UNIVERSITY OF MARYLAND MEDICAL CENTER WE HEAL, WE TEACH, WE DISCOVER, WE CARE

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1 Kidney Transplant Program Patient Guide Overview The University of Maryland Kidney Transplant Program has saved the lives of thousands of patients who have end stage renal disease. By replacing kidneys which have ceased to function effectively, the program has given new life new energy and new possibilities to people whose lives had been restricted by dialysis. To schedule an appointment please call For more information visit us online at umm.edu/ transplant The University of Maryland Medical Center has performed over 5,500 total kidney transplants since In addition, our physicians who are all faculty of the University of Maryland School of Medicine have made significant contributions to the advancement of living donor kidney transplant surgical techniques and post-transplant immunosuppresion treatments. UNIVERSITY OF MARYLAND MEDICAL CENTER WE HEAL, WE TEACH, WE DISCOVER, WE CARE

2 REASONS FOR KIDNEY TRANSPLANTATION The function of your kidneys is to remove waste and excess water from the body through the production of urine. Your kidneys are responsible for maintaining the correct balance of fluid and chemicals in your blood, including sodium, potassium, phosphorous and calcium. An imbalance can affect various organ systems in your body. A kidney transplant is considered when your kidney function has significantly diminished and no longer supports your body s needs referred to as End Stage Renal Disease (ESRD). The most common causes of ESRD in the United States are diabetes and high blood pressure. Other conditions that may cause your kidneys to fail: Polycystic Kidney Disease Nephrotic Syndrome Urinary Tract Problems Autoimmune Diseases, such as Lupus DIALYSIS OR KIDNEY TRANSPLANTATION - WHICH ONE IS RIGHT FOR ME? The most important question to answer about kidney transplantation is why someone with kidney failure would want to go through an operation when hemodialysis offers an artificial way of replacing the function of the kidney. The first reason to pursue a kidney transplant is the fact that patients that undergo kidney transplantation live longer than patients that remain on dialysis. Depending on your age at transplant, you can expect to have on average an extra 4 to 17 years of life with a transplant over hemodialysis, and have a 50-80% reduction in mortality. The second reason to pursue a kidney transplant is to improve your quality of life. ARE YOU A TRANSPLANT CANDIDATE? All potential transplant candidates begin their journey with a comprehensive evaluation that includes a series of tests performed by a multidisciplinary team of specialists including: a nephrologist, transplant surgeon, cardiac specialist, nurse coordinator, phlebotomist, dietician, social worker, and financial specialist. Within a week or two after your initial evaluation, your case will be presented to the kidney transplant listing committee which determines whether or not you are suitable for transplantation. The purpose of the evaluation will be to: Determine whether you will be able to tolerate a transplant safely Determine if you actually want a transplant Ensure that you have the appropriate emotional and social support in place before and after transplant Determine your insurance coverage and financial resources Discuss the different types of transplant options available to you During this process, we will also help you understand the risks and benefits of kidney transplantation, so you can make an informed decision. Having a kidney transplant is a life-changing event and requires a lifelong commitment of taking medications, exercising, eating healthy and attending all appointments. STEPS IN THE TRANSPLANT PROCESS: 1. Referred to UMMC Most transplant candidates are referred to the program by their primary physician, specialist, or dialysis unit. Many also enter at their own initiative. The process begins with a call to the Transplant Office. 2. Pre-Transplant Evaluation If it is determined that you should be evaluated for transplant, you will meet the entire transplant team and have various diagnostic tests. 3. United Network for Organ Sharing (UNOS) Wait List After your pre-transplant evaluation and the transplant team determines transplant is your best option, you will be added to the national wait list. 4. Surgery Once a suitable donor kidney has been identified, you will undergo transplant surgery at the University of Maryland Medical Center. 5. Follow-up Care at UMMC It is a lot of work to take care of your new kidney. There is nothing as important for the success of your transplant as YOU taking care of YOUR new kidney. Nobody can do that for you. You will be surprised how much work it takes to keep your kidney healthy during the first few months after your transplant. The good news is that if you do it well, life gets a lot better over the next year. You will need to take anti-rejection medications every day, you will only need to get labs once per month, and you will have only one visit per year with a kidney transplant specialist. 2

