THE BENEFITS OF LIVING DONOR KIDNEY TRANSPLANTATION. feel better knowing

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1 THE BENEFITS OF LIVING DONOR KIDNEY TRANSPLANTATION feel better knowing

2 your choice will help create more memories.

3 Methods of Kidney Donation Kidneys for transplantation are made available through deceased and living donors. DECEASED DONOR: A person who has died and agreed to donate their organs for transplantation. Donated organs obtained in this way are given to people on the national organ transplant waiting list. LIVING DONOR: A person who (while alive) gives one of his/her own kidneys to someone who needs one. Types of Living Donation LIVING RELATED DONATION: A donation from a blood relative such as a mother, father, brother, sister, aunt, uncle, or cousin. The Reality of End-Stage Renal Disease: Patients with kidney failure or end-stage renal disease (ESRD) have three options for treatment (renal replacement therapy): hemodialysis, peritoneal dialysis, or renal transplant. The one- and five-year patient survival rates on dialysis are currently 78% and 32%, respectively. The one- and five-year patient survial rates following kidney transplantation are greater than 95% and 85%, respectively. LIVING UNRELATED DONATION: A donation from someone who is not a blood relative such as a spouse, friend, co-worker, relative-in-law, or church member. NON-DIRECTED DONATION: The living donor does not direct their donation to a specific individual, but to the most compatible person on the wait list. PAIRED EXCHANGE PROGRAM: Unfortunately, in many instances even though a recipient has multiple potential kidney donors, there may not be one that is an acceptable match. In this case, the potential donors and the recipient can enter the Paired Donation Network. Once entered, the network will seek to identify another mismatched pair that is capable of creating a two-way match. Thus, the donor in one pair is compatible with the recipient of the other pair and vice versa, allowing the donor in one pair to donate to the recipient of the other pair. Assuming that the risk of surgery is not unusually high and the risks of post-transplant medications are not too great, for most ESRD patients transplantation will significantly extend their life. PAIR 1 Not Compatible Compatible PAIR 2 Donor 1 Donor 2 Compatible Not Compatible Recipient 1 Recipient 2 3 4

4 The National Deceased Donor Kidney Transplant Waiting List The United Network for Organ Sharing (UNOS) manages a national list of people waiting for kidney transplants. When kidneys become available from deceased donors, a name from the list is chosen according to certain factors, including: 1) donor and recipient compatibility, 2) time on the waiting list, and 3) the urgency of the recipient s need. Unfortunately, there is a serious shortage of organs available for transplantation. At present over 80,000 people are on the UNOS kidney transplant waiting list. In 2008, only 10,551 kidneys were transplanted from deceased donors. This means that the wait for a kidney can be many years. While someone with a functioning dialysis access can remain on dialysis for an extended period of time, it is not an ideal situation nor is it a cure. For some people, however, waiting for a kidney on the UNOS waiting list may be the only option. For others, living donation is a possibility, and we encourage all of our patients to fully explore this option. Why consider living donor kidney transplantation? Living donor kidney transplants have several advantages over transplants from deceased donors. Most importantly, according to the Organ Procurement and Transplantation Network (OPTN), living donation provides for better allograft (transplanted kidney) and patient survival as compared to deceased donor transplantation. In fact, the five-year success rates for living donor kidney transplants are greater than 10% higher than those achieved by deceased donor kidney transplants. Five-year patient survival rates following living donor kidney transplants are significantly greater than those achieved by deceased donor kidney transplants as well. Allograft (Transplanted Kidney) Survival Rates for Kidney Transplants Performed from Patient Survival Rates for Kidney Transplants Performed from Living Donor Deceased Donor 1 Year Survival* 95.0% 89.1% 3 Year Survival* 88.2% 78.1% 5 Year Survival* 79.7% 66.7% Living Donor Deceased Donor 1 Year Survival** 97.9% 94.4% 3 Year Survival** 94.3% 88.3% 5 Year Survival** 90.1% 81.9% Additional Benefits of Living Donation In addition to better long-term kidney transplant and patient survival with living donation, we also see the following: BETTER HEALTH: Living donor transplantation enables patients to get their transplants sooner and to spend as little time as possible on dialysis. As a result, most patients are in better overall health at the time of transplant. BETTER QUALITY KIDNEY: A kidney received through living donation is healthier than one received through deceased donation in most cases. In a live donor transplant the recipient and donor surgeries are performed at the same time, which enables the surgeons to place the new kidney into the recipient immediately. This means that the new kidney is without blood supply for only a very short time as compared to a deceased donor kidney, which can be without blood supply for many hours. As a result, kidneys from living donors tend to have fewer complications, typically function immediately, and do better overall in the long term. Additionally, recipients of living donor kidney transplants experience less rejection and are able to be maintained on a smaller number of anti-rejection medications at lower doses after surgery. BETTER PREPARED: Surgery can be scheduled for a time when both the donor and recipient are in the best condition for surgery. Additionally, living donation is much more convenient as it allows recipients to plan ahead, i.e., for child care while in the hospital, alert employers and co-workers of time off the job, and to arrange for care while recovering at home. Living donor kidney transplants achieve long-term results that are significantly better than deceased donor transplants, and they eliminate the risk of patient deterioration or death while on the wait list. As a result of all these factors, the UT Southwestern Kidney Transplant Team strongly encourages all of our patients to actively pursue living donor kidney transplantation whenever possible. Who can be a kidney donor? A living donor should be 1) at least 18 years of age, 2) in good mental and physical health, and 3) both voluntarily willing and fully prepared to undertake the transplant process. Age, gender, and race are not factors in determining a successful match. Every potential donor is evaluated on an individual basis. For more current SRTR data visit ustransplant.org *Percentage of transplants in which the transplanted kidney is still working at the end of the listed period of time (e.g., 1-year, etc.). **Percentage of transplants in which the patient is still living at the end of the listed time period (e.g., 1-year, etc.). 5 6

