About your KIDNEY transplant

LAST UPDATE 11/20/2012 Before your Transplant

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Table of Contents Patient information sheet ............................................................................................................................. 3 Introduction .................................................................................................................................................... 4 Welcome ..................................................................................................................................................... 4 About your kidneys ....................................................................................................................................... 4 Benefits and risks .......................................................................................................................................... 4 Infection ....................................................................................................................................................... 5 Rejection ..................................................................................................................................................... 6 The kidney transplant team .......................................................................................................................... 8 Kidney Selection Criteria ............................................................................................................................ 11 Inclusion criteria ........................................................................................................................................ 11 Exclusion criteria ....................................................................................................................................... 11 Transplant Evaluation ................................................................................................................................. 12 Clinical Laboratory Testing ....................................................................................................................... 12 Diagnostic Testing..................................................................................................................................... 12 Immunogenetic Testing ............................................................................................................................. 12 Dental Exam .............................................................................................................................................. 12 Additional Testing ...................................................................................................................................... 13 Viral Screening .......................................................................................................................................... 13 Cardiac Screening ..................................................................................................................................... 13 Abdominal Screening ................................................................................................................................ 13 Selection Committee ................................................................................................................................... 14 Decision .................................................................................................................................................... 14 Listing ........................................................................................................................................................ 14 Expectations after listing ........................................................................................................................... 14 Waiting for a Transplant ............................................................................................................................. 15 Preparing for a Transplant.......................................................................................................................... 15 Kidney Donation and Selection of Donor Organs .................................................................................... 16 UNOS Extended Criteria Donor (ECD) ..................................................................................................... 16 CDC High Risk Donors ............................................................................................................................. 17 Hepatitis C Donor ...................................................................................................................................... 17 Donor organ options.................................................................................................................................. 17 Donor Recipient Matching .......................................................................................................................... 18 When an organ becomes available ............................................................................................................ 18 Be Prepared .............................................................................................................................................. 18 Hospital arrival .......................................................................................................................................... 18 The surgery ............................................................................................................................................... 19 Important contact information: .................................................................................................................. 19 Resources .................................................................................................................................................... 20 NOTES AND QUESTIONS ........................................................................................................................... 22

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Patient information sheet Please fill this form out and return to the transplant coordinator as soon as possible. The information will help the team coordinate your post transplant care, and ensure that changes in your care are effectively communicated to the correct individuals or organizations. Your name: ......................................................................................................................................... Address: ............................................................................................................................................. Home phone number: ........................................................................................................................ Cell phone number: ........................................................................................................................... Work phone number: .........................................................................................................................

Primary contact person Name: ................................................................................................................................................ Relationship: ...................................................................................................................................... Address: ............................................................................................................................................. Home phone number: ........................................................................................................................ Cell phone number: ........................................................................................................................... Work phone number: .........................................................................................................................

Secondary contact person (Person you wish us to contact if we can’t reach you) Relationship: ...................................................................................................................................... NAME: ............................................................................................................................................... Address: ............................................................................................................................................. Home phone number: ........................................................................................................................ Work phone number: ......................................................................................................................... Local medical doctor: ..................................................................................................................... Address: ............................................................................................................................................. Phone number: .................................................................................................................................. Fax number: ...................................................................................................................................... Place where you plan to get your lab work drawn at home: .............................................................. Phone: ............................................................................................................................................... Contact person: ................................................................................................................................. Where you will get your prescriptions filled: ...................................................................................... Phone number: .................................................................................................................................. Fax number: ......................................................................................................................................

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Introduction Welcome Welcome to the Kidney Transplant Program at Duke University Hospital. This booklet is designed to provide helpful information about the kidney transplant evaluation process in order to educate and prepare you as you consider the option of kidney transplantation. We are here to answer your questions. The kidney transplant program at Duke began in February 1965. Since that time, we have performed over 3,000 kidney and kidney/pancreas transplants. We are constantly working to improve kidney transplantation for our patients and families.

