Questions & Answers about Kidney Transplantation Developed by Mid-Atlantic Renal Coalition (ESRD Network 5)
Table of Contents Questions Patients Might Ask about Kidney Transplant 2 How long before I get on the transplant list? 2 How do I know if my family members are eligible to donate? 2 How much will a transplant cost? Will my insurance pay? 2 Will I lose my disability benefits? 3 How do I choose a transplant center and a transplant surgeon? 4 Will receiving a transplant make my life better? 4 How long do I have to wait to receive transplant? 5 How can I be sure I will get the right kidney for me? 5 What kind of outcomes can I expect after transplant? 5 Can I catch a serious disease like AIDS if I get a kidney transplant? 8 Once transplant takes place will I have a lot of pain? 8 Patient Education Resources 8 Questions Asked about Living Donor Kidney Transplants 9 Definitions for types of donation and decision factors for selection 9 Who can donate a kidney? 9 What happens during the evaluation? 10 Is there risk with living donation? 10 How is surgery performed? 10 What follow up care will I need? 11 Will donor costs be covered by insurance? 11 What if there is a problem with compatibility? 11 Decision questions in becoming a organ donor 12 Once the transplant is scheduled, will it definitely happen? 12 Questions Dialysis Facility Management Might Ask about Kidney Transplant 13 Do patients have the information they need to make a decision? 13 Which patients are candidates for transplant referral? 13 Questions Dialysis Facility Staff Members Might Ask about Kidney Transplant 15 Does the patient s family understand what the patient wants and needs? 15 How are deceased donors chosen? What is brain death? 15 Who can sign a Uniform Donor Card? Can the donor or family change their minds? 15 Is the donor screened for infectious diseases? 16 What are tissue typing, PRA, and crossmatching? 16 How soon must the donated kidney be transplanted? 16 Who pays for the removal of the donated organs? 16 Will the recipient ever know who donated the organ? 17 Do transplant patients have rejection symptoms? 17 Questions Physicians Might Ask about Kidney Transplant 18 Where can I find transplant center specific outcome data? 18 What steps have been initiated to make more transplantable organs available? 18 What is a referring physician s role in care of the patient post transplantation? 20 Outreach Programs for African Americans to reduce transplant wait time 20 Page 1 of 21
Questions Patients Might Ask about Kidney Transplant How long before I can get on the transplant list? An extensive medical evaluation is done to determine whether you are an acceptable candidate for surgery and for transplant. There may be certain medical conditions or other reasons why kidney transplantation may not be right for you. Transplant Centers may differ in what they require for referral. Regulations for transplant programs require written selection criteria to be developed, and provided upon request, to patients and dialysis facilities. How do I know if my family members are eligible to donate? Laboratory tests will be done to insure that the donor (person providing the kidney) and recipient (person with kidney failure and receiving the kidney) are medically compatible (good match). If compatible, family members, distant relatives, spouses, friends, or even strangers can donate a kidney to you. You can receive a living related transplant (a kidney donated by a family member other than a spouse) or a living unrelated transplant (a kidney donated by someone who is not a blood relative). Transplant centers look at many variables when evaluating a possible living donor. Living donors must be healthy, free of kidney disease, and have normal blood pressure. The best matches come from full siblings (brothers or sisters), but transplants from the poorest matched living donor are more successful than the best matched deceased (non living) donor. The transplant center will educate both the donor and the recipient about what to expect during this process. See more about living donor kidney transplant and non directed donor options in a separate section below. Advances in development of more effective drugs to prevent rejection as well as compatibility have resulted in more transplants and even better outcomes. Examples of areas evaluated by transplant centers and Organ Procurement Organizations (OPOs) are listed below. Blood Group A, B, O Compatibility determine the blood type of the donor and the recipient and make decisions about whether the donor can be used Crossmatch mix samples of donor s and recipient s blood together on a slide and view under a microscope to determine whether recipient s cells try to destroy the donor s cells. Donor and Recipient Preliminary Medical Assessment extensive review of donor s and recipient s existing and previous medical conditions to determine whether transplant surgery is possible Age, Renal Function, and Anatomy Acceptable? evaluate function, size, and structure of the donor kidney to determine whether transplant is possible Psychosocial Assessment assess mental and emotional stability of the prospective donor to determine his/her ability to donate an organ How much will a transplant cost? Will my insurance pay for my transplant and medications? It is impossible to provide a complete list of transplant costs for each transplant center in each Network. Patients need to be aware that transplant centers have financial counselors available to discuss and explore transplant costs so the patient knows exactly what costs are covered. Page 2 of 21
