What Every Patient Needs to Know - UMC

TALKING ABOUT TRANSPLANTATIONWhat EveryPatient Needsto KnowUnited Network for Organ Sharing

Table of ContentsSection 1: Introduction to the Transplant Network ..........................................3• Understanding Transplantation• Organ Donation, Matching, and Allocation• Common Questions about TransplantationSection 2: Preparing for Your Transplant .......................................................9• The Transplant Process• Transplant Centers• The Waiting List• Preparing for Your Loved One’s TransplantSection 3: Living Donation.......................................................................21• History• Facts about Living Donation• Getting Started• What You should Know about Living Donation• Questions to AskSection 4: Developing a Financial Plan• Support Services• Transplant Costs• Financing Your Transplant.......................................................27Section 5: Life after Transplant .................................................................34• Immediately after Transplant• Lifestyle Changes• Communicate with Your Donor or Donor Family• Pay it ForwardSection 6: Promoting Organ and Tissue Donation in Your Community.................39• Donation Facts and Figures• The Organ and Tissue Donation ProcessSection 7: Glossary ...............................................................................43Section 8: Resources .............................................................................501

Section 1Introduction to the Transplant Network:The Big Picture

Introduction to the Transplant Network: The Big PictureSection 1If an organ transplant is in the future for youor a loved one, you are not alone. Patients andtransplant professionals wrote this booklet tohelp you understand transplantation.If you are reading this for the first time, you mayfeel scared and confused. With so much informationto absorb, it may help to read this booklet withsomeone close to you. Keep a pen and paperhandy to write down questions to ask your healthcare team. The glossary in Section 7 explainssome of the terms.We’ll start with an overview. This section covers:• history of transplantation• the U.S. Organ Procurement andTransplantation Network (OPTN), which ismanaged by United Network for OrganSharing (UNOS)• process for matching patients withdonated organsLater sections will cover:• how to prepare for a transplant• what happens while you are on thetransplant waiting list• how a loved one can become a living donor• how to prepare a financial strategy• what to expect after your transplantUnderstanding TransplantationA Brief HistoryIn 1954, a kidney was the first human organ to betransplanted successfully. Liver, heart, and pancreastransplants were successfully performed by thelate 1960s, while lung and intestinal organtransplant procedures began in the 1980s.Until the early 1980s, the potential for organrejection limited the number of transplantsperformed. Medical advances in the preventionand treatment of rejection led to more successfultransplants and an increase in demand.More than 500,000 people have received transplantsin the U.S. More than 28,000 Americans receivethe gift of life each year.National Organ Transplant ActIn 1984, Congress passed the National OrganTransplant Act, which prohibited the sale ofhuman organs and called for a national networkto facilitate organ recovery and placement.The act created the OPTN and assignedit the task of developing equitable organdistribution policies.The Organ Procurement andTransplantation NetworkThe OPTN (http://optn.transplant.hrsa.gov) helpsto ensure the success and efficiency of the U.S.organ transplant system. Under federal law, allU.S. transplant centers and organ procurementorganizations (OPO) must be members of theOPTN to receive Medicare funds for transplant.Other members of the OPTN include tissue typinglabs; medical, scientific, and professionalorganizations; health and patient advocacyorganizations; and members of the generalpublic with an interest in organ donationand transplantation.4

Common Questions aboutTransplantationHow are patients added to the nationalorgan transplant waiting list?If your physician decides that you need an organtransplant, you will be referred to a transplantcenter for evaluation. The medical team at thetransplant center will consider your medicalcondition. They also will ask about your financialsituation, including insurance or other resourcesyou have to pay for the surgery and medicationsafterwards. Another consideration is whether youhave family and friends to care for and supportyou. If the transplant team decides that you are agood candidate, you will be added to the waitinglist and the transplant center will send you a letterto let you know.Can patients list at more than onetransplant center?Yes. This is called “multiple listing.” UNOS policypermits patients to be considered for organsthat become available in other areas by beingevaluated and listed at more than one center.This may reduce your waiting time in some cases,but not always. There is no advantage to listingat more than one transplant center in the sameOPO local area. Each center has its own criteriafor listing transplant candidates, and each centercan refuse to evaluate patients seeking to listat multiple centers. If you wish to list at morethan one center, inform your primary center andother centers you contact.How long does it take to receive an organ?Once you are added to the national organtransplant waiting list, you may receive an organthat day, or you may wait many years. Factorsaffecting how long you wait include how wellyou match with the donor, how sick you are, andhow many donors are available in your local areacompared to the number of patients waiting.How can I access data on organtransplantation and donation?You can obtain national, regional, state, and centerdata by visiting http://optn.transplant.hrsa.gov(click on Data>View Data Reports>Center Data)and you can find survival data at the ScientificRegistery of Transplant recipients website atwww.srtr.org. If you need help accessing datareports, please call UNOS patient services at(888) 894-6361.For more information, call UNOSpatient services at (888) 894-6361 orgo to www.transplantliving.org.What is living donation?Kidneys and parts of livers, lungs, intestines, andpancreata can be donated from one living personto another. Medical personnel at transplant centersdetermine who is a candidate for living donation.Living donors have historically been a closerelative (such as a spouse, sibling, or parent)or friend of the recipient. Living non-directed(stranger-to-stranger) donation is newer. Othertypes of living donation are paired donation,positive crossmatch, and blood type incompatibledonation. Contact your transplant center to discussliving donation. Section 3 contains more details.Does UNOS oversee donation andtransplantation around the world?No. UNOS only oversees transplantation in theU.S. and its territories.7

Introduction to the Transplant Network: The Big PictureSection 1Can a patient from another countryreceive a transplant in the United States?Yes. Patients can travel from other countries tothe U.S. to receive transplants. Once a transplantcenter lists them, non-resident aliens areconsidered based on the same factors as U.S.citizens. Non-resident aliens comprise roughly0.8% of the U.S. waiting list. They also comprise0.4% of deceased donors and 1.8% of living donorsin the U.S. based on the most recent availabledata. Transplantation of non-U.S. citizens is atthe discretion of each transplant center.How can I find out about organallocation policy changes that affectorgan transplantation and donation?Information on policy proposals can be found athttp://optn.transplant.hrsa.gov (click on PolicyManagement>Public Comment) and in variousUNOS publications. UNOS also maintains amailing list of patients, and members of thepublic who wish to receive policy proposalspublished for public comment. To request theseresources, contact UNOS at (888) 894-6361.What does UNOS do to increase thesupply of organs?Due to the shortage of organs, slightly morethan 50% of those on the waiting list receive atransplant within five years of listing. The OPTNhas 21committees with healthcare professionals,scientists, statisticians, patients, and the publicwho meet regularly to create policies to increasethe number of patients who are transplanted andreduce deaths on the waiting list. They come upwith creative ideas to use all viable organs fromdeceased donors, reduce geographic disparities,and encourage living donation.Heroism...isendurance forone momentmore.– George F. Kennan8

Section 2Preparing for Your Transplant

Preparing for Your TransplantSection 2Each person’s journey to transplant is unique.Some people wait for extended periods of time,hoping for the day when they will be called fora transplant. Others come to transplant withcompatible living donor candidates and movequickly to surgery and life with their new organ.No matter the circumstances, nearly everyonefinds it difficult to completely absorb that theyhave an end-stage disease that can best betreated with a transplant.The fear and anxiety that nearly every transplantcandidate feels are further compounded by thecomplex system for transplant evaluation andorgan matching. To make the process easier tounderstand, here’s what you can expect when yourdoctor recommends that you be evaluated for atransplant and refers you to a transplant center.The Transplant Process1. You are evaluated for a transplant by themedical team at a transplant center.2. If accepted as a transplant candidate, you areregistered on the national organ transplantwaiting list. A living donor may also beidentified and evaluated for living donation.3. You begin organizing your support system.4. You begin developing your financial strategy.5. Your waiting period begins.6. Your transplant takes place.7. Your medical team manages your posttransplantcare.In the following sections we’ll present step-by-stepinstructions to get you started, based on experiencesof transplant recipients and their donors.Practice selfadvocacybystating, ‘I think,I feel, I need,I want.’– Transplant Social WorkerTransplant CentersA transplant center is a hospital that has staffthat specializes in transplant medicine.Your primary doctor or organ specialist can referyou to a transplant center that:• is near your home• specializes in your medical situation• accepts your insuranceChoosing a Transplant CenterOne of the biggest decisions you will make as atransplant candidate is choosing a transplantcenter. There are nearly 250 transplant centers inthe U.S. and all of them must meet strict professionalstandards. Go to http://optn.transplant.hrsa.gov(click on Members>Member Directory) to accesstransplant center listings and links. Many patientssimply choose the facility closest to them, butthere are several questions to ask when choosinga transplant center:10