3 TYPES OF KIDNEY TRANSPLANTS A variety of options are available for those who choose transplantation, including standard criteria deceased donor transplants, high kidney donor profile index transplants, and living donor kidney transplants. By taking advantage of all of these types of transplants, the University of Maryland Medical Center is able to offer patients more opportunities for transplant and increase the transplant rates. Increased transplant rates translate into shorter wait times. 1. Deceased donor kidney transplants - Standard criteria deceased donor transplants have the longest waiting times and outcomes that are only second to living donor transplants. High Kidney Donor Profile Index: There are more than 100,000 people in the United States waiting for a kidney transplant. Transplant programs are working to find ways to use more organs to increase successful transplants. Every kidney offered for transplant will have a Kidney Donor Profile Index score (KDPI). The majority of deceased donor kidneys have a KDPI index of 21-85%. Your waiting time may be reduced if you are willing to accept an organ offer with a KDPI of %. Approximately 50-60% of the deceased donor kidneys placed at the University of Maryland fit this category and the results still compare favorably to other centers that do not use these organs. You will have the opportunity to sign a consent for kidney offers with a KDPI score of 85% or above. Even if you sign this consent you can still turn down any kidney you are offered. 2. Living donor kidney transplants - The University of Maryland has been a leader in the development of living donor transplantation for over 20 years. Because of our pioneering efforts, the University of Maryland has one of the largest experiences in laparoscopic living donor kidney removal and living donor transplantation in the world. We were the first center on the East Coast and the third hospital in the United States to offer single-incision living donor kidney removal. The single-incision technique allows us to remove the kidney through one small incision made through the belly button. After the kidney is removed and the incision is closed, donors spend 1 2 days in the hospital and are able to return to their full routine within 2 weeks with hardly any visible scar. The University of Maryland Medical Center was the first center on the east coast and the third hospital in the US to offer single-incision living donor kidney removal. Living Donors are a precious resource. Our evaluation process insures that all living donors are completely healthy and have a very low risk of ever having a problem with their remaining kidney. In fact, over 99% of living donors never have a kidney problem after donation. We evaluate each donor very carefully to insure that donation is as safe as possible and we make sure that donors are extremely healthy. We screen donors for high blood pressure, diabetes or the potential for diabetes with a sugar tolerance test, protein in the urine, which can be an indicator of a kidney problem, and creatinine clearance to measure the function of the kidney; we also assess whether the patient is overweight and take a complete medical and social history. Only if the donor is in very good health, and it is safe, do we proceed. 3

4 TOP REASONS TO CHOOSE UNIVERSITY OF MARYLAND KIDNEY TRANSPLANT PROGRAM Superior Surgical Skills: Our surgeons are aggressive in accepting and repairing deceased donor kidneys that might otherwise not have been viable for transplantation. The rate at which patients are transplanted with deceased donor kidneys is far greater at University of Maryland than at other area centers. A faster transplant rate means you get transplanted sooner after being listed. Specialize in High-Risks Transplants: Our kidney transplant program has a long history of transplanting high-risk patients, many of whom have been denied by other transplant centers. We evaluate each patient on an individual basis, ensuring that they receive care that suits their specific needs. We are one of only a handful of centers that performs simultaneous nephrectomy and living donor transplant for patients with polycystic kidney disease performs multiple artery living donor transplants Innovation, Research and the Latest Technology: The University of Maryland Medical Center, along with its partner University of Maryland School of Medicine, is widely recognized for its significant research. Some of our research and innovations include: Baltimore Polycystic Kidney Disease (PKD) Research and Clinical Core Center a nationally recognized program whose goal is to advance translational PKD science nationally and internationally. The University of Maryland Medical Center is one of only a handful of centers in the Mid-Atlantic region to perform simultaneous bilateral nephrectomy transplants to treat polycystic kidney disease. Helping Transplants Work Longer We are part of multi-center studies looking at ways of evaluating kidney biopsies using molecular techniques. Labs analyze DNA, RNA and other genetic materials in new ways. We are also involved in other studies using these techniques to diagnose rejection or other kidney transplant problems Knowledge and Expertise: The transplant team at the University of Maryland is among the best in the nation. The depth of experience on the team allows our program to treat a broad range of patients, including high risk patients that have been turned down at other institutions. Our team is actively involved in developing the next generation of techniques and devices to treat kidney disease. Collaboration with Your Primary Physician: Our physicians can help your primary physicians determine if kidney transplant, or another treatment option, is best for you. The sooner a patient is referred to our program, the more treatment options are available for consideration. Focused and Compassionate: The University of Maryland transplant team is intently focused on restoring each patient to a full and active life. We understand that the decision to undergo kidney transplantation is a scary and intimidating experience. Our team is with you every step of the way to help you make the best decision for your health goals. Transplant Immunology and New Therapy The Kidney Transplant Team conducts pioneering research, exploring new ways to manage immunosuppression therapies including a proprietary immunosuppression protocol that leads to steroid-free maintenance sooner than other centers. 4