5 your choice gave him more time with his children.

6 What is involved in the evaluation of a living donor? The first step: All potential donors are encouraged to contact the UT Southwestern Transplant Team. An application must be filled out and returned to our office. Once received, the potential living donor will be contacted by our living donor coordinator, who will then initiate a screening evaluation. Once the screening process is successfully completed, the potential living donor is assigned a nurse, a kidney specialist, and a transplant surgeon who have not seen the potential recipient. This medical team s only responsibility is to maintain the health of the potential donor. All of the donor s medical information is confidential and will not be reported to the recipient or any other family members or friends. This team will begin the formal evaluation, which will include: 1. Compatibility testing. One of the first tests in the evaluation process is determining blood type. This is done to see if the donor s and recipient s blood types are compatible for transplantation. (see below) 2. A thorough medical evaluation by a surgeon and a kidney specialist to ensure that potential donors are healthy enough for donation. 3. An evaluation by a social worker to determine the family, friends, and support systems that will need to be in place after donation. BLOOD TYPE COMPATIBILITY Recipient O A B AB 4. A meeting with a donor advocate to ensure that the donor s interests and rights are being protected and to assess for any undue pressure to donate. 5. Medical testing and lab work to assess the health of the donor and their ability to undergo living donation. 6. A meeting with our financial coordinators to help assist the donors in any way possible with the process. Compatible Donor O A or O B or O A, B, AB, or O What are the surgical risks to the living donor? Living donor kidney transplantation is possible because we are born with two kidneys. When surgeons remove one of the donor s kidneys, the remaining kidney usually provides adequate kidney function for the rest of the donor s life. It is normal for the potential donor and the potential donor s family to have fears and concerns about potential surgical complications. Unlike most other surgeries, the donor is in excellent health and all of the risk is directly related to the surgery itself. Luckily, the risks associated with a donor nephrectomy (the surgery to donate a kidney) are usually very small and manageable. PAIN: This is a certainty after any surgical procedure, but it can be managed successfully with postoperative pain medications. COMPLICATIONS: About 10% of donors report some form of postoperative complication, including wound infection, minor bleeding, urinary tract infection, nausea, vomiting, and pneumonia. All of these complications can be managed by the medical staff. REOPERATION: Some complications may be so serious that they require a second surgery to fix. Reoperation rates of 1-2% have been reported. Examples of the kinds of major complications that can occur include hernias, bleeding, bowel obstruction, and bowel injury. READMISSION: Some donors may have problems after being discharged from the hospital. Approximately 2% of donors return to the hospital due to nausea, vomiting, bleeding, constipation, diarrhea, or infection. DEATH: Death following laparoscopic donor nephrectomy is exceedingly rare. The reported rate of mortality following this operation in the United States is 0.03%. (That s three deaths for every 10,000 procedures.) This rate is the same mortality rate reported for healthy patients undergoing general anesthesia. While the immediate surgical risks associated with donating a kidney are very small, they are real, and all potential donors will have the opportunity to discuss the surgical risks in detail with the transplant surgeons during their evaluation. It is important for the potential donor and recipient to realize that out of every three people who volunteer to donate a kidney, most transplant programs will accept only one. This is because the donor medical evaluation often reveals significant hypertension, diabetes, or other health problems that would increase the risk to the donor. 9 10