• Can you easily reach the transplant center forall appointments before and after the transplant?• Can you easily reach the transplant centerwhen called to receive an organ?• If the center is a distance from your home,can your caregivers stay near the transplantcenter without causing an undue burden?• Is the center within the network of yourhealth insurance?• Do you feel comfortable with thetransplant team?For more information, call UNOSpatient services at (888) 894-6361or go to www.transplantliving.org.For More InformationWhen choosing a transplant center, you maywant to compare the number of transplantsperformed, waiting list size, and survival rates atthe centers you are considering. There is moredata available to patients about transplants thanfor other procedures.• Go to http://optn.transplant.hrsa.gov (clickon Data>View Data Reports>Center Data) forthe number of transplants and waiting listsize by center.• Visit www.srtr.org for median wait time andsurvival rates by center.It’s perfectly normal to feel anxious or vulnerable,like your life is in the hands of the medical team.They understand and can help. These are somequestions to ask as you go through the process:Questions for the Transplant Centerand Team• Do I have choices other than transplantation?• What are the benefits and risks of transplantation?• What are your criteria for accepting organsfor transplant?• Who are the members of the transplant team,and what do they do?• How many surgeons are available here to domy type of transplant?• How do I find out about the transplant process?• Is there a special hospital unit fortransplant patients?• May I tour the transplant center’s units?• Will I be asked to take part in research studies?• What are the organ and patient survival ratesfor my type of transplant at this hospital?• How many of my type of transplant do youperform each year? How long have you beendoing them?The Transplant EvaluationThe transplant evaluation process involves longdays of tests and clinic visits and can be stressful.The transplant team will test every major systemin your body. Tests could find other medicalconditions that could complicate your transplantor make it less likely to succeed.11

Preparing for Your TransplantSection 2You want to besick enough tobe listed, but wellenough to survivethe transplant.– Heart recipientMultiple ListingAfter talking with staff and other patients anddoing your own research, you may decide to be onthe waiting list at more than one center. Listingat centers in different geographic regions canprovide advantages:• You will have access to multiple donor pools.• There may be different rules in other regions(pilot projects or other agreements).• Average wait times for your organ may beshorter in another region.Each center decides who it accepts as a candidateand a center can refuse patients who are listedelsewhere. Every center can require that tests beredone at their own center. Insurance may notpay for duplicate tests so confirm your healthplan’s stance on coverage before going forward.Inform both your primary center and any othersyou contact of your plans. There is no advantageto listing at more than one transplant center inthe same OPO’s local service area. Waiting timestarts after a center evaluates you and adds youto the list.Transferring Waiting TimeIf you would like to change transplant centers,you can transfer your primary waiting time to thenew center when you list there. Notify your originalcenter that you want to transfer to a new one, sothey can remove you from that center’s list.What if I am not accepted?Ask your transplant team about your options. Youmay need to manage other medical conditionsfirst. You may be too healthy for a transplant nowbut might need one in the future. You may stillbe a candidate at another transplant center. If atransplant is not an option, you should commendyourself on putting forth your best effort tosurvive. This may now be a time for personal,spiritual, and emotional reflection.What If I Have a Living Donor?If your transplant center identifies you as a goodcandidate and you also have a compatible livingdonor, the center will work with you and your donorto coordinate surgery. The timing of your transplantdepends on your and your donor’s health, theschedules of all involved, and administrative factorslike the availability of operating rooms.For more information on living donation,see Section 3 of this booklet or go towww.transplantliving.org.14

Transplant isnot for wimps.– Transplant surgeonPreparing for Your TransplantWait times for transplants vary. Not everyonewho needs a transplant will get one. Becauseof the shortage of organs that are suitable fordonation, only slightly more than 50% of peopleon the waiting list will receive an organ withinfive years.After your evaluation, it’s important to preparefor your transplant while you are waiting. Workclosely with your transplant team. Keep allscheduled appointments. Build a solid supportsystem of family, friends, clergy, and medicalprofessionals. Let people know what’s going onin your life. They can be a tremendous source ofsupport and information. Taking these steps putsyou in control.To help yourself prepare, address thefollowing areas:• medical• practical• emotional• educational• financial• spiritualPreparing Yourself MedicallyWhile you are on the waiting list, your transplantteam will monitor you continuously to make sureyou remain suitable for transplant. If your conditionimproves or complications arise, you may betaken off the transplant list. Always discussany concerns with your transplant team. If youneed to make lifestyle changes before getting atransplant, you should continue with them afteryour transplant to ensure the best outcome.Remaining healthy and active before the transplantwill make recovery easier.• Take care of your health. Take yourprescribed medicines. Notify your transplantcoordinator about all of your health issuesand any other prescriptions.• Keep your scheduled appointments withyour physicians. Until your transplant, youwill need to meet with the transplant team sothat they can evaluate your overall health.• Follow diet and exercise guidelines. Weightmanagement is important while waiting foryour transplant. A dietician and physicaltherapist can help you develop a program thatwill give you the best results. Ask about waysto reduce the use of painkillers and how tomanage issues with alcohol, tobacco, or drugs.• Make sure you are available. Your transplantteam needs to know how to reach you at alltimes. Cell phones, pagers, or answeringmachines may be required by your transplantcenter. Your transplant coordinator may askyou to stay within a certain geographic range.• Complete medical tests and procedures.Ask your transplant team about other electiveor required surgeries (not related to yourorgan failure) before your transplant.• Women of childbearing age: Ask your medicalteam about birth control and pregnancy andwhat precautions you should take before andafter your transplant.• Stay organized. Keep a binder of your recordsto help you manage your medical information.Stay in contact with your transplant team tolearn about your waiting list status.15

Preparing for Your TransplantSection 2Preparing Yourself PracticallySelect your primary support person. Choosesomeone you feel close to who has the time,health, and flexibility to be your caregiver.You need to know you are a not a burden tothis person.• Prepare a phone/email tree. This willmake it easier for your caregiver to updatefriends and family and cut down on phoneor email volume.• Organize your personal affairs. Considerfilling out an advanced directive, writing awill, and sharing access to bank accounts,email, or blogs. You may also need to fill outFamily Medical Leave Act, insurance, or loandeferment paperwork.• Consider dependent care. Find someoneyou trust and set up a plan to take care ofyour children and/or pets. Ask your doctorwhen you can expect to see your children andpets after your transplant.• Arrange transportation. When you are onthe organ waiting list, your first responsibilityis to plan how to get to the transplant centerquickly when you get the call that an organ isavailable. Make arrangements well in advance.Plan the driving route and think about trafficconditions. If you are relocating, make housingarrangements in advance.• Pack your bags. You’ll need to be ready toleave as soon as you get the call that an organis available. Include insurance information, alist of medications, an extra 24-hour supply ofmedication, and other necessities.I made sure I had myglasses, Chapstick ,and a box ofchocolates packedfor after surgery.– Pancreas recipientPreparing Yourself EmotionallyMany portrayals of the transplant process in themedia are inaccurate or sensationalized. In thereal world you get sick, you wait, and hopefully,you get a transplant. Your transplant teamshould be the main source of information aboutyour care. You’ll find a wealth of informationon www.transplantliving.org, a UNOS websitedesigned for transplant candidates, patients,and loved ones.16

Preparing Yourself EducationallyTransplantation is a whole new world with awhole new language to learn—one filled withmedical terms, abbreviations, and acronyms. Thebest way to navigate this world is to choose tobecome a lifelong learner. Carefully review anyeducational materials provided by your transplantcenter. Many organ- or disease-specific organizationsprovide patient education. This book is just oneexample of the patient-focused resources thatare available through UNOS. Join a transplantsupport group, either in person or online, forinformation and support. As you learn aboutthe transplant and what to expect, you will gaincontrol of your transplant experience and yourlife. Education leads to empowerment!For more information go towww.transplantliving.org or www.unos.org(click on Donation & Transplantation>Patient Education), or to request printedmaterials call (888) 894-6361.Preparing Yourself FinanciallyMajor health problems can impact your finances.Success in transplant includes having a realisticfinancial plan. It can be scary to face concernsabout loss of income, employment, or insurance;high medical bills; and the need to apply forfinancial help. Yet facing these possibilities helpsyou gain a degree of control over the unimaginable.A good financial plan begins by talking with yourloved ones about your situation. Also informyour transplant team about financial issues ofyour transplant. See Section 4, Developing aFinancial Plan, for details.Preparing Yourself SpirituallySpiritual growth and challenges await manytransplant candidates and recipients. Some findthat life-threatening illness makes them questiontheir faith; others find their faith strengthenedthrough the transplant process. Your secondchance at a healthy life may come with theknowledge that another life was lost. Receivinga donor organ may create a sense of spiritualrebirth. This may create a profound change inyour beliefs, and spiritual guidance and counselingcan help you deal with these issues. Just as everypatient has different medical issues, spiritualneeds vary as well. Talking to your pastor, yourrabbi, or the hospital chaplain may help.Preparing for Your Loved One’s TransplantA caregiver may be a family member or friend.Some caregivers have been supporting a medicallyfragile loved one for years. The transplant teamsocial worker may be able to suggest resourcesfor caregivers, but here are some basic tips:• Physical health. Ask the transplant team andyour own doctor what you need to do to stayhealthy in your care-giving role, such as usingmedications or vaccinations. Make sure youare in good physical condition.• Mental health. Spending time with oneperson can be the best of times and the worstof times. Make sure you arrange some respitetime to take a walk, call friends, or do somethingfor yourself. This can keep you from feelingburned out.• Living arrangements. Where will you staywhile the patient is in the hospital? If you areaway from home, be sure your mail and phonecalls are forwarded and you’ve packed necessities.• Support network. Caregivers need supporttoo! Find people to help you with respitecare, errands, or meals. The best resource forcaregivers may be other caregivers who have“survived” a transplant. Ask your social workerif your transplant center offers these types ofsupport groups.17