It is estimated that the first year cost of a kidney transplant to a Medicare eligible recipient in 2006 was around $106,000. 1 Generally, after standard deductibles, if a transplant is performed in a Medicare approved transplant center, Medicare Part A covers the following transplant services: 2 Inpatient services Kidney registration fee Laboratory and other test needed to evaluate your medical condition and the conditions of your potential kidney donors The full cost of care for your kidney donor hospitalization Medicare Part B helps pay (80%) for the following transplant services: Inpatient services Doctor s services for kidney transplant surgery Doctor services for your kidney donor during his or her hospital stay Immunosuppressive drugs (for a limited time after leaving the hospital following transplant) The full cost of care for your kidney donor Blood transfusions Patients are encouraged to have a primary and secondary insurance policy in place before initiating transplant work up (dialysis facility social workers may be able to assist patients in obtaining secondary or Medigap hospital insurance policies). Remember that you must think about the 20% cost of surgery and immunosuppressive medications if you elect to have only Medicare coverage and those costs add up quickly. Medicare prescription drug coverage (Part D) is unlikely to cover transplantation associated medications if Medicare A and B are primary payers. If the patient has a private primary insurance carrier, transplant benefits should be verified prior to evaluation, including information on deductibles and co payment requirements. The transplant center financial counselor or social worker will assist the patient in obtaining this information. It is necessary for every transplant recipient to take several different medicines to keep the body from rejecting or damaging the new kidney. Currently, Medicare covers immunosuppressive medications for three (3) years after kidney transplant for End Stage Renal Disease (ESRD) patients. In December 2000, Congress extended this coverage for the life of the transplanted kidney if the patient is eligible for Medicare due to age, or receives Social Security Disability Income (SSDI). The annual cost of immunosuppressive medications is estimated to be approximately $13,749. 3 Some pharmaceutical grant programs exist for a small number of indigent patients. The transplant center can help patients explore these options. Please be certain that you ask questions about these medications and their use when you see the transplant center staff. Will I lose my disability benefits? Some transplant patients are eligible for Supplemental Security Income (SSI) assistance and medication grants. If the patient is currently receiving disability benefits, the Social Security Office can advise him/her on how frequently his/her file will be reviewed after transplantation. If the patient s medical condition improves, and he/she is able to work, benefits may stop. Individuals are allowed to work for nine (9) trial months before his/her final status is Page 3 of 21
determined. The financial counselor at the transplant center can provide complete information about how the disability program works. How do I choose a transplant center and a transplant surgeon? Even prior to starting renal dialysis, once you and your nephrologists decide that a kidney transplant is right for you, you may choose your own center or you can ask your doctor for a referral to a transplant center. Kidney transplant centers vary from program to program across the country. Access the web site for Organ Procurement and Transplant Network (OPTN) at http://optn.transplant.hrsa.gov/; click on the members/members directory tabs for access to the name of every transplant center. Once you narrow your choices, schedule appointments with transplant center coordinators to get further information to meet your needs. Transplant coordinators can help you better understand the transplant experience and additional tests that you may need to become a transplantation candidate. If you are already on dialysis, dialysis facilities will often have a designated staff member, transplant liaison, or social worker to provide transplantation education, evaluation requirements, and transplantation center referral criteria. Once you decide on one or several transplant centers, the dialysis staff will notify the transplant center care teams to further guide you in making decisions that best provide for your needs. Factors to consider when choosing a transplant center and surgeon might include: What is the organ survival rate of the transplant center as compared to other centers? Because statistics can be hard to understand, and may not include all the information you need to consider, we recommend you discuss them with your doctor. o National statistics: http://www.ustransplant.org/csr/current/fastfacts.aspx What is the level of transplantation training and experience of surgeons and other health professionals at the center? What is the current waiting period for deceased donor organs? Does the transplant center education program prepare patients and family members for both pre and post transplantation needs and services? Are you given information on what is required financially? Are support services such as support groups, counseling, and social workers available? Will receiving a transplant make my life better? Transplant patients state that receiving a new kidney allows them to return to a more normal life, feel better, and be more active. They enjoy freedom from dialysis and have fewer dietary restrictions. Statistically, patients who receive kidney transplants have a longer life expectancy than patients receiving dialysis. United States Renal Data System (USRDS) survival probability rates from the 2010 USRDS Annual Data Report can be viewed at http://www.usrds.org. In 2006 (this data will soon to be updated for 2010) the number of kidney transplants performed in the United States surpassed 18,000. In 2003, the Organ Procurement and Transplantation Network (OPTN) implemented the Expanded Criteria Donor Program, which improved deceased kidney donation. In 2006, 20% of adult kidney transplant recipients received a kidney from an expanded criteria donor. The number of living donors overall has fallen in recent years, but the number of living unrelated Page 4 of 21
