Information Kit

If you would like to contact one of our offices, our statewide toll free number is: (877) 633-1800

.

Main Office

8502 West Center Rd Omaha, NE 68124 Website

www.nedonation.org

Mission Statement

The mission of Nebraska Organ Recovery System is to maximize the recovery and quality of organs and tissues for transplantation while maintaining sensitivity, compassion and respect for people of all cultures.

Scope

Nebraska Organ Recovery System (NORS) is a non-profit organization that operates as the primary contact for organ, tissue and eye donation services for the state of Nebraska, and Pottawattamie County in Council Bluffs, Iowa. The Centers for Medicare and Medicaid Services has certified NORS to function as the single organ procurement agency serving the state of Nebraska. NORS also serves as the tissue recovery agency for much of the state.

As the name indicates, NORS serves the entire state of Nebraska. It works with more than 99 hospitals across the state. It also works closely with the Lions Eye Bank of Nebraska to promote eye donation. In keeping with its goals, NORS engages in many interrelated activities: organ and tissue recovery, organ distribution, public education, hospital development, and family support services.

The Clinical and Procurement Coordinators manage the identification, evaluation and medical maintenance of organ and/or tissue donors. NORS also coordinates the placement, recovery, and transportation of recovered organs and tissues. In addition, NORS works to facilitate eye donation and recovery.

The organization’s public education focus is on increasing awareness and acceptance of organ and tissue donation. This function is conducted by NORS Public Relations Coordinator. Public education includes: presentations to groups of various sizes and types, school programs, and a variety of special events.

Professional education functions are handled by Client Services personnel who work with hospital staff to develop procedures, protocols and documentation necessary for organ and tissue donor referral and recovery. Other Client Services duties include meeting with hospital administration and personnel to support organ and tissue donation, as well as follow–up activities after each organ and tissue referral, donation and/or recovery. In addition, NORS provides services and support to organ and tissue donor family members.

NORS is associated with several professional organizations at the national level, such as the Association of Organ Procurement Organizations (AOPO) and the United Network for Organ Sharing (UNOS). In cooperation with the guidelines set forth by these professional associations and governing bodies as well as transplant centers across the country, donated organs are allocated equitably to transplant patients according to national distribution regulations.

Map of United Network for Organ Sharing Regions

For a color map outlining the UNOS regions, please visit: http://www.unos.org/whoWeAre/regions.asp

Map of OPO Headquarters

For a color map that indicates the locations of OPO headquarters in each UNOS region, please visit: http://www.unos.org/whoWeAre/OPOs.asp

OPO Listing

For a complete, updated listing of OPOs, their services areas, and administration contacts, please visit the AOPO website, www.aopo.org.

Quick Facts

Over 114,000 Americans currently wait for a life-saving organ transplant. Nearly 500 of those people are Nebraska residents. For up-to-date transplant and donation statistics, please visit www.UNOS.org.

Seventeen people on the national waiting list die every day, about 6,000 people every year or 1 person every 85 minutes because there are not enough donated organs.

Every day, 103 new names are added to the national organ waiting list. That is 1 person added every 14 minutes, every day.

Up to 100 people in need can benefit from one person’s decision to be an organ and tissue donor.

With recent advances in medical technology, more people than ever before can be donors, even those over 80 years of age.

People between the ages of 18 and 49 make up almost 60% of the national organ waiting list.

Individuals over the age of 16 can indicate their consent to be an organ and tissue donor, however a parent or legal guardian can override that decision until the child is 18-years-old.

The only absolute medical rule-out for donation is HIV/AIDS.

50,000 sight-restoring transplants are performed every year.

African Americans, who represent 12% of the national population, receive more than 20% of all kidney transplants. Because of specific medical conditions including diabetes and high blood pressure.

Organ Donation After Circulatory Death

Organ donation after circulatory death (DCD) is donation by a patient who is deceased by means of cardiac arrest, rather than being determined to be brain dead.

An DCD donor is a patient who is on a ventilator and has minimal brain function, is not expected to survive, and the family wants to discontinue mechanical support. The family, physicians and OPO staff determine the time and place of ventilator withdrawal. This usually occurs in an operating room so that the organ procurement process can take place soon after cardiac death is declared.

DCD is a potential source of organs that can alleviate the current shortage of organs and allow those who wish to donate, the opportunity to do so. DCD was actually used in the early years of organ donation since brain death criteria were not established until the mid-1970s.

DCD recovery will only occur after the family has provided written consent for organ donation. These donors are also declared dead by a medical professional not affiliated with the organ recovery.

“Black” Market for Organs

If you are a careful researcher, intent on finding the truth, you will find that, in spite of rumors to the contrary, there is no “black market” for organs in the United States. The tragic fact is that many people believe these myths, with the attendant mistrust of the donation process system resulting in a potential decrease in donation and an increase in the number of patients waiting for an organ. In 1984, Congress passed the National Organ Transplant Act which outlaws the buying and selling of human organs in the United States. By federal law, all organs procured for transplant from deceased donors in this country are monitored and tightly controlled by the United Network

for Organ Sharing (UNOS) making it illegal to retrieve or transplant human organs outside of the system. The intent of the law is to ensure equitable access to donor organs without any group or person having an unfair advantage.

Celebrities and Donation

Celebrities do not get special consideration because they are famous. They receive their transplants just like everyone else listed with UNOS.

Conditions of Participation Focused on Organ Donation

The CMS regulation focusing on increasing organ donation is commonly referred to as the “Conditions of Participation” (CoP). The CoP became effective on August 21, 1998, and requires all hospitals that receive Medicare reimbursement to identify and refer all deaths to a designated organ procurement organization.

Organ Donation from Prisoners/Transplants to Prisoners

The prison population requires consent before they undergo any operation regarding the removal of organs. Consent can come from the prisoner or a family member in the case of deceased donation in some instances; prisoners have been allowed to become living donors to family members. Prisoners can receive organs. Prisoners must be accepted through a transplant center and listed on the UNOS waiting list like any other patient who needs an organ transplant.

Donor Registries

A donor registry is a database containing a person’s consent, while living or intent to donate organs, tissues and/or eyes after their death. Each state has its own laws regarding donor registries including who has access to the registry information and where the registry is operated.

Donor registries can provide instant information on a patient who has died and what his/her donation wishes may have been. This information is vital to the patient’s family to confirm the decedent’s wishes. To learn about each state and the existing registries, please visit: www.shareyourlife.net

Donor Designation

Any person who legally designates his/her wishes to be an organ, tissue and/or eye donor should have his/her wishes honored at the time of death if there is a first-person consent law in the particular state in which he/she dies. Nebraska’s first-person consent law is legal and binding, as long as the decedent is over the age of 18.

While first person consent laws vary from state to state, the intent remains relatively the same. States can require anything from an entry in a donor registry to a simple notation on a driver’s license.

It is important to remember that just because someone has a donor designation, the potential donor’s next-of-kin will not be ignored. Organ procurement professionals will take the time needed with each donor’s family to explain the process and answer questions. The only step in the process that is removed is asking the legal next-of-kin to sign a consent form.

NORS affirms that all recovery organizations should follow the wishes of a decedent regarding organ and tissue donation, provided that there appears to be no legal or patient safety reason that would preclude such a course. OPO and hospital staff, as necessary, should be provided appropriate training for donor family contacts, emphasizing an approach that reinforces the wishes of the decedent. Organ procurement organizations, other recovery organizations, and state agencies have the responsibility to ensure that information is made available to individuals so that they can have the opportunity to make an informed decision regarding donation.