Preparing for Your TransplantSection 2• Financial arrangements. Make financial andinsurance plans or take leave from work orother duties.• Manage expectations. To avoid questionsand stress later, find out the hospital’s visitinghours, limits on visitation, storage, parking,hygiene requirements, and cafeteria hours.• Saying no. Being a caregiver is a greatreason to cut back on other responsibilitiesand de-stress your life. You have enough onyour plate.A transplant is a life-saving gift for both therecipient and the caregiver. It is what you havehoped for during the long wait and time ofillness. Transplant is not only life-saving; it islife-altering.A transplant will help the patient become moreindependent so he can return to work and otheractivities. For the caregiver, transplant may meana big change in roles. This can bring on feelingsof sadness, resentment, and stress. All of this isperfectly normal and can be resolved with opencommunication and a little adjustment time.If more is required, talk to your transplant socialworker about counseling and support groups.I’m readyfor the rightlungs at theright time.– Lung candidateReceiving “The Call”Answer your phone at all times of day and night,especially if it’s from the hospital. If they call totell you that an organ is available, you will likelyhave to stop eating and drinking to get ready forsurgery. You may wish to shower or bathe. Youmay be asked whether you have a cold, cough,fever, or other infection. Your doctor will explainwhich medications and treatments to stopor continue.You will be asked to go to the hospital withina certain window of time. Plan ahead and havedirections to the hospital handy, and find outwhere to park. Ask where your caregiver will stayduring the surgery. Bring the bag you packedand your insurance card. Your caregiver shouldalso bring his or her packed bag. When youarrive at the hospital, be ready for medical testsand possibly a long wait for surgery.You may feel a surge of adrenalin, excitement,eagerness, a peaceful state of readiness, or asense of dread, shock, and disbelief. You mayalso feel sadness for the family who lost someoneat the same moment you are thrilled to receivethe gift of life. All of these feelings are normal.After receiving the call, contact your supportperson to make sure he or she can be with you.Your support person can help you contact otherclose family or friends and take care of children,pets, and other matters such as paying bills.18

A “Dry Run”Sometimes an organ may be evaluated moreclosely after you’ve arrived at the hospital, and itis found to be in poor condition for transplant.You could be told that you will not receive atransplant and must go home. This can be verydisappointing after a long wait. Your transplantteam is looking out for your best interests andoutcome, and maybe this organ just wasn’t rightfor you. Be patient.One patient suggested thinking of this waitingtime as a sort of sabbatical during which you getto consider your plans and goals for the potentially“very long and reasonably healthy life” you willhave after transplant.The SurgeryTransplant surgery can last from four to ninehours, but each transplant is unique. Mostpatients are placed on a breathing machine.You will likely spend some time in intensive careor intermediate care. It is normal to go throughsome challenges, which your medical team willmanage. Everyone adjusts to surgery andmedications differently. Ask your transplantteam when you can expect to eat, walk, use thebathroom, and go home after transplant.See Section 5, Life after Transplant,for details on how to live your bestlife after transplant surgery.19

Preparing for Your TransplantSection 2Going HomeGoing home after a transplant is something tocelebrate! You made it through the hardest part,and now you can start to recover and live again.Make sure you and your caregiver know yourmedication routine, clinic visit schedule, anddiet and exercise restrictions. Ask your medicalteam what your caregiver needs to do to prepareyour home for your arrival for your healthand safety.Most patients feel more like themselves withinsix months of transplant, although this varies byage, health, and the organ they receive.I was there for my one-year posttransplanttreadmill stress test. I hadcompleted the required health historyforms before the test. Of course, Iincluded my heart health history frombefore the transplant. Much to myamazement, the technician excitedlystated, “Oh, not with this heart, youdidn’t!” as she crossed out that entiresection. That section related my oldheart’s history! What a revelation! Thatold heart history, with all its problems,didn’t apply to my NEW heart!– Heart recipientI’ve seen and metangels wearing thedisguise of ordinarypeople livingordinary lives.– Tracy Chapman20

Section 3Living Donation

Living DonationSection 3Living donation offers another choice fortransplant candidates. In 2010 there were 28,662organ transplants performed in the U.S. Morethan 6,500 of these were living donor transplants.With more than 112,000 people waiting fortransplants in the United States as of 2011, thedemand for organs far exceeds the supply. Livingdonation extends the supply of organs.HistoryNeed more information?Visit www.transplantliving.org(click on Living Donation).• The first successful living-donor transplantwas done between 23-year-old identical twinsin 1954.• Living donor kidney transplants did notbecome routine until the development ofmodern immunosuppressive medications toprevent rejection.• The first successful living-donor livertransplant was performed in 1989.• The first successful living-donor lungtransplant was performed in 1990.Facts about Living DonationWho can be a Living DonorParents, children, husbands, wives, friends,co-workers—even total strangers—can beliving-donor candidates.Organs a Living Donor may Give• one kidney• segment of the liver• lobe of a lung• portion of the pancreas• portion of the intestineDonor Relationship withTransplant CandidateDirected Donation• related: healthy blood relatives of thetransplant candidate.• unrelated: healthy people who are not bloodrelatives of the candidate. They may or maynot have a social connection to thetransplant candidate.Non-Directed DonationNon-directed living donors are not related to orknown by the recipient, but donate purely fromselfless motives. This type of donation is alsocalled anonymous, altruistic, altruistic stranger,and stranger-to-stranger living donation.I am a living donor from Rhode Island.In 2002 my good friend, Bonnie,confided over coffee that she had beensick with kidney disease for a long time.She needed a kidney. Her relativeswere not viable donors. I privatelythought about her predicament and afew days later told Bonnie that I wouldgive it a shot.– Directed unrelated living donor22

When the Living Donor and CandidateDon’t MatchPaired exchange donation consists of two ormore kidney donor/recipient pairs whose bloodtypes are not compatible. The two recipientstrade donors so that each recipient can receivea kidney with a compatible blood type. Onceall donors and recipients have been tested, thekidney transplant surgeries can be scheduled tooccur simultaneously.Paired Exchange DonationBlood type incompatible donation allowscandidates to receive a kidney from a livingdonor who has an incompatible blood type.To prevent immediate rejection of the kidney,recipients undergo specialized medical treatmentsbefore and after the transplant to remove harmfulantibodies from the blood. The surgeon alsoremoves the spleen during transplant.Blood Type Compatibility ChartCandidate’s Blood TypeOABABIncompatibleDonor 1 Recipient 1IncompatibleDonor 2 Recipient 2Donor’s Blood TypeOA or OB or OA, B, AB or OPositive crossmatch donation involves a livingdonor and a transplant candidate who areincompatible because antibodies (a proteinsubstance) in the candidate will immediatelyreact to the donor’s cells, causing loss of theorgan. The candidate receives specializedtreatment to prevent rejection.Living Donor CriteriaLiving donor candidates should be:• in good physical and mental health.• free from high blood pressure, diabetes, cancer,HIV, hepatitis, or organ-specific diseases.• at least 18 years old.These medical/physical criteria are very importantfor organ donation, but there are others. Theyplay a critical role in finding good candidates fortransplant. A good donor should also:• be willing to donate: No one should feel thatthey MUST donate.• be well informed: A good donor candidatehas a solid grasp of the risks, benefits, andpotential outcomes, both good and bad, forboth the donor and recipient.• have good support: Significant others shouldsupport your decision.• have no alcohol or substance abuse problems.• have psychiatric diagnoses well controlledover an extended period of time.I trusted what I feltin my gut. I trustedmy decision to dowhat I chose to do.I chose to donatea kidney.– Non-directed living donor23

