Transplant Living: Organ Donation and Transplantation Information for Patients


Organ Facts Heart Lung Heart/Lung Kidney Pancreas Kidney/Pancreas Liver Intestine Diseases Polycystic kidneys Diabetes mellitus COPD Idiopathic pulmonary fibrosis Cystic fibrosis Hypertension Coronary heart disease Cardiomyopathy Short gut syndrome Cirrhosis Hepatitis Living with Devices Artificial Hearts LVADS ICDs Pacemakers Hemodialysis Peritoneal Dialysis Liver Support Systems About Organ Allocation Matching Organs Waiting for an Organ Policies Getting on the List The National Waiting List People You Should Know Questions to Ask Selecting a Hospital Which Hospital Is Best For You? Other Options to Consider Financing a Transplant The Costs Social Services Funding Sources Care Following a Transplant Financial Resources Directory Financial Q & A Preparing for a Transplant Waiting for Your Transplant Emotional Aspects of Waiting Q & A		Q & A Transplantation What is transplantation? Which organs can be transplanted? What policies apply to the transplant I need? How do I learn about potential new policies? Are there organizations who can help patients afford the cost of transplantation? What questions should I ask about the cost of transplantation? Does UNOS handle cord blood or stem cell transplants? Do transplant hospitals in the U.S. only perform transplants on U.S. citizens? Matching and Allocation What factors are considered in organ matching and allocation? How does the matching process work? How do I get on the waiting list? What is the criteria to be listed? How do I know that I am listed? Can I list at more than one hospital? How long will I have to wait? How will they find the right donor for me? How are organs distributed? Donation How does whole body donation differ from organ donation? How can I get more information? What is involved in becoming a living donor? Are there resources that describe the process? How does someone get on the waiting list? Are there age limits or diseases that rule out organ donation? How do I express my wishes to become an organ and tissue donor? Why should minorities be concerned about organ donation? How can I help increase organ donation? How can I receive more information about organ donation and transplantation? How can I receive data on organ donation and transplantation? Transplantation What is transplantation? Transplantation is the act of surgically removing an organ from one person and placing it into another person. Transplantation occurs because the recipient's organ has failed or has been damaged through illness or injury. Which organs can be transplanted? The organs that can be transplanted are: liver kidney pancreas kidney/pancreas (can be transplanted at the same time) heart lung heart/lung (can be transplanted at the same time) intestine What policies apply to the transplant I need? How do I learn about potential new policies? All policies and bylaws governing the Organ Procurement and Transplantation Network are developed by the OPTN and considered for final approval by the U.S. Department of Health and Human Services (HHS) under federal regulation governing the OPTN. As new policy proposals are developed by the OPTN for consideration, they will be circulated for public comment. Visit UNOS' Public Comment section to view and respond to such proposals. As part of HHS' consideration of policy proposals advanced by the OPTN, additional public comment may be sought through the Federal Register or other means; this site will also give notice of those actions. Are there organizations who can help patients afford the cost of transplantation? Some transplant candidates and recipients have difficulty affording the cost of a transplant or related expenses such as travel and lodging. There are a number of local, regional and national organizations who provide some assistance through grants or services. In individual cases, local community organizations or faith groups may be able to help, and friends and families may solicit funds through public events or appeals. What questions should I ask about the cost of transplantation? What part of the transplant cost is covered by my insurance? What financial coverage is accepted by the hospital? How much will I have to pay? What happens if my financial coverage runs out? Who are the members of the transplant team and what are their jobs? How many attending surgeons are available to do my type of transplant? Who will tell me about the transplant process? Is there a special nursing unit for transplant patients? Can I tour the transplant center? Will I be asked to take part in research studies? Does the hospital do living donor transplants? Is a living donor transplant a choice in my case? If so, where will the living donor evaluation be done? What is the organ recovery cost if I have a living donor? Does UNOS handle cord blood or stem cell transplants? We are involved with the transplantation of vascularized or "solid" organs and are not directly involved with stem cell or cord blood transplants. However, these resources may help you obtain further information on these procedures: National Marrow Donor Program info@marrow.org www.marrow.org American Association of Blood Banks (301) 907-6977 aabb@aabb.org www.aabb.org Fred Hutchinson Cancer Research Center (FHCRC) www.fhcrc.org Blood & Marrow Transplant www.bmtnews.org Do transplant hospitals in the U.S. only perform transplants on U.S. citizens? No. Patients from other countries may travel here to receive transplants. Once accepted by a UNOS transplant center, international patients receive organs based on the same policies as U.S. citizens. Matching and Allocation What factors are considered in organ matching and allocation? Many different medical and logistical characteristics are considered for an organ to be distributed to the best-matched potential recipient. While the specific criteria differ for various organs, matching criteria generally include: blood type and size of the organ(s) needed time spent awaiting a transplant the relative distance between donor and recipient For certain organs other factors are vital, including: the medical urgency of the recipient the degree of immune-system match between donor and recipient whether the recipient is a child or an adult For more information, see the Organ Procurement and Transplantation Network article on the Donor Matching System. How does the matching process work? The matching process contains five steps: An organ is donated. When the organ becomes available, the OPO managing the donor sends information to UNOS. The OPO procurement team reports medical and genetic information, including organ size, and condition, blood type and tissue type. UNOS generates a list of potential recipients. The UNOS computer generates a list of potential transplant candidates who have medical and biologic profiles compatible with the donor. The computer ranks candidates by this biologic information, as well as clinical characteristics and time spent on the waiting list. The transplant center is notified of an available organ. Organ placement specialists at the OPO or the UNOS Organ Center contact the centers whose patients appear on the local list. The transplant team considers the organ for the patient. When the team is offered an organ, it bases its acceptance or refusal of the organ upon established medical criteria, organ condition, candidate condition, staff and patient availability and organ transportation. By policy, the transplant team has only one hour to make its decision. The organ is accepted or declined. If the organ is not accepted, the OPO continues to offer it for patients at other centers until it is placed. To understand how patients are matched on the national waiting list, it's helpful to think of the list as a "pool" of patients. Each time an organ becomes available, UNet^sm searches the entire "pool" for the patients who are a match for the organ. A new list is made from those who match. The patients on this new list are ranked in order of their level of match to that donor organ. The organ is offered to the transplant hospital where the first patient is listed. Other factors which may be considered are the patient's current medical status, geographical location, and time on the list. If the organ is refused for any reason, the transplant hospital of the next patient on the list is contacted. This process continues until a match is made. How do I get on the waiting list? To get on the national waiting list, you should follow these steps: Receive a referral from your physician. Contact a transplant hospital. Learn as much as possible about the 200+ transplant hospitals in the United States and choose one based on your needs, including insurance, location, finances and support group availability. Schedule an appointment for evaluation to determine if you are a good candidate for transplant. During the evaluation, ask questions to learn as much as possible about that hospital and its transplant team. The hospital's transplant team will decide whether you are a good transplant candidate. Each hospital has their own criteria for accepting candidates for transplant. If the hospital's transplant team determines that you are a good transplant candidate, they will add you to the national waiting list. What is the criteria to be listed? Each hospital has their own criteria for listing patients. However, UNOS has developed listing guidelines for some organ types. How do I know that I am listed? UNOS does not send patients written confirmation of their placement on the waiting list. Instead, patients should find out if they have been placed on the national waiting list through their transplant hospital. If you have questions about your status on the list, you should ask the team at your transplant hospital. Can I list at more than one hospital? Yes. UNOS policies permit "multiple listing." However, each hospital has its own criteria for listing patients and may have different rules about patients listing at other hospitals. How long will I have to wait? There is no set amount of time, and there is no way to know how long, a patient must wait to receive a donor organ. Factors that affect waiting times are patient medical status, the availability of donors in the local area and the level of match between the donor and recipient. How will they find the right donor for me? When a transplant hospital adds you to the waiting list, it is placed in a pool of names. When an organ donor becomes available, all the patients in the pool are compared to that donor. Factors such as medical urgency, time spent on the waiting list, organ size, blood