TA L K I N G A B O U T T R A N S P L A N TAT I O N

What Every

Patient Needs

to Know

U N I T E D N E T W O R K F O R O R G A N S H A R I N G

Copyright © 2016 United Network for Organ Sharing

UNITED NETWORK FOR ORGAN SHARING

United Network for Organ Sharing (UNOS) is a private non-profit 501(c)(3) organization

that operates the Organ Procurement and Transplantation Network (OPTN) under contract

with the federal government. For more information about UNOS, living donation,

and organ transplantation, please call 1-888-894-6361 or visit www.transplantliving.org.

PARTNERS IN EDUCATION

UNOS gratefully acknowledges our Partners in Education

whose generous support helps make this resource possible:

Novartis

Genentech

Sanofi

Astellas

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Table of Contents

Section 1: Introduction to the Transplant Network• UnderstandingTransplantation• DeceasedDonorOrganDonation,Matching,andAllocation• CommonQuestionsaboutTransplantation

Section 2: Preparing for Your Transplant• TheTransplantProcess• TransplantHospitals• TheWaitingList• PreparingforYourTransplant• PreparingforYourLovedOne’sTransplant

Section 3: Living Donation• History• FactsaboutLivingDonation• GettingStarted• WhatYouShouldKnowaboutLivingDonation• QuestionstoAsk

Section 4: Developing a Financial Plan• SupportServices• TransplantCosts• FinancingYourTransplant

Section 5: Life after Transplant• ImmediatelyafterTransplant• LifestyleChanges• CommunicatewithYourDonororDonorFamily• PayitForward

Section 6: Promoting Organ and Tissue Donation in Your Community• DonationFactsandFigures• StateRegistryResources• TheOrganandTissueDonationProcess

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Acknowledgements

What Every Patient Needs to Know was developed and written as a project of the OPTN/UNOS Patient Affairs Committee (PAC). PAC members who contributed to the project are:• KristieLemmon,MBA–LivingDonortoson,Anchorage,AK• JohnFallgren,RN,BS–Portland,OR• AnnaZitnay,RN,CCTC–NewHaven,CT• J.EricHobson,MSN,CRNP–Philadelphia,PA• MichelleBrown–Atlanta,GA• DarnellWaun,RN,MSN–SanAntonio,TX• PeggyStewart,MSW,CSAC,PhD–LosAngeles,CA• MonicaMorrison,PA-C–Seattle,WA• JosephHillenburg–Bolingbrook,IL• MarkTagliaferri–Penfield,NY• OliverHale–Kentwood,MI• SheilaBailey-Stewart,ACSW,LCSW–Richmond,VA• JanFinn,RN,MSN–Westwood,KS• JohnHam,MD–LasVegas,NV• LisaStanzione,RN–Richmond,VA• ChinyereAmaefule,MHSA–Rockville,MD

Support for the project was provided by the following UNOS staff:• CatherineMonstello–UNOSResearchDepartment• ChadSouthward–UNOSInstructionalInnovationsDepartment• ChristineFlavin–UNOSPolicyDepartment• JillFinnie–UNOSCommunicationsDepartment

Introduction to the Transplant Network: The Big Picture

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Ifanorgantransplantisinthefutureforyouoralovedone,youarenotalone.Patientsandtransplantprofessionalswrotethisbooklettohelpyoulearntheprocess.

Ifyouarereadingthisforthefirsttime,youmayfeelscaredandconfused.Withsomuchtoabsorb,itmayhelptoreadthisbookletwithsomeoneclosetoyou.Keepapenandpaperhandytowritedownquestionstoaskyourhealthcareteam.

Thissectioncovers:• thehistoryoftransplantation• howtheorgantransplantnetworkis

managedintheU.S.• theprocessformatchingpatientswith

donatedorgans

Latersectionswillcover:• howtoprepareforatransplant• whathappenswhileyouareonthe

transplantwaitinglist• howalovedonecanbecomealivingdonor• transplantfinanceissues• whattoexpectafteryourtransplant

Understanding TransplantationA Brief HistoryIn1954,akidneywasthefirsthumanorgantobetransplanted.Liver,heart,andpancreastransplantswereperformedinthelate1960s,whilelungandintestinalorgantransplantsbeganinthe1980s.

Untiltheearly1980s,organrejectionissueslimitedthenumberoftransplantsperformed.Advancesintreatingrejectionledtomoretransplantswithbetteroutcomesforpatients,andanincreaseindemand.

Morethan600,000peoplehavereceivedtransplantsintheU.S.Morethan28,500peoplereceivethegiftoflifeeachyear.

National Organ Transplant ActIn1984,CongresspassedtheNationalOrganTransplantAct,whichprohibitedthesaleofhumanorgansandcalledforanationalnetworktomanageorganrecoveryandplacement.TheactcreatedtheOrganProcurementandTransplantationNetwork(OPTN)andassigneditthetaskofdevelopingequitableorgandistributionpolicies.

The Organ Procurement and Transplantation NetworkTheOPTN(http://optn.transplant.hrsa.gov)helpstoensurethesuccessandefficiencyoftheU.S.organtransplantsystem.Underfederallaw,allU.S.transplantcentersandorganprocurementorganizations(OPOs)mustbemembersoftheOPTN.Othermembersinclude:• tissuetypinglabs• medical,scientific,andprofessional

organizations• healthandpatientadvocacygroups• membersofthegeneralpublicwithan

interestinorgandonationandtransplantation

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The United Network for Organ SharingUNOS(www.unos.org)isaprivate,nonprofitorganizationthatcoordinatesthenation’sorgantransplantsystemundercontractwiththefederalgovernment.UNOSwasfirstawardedtheOPTNcontractin1986,anditcontinuesastheonlyorganizationevertomanagetheOPTN.

UNOSmembersinclude58localOPOsthatmanagerecoveryandplacementinthe50states,D.C.,andPuertoRico.UNOSlinkstheorgandonor,thetransplantcenter,andthewaitingpatient.

Learn from yesterday, live for today, hope for tomorrow. –Albert Einstein

What We Do

• managethenationaltransplantwaitinglist,matchingdonorstorecipients24hoursaday,365daysayear.

• monitoreveryorganmatchtoensurethatorganallocationpoliciesarefollowed.• bringtogetherOPTNmemberstodeveloppoliciesthatmakethebestuseofthelimitedsupply

oforgansandgiveallpatientsafairchanceofgettingtheorgantheyneedbasedonmedicalcriteria—regardlessofage,sex,ethnicity,religion,lifestyle,financialorsocialstatus.

• maintainthedatabasethatcontainsallorgantransplantdataforeverytransplantthatoccursintheU.S.Thisdataisusedtoimprovetransplantation,developorgan-sharingpolicies,supportpatientcare,andhelppatientsmakeinformedhealthcarechoices.

• provideatoll-freeUNOSpatientservicesline:(888)894-6361.Transplantcandidates,recipients,livingdonors,familymembers,andthegeneralpubliccancalltoobtaingeneralinformation,theprocesstorequesttransplantdata,organallocationpolicyinformation,ortodiscussconcernsabouttransplantcenters.

• provideawebsite,www.transplantliving.org,withpatient-focusedinformationfortransplantcandidatesandpatients,andlovedones.

• educateprofessionalgroupsabouttheirimportantroleinthedonationprocess.

The UNOS mission is to advance organ availability and transplantation by uniting and supporting its communities for the benefit of patients through education, technology, and policy development.

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Deceased Donor Organ Donation, Matching, and Allocation The Five Steps in Matching Deceased Donor Organs

1. An organ is donated.OrganProcurementOrganizations(OPOs)areresponsibleforidentifyingpotentialorgansfortransplantandcoordinatingwiththenationalnetworktoallocateorgans.Whenadeceaseddonororganbecomesavailable,theOPOmanagingthedonorentersmedicalinformationaboutthedonor—includingorgansizeandcondition,bloodtype,andtissuetype—intotheUNOScomputersystem.

2. A match run is generated.TheUNOScomputersystemgeneratesamatchrun,whichisalistofcandidateswhohavemedicalprofilescompatiblewiththedonor’s.Eachorganfollowsdifferentcriteriaforallocation.Thecomputerprioritizescandidatesbasedontheallocationpolicyfortheorganandonhowcloselythecandidate’scharacteristicsmatchthedonor’s.

3. Transplant centers are notified.OrganplacementspecialistsattheOPOortheUNOSOrganCenterelectronicallycontactthetransplantcenterswhosepatientsappearonthematchrun.

4. The transplant team considers the organ for the patient.Whenanorganisoffered,thetransplantteamconsidersmanyfactorstodeterminewhat’sbestforeachpatient.Sometimestheteamturnsdownanofferforanorgan.Thisisanormalpartoftheprocess.