donors relative to the number of all living donors continues to increase. See USRDS table 117.15 below. 4 8 If I am found eligible for kidney transplant and I am added to the transplant list, how long do I have to wait to receive transplant? Laboratory tests are done to insure that the donor and recipient are a good match. These include blood type (A, B, O grouping), genetic testing of body cells for HLA typing (Human Leukocyte Antigen), and monthly Panel Reactive Antibody (PRA), a measurement that determines the percentage of donors with whom the recipient will have a positive crossmatch. Usually, the higher the PRA value, the more difficult it is to match blood for compatibility. When there is a living donor, surgery can be scheduled at a time convenient to the donor and recipient as soon as medical evaluation and testing are complete. Generally, the waiting time is much shorter with a living donor. The number of months spent on the wait list at every U.S. transplant center can be viewed on the Internet at http://www.ustransplant.org/. The number of donor organs available, the number of patients listed for transplant, and the results of the monthly PRA testing all affect wait time. How can I be sure I will get the right kidney for me? The recipient s blood is tested each month to help the physician evaluate any changes until a transplant occurs. The patient should be certain that the dialysis unit or physician s office draws these monthly blood samples, and sends them to the transplant center. When a deceased donor organ is available, it is offered to multiple patients who are listed in order for that kidney based upon multiple factors including the amount of time an individual has been waiting, the degree of matching, whether an individual has multiple antibodies (high PRA), and age (potential recipients less than 18 years old do receive additional points). A final compatibility test (crossmatch) is done prior to the transplant using the monthly serum sample to determine who will receive the organ. This occurs after you have been notified about the possibility of a transplant and are traveling to the hospital. It is therefore not unusual for someone to come to the transplant center prepared to have a transplant but have the surgery cancelled at the last minute due to an unacceptable crossmatch. If the laboratory does not have a current sample, you might not be selected. If the crossmatch is acceptable, then the transplant can take place, provided that the size of the donor organ, the storage time, and the recipient s health on that date are acceptable. What kind of outcomes can I expect after a transplant? The transplant center can provide outcome data on the performance of its program. Data on patient survival, graft (the kidney) survival, infection rates, and complication rates are public record and are available to the patient. The following tables are from the 2008 USRDS Annual Data Report (http://www.usrds.org/) for patients age 18 and older. 4 Page 5 of 21
Transplant Q & A II7.5 Observed and Projected Median M Waitt Times by Year Y of Listin ng (2003) Ovverall & by Race, R Blood Type & PRA A (panel reacctive antibod dy) Firrst time, kidn ney only tran nsplants agee 18 & older,, dashed linees show projjected time At conclu usion of yeaar 2006, therre were app proximately 46,000 4 activve candidatees on the waaiting list. II7.14 Transplant Rates R by Age, Gender, Race, R & Prim mary Diagno osis 91, the transsplant rate per p 100 dialyysis patient years has faallen 39 45% % for patients age Since 199 18 49. It has remaiined steady for those aged a 50 64 and has gro own 147% for f those 65 5 and above. Paage 6 of 21
II7.15 Transplant Rates by Donor Type At 1.6, the rate of transplants from all living donors is 17% greaterr than in 1991, but has been falling slightly since 2001. One (1) in five (5) deceased donor transplants in 2006 was from an expanded criteria donor. II7.23 Outcomes: Deceased Donor Transplants by Year of Transplant First time, kidney only transplants II7.24 Outcomes: Living Donor Transplants by Year of Transplant First time, kidney only transplants Page 7 of 21
Can I catch a serious disease like AIDS if I get a kidney transplant? Although risk of infection cannot be absolutely eliminated, the risk of this is very low. The transplant center and Organ Procurement Organization (OPO) will conduct multiple tests to prevent disease transmission from the donor during transplantation. All donors, both deceased and living, are tested for infectious diseases including HIV, Hepatitis B and C, and Cytomegalovirus (CMV). Additional tests are conducted to determine the status of other diseases, which could present a problem for the immunosuppressed patient after transplant. Once transplant takes place, will I have a lot of pain? How long will I be in the hospital? Most patients recover from kidney transplant surgery rapidly and are ready to leave the hospital in a few days, depending on the transplant center. While surgery is always associated with pain, there is a variety of intravenous and oral medications that provide excellent pain control. Fear of pain should not be a reason to decide against a kidney transplant! Patient Education Resources: Transplant Living Resources http://transplantliving.org/community/patientresources.aspx United Network for Organ Sharing (UNOS) Resources http://www.unos.org/donation/index.php?topic=patient_education Scientific Registry of Transplant Recipients Fast Facts http://www.ustransplant.org/csr/current/fastfacts.aspx National Kidney Foundation s Transplantation Resources http://www.kidney.org/transplantation/ Page 8 of 21
Questions Asked about Living Donor Kidney Transplants What criteria (decision factors) does the transplant center team use to select a living kidney donor? The donor must: Understand the information he/she receives from the donation team State he/she is willing to donate a kidney Not be under pressure to donate Be medically and psychosocially suitable Be fully informed of the risks and benefits of donation Be fully informed of the risks, benefits, and alternative treatment available to the recipient What is the definition of a related living donation? Related living donors are blood relatives of transplant candidates. They can be: Brothers and sisters Parents Adult children (over 18 years of age) Other blood relatives (aunts, uncles, cousins, half brothers and sisters, nieces and nephews) What is the definition of a non related donation? Unrelated living donors are not blood related to transplant candidates. They can be: Spouses, in law relatives Close friends, co workers, neighbors, or other