarexperienceoftransplantation .Atthefirsteventin1990,therewere400recipients,andithasgrowntoover5,000recipients,familyandfriends .Itisanexcit-ing,inspirationaleventforeveryone .TheUCSFTransplantServiceencouragesanyonewhoisinterestedinparticipating .

TheNationalKidneyFoundation(NKF)organizestheU .S .TransplantGamesevery2years .Alltransplantrecipients(heart,lung,liver,kidney,pancreas,andbonemarrow)ofallagesandallathleticabilitiesarewelcomeandencouragedtoparticipate .Thisisyourtimetoshowyourfamily,friends,donors,anddonor


familiesthatyou’renot“just”alive,butlivinglife,too!Eventsincludebothteamandindividualraces,swim-ming,golf,tennis,tabletennis,bicycling,bowlingandmore .

Therearealsosocialevents:openingandclosingceremonies,parties,workshopsfordonors,andaspecialtributetoallorganandtissuedonors .FormoreinformationabouttheTransplantGames,pleasevisittheNationalKidneyFoundation(www .kidney .org)orcalltheNorthernCaliforniaChapteroftheKidneyFounda-tion,(800)622-9010 .ContacttheAmericanLiverFoundationforliverwalks(www .liverfoundation .org)800-GOLIVER .

40HEALTH MAINTENANCE

Health Maintenance

Skin Cancer

Transplantpatientshaveanaddedriskofcancer,especiallyskinandlipcancers .Thisriskincreaseswithtimeduetolongtermimmunosuppression(Antirejectionmedications) .

Immunosuppressivedrugsmakeyourskinsensitivetothesuncausingyoutoburneasier,faster,andtoamuchgreaterdegreethanbeforeyourtransplant .Prolonged,repeatedexposuretothesunproducesperma-nentskinchangesanddamage .Rememberthatyoucanburnevenifyourskinisdarkbecauseyourmedi-cationsmaymakeyoumoresensitivetothesun .

Yourriskofdevelopingskincancersincreaseswithtimeaftertransplant .Thesecancersaretentimesmorecommonintransplantpatientsthaninthegeneralpopulation .Itisthereforeessentialthatyoulimityourex-posuretothesunandthatyouprotectyourselfwhenyouareoutside .

Warningsignsofskincancersareanysoresthatbleed,scab,grow,ordonotgoawayinafewweeks .Suchsoresaremostlikelytoappearontheexposedpartsofyourbody—face,neck,head(especiallyifyouarebald),andyourhandsandarms .Amolethatbleedsorchangescolororsizemustbeexaminedimmediately .Youmustcontactyourlocalprovidertobeevaluatedbyadermatologist .Youshouldseeadermatologistyearlyormorefrequentlyifindicated .Youmayneedtobereferredtoa“highrisk”dermatologist .ContactyourTransplantproviderformoreinformation .

Theraysofthesunthatareresponsibleforskincancersareultravioletrays(UVrays)whicharepresentevenoncloudydaysandinshadyareas .Weadviseyoutoalwaysprotectyourskinfromexposuretotheserays .Avoidthemid-daysun(10am–3pm)whenultravioletraysarestrongest .ForextraprotectionfromthesunwearsunscreenwithSPFofleast30,lipbalm,broadbrimmedhats,longsleeves,andslackseverytimewhenyougooutdoors .

Routine Self Examination

Cancersaremorecommonwhenpeopleareonimmunosuppressivemedications .Becauseofthis,werec-ommendamonthlyselfexamination(askyourprimarycareproviderifyouneedinstructionhowtodobreastortesticularself-examination)androutinemedicalcheckups .PAPsmearsandbreastexamsshouldbedoneeveryyear .ReportsshouldbesenttotheTransplantOffice .Yourlocalphysiciancanperformthesetests .

Acne

Prednisonemaycauseacneonyourface,chest,shoulders,orback .Cyclosporinecanmakeyourskinoilyintheseareas .

Ifyourskinbecomesexcessivelydry,temporarilystopusingsoapsontheseareastoallowtheskintore-coveritsnaturalmoisture .