Living DonationSection 3Getting StartedIf you want to donate to someone you know,contact their transplant center. If you want todonate to anyone who needs an organ, contactthe transplant program of your choice. Consultthe OPTN/UNOS member directory pageat http://optn.transplant.hrsa.gov (click onMembers>Member Directory) for a list of transplantcenters by state. Once you find a transplantprogram, call to let them know you want to be aliving donor. To find out more about being a livingdonor, go to www.transplantliving.org (clickon Living Donation>Being a Living Donor).Moving ForwardAfter your first contact with the transplant team,if you still want to go forward, you will beginan extensive series of tests to determine if youcan donate an organ without harming your ownhealth, and to provide the best outcome forthe candidate.As part of the process you will be asked totalk about:• Why you want to donate• Your current relationship with the recipient(where applicable)• How you believe donation will impact(change) your relationship with thetransplant candidate (where applicable)• Who will provide support for you (financial,physical, social, and emotional) during thetransplant process• Plans with your employer while you recoverfrom donation• Plans for childcare or other responsibilitiesduring your recovery period• Your emotional preparation for a less-thanoptimaltransplant outcome• How you handle stress and disappointment• Future plans for having children• Future plans for schooling or employmentEvery donor should have someone other thanthe transplant candidate to support them duringthe process.Things to Remember• You should receive the same quality of careand attention that the recipient does.• Your donor work-up is confidential. Informationcannot be shared with the transplant candidateor anyone else.• You may stop the donor work-up at any timeand the transplant program will help toidentify a blameless reason for not continuing.What You Should Know aboutLiving DonationRisksLiving donation is major surgery. All complicationsof major surgery apply. These include:• pain• infection at the incision site• incisional hernia• pneumonia• blood clots• hemorrhaging• potential need for blood transfusions• side effects associated with allergic reactionsto the anesthesia• death24

You may also have negative psychologicalsymptoms right after donation or later. You and/or your recipient may face surgical complications.The transplanted organ may not work right away.There is also the chance it will not work at all.Donors may feel sad, anxious, angry, or resentfulafter surgery. Donation may change therelationship you have with the recipient.Positive Aspects of DonationLiving donation provides an unparalleledopportunity to give someone a second chance atlife. Through donation, many recipients may beable to resume many of their normal activities:working, playing sports, independent self-care,and living life to the fullest. Not only do youimpact the life of one person or one family, butby taking a single person off the waiting list, youopen the door for others who don’t have aliving donor.Here are some expenses that may not be coveredby the recipient or his/her insurance:• annual physicals• lodging• travel costs• lost income from work• health problems identified as part of thedonor evaluation• non-medical expensesYour health insurance also may not cover theseexpenses either. Talk to the transplant program’sfinancial counselor about any of your financialconcerns before the transplant. You may alsocall the National Living Donor AssistanceCenter at (703) 414-1600 or go towww.livingdonorassistance.org. They helpqualifying donors with uncovered expenses.Legal AspectsIn 1984 Congress passed the National OrganTransplant Act (NOTA), which prohibits thesale of human organs. However, the payment of“the expenses of travel, housing, and lost wagesincurred by the donor of a human organ inconnection with the donation of the organ” isexpressly permitted by section 301 of the NOTA.Financial AspectsLiving donor medical costs are generally coveredby the recipient’s insurance. This includescustomary costs associated with the donorevaluation and follow-up. However, some postoperativecosts, especially those incurred afterthe initial post-surgical visit, may not be covered.Living donation may also impact your ability toobtain health insurance in the future.25

Living DonationSection 3Questions to AskQuestions to consider as you give carefulconsideration to becoming a living donorinclude the following:• How do I feel about organ donation?• Can I afford to be a living donor?• What will my insurance cover?• Do I know enough to make aninformed decision?• Am I being psychologically pressured tobe a living donor?• Is there someone else who could donate?• If there is more than one possible donor, howwill the living donor be chosen?• Will donation impact my relationship withthe recipient?• What are the medical risks involved?• How does my religion view organ donation?• Am I up to it physically? Are there aspects ofmy health that should keep me from donating?• Do I have a support network to help methrough this process?• How will I feel if I am rejected as a result ofthe screening process?• Am I prepared to deal with the possiblerejection of the organ?I donated a kidney to my son, Tyler, in1993 after an accident destroyed hiskidneys. The nephrologist encouragedme to consider donating a kidney. Mybiggest concern during my transplantwork-up was, ‘What if I can’t donate?’I feared, ‘Who else could we find todonate? What if they find somethingwrong with me?’– Living donor momUnless someonelike you cares awhole awful lot,nothing is goingto get better.It’s not.– Dr. Seuss26

Section 4Developing a Financial Plan

Developing a Financial PlanSection 4Transplants are expensive. Patients and familiesare understandably concerned about how thecost of transplant will affect them. Your concernsare valid, but many tools are available to helpyou develop a financial plan for your care, bothbefore and after the transplant. Your transplantteam will share these resources with you.Support ServicesMost transplant programs have social workersand financial coordinators who can help youwith the financial details of your transplant.Depending on the structure at your center, oneor both will help you develop a strategy.Transplant Social WorkersThere are two types of financial challenges intransplant. There are the obvious issues, such aspaying for the surgery and medications necessaryafter transplant. Also, there are unexpectedfinancial issues, such as:• inability to pay your medical bills• lack of funds to meet daily needs• lack of transportation to and from thetransplant facility• lack of housing for out-of-town patients andfamily members• re-employment issuesYour social worker can help you find resourcesto manage your issues and decrease your anxiety.Information you share with your social workerwill remain confidential, as long as it is not vitalto your medical care.Financial CoordinatorsYour transplant financial coordinator focuseson insurance issues related to the transplantsurgery and medical follow-up. They are expertsin insurance and hospital and physician billingissues who can help with insurance requirementsand coordinate benefits. They might also suggestother ways to manage the costs of your care.Financial Questions• If I have questions or problems, how can Icontact you?• What is the average cost for a pre-transplantevaluation?• What is the average cost for the transplantI need?• What is the average cost of follow-up care?• How much will my insurance cover and whatportion do I have to pay?• Do you require a deposit or a down paymentfor my pre-transplant evaluation or transplant?If so, how much?• What if I have no resources? What are myoptions for community assistance?• If I run out of funds before I get a transplant,what actions will you take? Will I be madeinactive on the patient waiting list or removedfrom it completely?• When can I expect to be billed? What kinds ofpayment options do I have? Does your hospitalhave a payment plan?• Do you know of any local organizations thatcan assist us with transportation or lodging?28

Developing a Financial PlanSection 4Charges for Organ TransplantThe following chart, developed by Milliman, Inc., provides a summary of estimated first-year andfollow-up charges for each type of organ transplant. Transplants can cost much less or much more,depending on how many of the services are included and where the transplant takes place.TABLE 1: ESTIMATED U.S. AVERAGE 2011 TRANSPLANT COSTS PER MEMBER PER MONTH (PMPM)Under Age 65Ages 65 and OverTRANSPLANTTOTALESTIMATEDNUMBER OFTRANSPLANTSESTIMATEDBILLEDCHARGESESTIMATEDNUMBER OFTRANSPLANTSESTIMATEDANNUALUTILIZATIONPER 1,000,000ESTIMATEDCOSTSPMPMESTIMATEDNUMBER OFTRANSPLANTSESTIMATEDANNUALUTILIZATIONPER 1,000,000ESTIMATEDCOSTSPMPMBONE MARROW–ALLOGENEICBONE MARROW–AUTOLOGOUS6,89413,263$805,400363,8006,46010,96923.8240.82$1.601.224342,29410.4755.32$0.701.68SINGLE ORGAN/TISSUECORNEAHEARTINTESTINEKIDNEYLIVERLUNG – SINGLE46,0812,1617416,5715,89873424,400997,7001,206,800262,900577,100561,20015,8061,8787213,8155,30244375.696.760.2453.0319.791.730.120.570.031.110.940.0830,27528322,756596291730.026.820.0566.4614.377.021.480.570.011.460.690.33LUNG – DOUBLE1,050797,3008923.290.221583.810.25PANCREAS286289,4002851.100.0310.020.00HEART-LUNG301,248,400300.110.0100.000.00MULTIPLE ORGANINTESTINE WITHOTHER ORGANSKIDNEY-HEARTKIDNEY-PANCREASLIVER-KIDNEY107668673691,343,2001,296,500474,7001,026,000106598653250.350.213.381.210.040.020.130.10172440.020.170.051.060.000.020.000.09OTHERMULTI-ORGAN421,707,500410.160.0210.020.00TOTAL$6.24$7.28Source: Milliman 2011 U.S. Organ and Tissue Transplant Cost Estimates and Discussion:http://publications.milliman.com/research/health-rr/pdfs/2011-us-organ-tissue.pdf30