5. The organ is accepted or declined.Ifanorganisturneddownforonepatient,itisofferedtothenextpatientonthematchrunlistforthatorgan.Theseofferscontinueuntiltheorganisplaced.

Itiscommonforpatientstobecalledaboutanorganoffer(onepatientwillbetheprimarycandidateandtheotherswillbebackupsincasetheprimaryisnotavailableoreligible).Sometimesapatientreportstoatransplantcenterforapotentialoffer,butthendoesnotreceivethetransplant.

How Organ Allocation Policies Are MadeOrganmatchinganddistributionpoliciesaredevelopedbycommitteesandaboardofdirectorscomprisedoforganprocurementandtransplantprofessionals,patients,donorfamilies,andthepublic.Asthetransplantfieldcontinuestoadvance,organallocationpoliciesevolve.Goalsaretomakethebestuseofeverydonatedorganandgiveeverytransplantcandidateafairchancetoreceivetheorganheorsheneeds.OrgantransplantationisuniqueinU.S.medicinebecausepatientshaveaformalroleinpolicymaking.Thepubliccanprovidefeedbackonpolicyproposalsbyvisitinghttp://optn.transplant.hrsa.gov/governance/public-comment/.CalltheUNOSpatientserviceslineat(888)894-6361formoreinformation.

You must do the thing you think you cannot do. – Eleanor Roosevelt

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Common Questions about TransplantationHow are patients added to the national organ transplant waiting list?Ifyourphysiciandecidesthatyouneedanorgantransplant,youwillbereferredtoatransplantcenterforevaluation.Themedicalteamatthetransplantcenterwillconsideryourmedicalconditionandsituation.Theyalsowillconsideryourfinancialsituation,includinginsuranceorotherresourcesyouhavetopayforthesurgeryandmedicationsafterwards.Anotherconsiderationiswhetheryouhavefamilyandfriendstocareforandsupportyou.Ifthetransplantteamdecidesthatyouareagoodcandidate,youwillbeaddedtothewaitinglistandthetransplantcenterwillsendyoualettertoletyouknow.

Can patients list at more than one transplant center?Yes.Thisiscalled“multiplelisting.”UNOSpolicypermitspatientstobeconsideredfororgansthatbecomeavailableinotherareasbybeingregisteredatmorethanonecenter.Thismayreduceyourwaitingtimeinsomecases,butnotalways.TheremayormaynotbeanadvantageinlistingatmorethanonetransplantcenterinthesameOPO’slocalservicearea.Discussthiswiththeindividualcenterssoyoucanbecounseledappropriately.Eachcenterhasitsowncriteriaforlistingtransplantcandidates,andeachcentercanrefusetoevaluatepatientsseekingtolistatmultiplecenters.Yourinsurancemayalsohavecertainrestrictions.Confirmyourcoveragebeforebeginningatransplantevaluationatanewcenter.

How long does it take to receive an organ?Onceyouareaddedtothenationalorgantransplantwaitinglist,youmayreceiveanorganthatday,oryoumaywaitmanyyears.Factorsaffectinghowlongyouwaitincludehowwellyoumatchwiththerecipient,howsickyouare,andhowmanydonorsareavailableinyourlocalareacomparedtothenumberofpatientswaiting.

How can I access data on organ transplantation and donation?Youcanobtainnational,regional,state,andcenterdatabyvisitinghttp://optn.transplant.hrsa.gov(Data>ViewDataReports>CenterData).YoucanfindsurvivaldataattheScientificRegistryofTransplantrecipientswebsiteatwww.srtr.org.Ifyouneedhelpaccessingdatareports,pleasecallUNOSpatientservicesat(888)894-6361.

Is living donation a possibility for me?Kidneysandpartsoflivers,lungs,intestines,andpancreatacanbedonatedfromonelivingpersontoanother.Medicalpersonnelattrans-plantcentersdeterminewhoisacandidateforlivingdonation.Livingdonorshavehistoricallybeenacloserelative(suchasaspouse,sibling,orparent)orfriendoftherecipient.Livingnon-directed(stranger-to-stranger)donationisnewer.Othertypesoflivingdonationarepaireddonation,positivecrossmatch,andbloodtype–incompatibledonation.Contactyourtransplantcentertodiscusslivingdonation.Section3containsmoredetails.

Does UNOS oversee donation and transplantation around the world?No.UNOSonlyoverseestransplantationintheU.S.andPuertoRico.

For more information, call UNOS patient services at (888) 894-6361 or

go to www.transplantliving.org.

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Can a patient from another country receive a transplant in the United States?Yes.PatientscantravelfromothercountriestotheU.S.toreceivetransplants.Onceatransplantcenterliststhem,non-residentsareconsideredbasedonthesamefactorsasU.S.citizens.Non-residentscompriseroughly1%oftheU.S.waitinglist.Theyalsocomprised0.3%ofdeceaseddonorsand2.8%oflivingdonorsintheU.S.during2014.Transplantationofnon-U.S.citizensisatthediscretionofeachtransplantcenter.

How can I find out about organ allocation policy changes that affect organ transplantation and donation?Informationonpolicyproposalscanbefoundathttp://optn.transplant.hrsa.gov/governanceandinvariousUNOSpublications.Torequesttheseresources,contactUNOSat(888)894-6361.

What does UNOS do to increase the supply of organs? Duetotheshortageoforgans,slightlymorethan50%ofthoseonthewaitinglistreceiveatransplantwithinfiveyearsoflisting.TheOPTNhas21committeeswithhealthcareprofessionals,scientists,statisticians,patientsandthepublicwhomeetregularlytocreatepoliciestoincreasethenumberofpatientswhoaretransplantedandreducedeathsonthewaitinglist.Theycomeupwithcreativeideastouseallviableorgansfromdeceaseddonorsandreducegeographicdisparitiestoencouragelivingdonation.

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Heroism...is endurance for one moment more. – George F. Kennan

Preparing for Your Transplant

SECTION 2

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Eachperson’sjourneytotransplantisunique.Somepeoplewaitforextendedperiodsoftime,hopingforthedaywhentheywillbecalledforatransplant.Otherscometotransplantwithcompatiblelivingdonorcandidatesandmovequicklytosurgeryandlifewiththeirneworgan.Nomatterthecircumstances,nearlyeveryonefindsitdifficulttocompletelyabsorbthattheyhaveanend-stagediseasethatcanbestbetreatedwithatransplant.

Thefearandanxietythatnearlyeverytransplantcandidatefeelsarefurthercompoundedbythecomplexsystemfortransplantevaluationandorganmatching.Tomaketheprocesseasiertounderstand,here’swhatyoucanexpectwhenyourdoctorrecommendsthatyoubeevaluatedforatransplantandrefersyoutoatransplantcenter.

The Transplant Process1. Youareevaluatedforatransplantbythe

medicalteamatatransplantcenter.2. Ifacceptedasatransplantcandidate,youare

registeredonthenationalorgantransplantwaitinglist.Alivingdonormayalsobeidentifiedandevaluatedforlivingdonation.

3. Youbeginorganizingyoursupportsystem.4. Youbegindevelopingyourfinancialstrategy.5. Yourwaitingperiodbegins.6. Yourtransplanttakesplace.7. Yourmedicalteammanagesyourpost-

transplantcare.

Inthefollowingsectionswe’llpresentstep-by-stepinstructionstogetyoustarted,basedonexperiencesoftransplantrecipientsandtheirdonors.

Transplant CentersAtransplantcenterisahospitalwithstaffthatspecializesintransplantmedicine.

Yourprimarydoctorororganspecialistcanreferyoutoatransplantcenterthat:• isnearyourhome• specializesinyourmedicalsituation• acceptsyourinsurance

Youcanalsocontactatransplantcenteryourself.Areferralfromadoctorisnotnecessary,butyourdoctormayhavetestresultsandmedicalhistorythatwillmakeiteasierforthetransplantcentertostarttheevaluationprocess.Choosing a Transplant CenterOneofthebiggestdecisionsyouwillmakeasatransplantcandidateischoosingatransplantcenter.Therearenearly250transplantcentersintheU.S.andallofthemmustmeetstrictprofessionalstandards.Gotohttp://optn.transplant.hrsa.gov(Members>FindaMember)toaccesstransplantcenterlistingsandlinks.Manypatientssimplychoosethefacilityclosesttothem,butthereareseveralquestionstoaskwhenchoosingatransplantcenter:

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Practice self-advocacy by stating, ‘I think, I feel, I need, I want.’– Transplant Social Worker

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• Canyoueasilyreachthetransplantcenterforallappointmentsbeforeandafterthetransplant?

• Canyoueasilyreachthetransplantcenterwhencalledtoreceiveanorgan?