acquaintances What is the definition of a non directed donation? Living donors give a kidney to anyone who needs a kidney. Without specifying a donor, the transplant center looks for the best recipient. This type of donation is also called: An anonymous donation Stranger to stranger living donation Individuals who are interested in becoming non directed donors should contact transplant centers in their area. Who can donate a kidney? Anyone who is in good health and is over the age of 18 (or 21 for some centers) can be an organ donor. In general, a donor cannot have diabetes, cancer, or kidney disease. Other conditions such as hypertension or heart disease will be reviewed by the team to decide the risk to the donor of both short term and long term effects of these conditions. The evaluation testing for the donor will be focused on discovering any problems that would make the donation too risky for his/her health during the surgical procedure, as well as long term. The donor must be able to give informed consent for the procedure. The donor may at any time opt out of the procedure. Page 9 of 21
What happens during the evaluation? The living donor must first undergo a blood test to determine blood type. If he/she is compatible, the donor can proceed to a medical history review and a complete physical examination. Typical testing can include an echocardiogram, electrocardiograph, chest x ray, abdominal ultrasound, and other laboratory blood testing. There will also be urine testing, with some centers requiring a 24 hour urine collection. Gender specific testing, such as pap/ mammogram or Prostate Specific Antigen (PSA), is also completed. There will be an interview with a social worker and/or a psychologist to assess the individual s understanding of the procedure. This includes the donor s understanding of the risk and benefits of the procedure and verification that there is no pressure to donate. They will also explore possible financial implications of a donor not performing his/her normal activities, such as child care, or not working (employment) for up to 2 6 weeks. The decision to become a living donor is a voluntary one, and the donor may change his or her mind at any time during the process. The donor will be assigned a living donor advocate as part of the donor evaluation team. This individual will serve to protect and promote the interest of the donor and ensure the donor s decision is informed and free from coercion. This individual will not be a part of the recipient s care team. Is there risk with living donation? The risks of the surgery to remove the kidney are small. The studies report: 90% of donors experience no complications 10% of donors may have unintended surgical complications such as bleeding, wound infection, fever, constipation, and atelectasis (failure to fully expand small air sacs in lungs). These issues may prolong recovery by several days, but are not typically lifethreatening. The death rate related to the donation process is estimated to be 0.03%, or 3 in 10,000. 5 The long term risk of kidney donation based on current data: The risk of kidney failure after donation seems to be the same as the general population in the United States, which is 0.03%. If a kidney donor develops kidney failure, he/she will be eligible to go to the top of the list for kidney transplantation. The risk of high blood pressure and protein in the urine has been noted in long term follow up of living donors. At this time, it appears that this increase is the same as would be expected for all individuals as they age. 6 7 How is the surgery performed? There are two (2) general approaches to the surgery: Laparoscopic approach uses multiple small incisions in the abdomen to allow a small camera to be inserted along with surgical instruments for the surgeon to remove the donor kidney. The advantages include reduced post operative pain and shorter recovery time after donation. The typical recovery time is 2 3 weeks after donation. Open surgical approach requires a larger incision so the surgeon can visualize the kidney in order to safely remove it for transplant. The recovery time is expected to be 4 6 weeks before resuming full activity. Page 10 of 21
What follow up care will I need? After discharge, you will have the typical follow up appointments you would expect from any surgical procedure. This will be arranged by your donation team. You will be followed for two (2) years by the transplant center s donation team. They will discuss information regarding your general health as well as any other problems you may be experiencing related to your donation. You need to care for your health by making sure you see your primary care physician for annual check ups. This should include a urinalysis and blood pressure check at least annually. If there are blood pressures changes, recommendations for further treatment may be needed. It is important to follow healthy lifestyle habits that are prudent for healthy aging, including weight control, exercise, and efforts to reduce psychological stress. Your primary care team, as well as the living donor team, can be a resource for this information. Stay in touch with your transplant center after donation to let them know how you are doing. Contact them if you experience any problems or concerns. Your living donor advocate is a resource to assist in discussing your experience with donation. Will donor costs be covered by insurance? The recipient s insurance will be responsible for the cost of evaluation, donation, and follow up care related to the kidney donation. The recipient s Medicare Part A and B will cover all reasonable costs of kidney donation when the organ recovery is performed in a Medicareapproved transplant center. 