Financing your TransplantThe first step in developing a financial strategy isto figure out how much of your costs insurancewill cover. Your financial coordinator or socialworker can help. Then you can begin to exploreother funding sources.Most patients use a combination of sources.Some patients can finance the transplantprocedure through their primary insurancecoverage and use savings and other private fundsto pay for other expenses. Many patients workwith community fundraising groups to completetheir transplant financial strategy.Common sources of transplant funding:• private insurance• Medicare coverage• Medicaid coverage• TRICARE (formerly Champus)• Veterans Administration• state “high-risk” insurance pool• prescription drug assistance programs• personal fundraising campaigns• charitable organizationsPrivate Health InsuranceEven if you have health insurance, the terms andextent of coverage vary widely. Read your insurancepolicy carefully to see what types of transplantcosts (lab tests, medications, and follow-upappointments) are covered. If you have questions,contact your employer’s human resourcesdepartment or contact your insurancecompany directly.• What are my co-payments for∞∞doctor visits?∞∞hospitalizations?∞∞medications?• Does my plan require prior authorization?• Who needs to get prior authorization?• Does my plan have a lifetime maximum or“cap” for transplant services?• Do any pre-existing-condition requirementsapply to coverage for a transplant?Regardless of how much your insurance covers,you are responsible for any unpaid costs,unless you have made other plans. Keep up withyour insurance premiums so that you do notlose your coverage. Include these costs in yourfinancial strategy.COBRA Extended Employer Group CoverageIf you are insured by an employer group healthplan and you must leave your job or reduce yourwork hours, you may qualify for extended coveragethrough COBRA (Consolidated Omnibus BudgetReconciliation Act of 1985). This federal lawrequires certain group health plans to extendcoverage for 18 to 36 months after benefitsend. This requirement is limited to companiesemploying 20 or more people. You pay thefull cost of the premiums for the group healthplan. Learn more by contacting your employer’sbenefits office or visit the federal Department ofLabor site at www.dol.gov (click on Health Plans& Benefits>COBRA).Some insurance questions to consider:• Is my transplant center in-network with myinsurance company?∞∞If my transplant center is out-ofnetwork,do I have an out-of-networkbenefit for transplant?• What deductibles will apply?31

Developing a Financial PlanSection 4MedicareMedicare is a federal health insurance programavailable to people:• age 65 or older and those under age 65 withcertain disabilities• of any age with permanent kidney failure(“end-stage renal disease” or ESRD)Medicare, like most private insurance plans, doesnot pay 100% of your costs. In most cases, itpays hospitals and health providers according toa fixed fee schedule, which may be less than theactual cost. You must pay deductibles and otherexpenses. Medicare currently offers coverage fortransplant of:• kidneys• kidney-pancreas• pancreas, either after a kidney transplant orfor certain indicationsIf you already have Medicare due to age ordisability, Medicare also covers other transplants:• heart, in certain circumstances• lung• heart-lung• liver, including transplants necessitated byhepatocellular carcinoma (HCC)• intestinesTo receive full Medicare benefits for a transplant,you must go to a Medicare-approved transplantprogram. These programs meet Medicare criteriafor the number of transplants they perform andthe quality of patient outcomes.If you have questions about Medicare eligibility,benefits, or transplant programs, contact yourlocal Social Security office, go to www.medicare.govon the Web, or call (800) MEDICARE/([800] 633-4227)/ TTY: (877) 486-2048.Medicare Prescription Drug PlansMedicare Part D covers costs for prescriptiondrugs. To get this coverage you must choose andjoin a Medicare drug plan. For more informationcall (800) MEDICARE ([800] 633-4227)/ TTY:(877) 486-2048 or visit www.medicare.gov(click on Medicare Basics>Part D).MediGap PlansMany people on Medicare also choose to buy aprivate “Medigap” policy to pay for costs notcovered by Medicare. Check with a local insuranceagent or go to www.medicare.gov (click onResource Locator>Medigap).State Health Insurance Assistance ProgramThe State Health Insurance Assistance Program(SHIP) is a national program that offers one-ononecounseling and assistance to people withMedicare and their families. Your transplant socialworker or financial coordinator can provideinformation on your state’s SHIP program, or goto https://shiptalk.org (click on Find a State SHIP).MedicaidMedicaid is a federal and state governmenthealth insurance program for certain low-incomeindividuals. Each state determines criteria for:• eligibility• benefits• reimbursement ratesMost Medicaid programs only cover transplantsperformed in their state, unless there are nocenters that can transplant that organ. For moreinformation, contact your local human servicesdepartment or the financial coordinator at yourtransplant center.32

Pharmaceutical Company PatientAssistance Programs (PAPs)Most pharmaceutical companies provide assistancefor persons who have difficulty purchasingmedications through company-based programsknown as patient assistance programs or PAPs.Guidelines for participation can includethe following:• an application signed by the prescribingphysician• income below a certain level, set by eachcompany, usually by medication• confirmation that the applicant does not haveother coverage and that they are a U.S. citizenGuidelines are specific to each drug company,and there may be different guidelines for differentmedications. Talk to your transplant socialworker about accessing PAPs. You can find moreinformation on each drug company’s website.Links are in Section 8: Resources.TRICARE (Formerly Champus) andVeterans AdministrationGovernment funding for families of active-duty,retired, or deceased military personnel may beavailable through TRICARE. TRICARE standardmay share the cost of most organ transplantsand combinations. TRICARE also covers livingdonor kidney, liver, and lung transplants.Patients must receive pre-authorization from theTRICARE medical director and meet TRICAREselection criteria. Pre-authorization is based ona narrative summary submitted by the attendingtransplant physician.For more information about TRICARE, contactthe health benefits advisor at your nearestmilitary health care facility, call the TRICAREBenefits Service Branch at (303) 676-3526 orvisit www.tricare.mil.For more information about the VeteransAdministration (VA) National TransplantProgram, contact your VA specialist or primarycare provider. For questions about theVA National Transplant Program, call(800) 60-HEART ([800] 604-3278) or(202) 461-7130, or visit www.va.gov/transplant/.State “High Risk” Insurance PoolMany states offer a high-risk health insurancepool to provide access to coverage to individualswith serious pre-existing medical conditions.Typically the premiums are higher, and the coveragemay be more limited. Ask your transplant centersocial worker or financial coordinator if yourstate has a high-risk insurance pool or visitwww.healthinsurance.org (click on Risk Pools).Go to www.transplantliving.org (click on Beforethe Transplant>Financing a Transplant>FinancialResources Directory) for more resources.Every day holdsthe possibilityof a miracle.– Elizabeth David33

Section 5Life after Transplant

Every transplant candidate has a dream ofwhat life will be like on the day after transplantsurgery. Those dreams can be both thrilling andfrightening, so it helps to know what youmight expect.Transplant recipients will tell you two truths:no two transplants are alike, and a transplant isnot a cure. Even after your transplant, you maystill have a serious chronic illness that must beclosely managed.Immediately after TransplantAfter dealing with the effects of long-termillness (lack of energy, shortness of breath),you may feel euphoric when you awake aftersurgery to find those symptoms gone. Anesthesiaoften protects you from post-surgical pain for ashort time. Follow your team’s pain managementinstructions to make the overall experience ascomfortable as possible.Transplant is major surgery. It may take time toget back to eating normally, moving around, andmanaging your own care. Don’t be discouraged.Most recipients report feeling much better justafter transplant. Others take longer to feel better,move around, and manage their care. Rememberthat you now have a functioning organ, whichgives you a new lease on life.We do not defeat death with atransplant; rather, we gain an extensionof life. So the real question becomes,‘What are we going to do with thedays, months, and hopefully years ofextended life?’…the same questioneven the non-transplanted face intheir own lives.– Heart recipientGoing HomeThere is no set time when people go home aftertransplant. These factors can affect how soon youwill be able to go home:• The organ that you received; recovery for eachorgan is different• Your overall health status and ability to takecare of yourself• Your lab results• Other chronic health problems• Availability of support at homeAfter you are discharged from the hospital, hereare a few things to expect.MedicationsImmunosuppressants, or anti-rejection medications,“hide” your new transplanted organ from yourbody’s immune system to protect it from beingattacked and destroyed. Take these and othermedications just as your doctor prescribes.Talk to your transplant team before making anychanges. You will take immunosuppressants forthe lifetime of your transplanted organ. Visitwww.transplantliving.org (click on After theTransplant>Medications) for more information.You also will take other medications to help theimmunosuppressants to do their job, or to controlside effects. You may need medications for otherchronic health problems. In the beginning itseems like you are taking lots and lots of medications,but this likely will change as you recover.35

Life After TransplantSection 5Doctors Visits and Wellness AppointmentsIn the first few months after transplant, you willvisit with your transplant team frequently to besure that your new organ is functioning well andto help you develop good health habits. A bigpart of keeping your new organ healthy meanskeeping your body as healthy as possible.Keeping all wellness appointments will help youmeet this goal.• Keep up with other check-ups—dental,gender specific, eye exams.• Monitor your blood pressure, weight,and cholesterol.• Get all recommended health screeningson schedule.Get MovingEvery person is different. The amount and typeof activity you can handle after your transplantdepends on your age and health. The goal is stillto get moving. For one person, “moving” maymean sitting up in a chair. For another, it mightmean walking several times a day.If moving is challenging, your transplant teammay prescribe physical rehabilitation to get youstarted in the safest manner possible. Rehabilitationmay be done at home or at an outpatient facility.Sometimes a stay in a rehab facility is necessary.Don’t be alarmed if you need rehab. It is oneresource your transplant team uses to get youback to a more normal life. Once you have foundyour “new normal,” keep exercising so that youstay as fit as possible.First we makeour habits;then our habitsmake us.– Charles C. NobleLifestyle ChangesYou may be able to return to activities that yougave up because of your illness. Many peoplereturn to playing sports, gardening, or hiking.Remember, don’t start or resume any activitywithout getting approval from your transplantdoctor first.After transplant you may need to change yourdiet. You may need to drink more water. You’llneed to get laboratory tests done frequently. Ifyou are a kidney recipient, you won’t go todialysis anymore. This is a good time to curbcigarette or alcohol use.Back to Work or SchoolMany people go back to their jobs or classes, oreven start new careers based on insights gainedduring their transplant journey. Vocationalrehabilitation helps people who have beenout of the workforce because of a disability getassistance that allows them to go back to work.Ask your transplant social worker aboutvocational rehabilitation services in your state.36