How the Organ Recovery Process Works

The organ recovery process involves a complex series of events coordinated by medical professionals in organ procurement organizations and hospitals. The National Organ Transplant Act of 1984 (NOTA) was enacted to help ensure the process is carried out in a fair and efficient way, leading to equitable distribution of donated organs. The act established the national Organ Procurement and Transplant Network (OPTN) for matching donor organs to waiting recipients. The OPTN is managed through the United Network for Organ Sharing (UNOS) located in Richmond, Virginia. UNOS works with 58 federally designated OPOs across the country to place organs locally, regionally and nationally.

A: The Organ Recovery Process:

1. Medical professionals at a hospital identify a potential candidate for donation. The nature of the injury leads a physician to determine if the patient is brain dead or a potential DCD candidate.

2. The OPO is called on all patient deaths and imminent patient deaths. Information is

provided on the patient’s medical status and the OPO clinical coordinator evaluates the patient. The evaluation includes a medical and social history and physical examination of the patient. This determines whether or not the patient is a suitable candidate for donation.

3. If the patient is a candidate for organ and/or tissue donation, at an appropriate time the legal next-of-kin is offered the option of donation if a donor designation or first-person consent by the decedent cannot be identified or is not applicable by state law. If the family consents, the legal next-of-kin signs a donor consent form.

4. Once family consent or donor designation has been provided, the OPO clinical coordinator, in concert with the hospital staff, maintains the patient medically. In some cases physician support is requested on a consultation basis.

5. Information on the organs available for donation, the donor’s blood type and body size is provided to UNOS by the OPO clinical coordinator. The UNOS computer then matches the donated organs to potential recipients.

6. Recipient selection is based on blood type, body size, medical urgency, and length of time on the waiting list. The heart, liver and lungs are matched by blood type and body size. In matching the pancreas and kidneys, genetic tissue type is also considered.

7. A computerized list of waiting patients in the matching blood group is provided to the OPO coordinator who seeks to match organs with recipients in the OPO’ s donation service area. If a match cannot be made for a specific organ within this area, the organ is offered on a regional basis, then nationally, if necessary.

8. When a recipient match has been found, the OPO coordinator calls the transplant center for the patient who matches the donated organ(s). The patient's transplant surgeon is responsible for making the decision whether to accept the organ. If the surgeon declines the organ for that patient, the OPO coordinator contacts the transplant surgeon of the next patient on the list. This process continues for each organ until all of the organs have been appropriately matched with recipients. The OPO coordinator then arranges for the operating room (for the recovery of the organs) and the arrival and departure times of the transplant surgery teams.

9. When the surgical team arrives, the donor is taken to the operating room where the organs and tissues are recovered through a dignified surgical procedure. In accordance with federal law, physicians recovering the organs do not participate in the donor's care prior to the determination of brain death.

10. Once the recipients have been identified, they are called by their transplant surgeons for the final pre-operative preparations while the organ recovery process is occurring at the donor hospital. Upon the organs’ arrival at the transplant hospital, the recipients are taken to surgery and the transplants are performed.

11. The OPO coordinator takes a sample of the lymph node tissue to a laboratory for tissue typing and subsequent matching with recipients. Other organs are taken directly to the recipients by the surgical recovery teams.

12. After the recovery process has occurred, the donor family can proceed with funeral or burial plans, which are not affected by the organ donation. Organ and tissue donation is a dignified and respectful process.

B: Organ Preservation Time Organ Preservation Time Heart 4-6 hours Lung 4-6 hours Liver 6-10 hours Pancreas 12-18 hours Intestine 6-12 hours

Kidneys Up to 24 hours

The OPO coordinator follows up each donation by sending letters to the donor’s family, hospital staff, physicians and nurses regarding the organs and tissues that have been recovered.

Tissue Donation

NORS recognizes the importance of both organ and tissue donation and aims to meet the association mission “to maximize the recovery and quality of organ and tissue for transplant while maintaining sensitivity, compassion, and respect for people of all cultures.”

Living Donation

There are three types of living donors: living-related, living un-related, and anonymous. A living-related donor is a blood relative who desires to donate to a family member. A living-unrelated donor is a close friend or spouse who desires to donate to an individual in need whom the person knows. Altruistic donors give an organ to a stranger, someone they have never met, out of kindness. Living organ donors may donate a kidney, part of a liver or part of a lung.

Although there are health risks attributed to becoming a living donor, living donations are important and valuable because of the shortage of deceased donor organs. For many patients, the pre-transplant period is a long wait. With appropriate planning, use of a living donor makes it possible to reduce the waiting period and waiting list.

NORS does not recover organs from living donors. To learn more about living donation, visit http://www.nebraskamed.com/transplant/becoming-a-donor.aspx

Questions and Answers Regarding Donation

“If I’m admitted into the hospital and the doctors know I want to be a donor, will they still try and save my life?” There is no conflict between saving lives and using organs for transplant. Medical professionals will do everything they can to save your life. The doctors who work to save your life are not the same doctors involved with organ donation. It is only after every attempt has been made to save your life, that donation will be discussed with your next-of-kin.

“I’m registered on my driver’s license and it is in my will that I want to be a donor, do I still have to tell my family that I want to be a donor?” Even with first person consent/donor designation it is still recommended that you inform your family of your wishes to donate so there are no surprises at the time of your death. Some states do require consent from your legal

next-of-kin for donation to occur, so it is extremely important that you inform them of your wishes. A will is accessed by the family well after the death has occurred and is useless in expressing donation wishes.

“Won’t donation cost my family a lot of money if I become a donor?” There is no cost to the donor’s family for organ donation. Hospital expenses incurred prior to brain death declaration and funeral expenses after the donation are the responsibility of the donor’s family. All costs related to donation are paid for by the organ procurement organization. In fact, many OPOs have dedicated staff to review hospital bills to ensure that donor families are never charged for donation-related expenses.

“Can I still have an open casket funeral if I am a donor?” The donor’ s body is treated with a great deal of respect and dignity. The recovery of organs is conducted under standard, sterile conditions in an operating room by qualified surgeons or qualified recovery personnel. It is extremely unlikely that the process will disfigure the body, or change the way it looks in a casket.

“Will anyone want my organs? I think I’ m way too old and I have been sick in the past.” At the time of death, the appropriate medial professionals will review your medical and social history to determine if you are a candidate for donation. Anyone, regardless of age, can be considered for organ donation. With recent advances in transplant, more people than ever before can donate.

“How do I know that I will be really dead before my organs are procured?” Organ donation only occurs after death has been determined by a doctor (in some states two doctors) not involved in transplant. To donate organs, a patient must be brain dead or meet the criteria for ODCD.

“Can organs be given to different racial groups or individuals of the opposite sex?” In most cases, race and gender are not a factor. However, organ size is critical to match a donor heart, lung or liver with a recipient. Plus, people of similar ethnic backgrounds are more likely to match each other than those of different racial heritage. Cross-racial donations can, and do, happen with great success when the matches are available.

“Can the donor family meet the recipients?” The identity of all parties is kept confidential. The donor family and the transplant recipient may receive information such as age, sex, occupation and general location. Individually, the recipient may be told the circumstances of death and the donor’ s family may be informed of the transplants that were performed and receive information about the health status of the recipients. Donor families and recipients are encouraged to communicate with each other through the OPO. While the initial contact is anonymous, families and recipients may decide to communicate openly after a period of time and if both parties are interested, they may meet.