8 It is important to have the transplant center verify the donor coverage benefits for the commercial payers. These may vary with individual plans. Federal law prohibits receiving payment other than reimbursement of reasonable expenses in exchange for providing an organ. However, reasonable expenses may be reimbursed by the recipient if he/she offers to do so. Costs not typically covered by recipient s insurance or the transplant center: Loss of wages from work Leave from work during donor evaluation, surgery, and recovery Travel expenses Housing/living expenses The social worker on the donation team may be able to assist you in finding funding for some of these costs. For your long term follow up, your insurance will be responsible for the cost of your healthcare needs. However, if there are issues that require intervention, such as an incisional hernia repair, this cost would be covered by the recipient s insurance. This would be directed by the transplant center. What if there is a problem with compatibility and I still would like to donate my kidney? There are several other options that you should discuss with the transplant team. Kidney paired exchange donation: A paired exchange donation consists of two (2) or more kidney donor/recipient pairs who are not compatible. The two (2) recipients trade donors so that each recipient can receive a kidney from someone who is compatible. Once the evaluations of all donors and recipients are completed, the kidney transplant operations are scheduled to occur simultaneously. Many transplant programs are Page 11 of 21
members of computer matching services that assist transplant programs in finding suitable living donor matches. This would be a question to ask your transplant center if you are interested. Kidney donor waiting list exchange donation: Transplant centers in certain areas of the country have requested the ability to provide a living kidney donor list exchange. In this case the kidney donor who is not compatible with an intended recipient offers to donate to a stranger on the kidney waiting list. In return, the intended recipient advances to the top of the local waiting list for a deceased donor kidney. Blood type incompatible donation: This type of donation allows candidates to receive a kidney from a living donor who has an incompatible blood type. To prevent immediate rejection of the kidney, recipients undergo plasmapheresis treatments before and after the transplant to remove harmful antibodies from the blood. There may be additional treatments to prevent rejection in the donated kidney. Positive crossmatch donation: The positive crossmatch process requires treating the recipient with plasmapheresis and other medications to reduce the antibody levels that would cause a rejection of the donated kidney. Do some people have trouble making the decision to become a living organ donor? Yes. Donation isn t right for everyone. It is important to ask many questions of the donation team and to ask to meet with others who have been through the donation experience. Talk about your fears or other concerns with your donation team. Take time to talk about your decision and be certain you are making the right decision for you. Once I am cleared to be a donor, how is it decided when the transplant will take place? This decision is made jointly by the transplant team, by you, and by the recipient. The transplant team, particularly the physicians involved directly in your recipient's care, will determine as accurately as possible the best time to do the transplant. Once the transplant is scheduled, will it definitely happen? A number of events could happen that may change the date of the transplant. For example, the recipient or donor might develop an infection or some other condition that would need to be treated before the transplant could be done. Discuss this with your transplant team. Page 12 of 21
Questions Dialysis Facility Management Might Ask about Kidney Transplant Do patients have the information they need to make a decision? To be approved for Medicare payment coverage, a facility s interdisciplinary team (which includes the patient or whomever a patient chooses to represent him/her, physician, registered nurse, social worker, and dietitian) must evaluate the individual patient s needs, then develop and follow a written plan of care. This plan of care is adjusted according to a patient's changing needs and must include discussions of treatment options, including transplantation suitability, and referrals to transplant center(s) or reasons for non referral. The transplant liaison, head nurse, or social worker, who receives additional training to be knowledgeable, is often designated to initially discuss hemodialysis, peritoneal dialysis, and transplantation with a patient. Educational tools, such as audio visual materials and brochures, provide patients and family members an opportunity to review options and ask questions. Patients are frequently overwhelmed by decisions when dialysis treatment is initiated, or may feel too ill to think about having a kidney transplant. Even if information has been distributed to the patient previously, he/she might need a second opportunity to decide whether transplant is a reasonable option of care. Although patients may independently contact a transplant center for more information or evaluation (self referral), it is important to keep the facility and doctors informed so that they can assist in coordination of your care as needed. Which patients are candidates for transplant referral? Each transplant center sets minimum criteria specifying which patients are medically eligible for transplant. It is important that physicians know each center s criteria. Patients should carefully discuss any current medical conditions with their nephrologist before referral to a transplant center to determine whether they are healthy enough to receive a kidney transplant. Remember that each center will approach unsuitable conditions differently. For instance, regarding weight criteria for eligibility, the transplant center might ask the patient to sign a contract stating he/she will lose weight in order to become eligible for a transplant. Patients with the following health concerns will not likely be suitable for transplant candidacy: Untreatable mental health disorder Alcohol or drug abuse Morbid obesity Advanced cardiac or vascular disease Recent (or incurable) cancer Requests for specific transplant centers referral criteria can be made through your dialysis facility or by directly contacting the transplant center. Age may not exclude patients from receiving a kidney transplant. Older dialysis patients should not be discouraged from pursuing transplant if their general health is good. In addition, patients should have access to information about transplant, even if their physical condition is considered marginal. Transplant center intake coordinators are trained to screen patients to determine whether they meet transplant eligibility criteria, and the transplant physician and/or surgeon will make the final decision as to whether the patient is an eligible candidate. If the patient is refused transplant due to a medical condition, this information is frequently accepted more easily from the transplant Page 13 of 21
