LifeLink®
questions & answers About Organ & Tissue Donation and Transplantation
®
More than 33,000 transplants were performed in 2016 in the United States. Unfortunately, the number of organs donated for transplant cannot help all of the many thousands of individuals currently waiting for a life-saving organ transplant. Hundreds of thousands of others await tissue transplants to increase their quality of life.
One donor might save or improve the lives of 75 people
— eight through organ donation
and dozens more through tissue donation. By signing up to become an organ donor, you can give others a second chance at life.
LifeLinkÂŽ has compiled the answers to most commonly asked questions about donation and transplantation, and we are available to discuss these or other questions. Please visit www.LifeLinkFoundation.org for contact information.
You can register today as an organ and tissue donor at www.LifeLinkFoundation.org.
Say YES, save lives!
Cover photo: Evan Ranieri, Kidney Recipient
Contents Why should I consider organ & tissue donation? ....................................................................... 2 Does donation have an age limit? Can I become a donor while I’m still alive?............... 2 What is “directed donation”?............................................................................................................... 3 Is there a registry of designated organ & tissue donors? ....................................................... 3 What if I change my mind about donation?.................................................................................. 3 Can I donate if I have a medical condition?...................................................................................4 I have HIV, how can I be a donor?.....................................................................................................4 Will the recipient and/or the recipient’s family know who donated their organs?........4 What organs and tissues can be donated?.................................................................................... 5 What steps are involved in donation and transplantation?..................................................... 7 How would I become a donor candidate?......................................................................................9 What is brain death?...............................................................................................................................9 How are recipients and donor organs matched?....................................................................... 10 Would my family have to pay for the cost of donation?........................................................ 10 What if my family is opposed to donation? .................................................................................11 What are the religious views on donation? ...................................................................................11 Can rich or famous people get a life-saving organ transplant quicker than others?.............................................................................................11 Does donation delay funeral services?............................................................................................12 Will donation disfigure the body?.....................................................................................................13 Can you sell organs?...............................................................................................................................13 Are there any unique aspects of donation for minorities?.....................................................13 How many organ recovery organizations and transplant programs are there in the U.S., and what is the difference between the two?...................................13 Does organ transplantation really work?...................................................................................... 14 How many transplants have been performed recently? .........................................................15
Once you have learned the facts about organ and tissue donation, consider registering your decision to become a donor by visiting www.LifeLinkFoundation.org and click on
! Tell your family and friends your decision so they will be
prepared to help carry out your wishes if they are ever faced with that opportunity, and also so they can consider donor registration for themselves.
Why should I consider organ & tissue donation? The biggest obstacle facing the many thousands of patients in the United States waiting for a life-saving transplant is a lack of available organs. Every 10 minutes, another name is added to the national waiting list for an organ transplant. And every day, 22 people die while waiting. The good news: Everyone can consider themselves a potential donor, donation places no financial burden on the donor’s family or estate, and all major religions support donation as a personal decision and generous gift. Donation takes place after death, with the exception of living donation between two individuals of a kidney, most often, or more rarely a portion of a liver or lung.
Does donation have an age limit? There is no age limit for organ donation. Everyone who wishes to donate should register their decision, regardless of age or medical history. Organ procurement organizations evaluate for medical suitability at the time donation is considered. In the case of individuals under the age of 18, authorization from a parent or legal guardian is required prior to donation taking place.
Can I become a donor while I’m still alive? Certain kinds of transplants can be performed thanks to living donors, such as kidney transplants. It is also possible to donate a portion of the liver, lung or pancreas. Most often, these transplants take place between family members, but friends or even anonymous strangers, can become living donors. Age, function of the organ to be donated, health status and medical history are just a few of the factors considered when evaluating potential living organ donors. For more information about living donation, contact your local transplant center. 2
Blood and marrow can also be donated while you are still alive. Organ recovery organizations are not involved in these kinds of donations, and for more information you may contact your local blood bank or marrow donation program.