Religious Beliefs Regarding Organ Donation AME & AME ZION (African Methodist Episcopal) Organ and tissue donation is viewed as an act of neighborly love and charity by these denominations. They encourage all members to support donation as a way of helping others.

AMISH The Amish will consent to transplant if they believe it is for the well being of the transplant recipient. John Hostetler, world-renowned authority on Amish religion and professor of anthropology at Temple University in Philadelphia, says in his book, Amish Society, "The Amish

believe that since God created the human body, it is God who heals. However, nothing in the Amish understanding of the Bible forbids them from using modern medical services, including surgery, hospitalization, dental work, anesthesia, blood transfusions or immunization."

ASSEMBLY OF GOD The Church has no official policy regarding organ and tissue donation. The decision to donate is left up to the individual. Donation is highly supported by the denomination.

BAPTIST

Though Baptists generally believe that organ and tissue donation and transplant are ultimately matters of personal conscience, the nation's largest protestant denomination, the Southern Baptist Convention, adopted a resolution in 1988 encouraging physicians to request organ donation in appropriate circumstances and to "encourage voluntarism regarding organ donations in the spirit of stewardship, compassion for the needs of others and alleviating suffering." Other Baptist groups have supported organ and tissue donation as an act of charity and leave the decision to donate up to the individual. BRETHREN While no official position has been taken by the Brethren denominations, according to Pastor Mike Smith, there is a consensus among the National Fellowship of Grace Brethren that organ and tissue donation and transplant is a charitable act so long as it does not impede the life or hasten the death of the donor or does not come from an unborn child.

BUDDHISM Buddhists believe that organ/tissue donation is a matter of individual conscience and place high value on acts of compassion. The Reverend Gyomay Masao, founder of the Buddhist Temple of Chicago said, "We honor those people who donate their bodies and organs to the advancement of medical science and to saving lives." The importance of letting loved ones know your wishes is stressed.

CATHOLICISM Catholics view organ/tissue donation as an act of charity and love. Transplants are morally and ethically acceptable to the Vatican. According to Father Leroy Wickowski, “ We encourage donation as an act of charity. It is something good that can result from tragedy and a way for families to find comfort by helping others." Pope John Paul II stated, "The Catholic Church would promote the fact that there is a need for organ donors and that Christians should accept this as a 'challenge to their generosity and fraternal love'so long as ethical principles are followed."

CHRISTIAN CHURCH (DISCIPLES OF CHRIST)

The Christian Church encourages organ and tissue donation, stating that we were created for God's glory and for sharing God's love. A 1985 resolution, adopted by the General Assembly, encourages "members of the Christian Church (Disciples of Christ) to enroll as organ donors and prayerfully support those who have received an organ transplant."

CHRISTIAN SCIENCE

The Church of Christ Scientist does not have a specific position regarding organ donation. According to the First Church of Christ Scientist in Boston, Christian Scientists normally rely on

spiritual instead of medical means of healing. They are free, however, to choose whatever form of medical treatment they desire including a transplant. The question of organ/tissue donation is an individual decision.

EPISCOPAL The Episcopal Church passed a resolution in 1982 that recognizes the life-giving benefits of organ, blood and tissue donation. All Christians are encouraged to become organ, blood and tissue donors "as part of their ministry to others in the name of Christ, who gave His life that we may have life in its fullness."

EVANGELICAL LUTHERAN CHURCH IN AMERICA In 1984, the Lutheran Church in America passed a resolution stating that donation contributes to the wellbeing of humanity and can be “ …an expression of sacrificial love for a neighbor in need.” They call on members to consider donating organs and to make any necessary family and legal arrangements, including the use of a signed donor card.

GREEK ORTHODOX According to Reverend Dr. Milton Efthimiou of the Department of Church and Society for the Greek Orthodox Church of North and South America, "the Greek Orthodox Church is not opposed to organ donation as long as the organs and tissue in questions are used to better human life, such as, for transplant or for research that will lead to improvements in the treatment and prevention of disease."

ROMA / ROMANY (GYPSIES) The Roma, also referred to as "gypsies," are a people of different ethnic groups without a formalized religion. They share common folk beliefs and tend to be opposed to organ donation. Their opposition is connected with their beliefs about the afterlife. Traditional belief contends that for one year after death the soul retraces its steps. Thus, the body must remain intact because the soul maintains its physical shape. HINDUISM

According to the Hindu Temple Society of North America, Hindus are not prohibited by religious law from donating their organs. This act is an individual’s decision. H. L. Trivedi, in Transplant Proceedings, stated that, "Hindu mythology has stories in which the parts of the human body are

used for the benefit of other humans and society. There is nothing in the Hindu religion indicating that parts of humans, dead or alive, cannot be used to alleviate the suffering of other humans."

INDEPENDENT CONSERVATIVE EVANGELICAL Generally, Evangelicals have no opposition to organ and tissue donation. Each church is autonomous and leaves the decision to donate up to the individual.

ISLAM

The religion of Islam believes in the principle of saving human lives. According to A. Sachedina in his Transplant Proceedings’ (1990) article, Islamic Views on Organ Transplant, "The majority of

Muslim scholars belonging to various schools of Islamic law have invoked the principle of priority of saving human life and have permitted the organ transplant as a necessity to procure that noble end."

JEHOVAH’S WITNESSES According to the Watch Tower Society, Jehovah’s Witnesses believe donation is a matter of individual decision. Jehovah’s Witnesses are often assumed to be opposed to donation because of their belief against blood transfusion. However, this merely means that all blood must be removed from the organs and tissues before being transplanted.

JUDAISM

All four branches of Judaism (Orthodox, Conservative, Reform and Reconstructionist) support and encourage donation. According to Orthodox Rabbi Moses Tendler of the Biology Department of Yeshiva University in New York City and chairman of the Bioethics Commission of the Rabbinical Council of America, "If one is in the position to donate an organ to save another’s life,

it’s obligatory to do so, even if the donor never knows who the beneficiary will be. The basic principle of Jewish ethics -‘the infinite worth of the human being’-also includes donation of corneas, since eyesight restoration is considered a life-saving operation." In 1991, the Rabbinical Council of America (Orthodox) approved organ donations as permissible, and even required, from brain-dead patients. The Reform movement looks upon the transplant program favorably and Rabbi Richard Address of the Union of American Hebrew Congregations Bio-Ethics Committee and Committee on Older Adults stated that "Judaic Responsa materials provide a positive approach and by and large the North American Reform Jewish community approves of transplant."

MENNONITE Mennonites have no formal position on donation, but are not opposed to it. They believe the decision to donate is up to the individual and/or his or her family.

MORAVIAN

The Moravian Church has made no statement addressing organ and tissue donation or

transplant. Robert E. Sawyer, president, Provincial Elders Conference, Moravian Church of America, Southern Province, stated, "There is nothing in our doctrine or policy that would prevent a Moravian pastor from assisting a family in making a decision to donate or not to donate an organ." It is, therefore, a matter of individual choice.

MORMON (CHURCH OF JESUS CHRIST OF LATTER-DAY SAINTS) The Church of Jesus Christ of Latter-Day Saints believes that the decision to donate is an individual one made in conjunction with family, medical personnel and prayer. They do not oppose donation.

PENTECOSTAL Pentecostals believe that the decision to donate should be left up to the individual.

PRESBYTERIAN Presbyterians encourage and support donation. They respect a person’s right to make decisions regarding his or her own body.

SEVENTH-DAY ADVENTIST Donation and transplant are strongly encouraged by Seventh-Day Adventists. They have many transplant hospitals, including Loma Linda in California. Loma Linda specializes in pediatric heart transplant.