Youmayuseoverthecounterpreparations(suchasOxy-5orOxy-10)totreatacne .WerecommendthatyoudonotuseRetin-A(apowerfulacidformofVitaminA) .Itcausesincreasedsunsensitivitywhichshouldbeavoided .

Ifacneremainsaproblem,tellusaboutit .Severeorinfectedacnemustbetreatedbyadermatologist .

Dry Skin

Ifyouhaveproblemswithdryskin,useamildsoapandapplybodylotionafterbathing .Forseveredry,scalyskinyoumayneedagoodbodylotion .Therearemanygoodproductsavailablefromyourlocaldrugstorewithoutaprescription .

Cuts and Scratches

Keepminorcutsandscratchescleananddrybywashingdailywithsoapandwater .Ifyouwish,youmayap-plyanantisepticsuchasBetadinesolution .Forlargecuts,dogbites,etc .,contactyourdoctorimmediately .

Youwillnotneedanyspecialskincareunlessyouhaveproblemswithacneordryskin .Youshouldtakeabathorshowerasoftenasnecessary(dailyoreveryotherday)tokeepyourskinclean .Useanysoapthatyouprefer .

IMPORTANT:Anypersistentskinproblemrequiresanevaluationbyadermatologist .

Increased Hair Growth

ThisproblemiscausedbyCyclosporineandisespeciallyannoyingtowomen .Youcanremovehairwithahairremovalcream .Thereareseveralcreamsonthemarketmadeespeciallyforyourface .Besuretofollowbottledirectionsconcerningtesting .Hairremovalcreamcausessevereirritationtotheeyes,mucousmem-branes,andlipssoapplycarefully .Asaferwaytodiminishthelookofexcessivehairistobleachtheextrahairgrowthwith50%peroxidesolution .WhenyourPrednisonedoseislessthan20mgperday,youmaywanttoconsiderwaxingorelectrolysisforpermanenthairremoval .

Caution: Parents should be particularly careful when using these products on infants and young children since their skin tends to be more sensitive.

Hair Loss

Tacrulimus®(Prograf)cancausehairloss .Thisusuallystopsorslowsdownasyouhaveyourdoselowered .

Hair Care

Prednisoneoftenaffectstheconditionofyourhairbecauseitmakesyourhairweaker .Permanentwavelo-tion,tints,dyes,andbleachingmaycauseyourhairtobreak .WerecommendthatyouwaituntilyourPredni-sonedoseislessthan20mgperdaytohaveapermanentortocoloryourhair .


Dental Care

Routinedentalworkshouldbedonesixmonthsafteryourtransplant .Thisincludeshavingyourteethcleaned .However,ifyouhavetoothorgumpainyoushouldseeyourdentistimmediately .

• Youwillnotneedtotakeanantibioticwhenyouhavedentalworkdone,unlessyourdentistdeemsnec-essaryduetoapossibleinfection .

WefollowtheAmericanHeartAssociation(AHA)guidelinesforprophylaxis .Yourlocalhealthcareprovideranddentistareawareoftheseguidelinesandshouldrefertothemshouldtheyhavequestionsregardingantibioticsfordentalworkintransplantpatients .

Itisextremelyimportantthatyoupracticegoodmouthcareafteryourtransplanttomaintainhealthygumsandteeth,aswellastoavoidinfection .Brushyourteethonceortwiceaday .Flossyourteethonceaday;begentleifyounoticeanybleeding .Contactyourdentistordentalhygienistifyourgumscontinuetobleedwithflossing .

Ifyourdentalworkwasnotcompletedbeforetransplantation,youmustseeyourdentistforevaluationwithinthefirstfewweeksafteryoureturnhome .

Followtheprocedureoutlinedbelowwhenyouvisitthedentist:

• Makeanappointment .

• Informthedentalofficethatyouhavehadyourtransplant .

TheTransplantCenterwillfaxormailadentalclearanceletterasrequestedbythedentistorbyyou .Seesampledentalletteronthenextpage .