center staff. The patient may also be given the option to have elective surgical procedures, such as coronary artery bypass graft or bladder surgery, in order to be eligible for transplant. Page 14 of 21
Questions Dialysis Facility Staff Members Might Ask about Kidney Transplant Does the patient s family understand what the patient wants and needs? When a patient considers transplant, specifically living donor transplant, he/she may have to deal with many emotions, for example: Will someone in my family want to do this? How will it affect his/her (the donor s) health? I DON T WANT a member of my family to donate a kidney! While the use of written and audio visual materials can answer questions and concerns voiced by patients and families, they may also need to discuss their thoughts and feelings with a facility health professional knowledgeable about transplantation. A designated individual often referred to as the dialysis facility transplant liaison, registered nurse, or social worker, often becomes the primary source of consistent transplant information for patients and families. Patients should be offered the opportunity to meet with this staff member. The transplant liaison also becomes the main contact to coordinate consistent information between transplant centers and the dialysis facility. How are deceased donors chosen? What is brain death? Hospital personnel frequently identify potential organ donors. Organ donor candidates generally have irreversible brain damage and are ventilator dependent, but have normally functioning organ systems. National laws mandate that hospital medical personnel follow routine referral procedures to notify Organ Procurement Organizations (OPOs) of all imminent deaths. The OPO will discuss organ donation with the families of all patients who are donor candidates. An individual patient is declared brain dead when neurological testing shows no brain activity and/or no recovery of brain function is possible. Brain death criteria include the following: Unresponsive to any stimuli No spontaneous movement No spontaneous respiration No cough to tracheal stimulation Absence of brain stem reflexes These patients might be victims of massive head trauma, such as auto accidents or gunshot wounds, but might include a patient who suffered a massive cerebral vascular accident (stroke). A physician who is not involved in the transplant process must determine brain death, and in some states, two (2) physicians must agree on the diagnosis of brain death. Using an extensive questionnaire, OPOs review the medical history and age of these individuals and determine whether they can be considered organ donors. Who can sign a Uniform Donor Card? Can the donor or that person s family change their minds? Any adult may sign a Uniform Donor Card or indicate on his/her driver s license that he/she wishes to be an organ donor. The donor can withdraw his/her permission to become an organ Page 15 of 21
donor at any time. If the next of kin refuses, organ donation may not take place, depending on state laws. If you want to become an organ donor when you die, you should tell family members and your primary doctor about your decision. Donor Card and registry information is available at http://www.kidney.org/transplantation/beadonor.cfm. Donate Life America founded by the transplant community in 1992, assists and promotes organ, eye and tissue donation by providing donor facts and stories of hope at http://donatelife.net/. For specific Donate Life Registries in your state visit http://donatelife.net/contact/localchapters.php. State teams also can provide information and referral services specific to their communities. Is the donor screened for infectious diseases? Both deceased and living organ donors are tested for infectious diseases and viruses, including Hepatitis B and C, HIV, and Cytomegalovirus (CMV). What are tissue typing, PRA, and crossmatching? Tissue typing and crossmatching refer to the laboratory tests performed on donor and recipient blood samples to determine whether the two are compatible. Tissue typing determines Human Leukocyte Antigens (HLA), a form of genetic testing. The recipient s serum is also tested for Panel Reactive Antibodies (PRA), which show whether recipients have antibodies that could cause rejection problems following transplant. The PRA test is repeated monthly after the patient is listed for a transplant; the patient should be certain samples are submitted to the transplant center by the dialysis unit or the physician s office. When the recipient has a high PRA it is more difficult to find a compatible donor, however new medical advances are improving the outlook for these patients. The crossmatch is the final test to determine whether the donor and recipient are compatible. Recipient serum is tested against donor cells to determine whether there are antibodies that will kill donor cells. A negative crossmatch means there is no reaction, and the transplant can occur. A positive reaction means the recipient would reject the donor organ. Antibody reduction techniques, such as plasmapheresis, are sometimes employed in an effort to reverse positive crossmatches. If successful, then transplants between previously incompatible donors and recipients can proceed successfully. How soon must the donated kidney be transplanted? The sooner the better! A deceased donor kidney must be used within 48 to 72 hours; longer storage times are associated with poorer initial kidney function and poorer long term success rates. The storage time varies due to the distance between the donor and recipient centers, how long it took to find a compatible recipient, recipient preparation for surgery, and the availability of operating rooms and surgeons. Today, donor organs can be transported in selfcontained units, which are uniquely designed containers that offer the best protection and organ preservation technology available. When there is a living donor, the transplant operation takes place immediately after the donor kidney is recovered. The kidney frequently works immediately because there is little or no storage or transport time involved. This is one reason living donor transplants are more successful than non living (deceased) donor transplants. Who pays for the removal of donated organs? Medicare Parts A and B cover most of donor evaluation and organ recovery performed in a Medicare approved hospital. If the recipient has private insurance coverage, it is important to Page 16 of 21