About your kidneys The kidneys are two bean-shaped organs located in the lower back along either side of the spine. Normally everyone has two kidneys but can live a normal life with only one kidney. Besides making urine, the kidneys do the following jobs: 1) Take waste materials and extra fluid from the blood 2) Help regulate blood pressure, make red blood cells and produce certain hormones 3) Regulate fluids, salts and chemicals needed by the body Kidneys can stop working for several reasons. The two most common causes are hypertension and diabetes. Some people can live for many months and even years with kidney problems that are slow to worsen. Their kidneys may not work perfectly, but with proper diet and medications, they are well enough to have little interruption in their daily life. Other people experience complete kidney failure, which requires kidney replacement therapy to sustain life. End-stage kidney disease means the kidneys stop functioning and normal function will not return. There are two ways to treat end-stage kidney disease: dialysis or kidney transplant. Since we are able to function normally with one kidney, kidney transplant involves surgically removing a functioning kidney from one person and placing it into you. This new kidney will perform all the functions your diseased kidneys could not. Some diseases can come back in a transplanted kidney. Kidney transplants are successful about 90 – 95% of the time when the kidney donor is a relative or friend, and about 80 – 90% of the time when the kidney is from a cadaver donor (someone who dies and donates their organs). If a transplant fails, the patient will return to dialysis as needed and may be a candidate for another transplant.

Benefits and risks Benefits and risks must be weighed when choosing any form of therapy, and a kidney transplant is no exception. One of the greatest benefits of kidney transplantation is being able to stop dialysis. As long as the one new kidney is working well, it should do everything your old kidneys used to do. Therefore, dialysis would not be necessary to maintain your health.

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A new kidney will also be able to filter your blood more efficiently than dialysis. An expected creatinine level after kidney transplant is 1.5 to 3.0, compared to over 6.0 while on dialysis. Better filtering and regulation of water and wastes will make you feel better with less fatigue. Additionally, your new kidney will begin making erythropoietin, a hormone that stimulates the bone marrow into making new red blood cells. A new supply of red blood cells should reverse the anemia and fatigue so many renal failure patients experience. Efficient kidney function will also reduce the many diet restrictions dialysis patients follow to keep their bodies in balance. After transplant, you will still need to follow a no-added salt diet, with attention to low fat foods for heart health. A goal of kidney transplantation is to greatly enhance the quality of your life. A kidney transplant will not “cure” your kidney disease. But when a transplanted kidney works well, it has the potential to greatly enhance the quality of your life. Risks related to transplantation revolve around your body’s defense system and the medications you must take for the rest of your life. These medications are given to hold back (suppress) your body’s defense system (the immune system). They are called immunosuppressants. Medication is necessary because your body’s defense system is extremely efficient and must be altered for a transplant to be successful. A brief description of the defense system follows. The defense system, basically the white blood cells, help to keep your body free of disease. White blood cells float throughout your tissues and blood vessels looking for foreign invaders. They have the ability to tell the difference between foreign and ‘self’ tissue. Each person has protein markers that label their tissues as being uniquely their own. These protein markers, called antigens, are organized according to genetic instructions (DNA). Your white blood cells bump into your own tissues, feel or read the password protein message, and leave your own tissues alone. But foreign objects, such as bacteria, dirt, or viruses lack these correct messages. Your white blood cells bump into the foreign object, and find the incorrect password. They get excited and go into action to engulf and destroy the invader. They alert other white blood cells to get them excited into action, too. This reaction of your immune system works well and is welcomed when the foreign invader is a virus. However, if this reaction occurs in response to the antigens of your new organ, this is called rejection. Immunosuppressant medication alters and holds back your defense system response. You become more tolerant of the foreign organ. The white blood cells have difficulty taking action and recognizing the new organ as being foreign. This helps prevent rejection. One can see clearly why this medication can never be stopped. Without the medication, there is nothing holding down your defense system. It builds back to top efficiency, and destroys your transplanted organ. It is also easy to see why infection can be a problem after a transplant.