43 LIVER TRANSPLANT HANDBOOKPaper is 100% Post Consumer Waste, Processed Chlorine Free

University of CaliforniaSan Francisco

Liver Transplant Program

505 Parnassus Avenue Room M-896, Box 0780 San Francisco, CA 94143-0780 tel: 415/353-1888 fax: 415/353-8709

350ParnassusAvenueSuite805SanFrancisco,CA94117tel:415/353-1888fax:415/353-2102

Date_____________

Name_______________________________

DOB_____________

ToWhomItMayConcern:

Pleasebeadvisedthatthispatientreceivedalivertransplanton_________________ .

Therearenocontraindicationsfordentalworkatthistime .Pleaseseethefollowingguidelinesforpostlivertransplantpatients .

Antibiotic prophylaxis:WefollowtheAmericanHeartAssociationguidelinesforan-tibioticprophylaxis .Postlivertransplantpatientsdonotneedprophylacticantibioticsforroutinedentalprocedures .AntibioticsmaybegivenatthediscretionofthetreatingDentistifrequiredasstandardofcareforaparticularprocedure .

Local Anesthetic:ThispatientmayreceivelocalanesthesiasuchasNovocainasneeded .

Pain Medications:Thepatientshouldnotreceiveproductscontainingaspirinoribu-profen .He/ShemayreceiveproductscontainingTylenolaslongasthetotaldailydosedoesnotexceed2gramsperday .Patientsmayreceiveashortcourseofnarcoticsifneeded .

Wecanbereachedat(415)353-1888foranyadditionalquestions .

Thankyou,

UCSFTransplantService


Prednisone Dose and Routine Dental Care

YourPrednisonedoseshouldbe5mgonce/day(orless)whendentalworkisdonetoreducethepossibilityofinfectionandbleeding,andtoincreasethehealingprocess .But,donotavoiddentalcareifyourPredni-sonedoseishighandyouhavetoothorgumpain .Itisbettertohavehealthyteethandgumsthantoallowthemtobecomeinfected .

Ifyourdentisthasanyquestionsorifyouhaveanyquestions,contacttheLiverTransplantOfficeforfurtherinformation .

Smoking

Don’tsmoke .Youstoppedsmoking(orweresupposedto)priortotransplant .Nowthereareevenmorerea-sonsnottosmoke .

Smokingdamagesthelungs,puttingyouatgreatriskforlunginfectionsincludingbronchitis,emphysema,andpneumonia .Italsoincreasesyourriskofcancer(especiallyaftertransplant) .Smokinglessenstheabilityofyourredbloodcellstocarryoxygen,solessoxygengoestoallofyourtissuesdecreasingyourabilitytoheal .Smokingnarrowsyourbloodvessels,especiallythoseinyourlegs,arms,andheart .Smokingalsoin-creasesacidinyourstomachthatcandelayorpreventthehealingofanyulcersthatmayoccur .Alloftheseproblemsaremoreseriousinsomeonetakingimmunosuppressivemedications .

Talkwithyourprimarycareprovideraboutshorttermmedicationsorsmokingcessationprogramsthatmaybeavailableifyouneedhelptostopsmoking .

Alcohol and Illegal drugs

Do notdrinkalcoholicbeveragesortakedrugs,includingmarijuana .Thisincludesnon-alcoholicbeersandwines .(Theystillcontainsmallamountsofalcohol) .Alcoholismetabolized(brokendown)bytheliverandcausesliverdamageaswellasliverfailure .Almostallmedicationsaremetabolizedbytheliver .Thecombi-nationofthesemedicationswithalcoholcouldseriouslyharmyourliver .

Smokingmarijuanaexposesyourlungstoharmfulfungithatcanleadtolifethreateninginfections .

Ifyouarehavingtroublelivingwithoutalcoholordrugs,youneedtoknowthatthiscanbealifethreateningproblem .Helpisavailable .Contactyourlocalprimarycarephysicianorthetransplantsocialworker .

Sexuality

Youmayresumesexualactivitywhenyoufeellikeit .Remembertoalwayspracticesafesexifyouarenotinamonogamousrelationship .Contactthetransplantteamtoreviewimmunosuppressivemedicationsbeforebecomingpregnantorfatheringchildren .Contactyourgynecologisttodiscussmethodsofbirthcontrol .