SHINTO In Shinto, the dead body is considered to be impure and dangerous, and thus quite powerful. “ In folk belief context, injuring a dead body is a serious crime” according to E. Namihira in his article, Shinto Concept Concerning the Dead Human Body. “ To this day it is difficult to obtain consent from bereaved families for organ donation or dissection for medical education or pathological anatomy. The Japanese regard them all in the sense of injuring a dead body.” Families are often concerned that they not injure the itai, the relationship between the dead

person and the bereaved people.

SOCIETY OF FRIENDS (QUAKERS)

Organ and tissue donation is believed to be an individual decision. The Society of Friends does not have an official position on donation.

UNITARIAN UNIVERSALIST Organ and tissue donation is widely supported by Unitarian Universalists. They view it as an act of love and selfless giving.

UNITED CHURCH OF CHRIST

The reverend Jay Lintner as director, Washington Office of the United Church of Christ Office for Church in Society, stated, "United Church of Christ people, churches and agencies are extremely and overwhelmingly supportive of organ sharing. The General Synod has never spoken to this issue because, in general, the synod speaks on more controversial issues, and there is no controversy about organ sharing, just as there is no controversy about blood donation in the denomination. While the General Synod has never spoken about blood donation, blood donation rooms have been set up at several General Synods. Similarly, any organized effort to get the General Synod delegates or individual churches to sign organ donation cards would meet with generally positive responses."

UNITED METHODIST

The United Methodist Church issued a policy statement regarding organ and tissue donation. In

it, they stated that, "The United Methodist Church recognizes the life-giving benefits of organ and tissue donation, and thereby encourages all Christians to become organ and tissue donors by signing and carrying cards or driver's licenses, attesting to their commitment of such organs upon their death, to those in need, as a part of their ministry to others in the name of Christ, who gave his life that we might have life in its fullness." A 1992 resolution stated, "Donation is to be encouraged, assuming appropriate safeguards against hastening death and determination of death by reliable criteria." The resolution further stated, "Pastoral-care persons should be willing to explore these options as a normal part of conversation with patients and their families."

Xenotransplants

Xenotransplant is the term used to describe the transplant of living cells, tissues and organs from one species to another species. Pigs and non-human primates are most often studied for transplants.

The concern of animal viruses potentially bridging the gap to humans raises medical concerns in the transplant field. Among those viruses contractible by people include rabies and a strain of the Ebola virus. Rejection of the animal organ by the human body is also under research.

Ethnic Groups and Donation

Approximately fifty-percent of the national transplant waiting list consists of Caucasian Americans; the other fifty-percent consists of other ethnic groups. As of December 2005, the general breakdown:

50% Caucasian 27% African American 15% Hispanic 5% Asian <1% American Indian/Alaska Native <1% Multi-racial <1% Pacific Islander <1% Unknown

One striking number that stands out when breaking the ethnic groups down by waiting list per organ is African Americans waiting for a kidney transplant. Approximately 35 percent of the kidney waiting list is African American.

Many factors contribute to the shortage of donation in different ethnic groups. Cultural beliefs, misinterpretation of donation policy and lack of family discussions and donor designations are all barriers. Mistrust of the medical system and a fear of not receiving appropriate medical treatment have also been cited as reasons why many individuals of different ethnicities decline donation.

Directed Donations

The official statement from UNOS (reaffirmed, April 1999) regarding directed organ donations.

The following people may become recipients of anatomical gifts:

1. Any hospital, physician, or surgeon, or procurement organization for transplant therapy, medical or dental education, research, or advancement of medical or dental science;

2. Any accredited medical or dental school, college or university for education, research, advancement of medical or dental science, or therapy; or

3. (a) Designated individual for transplant or therapy needed by that individual.

(b) The gift may be made to a designated donee or without designating a donee. If the donee is not designated or if the donee is not available or rejects the anatomical gift, the anatomical gift may be accepted by any hospital.

(c) If the donee knows of the decedent’s refusal or contrary indications to make an anatomical gift or that an anatomical gift by a member of a class having priority to act is opposed by a member of the same class or a prior class under Section 3 (a), the donee may not accept the anatomical gift.

(d) Donation of an organ may not be made in a manner, which discriminates against a person or class of persons on the basis of race, national origin, religion, gender or similar characteristic.

Brain Death

The American Academy of Neurology defines brain death as the irreversible loss of clinical function of the brain, including the brain stem. The Harvard Criteria for the Determination of Brain Death was established in 1968, amended in 1969 and expanded in 1981. Physicians have been using brain stem reflex tests and/or laboratory evidence to determine brain death for decades.

The brain regulates intellectual functions, personality and behavior, sensory input and output, motor skills, balance and coordination, and vital functions (heart rate, blood pressure, respiration and body temperature). When trauma or disease causes devastating brain damage, brain function ceases. For brain death to be determined the patient must be observed for an adequate period of time and two standards must be met: the cause of the injury to the brain must be known, and there can be no circumstances that might make the condition reversible (such as, shock and chemical imbalance, drug intoxication, and/or low body temperature). Once these standards are met, brain death can be determined by brain stem reflex tests and laboratory evidence.

Brain stem reflex tests can determine brain death using several physical tests. When a patient does not react to painful stimuli nor exhibits any purposeful or spontaneous movement, brain stem dysfunction is indicated. Stimulation and irritation are used to check for the absence of gag or cough reflexes that are prominent brain stem reflexes.

Another indicator of brain stem dysfunction is the inability to breathe unassisted. An apnea test to detect spontaneous respiration is usually performed. In this situation, the ventilator is disconnected and the patient is monitored for respiratory movement for approximately 8 to 10 minutes. After blood is drawn for analysis, the ventilator is reconnected. If the blood carbon dioxide level has increased to a level to stimulate respiration and none was observed, brain death is likely.

Laboratory evidence is used to confirm brain death independently and in conjunction with brain stem reflex tests. Cerebral angiography is a photographic study of the blood flow within the brain. Without an adequate supply of blood, brain cells die from lack of oxygen. Blood flow can also be determined by ultrasound imaging and nuclear scans. An EEG is an analysis of the brain’ s

electrical activity, displayed as tracings on graph paper. A flat EEG indicates the absence of brain function.

Paired Kidney Exchanges

Paired kidney exchange programs help patients get a kidney when they have a willing, designated donor whose blood type is incompatible.

In a paired kidney exchange, a kidney from such a donor is matched and transplanted into the recipient of a second donor-patient pair, and vice versa. The transplants are performed simultaneously.

It is estimated that paired exchanges could benefit about 3 percent of patients on the waiting list, yielding about 1,500 additional transplants.

Three Principles for Public Trust in Donation

Ongoing Oversight – The OPOs receive ongoing oversight by appropriate regulatory agencies.

The oversight extends to the wide range of activities conducted by OPOs. Such monitoring should be in place across segments of the donation and transplant community.

Informed Consent – A principle for donor designation and for approaching families regarding

consent should be the need for complete, detailed information about the uses of organs and tissues when families are approached about donation.

Informed Decision-Making – When OPOs have an opportunity to make their own choices

regarding organizational ties, and as they develop a current knowledge base to facilitate informed consent, information regarding the end-use of donation should be ascertained as much as possible.