type and genetic makeup are considered. The organ is offered first to the candidate that is the best match. How are organs distributed? The organs are distributed locally first, and if no match is found they are then offered regionally, and then nationally, until a recipient is found. Every attempt is made to place donor organs. Donation How does whole body donation differ from organ donation? How can I get more information? Whole body donation for research is handled differently from organ and/or tissue donation for transplantation. Often such arrangements are made through individual medical schools. There are a number of Internet resources that describe whole body donation, including the University of Florida's site on Body Donation Programs in the United States. What is involved in becoming a living donor? Are there resources that describe the process? Living donation is arranged through individual transplant centers according to protocols they have set. Another resource for living donors or those considering living donation is the National Kidney Foundation's National Donor Family Council. Approximately 500 members of the National Donor Family Council and TransAction Council are living donors. Currently, they are working to develop special programs, resources, and features designed to meet the specific needs of living donors and their families. For more information, contact: National Kidney Foundation's National Donor Council (800) 622-9010 (212) 889-2210 donorfamily@kidney.org www.kidney.org/recips/donor How does someone get on the waiting list? The only way for a patient to get on the national waiting list is to visit a transplant hospital. A physician will make an evaluation (based on medical history, current condition of health, and other factors) and decide if the patient meets the criteria to be listed. Are there age limits or diseases that rule out organ donation? For any death where organ donation is a possibility and consent is given, there will be a medical assessment of what organs can be recovered. There are no absolute age limits to organ donation. A handful of medical conditions will rule out organ donation, such as HIV-positive status, actively spreading cancer (except for primary brain tumors that have not spread beyond the brain stem), or certain severe, current infections. However, for most other diseases or chronic medical conditions, organ donation remains possible. Unfortunately, many people never indicate their wish to donate because they believe, falsely, that their age or medical condition would not allow them to donate. If you want to save and enhance lives through donation, the most important action you can take is to share your donation decision; if donation is not medically feasible, that determination will be made at the time of death. How do I express my wishes to become an organ and tissue donor? First, indicate your intent to be an organ and tissue donor on your driver's license. Also carry an organ donor card. Most importantly, discuss your decision to donate with your family and loved ones. Why should minorities be concerned about organ donation? Some diseases of the kidney, heart, lung, pancreas, and liver are found more frequently in racial and ethnic minority populations than in the general population. For example, African Americans, Asian and Pacific Islanders, and Hispanics are three times more likely to suffer from end-stage renal disease than Caucasians. Native Americans are four times more likely than Caucasians to suffer from diabetes. Some of these diseases are best treated through transplantation; others can only be treated through transplantation. Successful transplantation often is enhanced by the matching of organs between members of the same ethnic and racial group. For example, any patient is less likely to reject a kidney if it is donated by an individual who is genetically similar. Generally, people are genetically more similar to people of their own ethnicity or race than to people of other races. Therefore, a shortage of organs donated by minorities can contribute to death and longer waiting periods for transplants for minorities. How can I help increase organ donation? There are many ways you can help: Become a donor, and talk to your family about your decision to share LIFE. Promote donation at work, in your community, at your place of worship, and in your civic organizations Make a financial contribution to support UNOS' efforts to raise awareness. For more information about how you can help, visit: Donate Life America U.S. Department of Health and Human Services Web site for Organ Donation How can I receive more information about organ donation and transplantation? Contact the UNOS patient services line and request an organ-specific information kit: (888) 894-6361 (804) 782-4800 How can I receive data on organ donation and transplantation? UNOS collects and manages all data that pertain to the patient waiting list, organ donation and matching, and transplantation occurring on the OPTN, the nation's organ transplant network. Learn more about creating data reports online now		UNOS maintains the national transplant waiting list. Visit www.unos.org to find out who UNOS is, what we do, and what services we can offer you. Every 13 minutes a name is added to the national transplant waiting list.