• Ifthecenterisadistancefromyourhome,canyourcaregiversstaynearthetransplantcenterwithoutcausinganundueburden?

• Isthecenterwithinthenetworkofyourhealthinsurance?

• Doyoufeelcomfortablewiththetransplantteam?

For More Information Whenchoosingatransplantcenter,youmaywanttocomparethenumberoftransplantsperformed,waitinglistsize,andsurvivalratesatthecentersyouareconsidering.• Gotohttp://optn.transplant.hrsa.gov(Data>

ViewDataReports>CenterData)forthenumberoftransplantsandwaitinglistsizebytransplantcenter.

• Visitwww.srtr.orgformedianwaittimeandsurvivalratesbytransplantcenter.

The Transplant Evaluation Thetransplantevaluationprocesscanbestressfulandinvolvelongdaysoftestsandclinicvisits.Thetransplantteamwilltesteverymajorsysteminyourbody.Testscouldfindothermedicalconditionsthatcouldcomplicateyourtransplantormakeitlesslikelytosucceed.

It’sperfectlynormaltofeelanxiousorvulnerable,likeyourlifeisinthehandsofthemedicalteam.Theyunderstandandcanhelp.Thesearesomequestionstoaskasyougothroughtheprocess:

Questions for the Transplant Center and Team

• DoIhavechoicesotherthantransplantation?• Whatarethebenefitsandrisksoftransplantation?• Whatareyourcriteriaforacceptingorgans

fortransplant?• Whoarethemembersofthetransplantteam,

andwhatdotheydo?• Howmanysurgeonsareavailableheretodo

mytypeoftransplant?• HowdoIfindoutaboutthetransplantprocess?• Isthereaspecialhospitalunitfor

transplantpatients?• MayItourthetransplantcenter’sunits?• WillIbeaskedtotakepartinresearchstudies?• Whataretheorganandpatientsurvivalrates

formytypeoftransplantatthishospital?• Howmanyofmytypeoftransplantdoyou

performeachyear?Howlonghaveyoubeendoingthem?

For more information, call UNOS patient services at (888) 894-6361 or go to www.transplantliving.org.

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Questions about Your Evaluation

• WhatshouldIbringwithme?• WhatshouldIdotopreparefor

theappointment?• Doesyourcenterofferparkingpermitsor

overnightaccommodations?• Whatdoestheevaluationandtestingprocess

include?HowdoesitaffectwhetherIamputonthelist?

Financial Questions

• Whatpartofthetransplantcostiscoveredbymyinsurance?

• Whatifmyinsurancedoesnotpayformedications?

• Whatfinancialcoverageisacceptedbythishospital?

• Whathappensifmyfinancialcoveragerunsout?

• HowmuchwillIhavetopayintheend? Questions about Living Donation

• Whattypesoflivingdonortransplantsdoesthecenterdo?Isalivingdonortransplantachoiceinmycase?Ifso,wherecanthelivingdonorevaluationoccur?

• WhatarethecostsifIhavealivingdonor?

Writeyourquestionsdownandbringthemtotheappointment.Youmightalsowanttobringatrustedfriendorfamilymemberwithyouandaskthemtotakenotes.

The Standard Transplant EvaluationThestandardtransplantevaluationusuallyincludesthefollowingtests:• bloodtyping• tissuetyping• dentalexam• chestx-ray• cardiacwork-up• pulmonarywork-up• infectiousdiseasetesting• cancerscreening• gender-specifictesting• psychologicalevaluationtodetermine

emotionalpreparedness• evaluationofsocialandfinancialsupports

andabilitytocareforyourselfandyourneworganaftertransplant

Othertestingmayberequireddependingontheorganyouneedandyourhealthhistory.

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Life is 10% what you make it and 90% how you take it. – Irving Berlin

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After the EvaluationYouwilllikelyreceiveahugeamountofinforma-tionduringyourevaluation.Afterward,spendsometimealonetoletitallsinkin.Itmayalsobehelpfultotalkwithotherswhohavehadatransplant.Askyourtransplantsocialworkertoreferyoutoapeermentoringprogramortransplantcandidatesupportgroup,eitheratyourcenterorinthecommunity.Thisisagoodwaytospendyourtimeasyouwaitforinsuranceapprovalandtestresults.

Itisnormaltofeelunsureiftransplantisforyou.Youmaydoubtyourabilitytogetthroughtheprocess.Oryoumaybefrozenwithfear.Yourtransplantteamisthereforyou.Itisokayifyoudecidethatatransplantisnotforyou—itisyourdecisiontomake.

The Waiting ListThewaitinglistisacomputersystemthatstoresthemedicalinformationforeverypersonwaitingforanorgantransplantintheU.S.andPuertoRico.Whenadeceaseddonororganbecomesavailable,informationaboutthatorganisenteredintothecomputersystem.Thesystemthengeneratesamatchrun,whichisalistofcandidateswhomightbeagoodmatchforthatorgan.Todetermineapotentialmatch,thesystemlooksatfactorslikebloodandtissuetype,medicalurgency,bodysize,anddistancebetweenthedonorhospitalandyourtransplanthospital.

Eachorganhasdifferentcriteriaforallocation,butwealth,socialstatus,andcitizenshipareneverfactors.TolearnmoreaboutOPTN/UNOSpolicies,visithttp://optn.transplant.hrsa.gov(Governance>Policies).• Livers: medicaltestresultsandgeography

determinepriorityfortransplant.• Hearts, lungs, intestines:priorityisbased

onclinicalormedicalstatusandgeography.• Kidneys and pancreata:waitingtimeisa

factor,butotherssuchastissuetypematchingarealsoconsidered.

You’re on the ListCongratulations!Theevaluationisoverandyou’reontheorgantransplantwaitinglist.Yourtransplantcenterwillconfirmyourregistrationinwritingandwillalsonotifyyouinwritingifyouareeverre-movedfromthewaitinglist.Itisnormaltofeelreliefandhope,andalsofearandregret.

Nowthewaitingbegins.Waitingforadonororgancanbestressful,sinceyoudon’tknowhowlongthatwaitwillbe.Factorsaffectinghowlongyouwaitincludehowwellyoumatchwiththedonor,howsickyouare,andhowmanydonorsareavailableinyourlocalareacomparedtothenumberofpatientswaiting.Nowisthetimetomobilizeyourresourcessoyou’rereadywhenthecallcomes.

Remember,transplantisnotafirst-come,first-servedprocess.Organallocationisbasedonmanycriteria.Whileyouwait,theremaybeotherswhogettheirtransplantbeforeyou.Beingonthewaitinglistsimplymeansthatyourtransplantteamfoundyoutobeagoodcandidatefortransplantandyou’rebeingconsideredfororgans.

It’s always too early to quit. – Norman Vincent Peale

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Multiple ListingAftertalkingwithstaffandotherpatientsanddoingyourownresearch,youmaydecidetobeonthewaitinglistatmorethanonecenter.Listingatmorethanonecentercanprovideadvantages:• Youwillhaveaccesstomultipledonorpools.• Theremaybedifferentrulesinotherregions

(pilotprojectsorotheragreements).• Averagewaittimesforyourorganmaybe

shorterinanotherregion.

Eachcenterdecideswhoitacceptsasacandi-dateandacentercanrefusepatientswhoarelistedelsewhere.Everycentercanrequirethattestsberedoneattheirowncenter.Insurancemaynotpayforduplicatetestssoconfirmyourhealthplan’scoveragebeforegoingforward.

Informbothyourprimarycenterandanyothercentersyoucontactofyourplans.TheremayormaynotbeanadvantageinlistingatmorethanonetransplantcenterinthesameOPO’slocalservicearea.Discussthiswiththeindividualcenterssoyoucanbecounseledappropriately.WaitingtimeforakidneycandidatestartsatthetimedialysiswasstartedorwhenthecandidatewasaddedtothewaitinglistwithaqualifyingGFR,whicheveroccursfirst.Forallotherorgans,waitingtimestartsafteracenteraddsyoutothelist.

Transferring Waiting TimeIfyouchoosetochangecentersorregisteratmultiplecenters,youcantransferyourwaitingtime.Tellyournewcenterthatyouwanttotransfertimefromanothercenter.Youwillhavetosignarequestforthewaitingtimetransfer.

Confirmyourinsurancecoveragebeforeyoutransfercenters.Toavoidgapsinwaitingtimeandthechancethatyoumightmissorganoffers,remainlistedatyouroldcenteruntilyouareonthewaitinglistatyournewcenter.

What if the transplant center does not accept me as a transplant candidate? Askyourtransplantteamaboutyouroptions.Youmayneedtomanageothermedicalconditionsfirst.Youmaybetoohealthyforatransplantnowbutmightneedoneinthefuture.Youmaystillbeacandidateatanothertransplantcenter.Ifatransplantisnotanoption,youshouldcom-mendyourselfonputtingforthyourbestefforttosurvive.Thismaynowbeatimeforpersonal,spiritual,andemotionalreflection.