What is “directed donation?” If a donor’s family knows someone who is waiting for a transplant, it is possible to request their loved one’s organs go to that person. Typically, a directed donation goes to a family member or friend, and can only occur when the organ is determined to be a good match for that patient and that patient is already on the waiting list to receive an organ transplant. Directed donation is not common and cannot be carried out if the donation discriminates on the basis of race, national origin, religion, gender or similar characteristic.
Is there a registry of designated organ and tissue donors? Every state has a donor registry, and most, including Florida, Georgia and Puerto Rico, have an online portal where individuals can sign up as organ donors. Many registries are also tied to the driver license agencies, and when you receive or renew your license, you will be asked about becoming a donor. To register as a donor today, visit www.LifeLinkFoundation.org and click on ! Recently a national registry, accessible through www.RegisterMe.org, was launched. You may register your decision to donate through the national registry, but please also consider registering on your state registry. In Florida, Georgia and Puerto Rico the state registry is authorized by and referenced in legislation, making it the preferred registration avenue for recovery organizations in those areas. At the time of someone’s death, state registries are checked to determine if that person wanted to be a donor, and the national registry may be checked as well.
What if I change my mind about donation? If you change your mind about donation, you can remove your name at any time from the organ and tissue donor registry. *Important note: If you register on both your state registry and the national registry, and later wish to remove your registration, you must remove yourself on each registry you joined. Registries are not connected to one another, and removal from your state registry does not take you off the national registry, and vice versa. 3
Can I donate if I have a medical condition? Everyone who wishes to donate should register their decision, regardless of medical history or age. Organ recovery organizations evaluate for medical suitability at the time donation is considered.
I am living with HIV, can I be a donor? The HIV Organ Policy Equity Act (HOPE Act), effective in 2016, allows for the transplantation of organs from donors who have been living with HIV into patients awaiting transplantation who also are living with HIV. Prior to the HOPE Act, recovering organs from an individual known to have HIV was against the law. Thanks to the HOPE Act, potentially 1000 additional lives can be saved each year with organ transplantation.
Will the recipient and/or recipients know who donated their organs and tissue? Only general, non-identifiable information about the donor or recipients is released initially. More personal information about either party can only be released with authorization from the donor’s family, in the case of the donor, or the recipient themselves. The organ recovery organization facilitates this process.
Re’Ana Hall, Heart Recipient
4
What
organs and tissues
can be donated?
The first corneal transplant was performed in 1905 and the first kidney transplant in 1954. Since that time, medical advances have made it possible to donate and transplant the following organs: Heart
The heart pumps blood through the body. A heart transplant can be used to help those suffering from heart failure, as well as babies born with heart defects.
Liver
The liver secretes bile and is active in the formation of certain blood proteins and in the metabolism of carbohydrates, fats, and proteins. Liver transplants may be used to treat various conditions which cause liver failure, such as cirrhosis or liver cancer.
Kidneys
Kidneys maintain proper fluid balance, regulate acid-base concentration and filter the blood of metabolic waste, which is expelled as urine. The kidneys are the most commonly transplanted organ. A kidney transplant may be recommended for those who have been diagnosed with kidney failure as a result of conditions like diabetes, hypertension or polycystic kidney disease.
Lungs
Lungs remove carbon dioxide from the blood and provide blood with oxygen. Lung transplants may be necessary for those with severe lung disease, such as cystic fibrosis, COPD (chronic obstructive pulmonary disease) and emphysema.
Pancreas
The pancreas aids in the digestion of proteins, carbohydrates and fats. Pancreas transplants typically are performed for those with insulindependent Type I diabetes.
Intestines Patients, most often children, require intestine transplants if they have been diagnosed with life-threatening intestinal diseases such as short-gut syndrome. 5
There are many options for tissue donation, including: Cornea
The outer transparent lens covering the iris and pupils on the outside of the eye. Corneal transplants are a common procedure used to restore vision for those with eye diseases and corneal infections.
Skin
Skin protects the body from infection and injury. Skin transplants, referred to as skin grafts, are used to treat severe burns or wounds.