Acceptable Donation Terms Appropriate Term Inappropriate Term

“ recover” organs “ harvest” organs

“ recovery” of organs “ harvesting” of organs

“ donation” of organs “ harvesting” of organs

“ donation” of organs “ harvesting” of organs

“ recover” organs “ procure” organs

“ recovery” of organs “ procuring” organs

“ deceased” donation “ cadaveric” donation

“ deceased” donation “ cadaver” donation

“ deceased” donor “ cadaver” donor

“ mechanical” support “ life” support

“ ventilator” support “ life” support

“ Organ Donation after Cardiac Death” “ non-heart beating donation”

“ deteriorating to brain death” “ progressing to brain death”

“ determine brain death” “ declare brain death”

“ consent given” “ obtained consent”

“ consent given” “ got consent”

“ facilitated a donation” “ did a donor”

“ donated organs and tissues” “ donated body parts”

“ donated organs” “ organ yield”

National Donate Life Month

Former Health and Human Services Secretary Tommy G. Thompson announced March 7, 2003, that the month of April will be observed as National Donate Life Month to help raise public awareness of the critical need for organ, tissue, marrow and blood donation.

The observation was originally known as National Organ and Tissue Donor Awareness Week and was celebrated for one week in April. It grew out of smaller, independent efforts around the nation to recognize the importance and altruism of organ and tissue donors.

In 1983, the United States Congress "authorized and requested" the President to "issue a

proclamation designating April 22 through April 28, 1984, as National Organ Donation Awareness Week." Aware that many more tissue donations are made each year than organ donations, "tissue" was soon added to the name, and the third full week in April became the traditional time of observance.

National Minority Awareness Day

Each year we observe National Minority Donor Awareness Day to increase awareness among minorities of the urgent need for organ and tissue donation August 1.

An intensive awareness campaign focuses on obstacles related to minorities and donation, promotes healthy living and disease prevention to decrease the need for transplant and reaches out to all ethnic groups. Observances have included prayer breakfasts, health walks and donor drives, many sponsored by the National Minority Organ Tissue Transplant Education Program (MOTTEP).

National Donor Sabbath

Faith communities throughout the nation observe National Donor Sabbath Friday, Saturday and Sunday two weeks before Thanksgiving. Places of worship hold services and programs focused on the life-affirming gifts of hope passed to others by organ, tissue, marrow, and blood donors. Faith leaders participate in discussions of donation and transplant, and houses of worship implement activities to increase awareness of the critical need for donors.

Donation Highlights

1869 First skin allograft (grafts between two different individuals) 1906 First corneal transplant (Dr. Edward Zim) 1949 Establishment of U.S. Navy Tissue Bank 1954 First living kidney transplant (between identical twins) 1955 First fresh (not frozen) heart valve allograft put into descending aorta 1963 First liver (Dr. Thomas Starzl) and first lung (Dr. James Hardy) transplants 1967 First Heart transplant (Dr. Christian Barnard) 1968 Harvard Criteria For The Determination of Brain Death established and the Uniform

Anatomical Gift Act (UAGA) drawn up 1969 First pancreas transplant (Dr. Lillche) and Harvard Criteria amended 1970 Introduction of cryopreserved (frozen) techniques in tissue allografts 1977 NORS was founded 1978 Cyclosporine, a major advancement in immunosuppressants, introduced 1981 First combined heart/lung transplant (Dr. Norman Shumway) and President’s

Commission for Study of Ethical Problems in Medicine and Biomedical Research expands upon the Harvard Criteria

1984 National Organ Transplant Act establishes National Task Force on Organ Transplantation legislates federally funded centralized waiting list for organ recipients, outlaws buying and selling of human organs, mandates establishment of the Organ Procurement and Transplantation Network and Scientific Registry (begins operating in 1987)

1986 Consolidated Omnibus Budget Reconciliation Act amends Social Security Act, requiring all hospitals to adopt policies and procedures to identify potential donors and offer families the option to donate. This Routine Inquiry (“routine request”) supersedes state laws and directly ties Medicare funding to compliance

1988 Joint Commission on Accreditation of Health Care Organizations sets donor identification and notification standards

1993 FDA sets standards for regulating tissue banks 1994 Division of Organ Transplantation assumes oversight of the National Marrow Donor

Program (becomes Division of Transplantation in 1995) 1995 Uniform Anatomical Gift Act revised and expanded: establishes “intention to donate”

indicator on drivers licenses, signed donor cards become legal documents, allows for “designated donation,” establishes next-of-kin rankings for organ donation consent (power-of-attorney, spouse, adult child, parent, sibling, grandparent and guardian). Subsequent legislation requires organ donation incorporated in driver’s education curriculum

1995 Anatomical Gift Public Awareness and Transplantation Fund instituted, allowing vehicle owners to make a monetary donation as part of vehicle registration. Monies to be used for public education programs and other stipulated expenses

1998 Health Care Finance Administration (HCFA) Regulation of Conditions of Participation in Medicare and Medicaid Programs – Mandate hospitals report all deaths to an Organ Procurement Organization (OPO) to determine suitability to donate organs, tissues or eyes; and if a potential donor, that family is approached by a trained requestor.

2003 Nebraska passes First Person Consent legislation, which allows for Nebraskans to legally consent to donation prior to death.

2011 The Revised Uniform Anatomical Gift Act is passed in Nebraska. The Act provides stronger language for First Person Consent.

History of Transplant

The history of organ procurement and transplant is an ancient one. Since the time of the Egyptian civilization to the present, man has been keenly interested in replacing parts of the

human body. The 13th

century medieval story of Saints Cosmos and Damien tells of transplanting the leg of a recently deceased man onto a devoted church member whose own leg was afflicted with gangrene. According to legend, the transplant was a success.

Kidney Drugs exclusively made for immunosuppression were not used until 1962, when Dr. Murray performed the first successful cadaver kidney transplant at the Peter Bent Brigham Hospital in Boston, Massachusetts. Dr. Roy Calne and Dr. Murray used 6-mercaptopurine to immunosuppress the recipient and control rejection. The recipient had normal kidney function for 21 months post-transplant.

Liver In 1963, Dr. Thomas Starzl performed the first human liver transplant. Liver transplants are performed on children and adults who have end-stage liver failure.

Lung Dr. James D. Hardy performed the first lung transplant in 1963 at the University of Mississippi. The recipient died after 18 days.

Heart In 1967, Dr. Christian Barnard performed the first successful human heart transplant in Cape Town, South Africa. He used techniques pioneered in the U.S. at Stanford University by Drs. Norman Shumway and Richard Lower. The recipient only lived 18 days, but this transplant was followed by a sudden flurry of increased interest in cardiac transplant.

Heart-Lung Dr. Shumway and Dr. Bruce Reitz performed the first successful heart-lung transplant at Stanford University in 1981. The recipient, a 45-year-old woman from Arizona, lived approximately four years after her transplant.

Pancreas The first recorded human pancreatic transplant was performed on Dec. 20, 1893, 29

years before the isolation of insulin. Dr. Watson Williams transplanted three pieces of fresh sheep’ s pancreas into a 15year-old boy at the Bristol Royal Infirmary. The recipient lived for three days. In 1967, Dr. Richard C. Lillehei at the University of Minnesota performed the first successful pancreatic transplant. The recipient, a 32-year-old female, received a combined kidney/pancreas transplant. She died of pneumonia 114 days later. Small Bowel Dr. Lillehei and colleagues first demonstrated prolonged function with small bowel grafts in dogs. He performed the first human transplant in 1967. Interest waned in the 1970s and ‘80s but was sparked in the 1990s by Dr. Starzl and the use of FK 506 (prograf) immunosuppression. Fewer than 20 transplant centers currently perform small bowel transplants.

