Post on 11-Feb-2022
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
SECTION 1
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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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Introduction to the Transplant Network: The Big PictureSE
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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
SECTION 3
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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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3 I donated a kidney to my son, Tyler, in 1993 after an accident destroyed his kidneys. The nephrologist encouraged me to consider donating a kidney. My biggest concern during my transplant work-up was, ‘What if I can’t donate?’ I feared, ‘Who else could we find to donate? What if they find something wrong with me?’ – Living donor mom
Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not. – Dr. Seuss
Developing a Financial Plan
SECTION 4
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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
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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.
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by uniting and supporting its communities for the benefit of patients
through education, technology and policy development.
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