Heart Valves Heart valves prevent the back flow of blood into the heart. Heart valve transplants are used to treat malfunctioning heart valves caused by infections, birth defects and aging. Tendons
Tendons attach muscles to bones. Tendon transplants are recommended for patients who have lost muscle function due to nerve injury or damage to tendons.
Bones
Bones can be used to replace or reconstruct tissue destroyed by trauma or other conditions, such as cancer. Bones are often used in spinal surgeries to improve or restore mobility and health.
Veins
Donated veins are used to repair or restore damaged or diseased veins.
Cartilage
Cartilage can be used in a variety of surgeries to restore mobility, movement and health.
This is how one organ and tissue donor can help as many as 75 people! If you sign up as an organ and tissue donor, state registries allow you to specify what you would like to donate. Often, registrants also have the option to donate organs and tissue which cannot be transplanted to be used for medical research and to improve medical care for future patients. Total body donation, which assists medical students and researchers in their study to save and improve lives, is also possible. Online state registries provide the opportunity to indicate your desire regarding total body donation. In Puerto Rico, the Anatomical Board should be contacted regarding total body donation. 6
organ donation & transplantation?
What steps are involved in
Organ donation requires that the potential donor be in a hospital and is an option only after all lifesaving measures have been exhausted, medical professionals recognize a patient’s injuries are unrecoverable and death has occurred. As required by federal law, a hospital staff member identifies a potential organ donor and contacts the organ recovery organization, which is independent of the hospital.
The organ recovery organization evaluates the possibility of donation and checks the state donor registry to determine if the potential donor had registered a donation decision.
The donor’s family meets with the organ recovery organization to confirm donation plans, or if the potential donor was not registered, the family makes a decision on donation for their loved one.
A complete medical and social history is discussed with the family to ensure donation is possible and safe for potential organ recipients.
The search for transplant recipients begins.
Donor organs are surgically removed.
Medical professionals transport donor organs to appropriate transplant centers. If tissue donation is also an option, tissue recovery occurs after organ recovery is completed. 7
From the time an organ donor is identified to the time transplant recipients receive donated organs is a matter of hours or days. Organs are matched with recipients based on a number of factors, such as severity of illness and time on the waiting list. In order for a transplant to occur, blood type, tissue type, weight and additional factors must be considered. More information about matching can be found on page 10.
Steps involved in tissue donation Tissue donation also occurs after death, and does not require the potential donor to have passed away in a hospital setting, or to meet brain death criteria. A potential donor is identified and the recovery organization checks donor registries to determine if that individual had registered a donation decision.
The recovery organization talks with the family to confirm donation plans, or in the event the potential donor had not registered their decision, the family makes a donation decision.
A complete medical and social history is done to ensure donation is possible and safe for potential transplant recipients.
Donor tissues are surgically removed.
The family proceeds with burial plans as they choose.
Tissue undergoes cultures and screening tests to ensure suitability for transplant.
Tissues are processed and transported. Tissues (allografts) are transplanted. 8
In contrast to the short timeframe from the identification of an organ donor to the time of organ transplantation, recovered tissue is generally not ready to be transplanted for a period of weeks or months. This is for multiple reasons, but chief among those is a very rigorous testing requirement to ensure the safety of transplant patients. Most patients awaiting organ transplants are in organ failure, and receiving an organ as soon as possible is imperative. Tissue transplantation, however, is usually not as urgent, allowing additional time to ensure the safety of allografts for patients. Organ transplantation has been performed for years—the first kidney transplant took place in 1954 and successful transplantation of lungs, pancreas, liver, heart and small intestines followed in later decades. Today, the number of people living with organ transplants is well into the millions.
How would I become a donor candidate? State registries are the best first step in becoming a potential donor. A donation decision can also be documented when receiving a driver permit or license. To register today as a donor, visit www.LifeLinkFoundation.org and click on . Organ donation usually occurs when a potential donor has had an accident or medical event, and have been diagnosed in the hospital as brain dead. Tissue donation is not dependent upon brain death.