The Transplant Community

Federal Organizational Structure

The Organ Procurement and Transplant Network and the Scientific Registry of Transplant Recipients (SRTR) are administered by the Division of Transplantation, a division of Health Resources and Services Administration, within the Department of Health and Human Services. The United Network for Organ Sharing (UNOS) holds the three-year contract to operate the OPTN and the University Renal Research and Education Association (URREA) manages the Scientific Registry of Transplant Recipients.

Policies governing the transplant/procurement community are developed with government oversight by UNOS membership through regional meetings, national committees, public comment periods and approval by a board of directors composed of healthcare professionals, patients and public members.

The Joint Commission for Accreditation of Healthcare Organizations (JCAHO) sets the standards concerning the routine identification of potential organ and tissue donors, and presenting the option for donation to the next of kin when medically appropriate.

United Network for Organ Sharing -is a nonprofit corporation organized to improve the effectiveness of organ donation, procurement, distribution and transplant. UNOS is a computerized national network of transplant centers, laboratories, and organ procurement organizations seeking to place organs for transplant. It instantaneously coordinates the matching and placement of donor organs with potential recipients on the national waiting list. It also develops equitable, unbiased donor organ allocation policies based on medical and scientific criteria.

The Scientific Registry of Transplant Recipients was established to collect data for the continuous evaluation of the status and outcome of transplant recipients. NATCO, The Organization for Transplant Professionals, seeks to train, educate and prepare

procurement coordinators (who evaluate and manage donors, and facilitate the recovery of donated organs), clinical transplant coordinators (who identify, evaluate, and care for recipients before and after transplant) for certification testing.

Founded in 1992, the Richmond, Virginia based Coalition on Donation is a not-for-profit

alliance of local affiliates and national organizations united to educate the public about organ and tissue donation, correct misconceptions about donation and create a greater willingness to donate.

U.S. Transplant Games

Organized by the National Kidney Foundation, the U.S. Transplant Games is competition among recipients of organ transplants. Competition in the U.S. Transplant Games is open to anyone who has received a lifesaving solid organ transplant--heart, liver, kidney, lung, and pancreas. Bone marrow recipients are also eligible to participate. As much as the Games are an athletic event that calls attention to the success of organ and tissue transplant, it is also a celebration of life

among recipients, their families and friends. The Games are held in even-numbered years at different venues across the United States.

National Donor Recognition Ceremony and Workshop

The ceremony and Workshop are sponsored by the Division of Transplantation, Health Resources & Services Administration, U.S. Department of Health & Human Services with the assistance of the National Donor Family Council of the National Kidney Foundation. This biennial event, held in odd-numbered years, pays tribute to America’s organ, tissue and marrow donors.

Glossary of Terms Related to Donation AATB -American Association of Tissue Banks, a scientific, not-for-profit, peer group organization founded in 1976 to facilitate the provision of transplantable cells and tissues of uniform high quality in quantities sufficient to meet national needs.

Abdominal -Term that refers to organs located below the diaphragm: liver, pancreas, kidneys

and small bowel.

ABO Blood Group -Blood “ type.” There are four blood types, A, B, AB and O. Those with blood type “ A” can only receive blood or organs from A or O donors. Those with blood type “ B” can only receive blood or organs from donors with type B or O; those with blood type “ O” can only receive blood or organs from donors with type O; those with blood type “ AB” can receive blood or organs from donors who are A, B, O, or AB.

Allocation -The system of ensuring that organs and tissues are distributed fairly to patients in need.

Allograft -Organs or tissues transplanted between individuals of the same species.

American Society of Transplantation – The organization representing transplant professionals dedicated to research, education, advocacy and patient care in transplantation.

American Society of Transplant Surgeons -The national scientific society of

surgeons specializing in transplant surgery.

Anencephaly -A condition in which an infant is born without a major part of the brain.

Angiogram -An X-ray examination of blood vessels using a dye to assess heart function.

Antibody -A protein substance made by the body’ s immune system in response to a foreign substance. For example, a previous transplant, blood transfusion or pregnancy. Because the antibodies attack the transplanted organ, transplant patients must take immunosuppressive drugs.

Antigen -Any substance that, when introduced, elicits an immune response specifically directed at the inducing substance.

AOPO -Association of Organ Procurement Organizations: The national organization

that represents all organ procurement organizations in the U.S.

ASMHTP – American Society of Multicultural Health and Transplant Professionals

Autoantibody -An antibody made by an individual’ s immune system, which is directed against itself.

Autograft -Tissue or bone transplanted from one site on an individual’s body to another site.

Autologous -Derived from self.

Autopsy – Generally,a postmortem examination of the body to determine the cause of death. If the procedure coincides with organ donation, a solitary cranial examination is usually done. If the procedure coincides with tissue donation, the organs are examined for any evidence of disease processes that would preclude use of the recovered tissues. Blood -The fluid that circulates in the heart, arteries, capillaries, and veins of a vertebrate

animal carrying nourishment and oxygen to and bringing away waste products from all parts of the body.

Blood Type -Different factors present in an individual’s body, which determines blood group; A,

B, AB or O.

Blood Vessels –The arteries,veins and capillaries through which blood circulates. Blood vessels can be donated and transplanted.

Bone -Dense tissue that forms the skeleton. Bone can be donated and transplanted.

Bone Marrow -Soft tissue located in the cavities of bones. Bone marrow is the source of all blood cells. Bone marrow can be donated and transplanted.

Bronchoscopy -A procedure in which a lighted scope (bronchoscope) is passed into the bronchial tree to provide direct visualization of the airways and to allow access for gathering specimens directly from within the lungs and airways.

Cardiac Death -When the heart stops beating.

Cartilage -Non-boney portion of the skeleton.

CDC -Centers for Disease Control and Prevention.

CMS -Centers for Medicare and Medicaid Services. This agency was formerly known as the Health Care Financing Administration (HCFA).

Cold Ischemia Time (CIT) -The length of time from clamping the aorta to implantation in the recipient.

Compatibility -In HLA typing, the sharing of HLA antigens AND the existence of a negative donor/recipient crossmatch.

Compliance -The act of following orders and adhering to rules and policies, such as

taking one's medications post transplant.

Connective Tissue -Forms the supportive and connective structures of the body.

Consented Donor -A local organ donor referral wherein death has occurred and

consent given for recovering at least one vascularized solid organ for the purpose of

transplant. Suitability is determined at the time at which both death and consent take

place.

Continuous Quality Improvement -CQI allows organizations to identify service areas that need improvement and cost-cutting opportunities.

Cornea -The transparent outer coating of the eyeball that covers the iris and pupil. Corneas can be donated and transplanted.

Corneal Transplant -Surgical removal of damaged or diseased corneal tissue and replacement with donated human cornea tissue.

CPTC -Certified Procurement Transplant Coordinator, certification for transplant coordinators in the U.S. by the American Board of Transplant Coordinators.

Cross Clamp -When, during organ recovery, the aorta has a large clamp applied to it to cease blood circulation. Crossmatch -The testing of donor blood cells against recipient blood cells to determine if pre-sensitization to donor antigens is present (such as, to determine whether the tissues are compatible). A positive crossmatch means they ARE NOT compatible and a negative crossmatch means they ARE compatible.

CTBS -Certified Tissue Bank Specialist, certification for tissue bank professionals coordinated through the American Association of Tissue Banks.

Cyclosporine A/CsA: An immunosuppressive drug that inhibits the production of interleukin-2 during an immune response.