What If I Have a Living Donor?Ifyourtransplantcenteridentifiesyouasagoodcandidateandyoualsohaveacompatiblelivingdonor,thecenterwillworkwithyouandyourdonortocoordinatesurgery.Thetimingofyourtransplantdependsonyourandyourdonor’shealth,theschedulesofallinvolved,andadministrativefactorsliketheavailabilityofoperatingrooms.

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You want to be sick enough to be listed, but well enough to survive the transplant. – Heart recipient

For more information, see Section 3of this booklet or go to

www.transplantliving.org (Living Donation).

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What does it mean to be inactive on the waiting list? Sometimesatransplantcenterhastoinactivateapatientonthewaitinglist.Ifyouareinactiveonthewaitinglist,itmeansyouarenoteligibletoreceiveorganoffers.Forsomeorgansyoualsodonotaccruewaitingtimewhileinactive.Therearereasonswhyyoumayhavetobeinactiveforaperiodoftime,includingachangeinyourhealthorsocialsupport.Makesureyouunderstandyourtransplantcenter’spoliciesregardinginactivity.It’suptoyoutocommunicatewithyourtransplantteamtoensureyourstatusisactive.Ifyouhaveanyconcernsregardingyourinactivestatusonthewaitinglist,discussthiswithyourtransplantteam.Ifpossible,theycanhelpyoudeterminestepstotaketobecomeactiveagain.

Preparing for Your TransplantWaittimesfortransplantsvary.Noteveryonewhoneedsatransplantwillgetone.Becauseoftheshortageoforgansthataresuitablefordonation,about50%ofpeopleonthewaitinglistwillreceiveanorganwithinfiveyears.

Afteryourevaluation,it’simportanttoprepareforyourtransplantwhileyouarewaiting.Workcloselywithyourtransplantteam.Keepallscheduledappointments.Buildasolidsupportsystemoffamily,friends,clergy,andmedicalprofessionals.Letpeopleknowwhat’sgoingoninyourlife.Theycanbeatremendoussourceofsupportandinformation.Takingthesestepsputsyouincontrol.

Prepareyourselfforyourtransplant:• medically• practically• emotionally• educationally• financially• spiritually

Preparing Yourself MedicallyWhileyouareonthewaitinglist,yourtransplantteamwillmonitoryoucontinuouslytomakesureyouremainsuitablefortransplant.Ifyourconditionimprovesorcomplicationsarise,youmaybetakenoffofthewaitinglist.Alwaysdiscussanyconcernswithyourtransplantteam.Ifyouneedtomakelifestylechangesbeforegettingatransplant,youshouldcontinuewiththemafteryourtransplanttoensurethebestoutcome.Remaininghealthyandactivebeforethetransplantwillmakerecoveryeasier.• Take care of your health.Takeyour

prescribedmedicines.Notifyyourtransplantcoordinatoraboutallofyourhealthissuesandanyotherprescriptions.

• Keep your scheduled appointments with your physicians. Untilyourtransplant,youwillneedtomeetwiththetransplantteamsothattheycanevaluateyouroverallhealth.

• Follow diet and exercise guidelines.Weightmanagementisimportantwhilewaitingforyourtransplant.Transplantteamstaff,includingadietician,canhelpyoudevelopaprogramthatwillgiveyouthebestresults.Askaboutwaystoreducetheuseofpainkillersandhowtomanageissueswithalcohol,tobacco,ordrugs.

• Make sure you are available. Yourtransplantteamneedstoknowhowtoreachyouatalltimes.Cellphones,pagers,oransweringmachinesmayberequiredbyyourtransplantcenter.Yourtransplantcoordinatormayaskyoutostaywithinacertaingeographicrange.

• Complete medical tests and procedures.Askyourtransplantteamaboutotherelectiveorrequiredsurgeries(notrelatedtoyourorganfailure)beforeyourtransplant.

• Women of childbearing age:Askyourmedicalteamaboutbirthcontrolandpregnancyandwhatprecautionsyoushouldtakebeforeandafteryourtransplant.

• Stay organized.Keepanotebookofyourrecordstohelpyoumanageyourmedicalinformation.Stayincontactwithyourtransplantteamtolearnaboutyourwaitingliststatus.

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Preparing Yourself Practically

• Select your primary support person.Choosesomeoneyoufeelclosetowhohasthetime,health,andflexibilitytobeyourcaregiver.Youneedtoknowyouareanotaburdentothisperson.

• Prepare a phone/email tree.Thiswillmakeiteasierforyourcaregivertoupdatefriendsandfamilyandalsocutdownonphoneoremailvolume.Therearealsoonlineoptionsthatyoucanusetoupdatefriendsandfamily.

• Organize your personal affairs.Considerfillingoutanadvanceddirective,writingawill,andsharingaccesstobankaccounts,email,orblogs.YoumayalsoneedtofilloutFamilyMedicalLeaveAct,insurance,orloandefermentpaperwork.

• Consider dependent care.Findsomeoneyoutrustandsetupaplantotakecareofyourchildrenand/orpets.Askyourdoctorwhenyoucanexpecttoseeyourchildrenandpetsafteryourtransplant.

• Arrange transportation.Whenyouareontheorganwaitinglist,yourfirstresponsibilityistoplanhowtogettothetransplantcenterquicklywhenyougetthecallthatanorganisavailable.Makearrangementswellinadvance.Planthedrivingrouteandthinkabouttrafficconditions.Ifyouarerelocating,makehousingarrangementsinadvance.

• Pack your bags.You’llneedtobereadytoleaveassoonasyougetthecallthatanorganisavailable.Includeinsuranceinformation,alistofmedications,anextra24-hoursupplyofmedication,andothernecessities.

Preparing Yourself EmotionallyManyportrayalsofthetransplantprocessinthemediaareinaccurateorsensationalized.Intherealworldyougetsick,youwait,andhopefully,yougetatransplant.Yourtransplantteamshouldbethemainsourceofinformationaboutyourcare.Youcanalsofindawealthofinformationonwww.transplantliving.org,aUNOSWebsitedesignedfortransplantcandidates,patients,andlovedones.

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I made sure I had my glasses, Chapstick™, and a box of chocolates packed for after surgery. – Pancreas recipient

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Preparing Yourself EducationallyTransplantationisawholenewworldwithawholenewlanguagetolearn—onefilledwithmedicalterms,abbreviations,andacronyms.Thebestwaytonavigatethisworldistochoosetobecomealifelonglearner.Carefullyreviewanyeducationalmaterialsprovidedbyyourtransplantcenter.Manyorgan-ordisease-specificorganizationsprovidepatienteducation.Thisbookisjustoneexampleofthepatient-focusedresourcesavailablethroughUNOS.Joinatransplantsupportgroup,eitherinpersonoronline,forinformationandsupport.Asyoulearnaboutthetransplantandwhattoexpect,youwillgaincontrolofyourtransplantexperienceandyourlife.Educationleadstoempowerment!

Preparing Yourself FinanciallyMajorhealthproblemscanimpactyourfinances.Successintransplantincludeshavingarealisticfinancialplan.Itcanbescarytofaceconcernsaboutlossofincome,employment,orinsurance;highmedicalbills;andtheneedtoapplyforfinancialhelp.Yetfacingthesepossibilitieshelpsyougainadegreeofcontrolovertheunimaginable.Agoodfinancialplanbeginsbytalkingwithyourlovedonesaboutyoursituation.Alsoinformyourtransplantteamaboutfinancialissues.SeeSection4fordetails.

Preparing Yourself SpirituallySpiritualgrowthandchallengesawaitmanytransplantcandidatesandrecipients.Somefindthatlife-threateningillnessmakesthemquestiontheirfaith;othersfindtheirfaithstrengthenedthroughthetransplantprocess.Yoursecondchanceatahealthylifemaycomewiththeknowledgethatanotherlifewaslost.Receivingadonororganmaycreateasenseofspiritualrebirth.Thismaycreateaprofoundchangeinyourbeliefs,andspiritualguidanceandcounselingcanhelpyoudealwiththeseissues.Justaseverypatienthasdifferentmedicalissues,spiritualneedsvaryaswell.Talkingtoyourpastor,yourrabbi,orthehospitalchaplainmayhelp.

Preparing for Your Loved One’s TransplantAcaregivermaybeafamilymemberorfriend.Somecaregivershavebeensupportingamedicallyfragilelovedoneforyears.Thetransplantteamsocialworkermaybeabletosuggestresourcesforcaregiversbutherearesomebasictips:• Physical health.Askthetransplantteamand

yourowndoctorwhatyouneedtodotostayhealthyinyourcare-givingrole,suchasusingmedicationsorvaccinations.Makesureyouareingoodphysicalcondition.