What is brain death? Death occurs in two ways: 1) most commonly, heart/lung function stops and this is known as cardiopulmonary death 2) In other instances, brain function stops and brain death occurs. Brain death can occur when someone has an 9
irreversible, catastrophic brain injury that causes all brain activity to stop permanently and that individual is being treated in a hospital and has been placed on mechanical support prior to brain death. The mechanical support allows the heart and lungs to function as long as the machine performs, which allows organs to remain healthy for transplant. Brain death is an accepted medical, legal and ethical principle. The standards for determining brain death are strict and clear. Organ recovery is never an option until an individual has died, and those responsible for organ and tissue donation are not staffs who have worked to save the patient’s life. Organ recovery personnel are contacted only after all lifesaving measures have been exhausted.
How are recipients and donor organs matched? People waiting for transplants are listed at the transplant center where they plan to have surgery. Under contract with the Health Resources and Services Administration, a national computerized list is maintained by the United Network for Organ Sharing (UNOS). UNOS operates the Organ Procurement and Transplantation Network and maintains a 24-hour service to help match donor organs with patients on the waiting list. General criteria for matching donated organs to waiting patients include blood type, body size, geographic proximity, the degree of the potential organ recipient’s illness and their time on the waiting list. Because timing is such a critical part of the organ recovery process, for organs which require short periods of time between recovery and transplantation, preference is generally given to recipients from the same geographic area as the donor. ■■ Kidneys, the pancreas and small intestines can be transplanted up to 48-72 hours after being recovered from a donor. ■■ A liver should be transplanted within 12 hours after being recovered. ■■ The heart and lungs should be transplanted within 4-6 hours after being recovered. ■■ Tissue recovery can occur up to 24 hours after death and, due to unique preservation techniques, can be transplanted weeks or months after recovery.
Would my family have to pay for the cost of donation? Donation places no financial burden on the donor’s family or estate. Costs of donation are the responsibility of the organ and tissue recovery organization. The family or estate is responsible for hospital care prior to the declaration of death, as well as funeral, cremation or burial costs. 10
What if my family is opposed to donation? In most states, including Florida, Georgia and Puerto Rico, once you join your state donor registry, your decision is legally binding and should be honored unless there is a medical reason it cannot be. At the time when donation is possible, family members will be informed of your documented decision to donate and walked through the process, so they will know and understand how LifeLink will carry out your decision to be a donor. In the event of a loved one’s death, it may ease the family’s pain to already know your donation decision. For this reason, LifeLink recommends you tell your family about your decision to register as a donor.
What are the religious views on donation? All major religions in the United States approve of and support the principles and practices of organ and tissue donation. Transplantation is consistent with the life-preserving traditions of these faiths. If you have any doubts, you should discuss them with your faith leader.
Can rich or famous people get a lifesaving organ transplant quicker than others? No, the rich and famous are not transplanted faster than others. The national transplant waiting list, run by the United Network for Organ Sharing, ensures the fair and equitable distribution of transplantable organs based on many factors, including the degree of illness, wait time, height,
weight and blood type of the potential transplant patient. Factors such as fame or fortune don’t play a role in the transplant waiting list.
If I register to become a donor and am in an accident, will emergency or hospital staff allow me to die in order to facilitate donation? No. Emergency response and hospital staff do not have access to state donor registries to confirm donation registration, only organ and tissue recovery organizations can do that. Emergency response and hospital staff will work very hard to save the life of every patient, and donation is an option only after every lifesaving measure has been exhausted, and the potential donor has passed away.
Does donation delay funeral services? The process of donation typically causes no delay in funeral services. 12
Will donation disfigure the body? The recovery of organs and tissue is performed by qualified surgeons and recovery staff in a sterile environment. As in any other surgical procedure, the body is treated with the utmost respect and care.
Can you sell organs? No, the National Organ Transplant Act (Public Law 98-507) prohibits the sale of human organs. Violators are subject to fines and imprisonment. Strict regulation ensures the fairness of the waiting list and eliminates the possibility of wealthy individuals having an unfair advantage. It also creates a barrier to any type of “black market,� as organs are appropriately matched to recipients according to national policy.