Family Planning

Somepeoplewanttohavechildrenaftertheyhavehadalivertransplant .Formanywomenthisispossible,buttherearealsoriskstothemotherandfetus .ItisimportanttodiscusstheseriskswiththeTransplant


Teamsothatyoucanmaketherightdecisionforyouandyourfamily .Maletransplantrecipientsshouldalsoreviewmedicationswiththetransplantteambeforefatheringchildren .Someimmunosuppressivemedicationsmayneedtobechangedordiscontinuedpriortopregnancytoprotectthebabyfrompotentialbirthdefects .

Return to work/school/disability: frequently asked questions

1. When can I return to work / school?

Mostpatientsareabletoreturntowork3–6monthsaftertransplantwithnorestrictions .Generally,therearenoweightliftingoractivitylimitsapproximately3monthsaftertransplant .Mostpeoplestartplanningaboutamonthaftertransplantfortheirreturntowork .Ofcourse,thisdependsonyourparticularrecovery .

Childrenmaybereadytoreturntoschoolapproximately3monthsaftertransplant .

2. How long will I be on disability?

Disabilitybenefitsdependonyourphysicalcondition .Ifyouwereondisabilityatthetimeofyourtrans-plant,yourcontinuedeligibilityforbenefitswillbereviewedsometimeafteryoursurgery .Thetimingofthisreviewwilldependonyourparticulardisabilityplan .Ifyourliverfunctionisgoodandyourconditionisstable,thelivertransplantteamwillnotbeabletosaythatyoucontinuetobedisabled .Generally,by6monthsaftertransplant,patientsarenolongerdisabledbecauseoftransplantation .

3. What should I do with disability forms?

Thetransplantteamwillbeabletocompleteyourdisabilityformswithinthefirst3monthsaftertrans-plant .Youmaybringtheformstoyourclinicappointmentsormailthemtothetransplantsocialworker .Generally,after3months,yourprimarycareproviderwillbeseeingyoumoreoftenthanthetransplantteamandistheappropriatepersontocompleteanydisabilityforms .

4. What if I don’t have a job?

Ifyouhavebeenoffworkpriortotransplant,thereishelpavailabletoassistyouinfindingajob .TheDepartmentofVocationalRehabilitationcanhelpyouidentifyyourskillsandoptions .Theycanalsohelpyouwithjobfindingskills,re-trainingorschooling .Callthetransplantsocialworkerformoreinformation .

Call 1 (800) LIVER TX (548-3789) with non urgent questions, or messages for the transplant team. Messages may be left 24 hours a day. Your message will be returned within one business day.

Travel

Therearenotravelrestrictionsaftertransplantifyourconditionisstable .See page 28 for additional informa-tion about immunizations.Contactyourlocalhealthcareproviderortravelclinicforquestions .Whentravel-ing,remembertoplantotakeenoughmedicationplusextrasoyouwillbepreparedifyouhaveunexpectedchangesinplans .Alwayscarrymedicationonboardratherthancheckingwithyourluggage .

Moreinformationcanbefoundatwww .cdc .gov .RememberthatyoumayNOTreceivelivevaccines .


Other Health Care Concerns

Illness and Infection

Youneedtoprotectyourselffrominfectionbecauseyourimmunesystemissuppressed .Washyourhandswithsoapandwateroftentowashawaybacteriaandviruses .Keepyourhandsawayfromyourfaceandmouth .Washhandsafterusingthebathroomandbeforeeating .Avoidsickpeople .Asksickfriendstovisitwhentheyarewell .Ifyouhaveawoundanddoyourowndressingchanges,washyourhandsbeforeandafteryouchangethedressing .Whenyoucoughorsneeze,usetissues,discardtheminthetrash,thenwashyourhands .

Evenwhentakingallpossibleprecautions,therearetimeswhenyoumaygetaninfectionanyway .Ifyouhaveafeverover100 .4°F(38°C)oryoudonotfeelwell,seeyourlocalhealthcareproviderandcallthetransplantoffice .Youmayneedtohaveblooddrawnandachestx-ray .Youwillbeprescribedanantibioticifyouhaveabacterialinfection .Sometimesyoumayneedtobeadmittedtothehospitalfortreatment .