Death -No longer living, without life. There are two methods of determining death: 1) cardiac criteria occurs when death is due to the cessation of the heartbeat; and 2) brain criteria -the irreversible and permanent cessation of all brain function.

Death Record Review -An in-house review of all deaths at the hospital for a certain period of time. This

helps the OPO identify educational needs, documentation and compliance issues and donor potential.

Decoupling -Separating in time the pronouncement of brain death from offering the option of organ and tissue donation.

Designated Requester -An individual trained by an OPO in offering the option of donation to

families.

Diabetes -Diabetes is a disease in which the body does not produce or properly use insulin. Insulin is a hormone that is needed to convert sugar, starches and other food into energy needed for daily life.

Dialysis -The process of an artificial kidney in which a machine removes extra fluids and waste products from the body of an individual with end-stage renal failure.

Division of Transplantation -This is the branch of the federal government that oversees

donation and transplant. DOT is part of the Health Resources and Services Administration.

Donation -The act of giving one’ s organs or tissue to someone else.

Donor Family -One or more family members or friends of someone who has donated organs and/or tissues.

Donor Registry -A listing or “registry” of potential organ and tissue donors.

Downtime -In reference to time a patient is last seen to when he/she is found not breathing and/or without circulation. Estimated length of time.

Dura -The outer covering of the brain.

EBAA -Eye Bank Association of America. Represents eye banks in the United States and serves as an accrediting body.

Echocardiogram -Ultrasound waves to display and investigate the action of the heart as it beats. Ejection fraction -Measures the ability of the heart to pump blood (EF reported in 1 percent). Electrocardiogram -The electric tracings of the heart’s activity. En-bloc -Removal of two organs together, such as, kidneys and lungs. End-Stage Organ Failure-The point at which an organ fails to function enough to sustain life. Some examples of disease which can cause ESOF are as follows: emphysema (lungs), cardiomyopathy (heart), hepatitis (liver) and polycystic kidney disease (kidneys).

End-Stage Renal Disease (ESRD) – The permanent failure of both kidneys to properly

function and cleanse waste material from the body’ s blood. Minorities suffer from ESRD more frequently than do Caucasians. ESRD is treatable with dialysis; however, dialysis is costly and can result in a poor quality of life for the patient. The preferred treatment of ESRD is kidney transplantation. Transplantation offers the patient “ freedom” from dialysis to lead a more normal lifestyle and it can treat ESRD for many years.

Exported Organs -When organs recovered by the local OPO are exported (shared) to another OPO or transplant center not affiliated with the local OPO.

Extended Donors -A donor who has a lower likelihood of producing transplantable organs possibly due to advanced age or medical history. Replaces the term, “ marginal donor.”

Eye Bank -A facility specifically designed for the recovery, evaluation, and distribution of human eye tissue for transplant and research.

Fascia Lata -A fibrous membrane that covers and supports the muscles.

FDA -Food & Drug Administration, which regulates and oversees tissue banking.

Graft -A term used to describe tissue and organs that are transplanted. Graft Survival Rate -The percentage of organs that continue to function after transplant for a given period of time.

Green Ribbon -The green ribbon symbolizes organ and tissue donation awareness in the U.S. HHS -Health and Human Services, a department of the Federal Government.

HLA Lab -The histocompatibility (tissue typing) labs, that tests histocompatibility on all potential donors.

HLA Typing -The identification of the human leukocyte antigens (HLA) of the histocompatibility system.

Heart -A muscular organ that pumps blood through the body. The heart can be donated and transplanted.

Heart Valves -Tissues that open and close, regulating the flow of blood into and out of the heart. The heart valve can be donated and transplanted.

Hemodialysis -The removal of waste products in the blood by filtering it through a semi-permeable membrane. It is performed with a machine that circulates a small amount of blood through a pump outside the body. It is akin to an artificial kidney.

Homograft -Same as “ allograft”

Human Leukocyte Antigens -also known as tissue type.

Immune Response -The process by which the normal body rids itself of foreign substances, which could be harmful. A foreign substance may be a splinter, an organ, or bacteria, among others.

Immunity -Not vulnerable to an attack from outside. Immunosuppressive Drugs -Medications, which suppress the immune response, so that the body will not reject a transplanted organ or tissue. Drugs commonly used to suppress the immune system after transplants include: prednisone, tacrolimus mycophenolate, and rapamycin.

Immunosuppression – The process of using chemical agents that cause the human body not to produce antibodies that normally fights off foreign material in the body. The production of these antibodies needs to be suppressed to permit the acceptance of a donor organ by the recipient’ s body.

Imported Organs – Organs used by a transplant center that is served by an OPO other than the OPO that recovered the organs.

Informed Consent -Consent that has been given by an individual who has been properly informed about his/her options.

Intestines -The portion of the digestive tract extending from the stomach to the anus,

consisting of upper, middle, and lower segments. The intestines can be donated and transplanted.

Joint Commission for the Accreditation of Health Care Organizations -As the accrediting body for some hospitals, JCAHO reviews and inspects hospitals and other health care organizations once every three years.

Kidneys -Pair of organs that maintain proper water and electrolyte balance, regulates

acid-base concentration, and filters the blood of metabolic waste, which is excreted as urine. Kidneys can be donated and transplanted.

Ligaments -A band of connective tissue that joins bone ends at joints and holds organs in place.

Liver -A large reddish-brown organ that secretes bile and is active in the formation of certain blood proteins and in the metabolism of carbohydrates, fats, and proteins. The liver also filters some toxins from the blood. The liver can be donated and transplanted.

Lobe -A section of an organ, such as liver or lung.

Lungs -A pair of spongy organs that remove carbon dioxide from the blood and provide it with oxygen. The lungs can be donated and transplanted.

Lung Scan -Nuclear study performed to determine the function of the lungs.

Mandatory Share -Required by UNOS policy to offer an organ to another OPO for a recipient with HLA typing similar to the donor.

Mandible -The jawbone.

Medical Examiner -A public officer who makes postmortem examinations of bodies to find the cause of death.

Metabolism-the process in which the body breaks down products such as protein or

sugar to be used as energy.

Medical/Social History Questionnaire -A series of very specific questions about a person’ s previous medical history and social behavior, especially as it relates to sexual promiscuity or illegal drugs asked by the organ procurement organization to family members or friends of a potential donor to gain an understanding of the donor’ s health risks. Middle Ear -Contains three small bones, or ossicles, known because of their shapes as the hammer, anvil, and stirrup. The ear is the organ of hearing and equilibrium. The middle ear can be donated and transplanted. MOTTEP -Multicultural Organ Tissue Transplant Education Program

NATCO – The Organization for Transplant Professionals (formerly the North American Transplant Coordinators Organization).

National Organ Transplant Act -Passed by Congress in 1984, NOTA outlawed the sale of human organs and initiated the development of a national system for organ sharing and a scientific registry to collect and report transplant data.

Next-of-Kin -A person who may legally grant consent for the donation of organs and tissues as defined by the Uniform Anatomical Gift Act (such as spouse, parent, etc.)

NKF -National Kidney Foundation

NMDP -National Marrow Donor Program

Omnibus Budget Reconciliation Act of 1986 – A Federal law that requires any

Medicare funded hospital to have a written donation protocol, procurement organization notification system and a framework for the clinical management of potential donors.

Organ Donation after Cardiac Death -ODCD is the recovery of organs from those patients who are deceased because of cessation of cardiac activity rather than being determined brain dead. Usually, these patients have suffered a severe, irreversible brain injury but retain some brain stem activity, usually a respiratory drive.