Are there any unique aspects of donation for minorities? More than half the people on the national waiting list have multicultural backgrounds. This is because many diseases which ultimately cause organ failure are found more commonly in minority populations. While it is possible for people of different racial and ethnic groups to donate to one another, members of different racial and ethnic groups are usually more genetically similar to others with the same racial or ethnic background. For example, African Americans are typically more genetically similar to other African Americans than to Caucasians. This is why it’s so important for more minorities to designate themselves as donors.
How many organ recovery areas and transplant centers are there in the United States? What is the difference between the two? There are 58 federally designated organ recovery areas in the United States, which are served by organ recovery organizations, often referred to as organ procurement organizations (OPOs), that coordinate donation activities within their own federally designated service areas. Their staff evaluates potential donors, accesses donor registries to determine if a potential donor had registered their decision to donate, discusses donation with family members and arranges for the surgical donation process. OPOs also work with transplant centers to place organs with patients awaiting transplantation, and help preserve organ function after recovery to provide the potential recipient with the best chance of a positive outcome possible. Also, OPOs provide education to medical professionals and the general public about organ and tissue donation, and encourage organ and tissue donor registration. 13
There are approximately 250 transplant centers in the United States, however not all transplant centers transplant all organs. Transplant centers are departments within hospitals who work with people on the waiting list for a lifesaving organ transplant. Transplant center physicians and staff manage their patients’ health care while they wait for donor organs, perform transplant surgeries and provide follow-up care after patients receive an organ transplant.
Does
organ transplant really work?
In 2016, more than 33,000 men, women and children received the gift of a lifesaving organ transplant. Most returned to normal, active lives, and enjoyed a second chance to make memories and celebrate milestones with family and friends. Many transplant recipients work, raise families and positively impact their community thanks to the gift of life. Transplant success is often measured in survival rates, which indicates the percentage of patients who survive one, three, or more years post organ transplant. As of 2015, one year survival rates are: ■■
Kidney: 98.8%
■■
Liver: 90.6%
■■
Heart: 91.7%
■■
Lung: 86.3%
■■
Simultaneous Kidney/Pancreas: 98.2%
■■
Pancreas: 94.3%
■■
Small Intestine: 95.0%
■■
Simultaneous Heart/Lung: 87.5%
More information on patient survival rates after transplant can be found in data reports by visiting www.UNOS.org. Rejection of a transplanted organ by the recipient’s immune system is the greatest threat to transplantation. In order to prevent the recipient’s immune system from destroying the
donor organ, physicians prescribe immunosuppressive (also known as “anti-rejection”) medications, which transplant recipients typically will take for the rest of their lives. Each recipient’s dosages will vary and it is possible that the amount and types of medicine will change over time. Recipients also undergo routine laboratory tests to ensure their immune system does not produce antibodies which can attack their transplanted organ, or to identify antibodies that have been produced and stop the rejection process as quickly as possible.
How many transplants have been performed recently? In 2016, more than 33,000 transplants were performed: ■■ 19,060 kidney ■■ 7,841 liver ■■ 3,191 heart ■■ 2,327 lung ■■ 798 simultaneous kidney/pancreas ■■ 215 pancreas ■■ 147 small intestine ■■ 18 simultaneous heart/lung* *US Transplant Scientific Registry of Transplant Recipients, www.ustransplant.org
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A number of websites offer
additional information
about donation and transplantation: www.LifeLinkFoundation.org www.UNOS.org www.AOPO.org www.AATB.org www.DonateLifeFlorida.org www.DonateLifeGeorgia.org www.DonateLifePuertoRico.org
Thank you for taking this opportunity to learn about the gift of life. ®
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De’Jael Grant, Heart Recipient
®
www.LifeLinkFoundation.org
Florida 800-262-5775
Georgia Atlanta / Augusta – 800-544-6667 Savannah – 800-365-2066
Puerto Rico 800-558-0977
Save Lives, Say Yes!