determine what items are covered. In general, most private insurers pay all reasonable donor costs but require that you go to a designated transplant center (perhaps one in another state), as well as pre transplant approval before the surgery takes place. Will the recipient ever know who donated the organ? In 1997, a task force of major transplant organizations developed guidelines to answer this difficult question. Guidelines established the right of the recipient and the donor family to state their wishes about exchanging information. At the time of donation and when organs are received, patients and family members should be offered an opportunity to state whether they wish to give or receive information, or whether they wish to communicate with the donor family/recipient. Do transplant patients have rejection symptoms? Fortunately, rejection episodes do not occur as often as they did a decade ago. Rejection episodes frequently cause no symptoms that a patient can recognize. The best way for a patient to avoid rejection is to take all immunosuppressive medications as prescribed, avoid taking unauthorized medications of any type, and have frequent follow up visits with the transplant center to monitor laboratory tests that evaluate renal function, blood counts, and immunosuppressive medication levels. In order to maintain optimal health, patients should promptly report any fever, signs of infection, soreness of the transplant site, or any change in urine output to the transplant center. These may be signs of serious infection or rejection. Rejection episodes, when detected promptly and properly treated, do not always result in immediate loss of the transplanted organ; however, acute rejection episodes may lead to chronic rejection, where the kidney is lost over a period of months to years later. Some patients can receive a repeat kidney transplant if the previous transplant has failed, or is failing, but first transplants are generally more successful. Page 17 of 21
Questions Physicians Might Ask about Kidney Transplant Where can I find transplant center specific outcome data? The United Network for Organ Sharing (UNOS) maintains a computer database of patients waiting for deceased donor kidney transplantation and records transplants done in the United States. The University Renal Research and Education Association (URREA), maintains The Scientific Registry of Transplant Recipients (SRTR) and compiles an annual report of centerspecific graft and patient survival rates. You can visit UNOS on the Internet at http://www.unos.org. Recently added is a prototype interactive tool to calculate and compare waiting times by transplant hospital, blood type and donor characteristics available at http://www.ustransplant.org/calculators/kidneywaittime.aspx. View patient and graft survival data at http://www.srtr.org/csr/current/centers/default.aspx. By viewing information on these websites, you can compare transplant center performance. Waiting Time Calculator What steps have been initiated to make more transplantable organs available? The medical community is aware that too many patients die while waiting for a transplant. ESRD patients have a unique life sustaining system, hemodialysis or peritoneal dialysis, while waiting for a transplant. However, since life expectancy is negatively affected by the long waiting time to transplant, transplant professionals have focused on increasing opportunities for both living donor as well as deceased donor transplantation for patients who are suitable candidates. Some other methods of increasing the supply of organs for transplant include: Living Donor Exchange Registries: When a living donor and a recipient (such as a spouse or sibling) are incompatible, the donor and recipient are placed on a registry to identify another incompatible local donor and recipient pair with whom a swap could be arranged. The registry may be local or include individuals from multiple transplant programs. Another option is for the living donor to donate his/her kidney to a patient on the deceased donor waiting list. In return, the partner would gain added priority on the waiting list for a deceased donor kidney transplant. Non Heart Beating Donors (NHBDs): Organs for transplantation are typically recovered from donors who are brain dead and have beating hearts. Organ recovery from nonheart beating donors has increased, and there is a good body of evidence demonstrating comparable mid term survival and graft function between non heart beating donor (NHBD) renal transplants and heart beating donor (HBD) renal transplants. 9 Typically, these patients do not meet brain death criteria but require ventilator support due to illness or injury. The physician and family have decided to discontinue life support systems. Some families may then elect organ donation when approached by the Organ Procurement Organization (OPO). Key factors in successful organ recovery from the NHBD include: o Cardiac arrest within 60 minutes of removing ventilator support o OPO support o Operating room and surgical teams on standby o When everyone is ready, the patient is transported to the operating room and removed from the ventilator. After cardiac arrest occurs, organ recovery takes place. For many families, being able to make this donation allows them to gain some solace from their tragedy. Page 18 of 21