7 Who pays for living donor kidney transplants? The cost of the living donor s evaluation, surgery, limited follow-up tests, and medical appointments are paid for by the recipient s Medicare or private health insurance. However, the recipient s insurance may not cover follow-up services if medical problems arise as a result of the donation. Therefore, potential donors will meet with our transplant center financial coordinators as part of the evaluation process. Our coordinators will assess each individual case and clearly explain the financial responsibilities and assistance that is available to all potential donors. Talking to Family and Friends about Living Donation Many people may volunteer to donate a kidney to help a family member or friend. However, there are situations in which the recipient may need to ask for this help. We recognize that this may be an uncomfortable situation and offer the following suggestions: Life after Donation The normal hospital stay following laparoscopic kidney removal is approximately 1-2 days. After discharge, patients are asked to avoid heavy lifting (anything greater than 10 lbs.) for 6 weeks. Most donors are able to return to work in approximately 4 weeks. However, the rate of recovery can vary greatly from person to person. Following donation, it is very important that donors establish and maintain good longterm medical follow-up with their primary care physician. We recommend that the donor undergo a routine physical, a urinalysis (urine test), and have their blood pressure and kidney function checked yearly. Post-donation, all donors will be followed by the UT Southwestern Transplant Team for a period of 2 years. Most living donors live a long, healthy life. Most feel that the small, increased, long-term risks of kidney disease and hypertension are less than the satisfaction they receive from helping the recipient live a better and longer life. Long-term studies suggest that living donors live longer and healthier lives than the general population. However, living donors are a select group of exceptionally healthy people who are healthier than the general population. We do not know if the donors would be even healthier and live longer lives if they had not donated. All donors will have the opportunity to speak with the transplant team in detail about the risks involved in donation during their evaluation. Of note, following donation it is recommended that females wait 6 months before attempting to become pregnant. 1. Make the need for a kidney transplant known to all family members and close friends. 2. Share information, such as this booklet, in an effort to educate family members and friends about the advantages of living donation. 3. Consider each potential donor s personality and decide the best ways to approach him or her. 4. Assure the potential donor that they are under no obligation to donate and that his/her decision will in no way affect your relationship in a negative manner. 5. Allow the potential donor time to consider all aspects of the procedure and make their final decision. 6. Don t attempt to pressure someone into saying yes. If the initial decision is no, then leave it at that. 7. Encourage anyone who might be interested in donating to contact the transplant center. We will schedule a time to talk with the potential donor and provide them with educational materials. Make it clear to them that just because they contact the transplant center doesn t mean that they have to donate. One of the most important things to do when talking to someone about living donation is to offer education. Share this booklet with them and have them talk to our transplant team about donation. Helping potential donors have a clear understanding of the difference living donation can make in both your lives, and the risks and benefits associated with living donation, will allow them to make a decision based on a good understanding of what s at stake and what s required

8 What if I don t have a living kidney donor? If you are unable to identify a family member or friend who qualifies to be a living kidney donor, you will be placed on the UNOS national kidney transplant waiting list. If additional people come forward who are interested in donating after you ve been placed on the waiting list, they can be evaluated at that time. The waiting time on the UNOS national kidney transplant list can be 3 years or more, depending upon blood type. There are some options for wait-listed patients that may be able to shorten this time. All patients placed on the waiting list at UT Southwestern will have the opportunity to discuss these alternative wait list options with a physician at the time of listing. your choice is well-informed.

9 Kidney, Liver and Pancreas Transplant Program Professional Office Building 2, 7th Floor Suite 700, 5939 Harry Hines Blvd., Dallas, TX T F utsouthwestern.org 2010 UT Southwestern Medical Center. MKT 396_5