• Mental health.Spendingtimewithonepersoncanbethebestoftimesandtheworstoftimes.Makesureyouarrangesomerespitetimetotakeawalk,callfriends,ordosomethingforyourself.Thiscankeepyoufromfeelingburnedout.

• Living arrangements.Wherewillyoustaywhilethepatientisinthehospital?Ifyouareawayfromhome,besureyourmailandphonecallsareforwardedandyou’vepackednecessities.

• Support network.Caregiversneedsupporttoo!Findpeopletohelpyouwithrespitecare,errands,ormeals.Thebestresourceforcaregiversmaybeothercaregiverswhohave“survived”atransplant.Askyoursocialworkerifyourtransplantcenteroffersthesetypesofsupportgroups.

Need more information? Go to www.transplantliving.org or www.unos.org (Donation &

Transplantation>Patient Education), or call (888) 894-6361 to request printed materials.

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• Financial arrangements.Makefinancialandinsuranceplansortakeleavefromworkorotherduties.

• Manage expectations.Toavoidquestionsandstresslater,findoutthehospital’svisitinghours,limitsonvisitation,storage,parking,hygienerequirements,andcafeteriahours.

• Saying no.Beingacaregiverisagreatreasontocutbackonotherresponsibilitiesandde-stressyourlife.Youhaveenoughonyourplate.

Atransplantisalife-savinggiftforboththerecipientandthecaregiver.Itiswhatyouhavehopedforduringthelongwaitandtimeofillness.Transplantisnotonlylife-saving;itislife-altering.

Atransplantwillhelpthepatientbecomemoreindependentsohecanreturntoworkandotheractivities.Forthecaregiver,transplantmaymeanabigchangeinroles.Thiscanbringonfeelingsofsadness,resentment,andstress.Allofthisisperfectlynormalandcanberesolvedwithopencommunicationandalittleadjustmenttime.Ifmoreisrequired,talktoyourtransplantsocialworkeraboutcounselingandsupportgroups.

Receiving “The Call”Answeryourphoneatalltimesofdayandnight,especiallyifit’sfromthehospital.Iftheycalltotellyouthatanorganisavailable,youwilllikelyhavetostopeatinganddrinkingtogetreadyforsurgery.Youmaywishtoshowerorbathe.Youmaybeaskedwhetheryouhaveacold,cough,fever,orotherinfection.Yourdoctorwillexplainwhichmedicationsandtreatmentstostoporcontinue.

Youwillbeaskedtogotothehospitalwithinacertainwindowoftime.Planaheadandhavedirectionstothehospitalhandy,andfindoutwheretopark.Askwhereyourcaregiverwillstayduringthesurgery.Bringthebagyoupackedandyourinsurancecard.Yourcaregivershouldalsobringhisorherpackedbag.Whenyouarriveatthehospital,bereadyformedicaltestsandpossiblyalongwaitforsurgery.

Youmayfeelasurgeofadrenalin,excitement,eagerness,apeacefulstateofreadiness,orasenseofdread,shock,anddisbelief.Youmayalsofeelsadnessforthefamilywholostsomeoneatthesamemomentyouarethrilledtoreceivethegiftoflife.Allofthesefeelingsarenormal.

Afterreceivingthecall,contactyoursupportpersontomakesureheorshecanbewithyou.Yoursupportpersoncanhelpyoucontactotherclosefamilyorfriendsandtakecareofchildren,pets,andothermatterssuchaspayingbills.

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I’m ready for the right lungs at the right time. – Lung candidate

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A “Dry Run”Sometimesanorganmaybeevaluatedmorecloselyafteryou’vearrivedatthehospital,anditisfoundtobeinpoorconditionfortransplant.Youcouldbetoldthatyouwillnotreceiveatransplantandmustgohome.Thiscanbeverydisappointingafteralongwait.Yourtransplantteamislookingoutforyourbestinterestsandoutcome,andmaybethisorganjustwasn’trightforyou.Be patient.

Onepatientsuggestedthinkingofthiswaitingtimeasasortofsabbaticalduringwhichyougettoconsideryourplansandgoalsforthepotentially“verylongandreasonablyhealthylife”youwillhaveaftertransplant.

The SurgeryTransplantsurgerycanlastfromfourtoninehours,buteachtransplantisunique.Mostpatientsareplacedonabreathingmachine.Youwilllikelyspendsometimeinintensivecareorintermediatecare.Itisnormaltogothroughsomechallenges,whichyourmedicalteamwillmanage.Everyoneadjuststosurgeryandmedicationsdifferently.Askyourtransplantteamwhenyoucanexpecttoeat,walk,usethebathroom,andgohomeaftertransplant.

See Section 5, Life after Transplant, for details on how to live your best

life after transplant surgery.

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Going HomeGoinghomeafteratransplantissomethingtocelebrate!Youmadeitthroughthehardestpart,andnowyoucanstarttorecoverandliveagain.Makesureyouandyourcaregiverknowyourmedicationroutine,clinicvisitschedule,anddietandexerciserestrictions.Askyourmedicalteamwhatyourcaregiverneedstodotoprepareyourhomeforyourarrivalforyourhealthandsafety.

Mostpatientsfeelmorelikethemselveswithinsixmonthsoftransplant,althoughthisvariesbyage,health,andtheorgantheyreceive.

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2 I was there for my one-year post-transplant treadmill stress test. I had completed the required health history forms before the test. Of course, I included my heart health history from before the transplant. Much to my amazement, the technician excitedly stated, “Oh, not with this heart, you didn’t!” as she crossed out that entire section. That section related my old heart’s history! What a revelation! That old heart history, with all its problems, didn’t apply to my NEW heart! – Heart recipient

I’ve seen and met angels wearing the disguise of ordinary people living ordinary lives. – Tracy Chapman

Living Donation

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I trusted what I felt in my gut. I trusted my decision to do what I chose to do. I chose to donate a kidney. – Non-directed living donor

Livingdonationoffersanotherchoicefortransplantcandidates.In2014therewere29,532organtransplantsperformedintheU.S.Morethan5,800ofthesewerelivingdonortransplants.Withmorethan120,000peoplewaitingfortransplantsintheUnitedStates,thedemandfororgansfarexceedsthesupply.Livingdonationextendsthesupplyoforgans.

History• Thefirstsuccessfulliving-donortransplant

wasdonebetween23-year-oldidenticaltwinsin1954.

• Livingdonorkidneytransplantsdidnotbecomeroutineuntilthedevelopmentofmodernimmunosuppressivemedicationstopreventrejection.

• Thefirstsuccessfulliving-donorlivertransplantwasperformedin1989.

• Thefirstsuccessfulliving-donorlungtransplantwasperformedin1990.

Facts about Living DonationWho can be a Living DonorParents,children,husbands,wives,friends,co-workers—eventotalstrangers—canbeliving-donorcandidates.

Living Donor CriteriaLivingdonorcandidatesshouldbe:• ingoodphysicalandmentalhealth.• freefromhighbloodpressure,diabetes,cancer,

HIV,hepatitis,ororgan-specificdiseases.• inmostcases,atleast18yearsold.

Thesemedical/physicalcriteriaareveryimportantfororgandonation.Theyplayacriticalroleinfindinggoodcandidatesfortransplant.Agooddonorshouldalso:• be willing to donate: Nooneshouldfeelthat

theyMUSTdonate.• be well informed:Agooddonorcandidate

hasasolidgraspoftherisks,benefits,andpotentialoutcomes,bothgoodandbad,forboththedonorandrecipient.

• have good support:Significantothersshouldsupportyourdecision.

• havenoalcoholorsubstanceabuseproblems.• havepsychiatricdiagnoseswellcontrolled

overanextendedperiodoftime.

Organs a Living Donor may Give

• onekidney• segmentoftheliver• lobeofalung• portionofthepancreas• portionoftheintestine

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Need more information? Visit www.transplantliving.org

(Living Donation).

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Donor Relationship with Transplant CandidateDirected Donation

• related:healthybloodrelativesofthetransplantcandidate.

• unrelated:healthypeoplewhoarenotbloodrelativesofthecandidate.Theymayormaynothaveasocialconnectiontothetransplantcandidate.

Non-Directed DonationNon-directedlivingdonorsarenotrelatedtoorknownbytherecipient,butdonatepurelyfromselflessmotives.Thistypeofdonationisalsocalledanonymous,altruistic,altruisticstranger,andstranger-to-strangerlivingdonation.