Transplant of Expanded Criteria Donor (ECD) Kidneys: Research has shown that transplantation of kidneys from the ECD can be accomplished safely, although the relative risk for graft loss after a few years is increased. The ECD kidneys come from donors who are 60 years of age or older or who are 50 59 years of age and have two (2) or more of the following factors: o Serum creatinine >1.5 mg %, o History of hypertension (high blood pressure), and /or o Death due to a cerebral vascular accident (CVA), i.e., stroke. 10 Donor Condition UNOS Expanded Criteria: 3.5.1 11 Donor Age Categories 50 59 yrs > 60 yrs CVA + HTN + CREATININE > 1.5 X X CVA + HTN X X CVA + Creatinine >1.5 X X HTN + Creatinine >1.5 X X CVA HTN Creatinine > 1.5 None of the above X X X X ECD kidney donor characteristics (X) are associated with a greater risk of kidney graft failure over time when compared to a reference group of non hypertensive donors age 10 39, who did not have a CVA and whose creatinine was 1.5 mg/dl. Waitlisted patients must be fully informed about the increased risk of graft failure and must give informed consent before accepting these ECD kidneys. ECD represents an important additional resource for transplantable kidneys for the appropriate recipient. Physicians and surgeons exercise their medical judgment regarding the suitability of the organ being offered. Candidates who agree to receive ECD kidneys are also eligible to receive standard donor kidneys (all other donors). Plasmapheresis and Immunosuppressants Prior to Transplant to Reduce PRA Levels: Some Network 5 transplant centers are publishing results of pilot programs that use plasmapheresis and drug therapy (immunosuppression) to reduce the kidney recipients levels of antibodies, targeting both overall Panel Reactive Antibodies (PRA antibodies directed to a broad group of HLA antigens) or donor specific anti HLA antibodies prior to deceased or living donor transplant. The majority of patients in these programs have eliminated or significantly reduced antibodies directed against their transplanted organ (anti blood group isohemagglutinins and/or anti HLA antibodies). The long term goal of these pilot and research programs is to develop a treatment that will allow the transplantation of blood group incompatible and tissue mismatched ( positive crossmatch ) organs. Some predict this might increase access to live donor kidney transplantation by as much as 30%. Page 19 of 21
What is a referring physician s role in care of the patient post transplantation? There is wide variability in the approach to post transplantation follow up among various transplant centers. Responsibilities of referring and transplanting physicians should be clarified at the beginning of the transplant process. Written contracts may often be the best option to insure consistent post transplantation follow up care. Outreach Programs for African Americans to Reduce Transplant Waiting Times: One of the greatest challenges in organ transplantation is the shortage of organ donors. Several advances have been made in transplantation surgery to make organ donation easier, including new techniques to remove donor kidneys using less invasive surgeries. Transplant center outreach coordinators and transplant center websites offer information to assist patients and families as they consider their donation and transplant options. Getting access to transplants is another challenge faced by many patients, especially African Americans, who have been shown to have less access to kidney transplantation, lower rates of kidney (graft) survival, and higher rates of acute rejection. 12 1 U.S. Renal Data System. USRDS 2008 Annual Data Report: Atlas of Chronic Kidney Disease and End Stage Renal Disease in the United States, (Table K.10) Bethesda, MD: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Disease; 2008. Available at: http://www.usrds.org/2008/ref/k_economic_costs_of_esrd_08.pdf. Accessed August 19, 2009. 2 Centers for Medicare & Medicaid Services. Medicare s Coverage of Kidney Dialysis and Kidney Transplants Benefits Brochure. CMS Publication No. 11360. August 2008. Available at: http://www.medicare.gov/publications/pubs/pdf/11360.pdf. Accessed January 18, 2011. Page 20 of 21
3 Willoughby LM, Fukami S, Bunnapradist S, et al. Health insurance considerations for adolescent transplant recipients as they transition to adulthood Pediatr Transplant. 2007;11:123 131. 4 U.S Renal Data System, USRDS 2008 Annual Data Report: Atlas of Chronic Kidney Disease and End stage Renal Disease in the United States, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD: 2008. Available at: http://www.usrds.org/2008/pdf/v2_07_2008.pdf. Accessed July 7, 2009. 5 Kasiske BL, Ravenscraft M, Ramos EL, Gaston RS, Bia MJ, Danovitch. The evaluation of living renal transplant donors: clinical practice guidelines. J Am Soc Nephrol. 1996, 7(11):2288 2313. 6 Delmonico F; Council of the Transplantation Society. A report of the Amsterdam forum on the care of the live kidney donor: data and medial guidelines. Transplantation. 2005; 79(6):S53 66 7 Tan J, Chertow G. Cautious optimism concerning long term safety of kidney donation. N Engl J Med. 2009;360:459 469. 8 Centers for Medicare & Medicaid Services. You Can Live: A Guide to Living with Kidney Failure Brochure. CMS Publication No. 02119. February 2007. Available at: http://www.medicare.gov/publications/pubs/pdf/02119.pdf Accessed January 18, 2011. 9 Barlow AD, Metcalfe MS, Johari Y, Elwell R, Veitch PS, Nicholson ML. Case matched comparison of long term results of non heart beating and heart beating donor renal transplants. Br J.Surg 2009;96(6):685 91. 10 United Network for Organ Sharing. Questions & Answers for Transplant Candidates about Kidney Allocation Policy Brochure. June 2008. Available at: http://www.unos.org/docs/kidney_brochure.pdf Accessed January 18, 2011. 11 United Network for Organ Sharing. Policy 3.5: Organ Distribution: Allocation of Deceased Kidneys. June 20, 2008. Available at: http://www.unos.org/policiesandbylaws2/policies/pdfs/policy_7.pdf. Accessed January 18, 2011. 12 Young, CJ, Gaston RS, Renal transplantation in black Americans. N Engl J Med. 2000;343(21):1545 52. Page 21 of 21