Organ Preservation -The act of protecting an organ from harm or damage when it is removed from the body. Between procurement from a donor and transplant, organs require special methods of preservation. The length of time that organs and tissues can be kept outside the body varies, depending on the organ, the preservation fluid and the temperature.

Organ Procurement Organization (OPO) -Federally designated organizations that

coordinate activities relating to organ retrieval (procurement) in a designated area. OPO activities include: evaluating potential donors, discussing donation with surviving family members, arranging for the surgical removal and transport of donated organs, and educating the public about the need for donations.

Organ Procurement and Transplant Network (OPTN) -Made up of transplant

centers, histocompatibility labs, and OPOs, the OPTN was established by federal legislation in 1984 to control and equitably allocate available organs through a national computerized prioritizing system. .

Organ -Internal part of the body that is required for the body to function.

Organ Donation – The act of giving of organs from a living or deceased person for recovery and use in transplant.

Pancreas -A long, irregularly shaped gland, which lies behind the stomach and secretes a fluid into the lower end of the stomach that aids in the digestion of proteins, carbohydrates and fats. People, who are diabetic, have a pancreas that is not functioning properly. The pancreas can be donated and transplanted. The plural is pancreata. Pancreatic Islet Cells -Small group of endocrine cells in the pancreas, responsible for production of

glucagons, insulin and somatostatin.

Payback -A UNOS term designated for handling the accounting of kidney imports/exports. If an OPO exports a kidney to a transplant center outside its local service area, that OPO is entitled to a payback. If an OPO imports a kidney from another OPO, the recipient OPO owes a payback.

Pericardium -The sack of tissue, which surrounds the heart.

Peritoneal Dialysis -. A type of dialysis that uses fluids of different concentrations in the peritoneal cavity to remove waste products from the blood of a. patient whose kidneys have failed

Phenotypically Identical -A histocompatibility term that indicates a perfect donor/recipient match. The only better match would be a blood relative.

Potential Donor -A patient who has been referred to an organ procurement organization and has been determined dead and meets medical criteria for donation.

Potential Living Donor-A person who may consider or is in the process of being evaluated as a living donor

Preservation -Use of chemical or physical agents to prevent biological or physical deterioration of tissues during storage.

Pulmonary Fibrosis -Lung disease characterized by the formation of scar tissue in the connective tissue framework of the lungs. It may be of unknown origin or secondary to other disorders.

Presumed Consent -Consent by presuming the individual(s) wants to be an organ and/or tissue donor without ever asking their permission.

Procurement -The processing of retrieving organs and/or tissue from a donor.

Procurement Coordinator -A person who arranges the donation process. This can include providing information, counseling families, donor management and organizing all facets of organ and tissue recovery.

Quality Assurance -The review of procedures, documents and test results by qualified personnel to ensure the safety of transplantable organs/tissue, and that all necessary documentation has been completed.

Recipient -A person who receives an organ or tissue transplant.

Reconstruct -To rebuild or return to one’ s original state – to ensure that the site of organ and/or tissue recovery is restored.

Recovered Donor -When at least one vascularized solid organ is recovered for the purpose of transplant.

Recovery -Another term used for “ procurement or retrieval” of organs and/or tissue.

Rejection -Occurs when an organ or tissue and recipient are not compatible. The recipient’ s immune system sees the donated organ as ‘foreign’ and tries to attack it.

Renal – Relating to the kidneys. Requesting -The term used for offering the option of donation to families. Re-transplant -Due to organ rejection or transplant failure, some patients return to the waiting list. Reducing the number of re-transplants is a critical concern when examining ways to maximize a limited supply of donor organs.

Rule-out -Term used when an individual is considered not to be a potential donor.

Skin -The tissue forming the external covering of the body. Skin can be donated and transplanted.

Split Liver Transplant -The surgical process of dividing one liver into two portions to be used with two individuals in need of a liver transplant.

Skin Graft -A thin layer of skin applied to a patient to increase protection, aid in healing, and decrease infection and fluid loss.

Status -Indicated degree of medical urgency for patients awaiting transplants.

Survival Rates -Survival rates indicate the percentage of patients or grafts (transplanted organs) that are still alive/functioning at a certain point post transplant. Survival rates are often given at one-, three-, and five-year increments. Policy modifications are never made without examining their impact on transplant survival rates. Survival rates improve with technological and scientific advancements. Developing policies that reflect and respond to these advances in transplant will also improve survival rates.

Tendon -Fibrous tissue that connects a muscle with a bone.

Thoracic -Term that refers to organs located above the diaphragm in the chest cavity: heart and lungs.

Tissue -Group of cells that together perform a function (example: skin, muscle).

Tissue Bank -A facility that processes and distributes donated tissues suitable for surgical use by physicians, dentists and hospitals.

Tissue Donation -Recovery of donated tissues from a deceased donor for use in transplant.

Tissue Typing -The process of identifying a person’ s individual genetic type. Some organs, the kidney in particular, are matched for genetic type. The more genetically similar the transplanted organ is to the recipient, the lower the risk of rejection of that organ by the body’ s immune system.

Transplant -Surgical placement of an organ or tissue from a donor into a recipient.

Transplant Center -A hospital or center that performs organ transplants.

Transplant Coordinator -A registered nurse or other qualified medical professional that works with potential recipients preparing them for transplant, and follows their course after transplant.

Transplant, Autologous -Transplant of an organism’ s own cell or tissues. Autologous transplant may be used to repair or replace damaged tissue, for example. Autologous bone marrow transplant permits the usage of more severe and toxic cancer therapies by replacing bone marrow damaged by the treatment with marrow that was removed and stored prior to treatment.

Trauma -A wound or injury, physical or emotional, minor or severe. Uniform Anatomical Gift Act (UAGA) -Legislation that provides guidelines for the voluntary donation of organs and tissues. This law outlines authorization for making this gift, the manner in which it may be done, and prohibits the sale of organs and tissues.

Uniform Determination of Death Act -Legislation that provides guidelines for the diagnosis of death in which death is caused by irreversible loss of all function of the brain or brain stem.

Uniform Donor Card -A universal card used to designate one’ s desire to be an organ and/or tissue donor after death.

United Network for Organ Sharing (UNOS) -The agency that operates the national Organ Procurement and Transplant Network. This network is mandated by law and includes all transplant centers, all OPOs, and all tissue typing laboratories in the U.S. Membership by these organizations is required. UNOS members set policy for organ procurement and transplant, and monitor the national system for equitable sharing of organs.

U.S. Scientific Registry of Transplant Recipients (SRTR) -A database of post transplant information. Follow-up data on every transplant are used to track transplant center performance, transplant success rates and medical issues impacting transplant recipients. UNOS facilitates the collection; tracking and reporting of transplant recipient and donor data.

UW Solution -Also know as Belzer’ s solution or Viaspan. Used for the preservation of abdominal organs.

Vasopressors -Stimulating the contraction of blood vessels and therefore bringing about an increase in blood pressure.

Ventricular Septal Defect -A defect at birth in the septal wall separating the right and left ventricles.

Viable -The ability to live, grow and develop.

Waiting List -A common term referring to the national database maintained by UNOS of individuals awaiting a transplant. The list is this country’ s system for registering individuals in need of an organ transplant.

Waiting Time -Time a recipient has been waiting for transplant, as noted by the day he/she was placed on the list at UNOS.

Warm Ischemia Time (WIT) -The length of time from when the heart stops beating to when the blood is flushed out of the organs and stored in preservation solution.