When the Living Donor and Candidate Don’t MatchPaired exchange donationconsistsoftwo(ormore)kidneydonor/recipientpairswhosebloodtypesarenotcompatible.Thetworecipientstradedonorssothateachrecipientcanreceiveakidneywithacompatiblebloodtype.Oncealldonorsandrecipientshavebeentested,thekidneytransplantsurgeriescanbescheduled.ThereareseveralpairedexchangeprogramsavailableintheUS.Itisimportanttoaskyourtransplantcoordinatorwhichprogramsyourtransplantcenterparticipatesinandhowtheywork.

Paired Exchange Donation

Blood type incompatible donationallowsatransplantcandidatetoreceiveakidneyfromalivingdonorwhohasanincompatiblebloodtype.Topreventimmediaterejectionofthekidney,recipientsundergospecializedmedicaltreatmentsbeforeandafterthetransplanttoremoveharmfulantibodies(aproteinsubstance)fromtheblood.

Blood Type Compatibility Chart

Positive crossmatch donationinvolvesalivingdonorandatransplantcandidatewhoareincompatiblebecauseantibodiesinthecandidatewillimmediatelyreacttothedonor’scells,causinglossoftheorgan.Thecandidatewillreceivespecializedtreatmenttopreventrejection.

Candidate’s Blood Type

O

A

B

AB

Donor’s Blood Type

O

A or O

B or O

A, B, AB or O

Donor 2 Recipient 2

Donor 1 Recipient 1

Incompatible

Incompatible

I am a living donor from Rhode Island. In 2002 my good friend, Bonnie, confided over coffee that she had been sick with kidney disease for a long time. She needed a kidney. Her relatives were not viable donors. I privately thought about her predicament and a few days later told Bonnie that I would give it a shot. – Directed unrelated living donor

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Getting StartedIfyouwanttodonatetosomeoneyouknow,contacttheirtransplantcenter.Ifyouwanttodonatetoanyonewhoneedsanorgan,contactthetransplantcenterofyourchoice.ConsulttheOPTN/UNOSmemberdirectorypageathttp://optn.transplant.hrsa.gov(Members>FindaMember)foralistoftransplantcentersbystate.Onceyoufindatransplantcenter,calltoletthemknowyouwanttobealivingdonor.Tofindoutmoreaboutbeingalivingdonor,gotowww.transplantliving.org(LivingDonation>BeingaLivingDonor).

Moving ForwardAfteryourfirstcontactwiththetransplantteam,ifyoustillwanttogoforward,youwillbeginanextensiveseriesofteststodetermineifyoucandonateanorganwithoutharmingyourownhealth,andtoprovidethebestoutcomeforthecandidate.

Aspartoftheprocessyouwillbeaskedtotalkabout:• Whyyouwanttodonate• Yourcurrentrelationshipwiththerecipient• Howyoubelievedonationwillimpact

(change)yourrelationshipwiththetransplantcandidate

• Whowillprovidesupportforyou(financial,physical,social,andemotional)duringthetransplantprocess

• Planswithyouremployerwhileyourecoverfromdonation

• Plansforchildcareorotherresponsibilitiesduringyourrecoveryperiod

• Youremotionalpreparationforaless-than-optimaltransplantoutcome

• Howyouhandlestressanddisappointment• Futureplansforhavingchildren• Futureplansforschoolingoremployment

Everydonorshouldhavesomeoneotherthanthetransplantcandidatetosupportthemduringtheprocess.

Things to Remember

• Youshouldreceivethesamequalityofcareandattentionthattherecipientdoes.

• Yourdonorwork-upisconfidential.Informationcannotbesharedwiththetransplantcandidateoranyoneelse.

• Youmaystopthedonorwork-upatanytimeandthetransplantprogramwillhelptoidentifyablamelessreasonfornotcontinuing.

• It’simportanttohaveyourownsupportperson.

What You Should Know about Living DonationRisksLivingdonationismajorsurgery.Allcomplicationsofmajorsurgeryapply.Theseinclude:• pain• infectionattheincisionsite• incisionalhernia• pneumonia• bloodclots• hemorrhaging• potentialneedforbloodtransfusions• sideeffectsassociatedwithallergicreactions

totheanesthesia• death

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Youmayalsohavenegativepsychologicalsymptomsrightafterdonationorlater.Youand/oryourrecipientmayfacesurgicalcomplications.Thetransplantedorganmaynotworkrightaway.Thereisalsothechanceitwillnotworkatall.

Donorsmayfeelsad,anxious,angry,orresentfulaftersurgery.Donationmaychangetherelationshipyouhavewiththerecipient.

Positive Aspects of DonationLivingdonationprovidesanunparalleledopportunitytogivesomeoneasecondchanceatlife.Throughdonation,manyrecipientsmaybeabletoresumemanyoftheirnormalactivities:working,playingsports,self-care,andlivinglifetothefullest.Notonlydoyouimpactthelifeofonepersonoronefamily,butbytakingasinglepersonoffthewaitinglist,youopenthedoorforotherswhodon’thavealivingdonor.

Legal AspectsIn1984CongresspassedtheNationalOrganTransplantAct(NOTA),whichprohibitsthesaleofhumanorgans.However,thepaymentof“theexpensesoftravel,housing,andlostwagesincurredbythedonorofahumanorganinconnectionwiththedonationoftheorgan”isexpresslypermittedbysection301oftheNOTA.

Financial AspectsLivingdonormedicalcostsaregenerallycoveredbytherecipient’sinsurance.Thisincludescustomarycostsassociatedwiththedonorevaluationandfollow-up.However,somepost-operativecosts,especiallythoseincurredaftertheinitialpost-surgicalvisit,maynotbecovered.Livingdonationmayalsoimpacthealthinsuranceoptionsinthefuture.

Herearesomeexpensesthatmaynotbecoveredbytherecipientorhis/herinsurance:• annualphysicals• lodging• travelcosts• lostincomefromwork• healthproblemsidentifiedaspartofthe

donorevaluation• non-medicalexpenses

Yourhealthinsurancemaynotcovertheseexpenseseither.Talktothetransplantcenter’sfinancialcounseloraboutanyofyourfinancialconcernsbeforethetransplant.YoumayalsocalltheNationalLivingDonorAssistanceCentertollfreeat(888)870-5002orchecktheirwebsiteatwww.livingdonorassistance.org.Theyhelpqualifyingdonorswithuncoveredexpenses.

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Questions to AskQuestionstothinkaboutasyougivecarefulconsiderationtobecomingalivingdonorincludethefollowing:• HowdoIfeelaboutorgandonation?• CanIaffordtobealivingdonor?• Whatwillmyinsurancecover?• DoIknowenoughtomakean

informeddecision?• AmIbeingpsychologicallypressuredto

bealivingdonor?• Istheresomeoneelsewhocoulddonate?• Ifthereismorethanonepossibledonor,how

willthelivingdonorbechosen?• Willdonationimpactmyrelationshipwith

therecipient?• Whatarethemedicalrisksinvolved?• Howdoesmyreligionvieworgandonation?• AmIuptoitphysically?Arethereaspectsof

myhealththatmightkeepmefromdonating?• DoIhavea“supportnetwork”tohelpme

throughthisprocess?• HowwillIfeelifIamrejectedasaresultof

thescreeningprocess?• AmIpreparedtodealwiththepossible

rejectionofthetransplantedorgan?

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Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not. – Dr. Seuss

Developing a Financial Plan

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Transplantsareexpensive.Patientsandfamiliesareunderstandablyconcernedabouthowthecostoftransplantwillaffectthem.Yourconcernsarevalid,buttherearemanytoolsavailabletohelpyoudevelopafinancialplanforyourcare,bothbeforeandafterthetransplant.Yourtransplantteamwillsharetheseresourceswithyou.

Support Services Mosttransplantcentershavesocialworkersandfinancialcoordinatorswhocanhelpyouwiththefinancialdetailsofyourtransplant.Dependingonthestructureatyourcenter,oneorbothwillhelpyoudevelopastrategy.

Transplant Social Workers Therearetwotypesoffinancialchallengesintransplant.Therearetheobviousissues,suchaspayingforthesurgeryandmedicationsnecessaryaftertransplant.Also,thereareunexpectedfinancialissues,suchas:• inabilitytopayyourmedicalbills• lackoffundstomeetdailyneeds• lackoftransportationtoandfromthe

transplantfacility• lackofhousingforout-of-townpatientsand

familymembers• re-employmentissues

Yoursocialworkercanhelpyoufindresourcestomanageyourissuesanddecreaseyouranxiety.Informationyousharewithyoursocialworkerwillremainconfidential,aslongasitisnotvitaltoyourmedicalcare.

Financial CoordinatorsYourtransplantfinancialcoordinatorfocusesoninsuranceissuesrelatedtothetransplantsurgeryandmedicalfollow-up.Theyareexpertsininsuranceandhospitalandphysicianbillingissueswhocanhelpwithinsurancerequirementsandwillcoordinatebenefits.Theymightalsosuggestotherwaystomanagethecostsofyourcare.