What lies behind usand what lies beforeus are small matterscompared to whatlies within us.– Ralph Waldo EmersonPhysical Changes and ChallengesIt is common to have at least one episode ofrejection, when your body attacks the newlytransplanted organ. “Rejection” is a very scaryword, but it doesn’t always mean you are losingyour transplanted organ. Your transplant teamknows how to manage rejection with medication.After treatment, most people live normally withtheir transplanted organ.Other complications may require re-hospitalization.Going back into the hospital allows you to beproperly monitored and treated so that you canget healthy quickly.Many transplant patients experience annoyingshort-term side effects from the anti-rejectionmedications—hair growth, acne, mood swings,and weight gain, to name a few. Symptomsdiminish as the initial high dose of medicationsis tapered down in the early months aftertransplant. Talk with your transplant team aboutyour concerns.Relationship ChangesWhile you were ill, family members and friendsmay have managed many things for you orhelped you with your care. After your transplant,you may be able to handle more of these issueson your own. As you change and feel better,everyone will have to adapt their thoughts andbehaviors to a new you.Before your transplant, sexual activity may havebeen out of the question. Now that you feel better,you may be ready to reconsider. Talk to yourtransplant team before resuming sexual activity.Open communication will be important tomaintaining good relationships.Take It All InIt may be difficult to absorb all that has happened.If you received an organ from a deceased donor,you may feel sad or guilty because someoneelse died so that you could have a chance at ahealthier life. Take advantage of emotional andspiritual supports to help you understand howyou feel about your transplant.Communicate with Your Donoror Donor FamilyWhen you are ready, you may want to expressyour feelings to or about your donor. If youreceived your organ from an unknown deceaseddonor, you could write a letter to the donor family.Your transplant team can help get your letteror other communication to a living donor ordonor family.37

Life After TransplantSection 5Pay It ForwardYour transplant is an awesome gift. You can nevertruly repay your donor, but you can honor thesacrifice that was made:• Take good care of yourself and your new organ.∞∞Take your medications.∞∞Exercise.∞∞Keep up with wellness checks.• Get involved in promoting organ and tissuedonation in your community so that someoneelse can receive the same wonderful gift.See Section 6, Promoting Organ and TissueDonation in Your Community, for moreinformation about volunteering.We must bethe change wewish to see inthe world.– Mahatma Gandhi38

Section 6Promoting Organ and Tissue Donationin Your Community

Promoting Organ and Tissue Donation in Your CommunitySection 6As you know, the organ shortage is the reasonwhy patients must wait for transplants. You canhelp promote organ and tissue donation by urgingothers to become an organ donor, inform theirfamilies, and sign onto their state’s donor registry.Most states have a donor registry that allowspeople to record their decisions to become organ,tissue, and eye donors after death. In nearlyevery state, these decisions become binding afterdeath. Encouraging others to document theirdonation decisions will help to ensure that theirwishes are honored and that lives will be savedthrough their gifts—maybe even your own life.In 2006, about 60 million Americans wereregistered to be donors. That number increasedto 100 million in 2011 because people like youencouraged others to document their wishes.You can actively promote donation in yourcommunity by contacting your local OPO.Most OPOs have volunteer programs thatprovide speaker training so that you can learnhow to tell your story. OPO staff will helpconnect you with the right opportunities foryour comfort level, such as working at healthfair booths or speaking to civic groups. To locateyour local OPO, call UNOS patient services at(888) 894-6361 or visit http://optn.transplant.hrsa.org (select Members>Member Directory).The next section provides some facts to helpyou promote organ and tissue donation.Givingliberates thesoul ofthe giver.– Maya Angelou40

Donation Facts and Figures• People of all ages and medical historiesare potential donors. As medical scienceadvances, donation opportunities change.Your medical condition at the time of deathwill determine what organs and tissue canbe donated.• Donated organs—heart, pancreas, kidneys,liver, lungs and intestines—save lives.Tissue is needed to replace bone, tendons,and ligaments lost to trauma or cancer andother diseases. Corneas are needed to restoresight. Skin grafts help burn patients healand often mean the difference between lifeand death. Heart valves repair cardiacdefects and damage. Even hands and facescan be transplanted to improve the lives ofthose in need.• All major religions either support organ andtissue donation as an unselfish act of charityor leave the decision to the individual. Someeven go so far as to say it is a “sin” not todonate organs when possible.• There is no cost to the deceased donor’s familyor estate for organ and tissue donation. Thedonor family pays only for medical care beforedeath and funeral expenses.• It is illegal to buy or sell organs and tissuein the United States.• It is possible to donate life as a living kidneydonor or as a partial liver, lung, pancreas, orintestine donor. For more information visitwww.transplantliving.org.• Each year since 2004, more than 7,000deceased donors make more than 20,000organ transplants possible. In addition, thereare more than 6,000 transplants each yearfrom living donors. There are about 30,000tissue donors and 40,000 cornea donorsannually, providing more than 900,000tissue and corneal transplants.• The need for donated organs and tissuecontinues to grow. More than 112,000 men,women, and children currently await lifesavingorgan transplants. Sadly, an averageof 18 people die each day because of a lackof available organs.• Each organ and tissue donor can save andenhance the lives of up to 50 people.To find your state’s online registry link,go to Donate Life America’s map athttp://donatelife.net/register-now/.The Organ and Tissue Donation Process• Organ and tissue donation becomes an optiononly after all life-saving efforts have beenmade and death has been declared. Donationdoes not interfere with medical care.• Consent for donation is confirmed by eitherverifying the person’s enrollment on a stateregistry or obtaining written consent fromthe family. The donor’s family is asked toparticipate in the process by providing amedical history.• A surgical procedure is used to recoverdonated organs and tissue. The body is alwaystreated with great care and respect.• Donation will not delay or change funeralarrangements, and will not interfere with anopen-casket funeral viewing.41

Promoting Organ and Tissue Donation in Your CommunitySection 6Who Receives Donated Organs and TissueOrgans are matched based on medical informationsuch as blood type, body size, and tissue typethrough a national computer system operatedby UNOS. Tissue is distributed based on patientneed, availability, and medical criteria.Tell Your StoryIn advocating organ and tissue donation, hereare four points to get across:1. Transplantation works! Your own story is proof.2. Encourage people to make their own decisionsabout donation.3. Encourage them to take action and sign upwith their state’s donor registry.4. Ask them to tell their family and friends, andto find out their wishes about organ donation.(Although registration is legally binding,telling family members is still a good idea.)Giving is betterthan receiving,because givingstarts thereceiving process.– Jim Rohn42

Section 7Glossary

GlossarySection 7For more terms, seehttp://optn.transplant.hrsa.gov(click on Resources>Glossary)AdherenceSee “Compliance.”AllocationThe process of determining how organs are distributed.Allocation includes the system of policies and guidelinesthat ensure that organs are distributed in an equitable,ethical, and medically sound manner.Allocation PoliciesRules established by the OPTN to guide and regulateorgan allocation and distribution in the U.S.AllograftAn organ or tissue transplanted from one individualto another of the same species(for example, a kidneytransplanted from one human to another human).AntibodyA protein made by the human body in response to aforeign substance, such as a previous transplant, bloodtransfusion, virus, or pregnancy. Because antibodiesmay attack the transplanted organ, transplant patientsmust take drugs to prevent antibodies from forming,which could cause organ rejection.AntigenSee Histocompatibility Antigen.Anti-Rejection DrugsMedicines developed to suppress the immune responseso that the body will accept, rather than reject, atransplanted organ or tissue. These medicines are alsocalled immunosuppressants.Body Mass IndexA measure of body size, calculated as weight inkilograms divided by height in meters squared.Blood TypeA blood type (also called a “blood group”) is aclassification of blood based on the presence orabsence of inherited antigenic substances on thesurface of red blood cells (RBCs).Blood Type Incompatible ExchangesAllows candidates to receive a kidney from a livingdonor who has an incompatible blood type. To preventimmediate rejection of the kidney, recipients undergoplasmapheresis treatments before and after the transplantto remove harmful antibodies from the blood. Thesurgeon also removes the spleen at the time of transplant.Brain DeathIrreversible and permanent cessation of all brainfunction. Artificial support systems may temporarilymaintain body functions such as heartbeat andrespiration for a few days, but not permanently.Most deceased donor organs are taken frombrain-dead donors.CardiomyopathyA disease of the heart muscle itself that may resultfrom inadequate blood flow, genetic diseases, toxic orinflammatory injury, or excessive workload on the heart.Calculated Panel Reactive Antibody (CPRA)A number to describe the chance that a random organdonor would not be compatible with the intended recipient(patient) due to antibodies against the potentialdonor’s HLA antigens. A low CPRA number meansthat more donors are likely to be compatible and ahigh CPRA means that it may be very difficult to find acompatible donor. For example, we may know (throughantibody testing) that an individual is “sensitized” tothe human antigen A3; therefore, that person wouldlikely suffer a rejection episode if they received an organfrom a donor who had that antigen. Because we knowthat 22% of donors have the antigen A3, that personwould theoretically be incompatible with 22% of theavailable organ offers or have a CPRA value of 22.Chronic Obstructive PulmonaryDisease (COPD)A slowly progressive disease of the airways that ischaracterized by a gradual loss of lung function.44