5 BENEFITS OF LISTING AT ANOTHER HOSPITAL Studies have shown that patients who join wait lists at more than one transplant center have an increased chance of getting transplanted sooner. Multiple listing means that a patient has been evaluated and approved for the transplant wait list at two or more centers. There are many factors that determine a patient s wait time, including severity of organ failure, blood type and overall health status. While there are no guarantees that multiple listing will lead to earlier transplantation, there may be benefits in listing at transplant centers in different regions where the donor pool is different. How Multiple Listing Works: A patient is eligible to join multiple wait lists at multiple transplant centers across the country. A separate evaluation is required for each transplant center. A patient can transfer wait time from their original center to UMMC, where they are likely to receive an organ sooner. Patients can transfer from one transplant center to another with no penalties, costs or loss of wait time. When considering multi-listing with the University of Maryland Medical Center, patients are expected to share all medical records, complete any additional necessary testing and speak with either a UMMC transplant coordinator and/or physician on our transplant team. In addition, you must be physically present at UMMC in Baltimore within 3-6 hours after receiving an organ offer. Meeting this window of time is critical to ensure that the deceased donor kidney, if applicable, does not spend too much time outside of the body where it is not actively receiving a blood supply. Lastly, you must be available for follow-up care at UMMC immediately following the transplant, which may require temporary relocation. TRANSPLANT COSTS The cost of an organ transplant is very expensive and is life-long commitment. During your evaluation process, you will meet with a financial coordinator to help you understand your insurance coverage and financial responsibility for transplant. If you have health insurance, a large portion of your medical care for your transplant may be covered. Even with insurance coverage, it is likely that you will have out-of-pocket costs for the transplant as well as any post-transplant medications and care. The financial coordinator will obtain pre-authorization from your insurance company and determine the extent of coverage for the surgery as well as posttransplant medical care. Because of the high cost of organ transplantation, verified financial resources are required before the transplant can take place. Relocation If you live outside of the Baltimore area, you may incur expenses related to traveling to the University of Maryland Medical Center for testing or treatments. Depending on how far you live from the University of Maryland, you may be asked to temporarily relocate closer to Baltimore. Your insurance may not cover living expenses while your recover during the first 4 weeks after transplant. It is important for patients to be in close proximity to the hospital to ensure you can get specialized care when you are most vulnerable to medical and surgical complications. Your financial coordinator will estimate your expenses and will provide resources that may help cover some costs. Concierge Services Our Concierge Services team provides a seamless experience from your first appointment to discharge. They can help plan your visit and answer questions related to your stay in Baltimore. Specifically, they can help you with the following: Hotels and Accommodations Travel Arrangements Getting Around Town Interpreter Services Special Needs Concierge Services: prc@umm.edu 5

6 Fast Facts ABOUT THE UM KIDNEY TRANSPLANT PROGRAM Transplants by Donor Type Living Donor Deceased Donor 195 Median time to kidney transplant for patients on waiting list: 322 days Ages for Kidney Transplant Primary Diagnosis for Patients Transplanted Under 18 2% % % % % Diabetes (Type 1 & Type 2 23% Hypertension 47% Polycystic Kidney Disease 8% Other 22% 7/1/ /31/2014 Deceased Donor Kidney Patient Survival Observed % Expected % National Observed % /1/ /31/2014 Living Donor Kidney Patient Survival Observed % Expected % National Observed % Observed: Results from UM Transplant Center Expected: What SRTR determines our results should be based on risk adjusted factors such as age, patient population, and underlying disease National Observed: Average survival rate for all transplant centers in the US 6

7 KIDNEY TRANSPLANT TEAM Nephrologists MatthewWeir, MD Charles Cangro, MD Nadiesda Costa, MD Beje Thomas, MD Mario Rubin, MD Clarissa Diamantidis, MD Donna Hanes, MD Abdolreza Haririan, MD Paul Light, MD Manju Mavanur, MD Susan Mendley, MD (Pediatrics) Tom Pallone, MD Afshin Parsa, MD Daniel Salzberg, MD Richard Ugarte, MD Surgeons Stephen Bartlett, MD Jonathan Bromberg, MD, PhD David Leeser, MD Soo Yi, MD Silke Niederhaus, MD Eugene Schweitzer, MD Concierge Services