Financial Questions

• IfIhavequestionsorproblems,howcanIcontactyou?

• Whatistheaveragecostforapre-transplantevaluation?

• WhatistheaveragecostforthetransplantIneed?

• Whatistheaveragecostoffollow-upcare?• Howmuchwillmyinsurancecoverandwhat

portiondoIhavetopay?• WhenandhowwillIgetbilled?• Doyourequireadepositoradownpayment

formypre-transplantevaluationortransplant?Ifso,howmuch?

• WhatifIhavenoresources?Whataremyoptionsforcommunityassistance?

• IfIrunoutoffundsbeforeIgetatransplant,whatactionswillyoutake?WillIbemadeinactiveonthepatientwaitinglistorremovedfromitcompletely?

• WhencanIexpecttobebilled?WhatkindsofpaymentoptionsdoIhave?Doesyourhospitalhaveapaymentplan?

• Doyouknowofanylocalorganizationsthatcanassistuswithtransportationorlodging?

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Transplant CostsYou,thetransplantrecipient,areresponsibleforthefollowingcharges(alongwithyourinsuranceorothercoverage):• candidatetestingandevaluationfortransplant• transplantsurgery(transplantsurgeons,

anesthesia,andoperatingroompersonnel)• follow-upcare,labtests,andmedication

Note: The recipient is NOT personally responsible for any costs related to the recovery of deceased donor organs and the donor’s medical expenses.

Donor ExpensesAllcostsassociatedwiththerecoveryofdeceaseddonororgansortissueareassumedbytheOPO.Thesechargesarethenpaidbytherecipient’sinsurance.Living-donormedicalcostsandimmediatefollow-upalsoarepaidbytherecipient’sinsurance.Non-medicalexpenses(housing,transportation,etc.)arenotcovered.

Other Costs

• food,lodging,andtransportationnearthetransplantcenterifrequiredforthetransplant,patientevaluationandothercheckups

• labtests• physicaloroccupationaltherapyand

othertreatment• thecostofanti-rejectiondrugsandother

medications,whichcaneasilyexceed$10,000peryearforthelifetimeofthetransplantedorgan

• non-coveredmedicalcosts(forexample,bloodpressuremonitors)

• lossofincomewhileoutofwork• insuranceorMedicarepremiums,copays,

anddeductibles

Hope is patience with the lamp lit. – Tertuillian

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Financing your TransplantThefirststepindevelopingafinancialstrategyistofigureouthowmuchofyourcostsinsurancewillcover.Yourfinancialcoordinatororsocialworkercanhelp.Thenyoucanbegintoexploreotherfundingsources.Mostpatientsuseacombinationofsources.

Private Health InsuranceEvenifyouhavehealthinsurance,thetermsandextentofcoveragevarywidely.Readyourinsurancepolicycarefullytoseewhattypesoftransplantcosts(labtests,medications,andfollow-upappointments)arecovered.Ifyouhavequestions,contactyouremployer’shumanresourcesdepartmentorcontactyourinsurancecompanydirectly.

Someinsurancequestionstoconsider:• Ismytransplantcenterin-networkwithmy

insurancecompany?∞ Ifmytransplantcenterisout-of-

network,doIhaveanout-of-networkbenefitfortransplant?

• Whatdeductibleswillapply?• Whataremyco-paymentsfor

∞ doctorvisits?∞ hospitalizations?∞ medications?

• Doesmyplanrequirepriorauthorization?• Whoneedstogetpriorauthorization?• Doesmyplanhavealifetimemaximumor

“cap”fortransplantservices?• Doanypre-existing-conditionrequirements

applytocoverageforatransplant?

Regardlessofhowmuchyourinsurancecovers,youareresponsibleforanyunpaidcosts,unlessyouhavemadeotherplans.Keepupwithyourinsurancepremiumssothatyoudonotloseyourcoverage.Includethesecostsinyourfinancialstrategy.

MedicareMedicareisafederalhealthinsuranceprogramavailabletopeople:• age65orolderandthoseunderage65with

certaindisabilities• ofanyagewithpermanentkidneyfailure

(“end-stagerenaldisease”orESRD)

Medicare,likemostprivateinsuranceplans,doesnotpay100%ofyourcosts.Inmostcases,itpayshospitalsandhealthprovidersaccordingtoafixedfeeschedule,whichmaybelessthantheactualcost.Youmustpaydeductiblesandotherexpenses.

ToreceivefullMedicarebenefitsforatransplant,youmustgotoaMedicare-approvedtransplantprogram.

IfyouhavequestionsaboutMedicareeligibility,benefits,ortransplantprograms,contactyourlocalSocialSecurityoffice,gotowww.medicare.govontheWeb,orcall1-800-MEDICARE(1-800-633-4227/TTY:1-877-486-2048).

Formoreresources,gotowww.transplantliv-ing.org(BeforetheTransplant>FinancingaTransplant>FinancialResourcesDirectory).

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First we make our habits; then our habits make us. – Charles C. Noble

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Life after Transplant

SECTION 5

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Every day holds the possibility of a miracle. – Elizabeth David

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Everytransplantcandidatehasadreamofwhatlifewillbelikeonthedayaftertransplantsurgery.Thosedreamscanbeboththrillingandfrightening,soithelpstoknowwhatyoumightexpect.

Transplantrecipientswilltellyoutwotruths:notwotransplantsarealike,andatransplantisnotacure.Evenafteryourtransplant,youmaystillhaveaseriouschronicillnessthatmustbecloselymanaged.

After Transplant SurgeryAfterdealingwiththeeffectsoflong-termillness(lackofenergy,shortnessofbreath),youmayfeeleuphoricwhenyouawakeaftersurgerytofindthosesymptomsgone.Anesthesiaoftenprotectsyoufrompost-surgicalpainforashorttime.Followyourteam’spainmanagementinstructionstomaketheoverallexperienceascomfortableaspossible.

Transplantismajorsurgery.Itmaytaketimetogetbacktoeatingnormally,movingaround,andmanagingyourowncare.Don’tbediscouraged.Mostrecipientsreportfeelingmuchbetterjustaftertransplant.Otherstakelongertofeelbetter,movearound,andmanagetheircare.Rememberthatyounowhaveafunctioningorgan,whichgivesyouanewleaseonlife.

Going HomeThereisnosettimewhenpeoplegohomeaftertransplant.Thesearesomeofthefactorsthatcanaffecthowsoonyouwillbeabletogohome:• Theorganthatyoureceived(kidney,liver,

lung,etc.);recoveryforeachorganisdifferent• Youroverallhealthandabilitytotakecareof

yourselfbeforeyourtransplant• Yourlabresultsandoverallhealthstatus• Otherchronichealthproblems• Availabilityofsupportathome

Afteryouaredischargedfromthehospital,hereareafewthingstoexpect.

MedicationsImmunosuppressants,oranti-rejectionmedications,“hide”yournewtransplantedorganfromyourbody’simmunesystemtoprotectitfrombeingattackedanddestroyed.Taketheseandothermedicationsjustasyourdoctorprescribes.Talktoyourtransplantteambeforemakinganychanges.Youwilltakeimmunosuppressantsforthelifetimeofyourtransplantedorgan.Visitwww.transplantliving.org(AftertheTransplant>Medications)formoreinformation.

Youalsowilltakeothermedicationstohelptheimmunosuppressantstodotheirjob,ortocontrolsideeffects.Youmayneedmedicationsforotherchronichealthproblems.Inthebeginningitseemslikeyouaretakinglotsandlotsofmedications,butthislikelywillchangeasyourecover.

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Doctors and Wellness VisitsInthefirstfewmonthsaftertransplant,youwillvisitwithyourtransplantteamfrequentlytobesurethatyourneworganisfunctioningwellandtohelpyoudevelopgoodhealthhabits.Abigpartofkeepingyourneworganhealthyiskeepingyourbodyashealthyaspossible.Keepingallwellnessappointmentswillhelpyoumeetthisgoal.• Keepupwithothercheck-ups—dental,

genderspecific,eyeexams.• Monitoryourbloodpressure,weight,

andcholesterol.• Getallrecommendedhealthscreenings

onschedule.

Get MovingEverypersonisdifferent.Theamountandtypeofactivityyoucanhandleafteryourtransplantdependsonyourageandhealth.Thegoalistogetmoving.Foroneperson,“moving”maymeansittingupinachair.Foranother,itmightmeanwalkingseveraltimesaday.