CirrhosisA disease of the liver in which normal, healthy tissue isreplaced with nonfunctioning fibrous scar tissue, andhealthy, functioning liver cells are lost. It is the endstage of chronic liver damage that can occur because ofalcohol abuse, malnutrition, viral infections, blockagesin blood or bile flow, genetic diseases, toxins, or other,unknown causes.Cold Ischemia TimeThe amount of time an organ spends being preservedafter recovery from the donor.Compliance (also called Adherence)The ability of a patient to follow (adhere, comply with)medical advice, especially as it relates to takingmedications after transplant.CrossmatchA complex blood test that is performed prior to atransplant to determine if the donor organ is compatiblewith the intended recipient. A positive crossmatchmeans that there was a reaction when the blood of thedonor was mixed with that of the recipient; therefore,the organ should not be placed with that patient. Anegative crossmatch means there is no reaction betweendonor and recipient, and it is probably safe to proceedwith the transplant.Directed DonationThe donation of an organ to a specifically-identifiedrecipient. Instructions are given by a donor or donorfamily member.Donate Life AmericaA nonprofit group of health care professionals, transplantpatients, and voluntary health care and transplantorganizations. Donate Life America works to increasepublic awareness of the organ shortage and promotedonation of organs and tissues.Donation After Circulatory Death (DCD)Donation after circulatory death is the recovery oforgans after the circulation has ceased. DCD occurswhen a patient’s care is futile, and the patient is tobe removed from all medical life-sustainingmeasures/supports.Durable Medical Power of AttorneyA document in which individuals may designate someoneto make medical decisions for them when they are unableto speak for themselves.End-Stage Organ DiseaseA disease that leads to the permanent failure of anorgan. Examples are end-stage renal disease and endstageliver disease.Expanded-Criteria Donors“Less traditional” donors who are 60 or older or whoare between 50 and 59 with at least two ofthe following conditions:• history of high blood pressure• creatinine level >1.5 mg/dL (a creatinine testmeasures how well a kidney is functioning; normalrange is 0.8 to 1.4 mg/dL)• cause of death from a cerebrovascular accident(stroke or aneurysm)Functional StatusA way of measuring the effects that lung disease mayhave on a person’s ability to perform routine daily tasks.Functional status is used in the Lung Allocation Score.GraftA transplanted organ or tissue.Graft SurvivalThe length of time an organ functions successfully afterbeing transplanted.Histocompatibility AntigensMarkers found on cells in the body that are unique toeach individual. Also known as human leukocyte antigens(HLAs), these markers are inherited from one’s parents.A person’s immune system uses HLA markers todifferentiate self from non-self. Any cell displaying aperson’s HLA type belongs to that person and thereforeis not an invader. Any cell displaying some other HLAtype is foreign or “non-self” and is identified as aninvader. This will set off a chain of events that couldresult in the rejection of any cells or tissue bearingthose markers. Therefore, it is important to test atransplant candidate to identify their unique HLA type.45

GlossarySection 7Histocompatibality TestTesting to identify a patient’s human leukocyte antigens(HLA) is often referred to as “tissue typing.” Tissuetyping is routinely performed for donors and transplantcandidates to match the donor with the most suitablerecipients and help decrease the likelihood of rejectingthe transplanted organ. See “Human Leukocyte Antigen(HLA) System.”Human Leukocyte Antigen (HLA)See Histocompatibility Antigens.Human Leukocyte Antigen (HLA) MismatchAn HLA mismatch is said to exist between a potentialdonor and recipient if the donor has a least one HLAantigen that is not shared with the recipient.Human Leukocyte Antigen (HLA) SystemThe complex of genes that includes those that makethe HLA antigen proteins and other genes that regulateinflammatory responses to infections, cancer andforeign (non-self) tissues.Immune ResponseThe body’s natural defense against foreign materialsor organisms such as bacteria, viruses, or transplantedorgans or tissue.ImmunosuppressionThe artificial suppression of the immune response,usually through drugs, so that the body will not reject atransplanted organ or tissue.Implanted Cardioverter Defibrillators (ICDs)Pacemaker-like devices that continuously monitor theheart’s rhythm and deliver life-saving shocks if adangerous heart rhythm is detected.Informed ConsentThe process of reaching an agreement based on a fullunderstanding of what will take place. Informed consentinvolves information sharing as well as the ability tounderstand and freely make a choice.Kidney Paired Donation (KPD)Program to assist incompatible recipients and theirliving donors to find a complementary, incompatiblerecipient/donor pair, with the end result of swappingkidneys from the first donor to the second recipient,and vice versa.Left Ventricular Assist Device (LVAD)A mechanical device implanted into a patient with leftheart failure that assists the left ventricle to provideblood circulation.Lung Allocation ScoreA numerical scale, ranging from zero (less ill) to 100(gravely ill), that is used for lung candidates age 12and over. It gives each individual a “score” (number)based on how urgently he or she needs a transplantand the chance of success after a transplant. The higherthe score, the higher on the list a patient is placed.The number is estimated using laboratory values, testresults, and disease diagnosis.MatchCompatibility between the donor and the recipient.The more appropriate the match, the greater thechance of a successful transplant.Match RunA computerized ranking of transplant candidates basedon donor and candidate medical compatibility and criteriadefined in OPTN allocation policies.Match SystemThe computerized algorithm used to prioritizepatients waiting for organs. It eliminates potentialrecipients whose size or blood type is incompatiblewith that of a donor and then ranks those remainingpotential recipients according to the ranking systemapproved by the OPTN Board.MismatchIn kidney transplantation, a mismatch indicates thedonor has at least one HLA antigen that is not presentin the recipient.46

Model for End-Stage Liver Disease(MELD)/Pediatric End-Stage Liver Disease(PELD) ScoreA numerical scale ranging from six (less ill) to 40(gravely ill) that is used for adult liver transplantcandidates. It gives each individual a score (number)based on how urgently he or she needs a livertransplant within the next three months. The numberis calculated by a formula using three routinelaboratory test results.Candidates under the age of 18 are placed incategories according to the Pediatric End-StageLiver Disease (PELD) scoring system. PELD replacedthe previous Status 2B and 3 for pediatric patients;Status 1 remains in place and is not affected byPELD. PELD is similar to MELD but uses somedifferent criteria to recognize the specific growthand development needs of children. PELD scoresmay also range higher or lower than MELD scores.Multiple ListingBeing on the waiting list for the same organ at morethan one transplant center.National Organ Transplant Act (NOTA)The National Organ Transplant Act, passed by Congressin 1984, outlawed the sale of human organs andbegan the development of a national system for organsharing and a scientific registry to collect and reporttransplant data.Organ and Tissue ProcurementRecovery of organs and tissues for transplantation.Organ PreservationDonated organs require special methods of preservationto keep them healthy between the time of procurementand transplantation. Without preservation, the organwill die.The length of time organs and tissues can be keptoutside the body varies depending on the organ, thetype of preservation used, and the storage temperature.Organ Preservation Times:• Heart: 4 – 6 hours• Liver: 8 – 12 hours• Kidney: 24 – 28 hours• Heart-lung: 4 – 6 hours• Lung: 4 – 6 hours• Pancreas: 12 – 18 hoursOrgan Procurement and TransplantationNetwork (OPTN)In 1984, Congress passed the National OrganTransplant Act that mandated the establishmentand operation of a national Organ Procurement andTransplantation Network (OPTN). It also called forthe establishment of a scientific registry of patientsreceiving organ transplants. The purpose of theOPTN is to manage the nation’s organ procurement,donation, and transplantation system and toincrease the availability of and access to donororgans for patients with end-stage organ failure.Members of the OPTN include all U.S. transplantcenters, organ procurement organizations (OPOs),histocompatibility laboratories, voluntary health careorganizations, medical and scientific organizations,and members of the general public. UNOS establishedthe OPTN in 1986 under contract with the HealthResources and Services Administration (HRSA) ofthe U.S. Department of Health and Human Services(HHS) and has operated it continually since that timeunder contracts with HRSA.Organ Procurement Organization (OPO)The organization responsible for the recovery,preservation, and transportation of organs fortransplantation. As a resource to their communities,OPOs educate the public about the critical need fororgan donation. Currently, there are 58 OPOs aroundthe country, and all are UNOS members.Organ Procurement Organization (OPO)Donation Service AreaEach OPO provides its services to the transplantprograms in its area. An OPO’s donation service areacan include a portion of a city, a portion of a state oran entire state, or more than one state.Presently, when most organs become available, a listof candidates is generated from the OPO’s local servicearea. If a patient match is not made in that localarea, a wider, regional list of potential candidates isgenerated, followed by a national list.47