Rememberthatstomachpains,problemswithyourheart,problemswithbreathing,orfeverscannotbediagnosedoverthephone .Seeyourownhealthcareproviderforanytreatment .Yourhealthcareprovideroryoumaycallusat(415)353-1888ifthereareanyquestionsaboutyourcare .

Call 1 (800) LIVER TX (548-3789) with non urgent questions, or messages for the transplant team. Messages may be left 24 hours a day. Your message will be returned within one business day.

Colds and Flu

Youwillgetcoldsandflu .Ifyougetacold,youmaytakeoverthecountermedications(ex:Sudafed,Dimetapp,etc .) .AvoidcoldremediesthatcontainaspirinandIbuprofen .LimitTylenol(acetominophen)to2000mgperday .Readlabelsandprescriptions–Tylenoliscontainedinmanymedications .Ifyouhaveacough,youmaytakecoughmedicine(ex:Robitussin) .However,ifyourcoughbecomesproductiveandyourunafever,callyourlocalhealthcareprovider .Youmayneedachestx-rayandantibiotics .

ForChildren:Pleasecheckwithyourpediatrician .

InformtheTransplantOfficewheneveryouareexposedtoanycommunicablediseasethatyouhavenotpreviouslyhad .Thisisparticularlyimportantforlivertransplantchildren .

Adults:1(800)LIVERTX

Monday–Friday,8am–5pm

Children:1(800)UCKIDGI


Herpes Zoster (Shingles)

Shinglesappearasarashorsmallwaterblistersusuallyonthechest,backorhip .Theymayalsooccuronotherareas .Therashmayormaynotbepainful .Youshouldnotifythetransplantofficeifthisrashappears .

Persistent Headaches

CyclosporineandTacrolimuscancauseheadaches .Pleaseinformyourtransplantnursepractitionerforad-justments .Iftheybecomepersistentyoumayneedtoseeaneurologist .

Skin Eruptions

Ifyoudevelopwarts,persistentsores,ormolesyoumustseeaphysician,preferablyadermatologist .Ifaskineruptionrequiresmedicaltreatment,haveyourhealthcareprovidercallthetransplantoffice1(800)LIVERTXtodiscussthetreatment .

Thrush

Thisisaninfectioncausedbyfungusthatusuallyaffectsthemouth .Itcanalsoaffecttheesophagus(thetubetoyourstomach),thevaginainwomenorthediaperareaininfants .Withoralthrush,yourmouthmaybeverytenderandyoumaynoticethatyourtongueiscoveredbyawhitefilm .MycelexTrocheorNystatin(ayellowliquid)canhelpclearupthisinfection .Itishelpfultoeatsoftfoodsordrinkliquids .Withvaginalthrush,youwillnoticeanincreaseinvaginaldischargeandpossiblyachangeinitscolor .Yourgenitalareamayalsoitch .Vaginalcreamsandothermedicinesareavailable .TalkwithyourprimarycareproviderortheTransplantTeamifyouthinkyouhavethrush .Donottakeoralantifungals(fluconazole)withoutcheckingwithyourtransplantteamfirst .Antifungalscancauseadrasticelevationinyourtacrolimusorcyclosporinebloodlevels .

Chicken Pox, Measles, and Mumps:

Chickenpoxisavirusthatcausesamildfeverandsmallredbumpsontheskinandcanbeveryitchy .Itisspreadbycomingincontactwithanotherpersoninfectedwiththevirus .Beinginthesameroomwithaninfectedpersoncantransmitthevirus .Ifyouhadchickenpoxasachild,youmostlikelywillnotgetitagain .However,ifyouhavenothadchickenpoxoryouarenotsure,lettheTransplantTeamknow .Thisisarelativelymilddiseaseinchildren .Inadultschickenpoxismoresevere—especiallyinimmunocompromisedadults .Ifyoususpectyouhavebeenexposedtochickenpox,calltheTransplantTeamimmediately .