Ifmovingischallenging,yourtransplantteammayprescribephysicalrehabilitationtogetyoustartedinthesafestmannerpossible.Rehabilitationmaybedoneathomeoratanoutpatientfacility.Sometimesastayinarehabfacilityisnecessary.Don’tbealarmedifyouneedrehab.Itisoneresourceyourtransplantteamusestogetyoubacktoamorenormallife.Onceyouhavefoundyour“newnormal,”keepexercisingsothatyoustayasfitaspossible.

Lifestyle ChangesYoumaybeabletoreturntoactivitiesyougaveupbecauseofyourillness.Manypeoplereturntoplayingsports,gardening,orhiking.Remember,don’tstartorresumeanyactivitywithoutgettingapprovalfromyourtransplantdoctorfirst.

Aftertransplantyoumayneedtochangeyourdiet.Youmayneedtodrinkmorewater.You’llneedtogetlaboratorytestsdonefrequently.Ifyouareakidneyrecipient,youwon’tgotodialysisanymore.Thisisagoodtimetocurbcigaretteoralcoholuse.

Back to Work or SchoolManypeoplegobacktotheirjobsorclasses,orevenstartnewcareersbasedoninsightsgainedduringtheirtransplantjourney.Vocationalrehabilitationhelpspeoplewhohavebeenoutoftheworkforcebecauseofadisabilitybyretrainingthemorprovidingadaptiveequipmentthatallowsthemtogobacktowork.Askyourtransplantsocialworkeraboutvocationalrehabilitationservicesinyourstate.Physical Changes and ChallengesItiscommontohaveatleastoneepisodeofrejection,whichiswhenyourbodyattacksthenewlytransplantedorgan.“Rejection”isaveryscaryword,butitdoesn’talwaysmeanyouarelosingyourtransplantedorgan.Yourtransplantteamknowshowtomanagerejectionwithmedication.Aftertreatment,mostpeoplelivenormallywiththeirtransplantedorgan.

Othercomplicationsmayrequirere-hospitalization.Goingbackintothehospitalallowsyoutobeproperlymonitoredandtreatedsothatyoucangethealthyquickly.

Manytransplantpatientsexperienceannoyingshort-termsideeffectsfromtheanti-rejectionmedications—hairgrowth,acne,moodswings,andweightgain,tonameafew.Symptomsdiminishastheinitialhighdoseofmedicationsistapereddownintheearlymonthsaftertransplant.Talkwithyourtransplantteamaboutyourconcerns.

Relationship ChangesWhileyouwereill,familymembersandfriendsmayhavemanagedmanythingsforyouorhelpedyouwithyourcare.Afteryourtransplant,youmaybeabletohandlemoreoftheseissuesonyourown.Asyouchangeandfeelbetter,everyonewillhavetoadapttheirthoughtsandbehaviorstoanewyou.

Beforeyourtransplant,sexualactivitymayhavebeenoutofthequestion.Nowthatyoufeelbetter,youmaybereadytoreconsider.Talktoyourtransplantteambeforeresumingsexualactivity.Opencommunicationwillbeimportanttomaintaininggoodrelationships.

Take It All InItmaybedifficulttoabsorballthathashappened.Ifyoureceivedanorganfromadeceaseddonor,youmayfeelsadorguiltybecausesomeoneelsediedsothatyoucouldhaveachanceatahealthierlife.Takeadvantageofavailableemotionalandspiritualsupportstohelpyouunderstandhowyoufeelaboutyourtransplant.

Communicate with Your Donor or Donor FamilyWhenyouareready,youmaywanttoexpressyourfeelingstooraboutyourdonor.Ifyoureceivedyourorganfromanunknowndeceaseddonor,youcouldwritealettertothedonorfamily.Yourtransplantteamcanhelpgetyourletterorothercommunicationtoalivingdonorordonorfamily.

Pay It ForwardYourtransplantisanawesomegift.Youcannevertrulyrepayyourdonor,butyoucanhonorthesacrificethatwasmade:• Takegoodcareofyourselfandyourneworgan.

∞ Takeyourmedications.∞ Exercise.∞ Keepupwithwellnesschecks.

• Getinvolvedinpromotingorganandtissuedonationinyourcommunitysosomeoneelsecanreceivethesamewonderfulgift.

SeeSection6formoreinformationaboutvolunteering.

Life After Transplant

What lies behind us and what lies before us are small matters compared to what lies within us. – Ralph Waldo Emerson

34

35

Promoting Organ and Tissue Donation in Your Community

SECTION 6

36

Promoting Organ and Tissue Donation in Your CommunitySE

CTI

ON

6

Asyouknow,theorganshortageisthereasonwhypatientsmustwaitfortransplants.Helppromotethecausebyurgingotherstosignuptobecomeanorganandtissuedonorandtosharetheirwisheswithlovedones.Takingthesestepswillhelpsavemorelives.Moststateshaveadonorregistry.Innearlyeverystate,thesedecisionsbecomebindingafterdeath.Today,therearemorethan100millionregistereddonors.Manyofthemsignedupbecausepeoplelikeyouencouragedthemtodoso.Contactyourlocalorganprocurementorganization(OPO)tovolunteer.ManyOPOprogramsprovidespeakertrainingtohelpyoulearnhowtotellyourstory,andtoconnectyouwithcivicgroups,healthfairs,orotheropportunities.TofindyourlocalOPO,callUNOSat(888)894-6361orvisithttp://optn.transplant.hrsa.org(Members>FindaMember).Donation Facts and Figures• Peopleshouldneverprejudgetheirabilityto

donate.Potentialdonorscanbefromanyageandhealthstatus.Manyfactorsareusedtodeterminewhatorgans&tissuecanbedonated.

• Donatedorganssavelives.Tissueisneededtoreplacebone,tendons,andligaments.Corneasareneededtorestoresight.Skingraftshelpburnpatientshealandcanalsosavelives.Heartvalvesrepairdefectsanddamage.Today,handandfacecantransplantsimprovethelivesofthoseinneed.

• Allmajorreligionseithersupportorganandtissuedonationasanunselfishactofcharityorleaveittoeachpersontodecide.Someevensayitisa“sin”tonotdonateorganswhenpossible.

• Thereisnocosttothedonor’sfamilyorestatefororganandtissuedonation.Thedonorfamilypaysonlyforhealthcarebeforedeathandfuneralexpenses.

• ItisagainstthelawtobuyorsellorgansandtissueintheU.S.

• Peoplecandonateoneoftheirkidneys,orpartofaliver,lung,pancreas,orintestine.Visitwww.donatelife.netformoreinformation.

• About8,000deceaseddonorsmakemorethan20,000organtransplantspossible.Inaddition,therearealmost6,000transplantseachyear

fromlivingdonors.Thereareabout30,000tissuedonorsand60,000corneadonorsannually,providingmorethan900,000tissueandcornealtransplants.

• Theneedcontinuestogrow.Morethan120,000men,women,andchildrenwaitingforlife-savingorgantransplants.Sadly,anaverageof22peopledieeachdaybecausetheydidn’tgetatransplantintime.

• Oneorganandtissuedonorcansaveandenhancethelivesofupto50people.The Organ and Tissue Donation Process

• Organandtissuedonationbecomesanoptiononlyafteralllifesavingeffortshavebeenmadeanddeathhasbeendeclared.Donationdoesnotinterferewithmedicalcare.

• Consentfordonationisconfirmedbyeithercheckingthestateregistryorwhenthedonor’sfamilyprovideswrittenconsent.Lovedonescanparticipateintheprocessbyprovidingamedicalhistory.

• Surgeryisusedtorecoverdonatedorgansandtissue.Thebodyisalwaystreatedwithgreatcareandrespect.

• Donationwillnotdelayorchangefuneralarrangements,andwillnotpreventanopen-casketviewing.

Who Receives Donated Organs and TissueTheUNOSnationalcomputernetworkmatchesorgansbybloodtype,bodysize,tissuetypeandotherfactors.Tissueisdistributedbasedonpatientneed,availability,andmedicalcriteria.

Tell Your StoryWhenyoutalkaboutorganandtissuedonation,herearefourpointstogetacross:1.Transplantationworks!Yourownstoryisproof.2.Itisuptoeachpersontodecidetobecomeanorgandonor.3.Urgepeopletotakeactionandsignupwiththeirstate’sdonorregistry.4.Registrationislegallybinding,buttellingfamilymembersisstillagoodidea.

Many patient resources are free-of-charge, including customized transplant information kits and organ-specific brochures. Also shop for hats, shirts, bags and other merchandise. http://store.unos.org

Questions? E-mail us at orders@store.unos.org.

113 R4.16www.unos.org

700 North 4th Street, Richmond, VA 23219

www.transplantliving.org

Our mission is to advance organ availability and transplantation

by uniting and supporting its communities for the benefit of patients

through education, technology and policy development.

www.unos.org/social