GlossarySection 7PlasmapheresisThe removal, treatment, and the return of bloodplasma from the blood circulating in the body. Duringplasmapheresis, blood is initially taken out of the bodythrough a needle or previously implanted catheter.Plasma is then removed from the blood by a cellseparator. After plasma separation, the blood cells arereturned to the person undergoing treatment, whilethe plasma (which contains antibodies that may causeorgan rejection), is first treated and then returned tothe patient.Positive CrossmatchThe intended recipient already has antibodies to thedonor organ, meaning that if a transplant were to takeplace, the organ would most likely be rejected. Thereare treatments available that can reduce the numberof antibodies within a transplant candidate and thusreduce the strength of a rejection response. Thesetreatments are referred to as “desensitizing” and includedrugs, plasmapheresis and a combination of the two.These treatments are very expensive, are very hardphysically on the potential recipient, and are stillconsidered experimental. Therefore, surgeons willusually perform positive crossmatch live-donor kidneytransplants after a desensitizing treatment only if thereare no other live donors with a negative crossmatch.RejectionRejection occurs when the body tries to destroy atransplanted organ or tissue because it is foreign.Immunosuppressive (anti-rejection) drugs helpprevent rejection.Required RequestHospitals must inform the local Organ ProcurementOrganization (OPO) of potentially suitable donors.The OPO then works with hospital staff to informfamilies that their loved one’s organs and tissues can beused for transplant. This law is intended to increase thenumber of donated organs and tissues for transplantationby giving more people the opportunity to donate.RetransplantationSometimes, because of organ rejection or transplantfailure, patients need another transplant and returnto the waiting list to be retransplanted. Reducing thenumber of retransplants is critical when examining waysto maximize a limited supply of donor organs.Right Ventricular Assist Device (RVAD)A mechanism implanted into a patient with heart failurethat maintains right ventricular blood circulation, whichis circulation from the heart through the lungs.SensitizationPatients are said to be sensitized when they havedeveloped antibodies in their blood to specific HLAantigens. This can happen due to pregnancy, bloodtransfusions, or previous rejection of an organ transplant.Sensitization is measured by CPRA. For example, if acandidate has developed a specific antibody to theHLA antigen A2, that person is said to be “sensitized”to the A2 antigen. If a donor organ that displayed theA2 antigen were placed in that candidate, there maybe an immediate rejection response (a hyperacuteresponse) which would lead to the rejection of thetransplanted organ. We know that 47% of all donorshave the A2 antigen; so that person has a CPRA of47%. That person may have to wait a long time to finda compatible donor.Split LiverA split liver transplant occurs when the donor liver isdivided into two segments and then transplanted into tworecipients, or one segment could be transplanted into achild for whom an entire adult liver would be too large.Standard-Criteria DonorA donor who does not meet the criteria for donationafter circulatory death (DCD) or extended-criteriadonation (ECD).Status/ScoreA code or a number used to indicate the degree ofmedical urgency for patients awaiting heart, liver, orlung transplants.48

Survival RatesIndicate what percentage of patients are alive or whatpercentage of organs (grafts) are still functioning aftera certain amount of time. Survival rates are used indeveloping organ allocation policy. Survival ratesimprove with technological and scientific advances, anddeveloping policies that reflect and respond to theseadvances will also improve survival rates.Thoracic OrgansOrgans located in the chest—specifically, the heartand lungs.TissueAn organization of a great many similar cells thatperform a special function. Examples of tissues that canbe transplanted are bones, bone marrow, corneas, heartvalves, ligaments, saphenous veins, and tendons.Tissue TypeAn individual’s combination of HLA antigens. Matchingfor tissue type is used in the allocation system forkidney and pancreas transplantation.Challenges arewhat make lifeinteresting;overcoming themis what makeslife meaningful.– Joshua J. MarineTissue TypingA blood test that helps evaluate how closely the tissuesof the donor match those of the recipient.Total Artificial HeartA mechanical pump used to replace the functionof a damaged heart, either temporarily or as apermanent prosthesis.Transferring Wait TimePatients may switch to a different transplant hospitaland transfer their waiting time to that hospital. Waitingtime from the original center is added to the timecollected at the new hospital.Transplant CenterA hospital that performs transplants, including evaluatingpatients for transplant, registering patients on thenational waiting list, performing transplant surgery, andproviding care before and after transplant.Transplant ProgramThe organ-specific facility within a transplant center.A transplant center may have programs for thetransplantation of hearts, lungs, liver, kidneys, pancreata,pancreas islets, and/or intestines.Waiting ListAfter evaluation by the transplant team, a patient isadded to the national waiting list by the transplantcenter. Lists are specific to organ type: heart, lung, kidney,liver, pancreas, intestine, heart-lung, and kidney-pancreas.Each time a donor organ becomes available, the UNOSsystem generates a list of candidates based on factorsthat include genetic similarity, organ size, medicalurgency, proximity of the donor to potential recipients,and time on the waiting list. Through this process, amatch run list is generated each time an organ becomesavailable that best “matches” possible patients to adonated organ.49

Section 8Resources

Go to www.transplantliving.org formore resources, or call UNOS patientservices at (888) 894-6361.Air Charity Network (Angel Flight)4620 Haygood Road, Suite 1Virginia Beach, VA 23455Phone: (800) 549-9980Web: http://aircharitynetwork.orgTransports ambulatory patients using private pilotsand aircraft, for transplant and follow-up appointments.Service is free-of-charge; patient must documentmedical and financial need.American Kidney Fund6110 Executive Blvd., Suite 1010Rockville, MD 20852Phone: (800) 638-8299Web: www.akfinc.orgAmerican Liver Foundation39 Broadway, Suite 2700New York, NY 10006Phone: (800) GOLIVER [465-4837]Email: webmail@liverfoundation.orgWeb: www.liverfoundation.orgChildren’s Organ Transplant Association2501 COTA DriveBloomington, IN 47403Phone: (800) 366-2682Web: www.cota.orgGeorgia Transplant Foundation (GTF)6600 Peachtree Dunwoody Road600 Embassy Row, Suite 250Atlanta, GA 30328Phone: (866) 428-9411Web: www.gatransplant.orgProvides financial and educational assistance for thoseundergoing or waiting for a transplant.Medicare HotlinePhone: (800) MEDICARE [633-4227]Web: www.medicare.govMinority Organ Tissue TransplantEducation Program2041 Georgia Avenue, NWAmbulatory Care Center, Suite 3100Washington, DC 20060Phone: (800) 393-2839; (202) 865-4888Web: www.nationalmottep.orgNational Living Donor AssistanceCenter (NLDAC)2461 S. Clark Street, Suite 640Arlington, VA 22202Phone: (888) 870-5002, (703) 414-1600Web: www.livingdonorassistance.orgNational Organization of Social SecurityClaimants’ RepresentativesPhone: (201) 567-1542Web: www.nosscr.orgNational Transplant Assistance Fund150 N. Radnor Chester Road, Suite F-120Radnor, PA 19087Phone: (610) 727-0612, (800) 642-8399Web: www.ntafund.orgNational Foundation for Transplants5350 Popular Ave., Suite. 430Memphis, TN 38119Phone: (800) 489-3863, (901) 684-1697Email: info@transplants.orgWeb: www.transplants.orgTransplant Recipients InternationalOrganization (TRIO)Phone: (800) TRIO-386 ([800] 874-6386)Email: info@trioweb.orgWeb: www.trioweb.org51

ResourcesSection 8Prescription Drug Assistance ProgramsPatient assistance programs for prescribedimmunosuppressive medications are available by contacting:Abbott Patient Assistance ProgramPhone: (800) 633-9110Web: www.abbottpatientassistancefoundation.orgAstellas Reimbursement Services9a.m.–8.pm ETPhone: (800) 477-6472Fax: (866) 317-6235Web: astellasreimbursement.comGenentech Access to Care ProgramPhone: (877) 757-6243Novartis Transplant Reimbursement InformationPhone: (877) 952-1000NeedyMedsWeb: www.needymeds.orgWeb-based list of prescription assistance programsThe only thing thatstands between aperson and what theywant from life is oftenthe will to try it andthe faith to believeit’s possible.– Rich DeVos (heart transplantrecipient and founder of Amway)52

www.transplantliving.org54P.O. Box 2484 | Richmond, VA 23218www.unos.org011l-032-4191 9/11