Emergency Medical Identification

Youshouldwearamedicalidentificationbraceletornecklaceatalltimesafteryourtransplant .Youmayobtainaformtoorderoneatyourlocalpharmacy .Indicateontheformthatyouhavehadalivertransplant,andare“immunosuppressed .”Includethe24hourhotlinenumber(415)353-1888tobeprintedonthetag .Itisagoodideatoalsohaveyourlocalhealthcareprovider’sphonenumberprintedonthetag .Ifthetrans-plantpatientisachild,youmaywanttoprinttheparents’firstnamesandhomephonenumber(s)aswell .


Guidelines for Visiting Transplant Children

• Brothersandsisters(siblings)mayvisitinsinglerooms .Whenvisitinginshared,doublerooms,theotherpatient’sfamilymustgivepermission .Specialarrangementscanbemadeforpatientsin4bedroomsandmonitoredrooms .

• Eachfamilymaybringonlytwochildrenunder12atonetime .

• AssoonasthefamilyarrivesintheFamilyLounge,oneparentmustnotifythenurseofyourarrival .

• Thenursewillcometothewaitingroomtocompletethescreeningforthevisit .

• Ascreeningformmustbecompletedbythenurseoneachchildforeachvisitbeforethevisitoccurs .

• Ifthevisitisapproved,thenursewillputasiblingvisitorstickeronthechild’sclothingandbringhim/hertothepatient’sroom .Ifthechildvisitorisnotapproved,he/sheandaresponsibleadultwillneedtowaitintheloungeuntilarrangementscanbemadeforthesiblingtoleavethehospital .

• Ifthereisanydoubtaboutapossibleinfectionofoneorbothchildrenvisitors,neitherwillbeallowedtovisit .Pleasedonotbringchildrenvisitorswithcolds,sorethroats,runnynoses,etc .

• Allchildrenmustwashtheirhandsthoroughlybeforeenteringthepatient’sroom .

• Novisitingchildrenmaybeallowedintheplayroomorotherpatientroomsexceptforprearrangedspe-cialoccasions(birthdays,holidays,etc) .

• Nochildrenvisitorsmayreceivetreatmentsormedicationsofanykindwhiletheyarevisiting .

• Parentsareresponsibleforcontinuoussupervisionoftheirownchildrenvisitorsunder12 .Thestaffmayaskyoutotakeyourchild/childrenhomeiftheyareunsupervisedordisruptive .

• Therearenoaccommodationsforvisitingchildrenunder12tospendthenight .

• Ifthereareanyfalls,bumps,cutsoraccidents,aparentmustnotifythenursepromptly .Youmaybeaskedtotakethevisitortotheemergencyroomfortreatment .

• VisitingchildrenmustleavethePediatricfloorimmediatelywhenthevisitisover .

Thankyouforbeingcarefulandfollowingtheseguidelines .Ifyouhaveanyquestions,pleasefeelfreetoaskanyofthenurses .


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50RESOURCES

Resources

Getting Back Into Life!

Aseriousillnesscancreatemanypersonalandfamilystresses .Afteryourtransplant,therewillbedifferenttypesofadjustments .Youandyourfamilycanexpectsomeupsanddownsrelatedtoyourphysicalcon-ditionaswellasemotionalreactionstothisnewphaseinyourlife .Forexample,youmayfeelsomewhatanxiouswhenyougetyourlabsdrawnorwhenyouneedtohavetestsifyourlabvalueschange .Youoryourcaregiversmayhavemixedfeelingsasyoubecomemoreindependentandresponsibleforyourowncare .Thesearenormalreactions .

Ifyouhavebeensickforalongtime,youmayhavehadtogiveupsomeofyournormallifesuchaschildcare,work,andactivitieswithfriends .Youandpeopleclosetoyoumayhavesomeupsanddownsasyougetbacktoyournormalactivitiesandroles .Yourillnessmayalsohavechangedyourrelationshipwithyoursignificantother .Sometimesitmayhelptotalktosomeoneelsewhoknowswhatyouaregoingthrough .Inmostcommunities,therearetransplantsupportgroups .Thetransplantsocialworkerisavailabletotalkwithyouaboutthesetransitions .Thesocialworkeralsohaslistsofthecommunitysupportgroupsandotherresourceswhichmayhelpyou .

Ifyouhadasudden,unexpectedtransplant,youmayexperiencesomesadnessordepressionasyoustarttofeelphysicallybetter .Remember,youdidnothaveachancetoplanorprepareforthechangesinyourlifeandyouwillneedtodothatasyourecover .Again,pleasespeakwiththetransplantsocialworkerorthetransplantteamifyouarehavingdifficulty .

Noonecanpredictexactlywhatyourrecoverywillbelike .Complications,minorandserious,mayoccuranytime .Rememberthatthetransplantteamwillworkwithyourprimaryhealthcareprovidersandyoutotakecareofyou .

Theremayalsobesomepracticalproblemsaftertransplantsuchasinsuranceorfinancialissues .Yourmedicalcarefollowingtransplantationisveryexpensive .Therefore,youmustkeepcurrentwithyourinsur-ance .Knowwhatitcovers,howitworks,andwhatyourresponsibilitiesare .Youmustcheckwithyourinsur-ancecompanytofindoutwhichlaboratoriesandpharmaciesyoumayusewithyourplan .Mostinsurancecompanieswillonlypaywhenyouusethehealthcareproviderstheyapprove .Remember,itisyourrespon-sibilitytomakesureanyvisitstoUCSFhavebeenapproved(authorized)byyourinsurance .Ifyourinsurancecoveragechanges,pleasecalltheUCSFFinancialCounselor,phone(415)353-8776toupdateyourrecords .

Somepeople,astheyrecoveraftertransplant,loseeligibilityfordisabilitybasedinsuranceslikeMedi-CareandMedi-Cal .Ifyouthinkyouaregoingtoloseyourinsurance,talkwitheitherthefinancialcounselorortransplantsocialworkeraboutwhatothercoveragemaybeavailable .Donotwaittocalluntilyouhavenoinsurance .Youmustplanahead .


Otherpracticalissuesthatyoushouldcontinuetokeepupdatedincludeadvancedirectives,wills,andpowerofattorney,especiallyifyouhavenolegalnextofkin .

Thereislightattheendofthetunnel!!

Lifeaftertransplantcanbearealrollercoasterrideforpatients,families,andfriends .Thegoaloftransplan-tationistohelpyoureturntogoodhealthandyourusuallifestyle .Mostpatientsareabletoreturntowork,raisefamilies,andleadfull,physicallyactivelivesaftertransplantation .

Yourtransplantteamlooksforwardtohelpingyouinwhateverwaywecan .Talktous .

Adult Support Group

TheLiverTransplantSupportGroupisheldonTuesdaysaftertheadultTransplantClinicon9Longinthesolariumfrom1–2pm .Itisopentoallpresentandfuturelivertransplantrecipientsandtheirfamiliesandfriends .

52RESOURCES

Pamphlets and Organizations to Help You

Pamphlets available at www.liverfoundation.org:

• BiliaryAtresia

• DecidetoMakeaDifference(organdonor)

• DietandYourLiver

• FactsAboutLiverTransplantation

• Hemochromatosis

• LiverDisease:AProblemfortheChild

• ViralHepatitis:Everybody’sProblems

• YourLiverLetsYouLive

Organizations:

• American Liver Foundation 75MaidenLaneNewYork,NewYork100381-800-GO-LIVER(465-4837)www .liverfoundation .org

Northern California ChapterOneSansomeStreet,Suite2100SanFrancisco,CA94104(415)984-3169

• Centers for Disease Control http://www .cdc .gov

(See travel guidelines)

• Transplant Recipients International Organization (TRIO): Your voice of the transplant (800)TRIO-386info@trioweb .org

• United Network for Organ Sharing (UNOS)www .unos .org

• California Transplant Donor Network (888)570-9400www .CTDN .org

(Pediatric)

• Children’s Liver Disease Foundation www .childliverdisease .org

• Children’s Organ Transplant Association (800)366-2682www .cota .org


Notes

liver transplant patient handbook - ucsf medical center

Documents