Infection You should expect to be more susceptible to catching an infection, such as the flu, after transplant. You may find it takes longer to recover, and some people experience more severe complications. The common cold may turn into a life threatening case of pneumonia. Complications as serious as this are rare, but all patients must understand that infections can be significant. You will be given instructions to follow before ever leaving the hospital. These LAST UPDATE 11/20/2012 Before your Transplant

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instructions will help you decide when to call the transplant office for advice. Most of all, you will be asked to use your common sense; try to avoid people you know to be ill. When you do become ill, stay home and care for yourself and always follow the advice of the transplant office.

Rejection The immunosuppressant medications allow organ transplants to be successful, but not necessarily free from rejection. In fact, almost all patients experience some rejection activity. There are two main types of rejection activity that patients experience; acute or chronic rejection. These forms of rejection are very different and a basic explanation follows. Acute rejection happens to almost all patients who receive organ transplants. The white blood cells finally recognize that the new organ or tissue is foreign, and mount a defense. The new organ becomes a “battle ground” and is not capable of working at full capacity. Therefore, symptoms of rejection are very similar to the symptoms of organ failure. Patients who receive kidney transplants and experience rejection activity will begin accumulating the creatinine and blood urea nitrogen (BUN) in their blood again. They may not be able to make as much urine. Fluids accumulate and the patient gains weight. With an accumulation of water weight, the blood pressure might climb. And the kidney might be inflamed and swollen, pushing on surrounding tissues causing discomfort. Some patients also experience a low-grade temperature. Some people notice a little of all of these symptoms, while others might only experience an increase in their creatinine and BUN levels. For this reason, you will have your blood tested regularly to try to determine if you are having rejection activity. If you are, the sooner it can be treated, the more successful the outcome. Acute rejection is almost always reversible. Extra medication is given at the time of diagnosis. One dose of this medicine is given per day by vein in an effort to interrupt the rejection process. It might be required for three days to two weeks, depending on how tough your defense system is fighting your transplant. Once successfully reversed, some patients never have trouble with acute rejection again. But some patients experience a flare in rejection activity at a later time. You would require another course of treatment to again control the activity. Some rejection episodes require readmission to the hospital. Some patients experience two or three rejection episodes. It really isn’t predictable ahead of time, and just something you will have to wait to see how your body will respond. It is generally true, however, that acute rejection is rare beyond the first year of transplant. When doctors think you are having rejection, there are several tests that can be done to confirm this. Most patients undergo a biopsy of the new kidney. A small sample of kidney tissues is obtained and examined under a microscope. This will guide the team to begin your anti-rejection treatment. The biopsy itself is performed with the assistance of ultrasound to precisely locate the new kidney and guide the biopsy needle. The skin over the kidney will be scrubbed with a special cleansing agent, and the area where the needle will pierce your skin is numbed. After the biopsy, you will LAST UPDATE 11/20/2012 Before your Transplant

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need to lie quietly for several hours to reduce the risk of bleeding. The team will share the biopsy results with you, and whether anti-rejection treatment is needed. Chronic Rejection Chronic rejection is very different. Chronic rejection is a response of your defense system, too. This time the white blood cells make antibodies against the tissue of your new organ. The antibodies are special proteins that were specifically created to ‘latch onto’ the kidney tissue. While holding on, the antibodies alert the rest of the defense system to slowly, continually damage the tissue. Most people have little or no chronic rejection. Other people have some chronic rejection, leaving their kidney function less than perfect, but still adequate. Still, other people have enough chronic rejection that their kidney function is slowly altered to the point they lose function of the organ altogether. Some people prefer to return to dialysis, while others prefer to receive another kidney transplant. Chronic rejection is usually not reversible. The antibodies cannot be removed from your system effectively because your system makes more. The best defense to chronic rejection is to try to prevent it from happening in the first place. Follow your medication instructions carefully.

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The kidney transplant team You will meet with many members of the multidisciplinary transplant team who specialize in kidney disease and transplantation. Our team is a group of health care professionals who are specialized in caring for patients who are approaching or have received organ transplants. The most important member on the transplant team is you. The team’s relationship with you is considered a partnership. Each specialized team member provides their best effort while caring for you, and you learn how you can best care for yourself. In this way, we work together to achieve our common goal; to enhance the quality of your life. As a full partner in this adventure, we will look to you to tell us your thoughts and feelings about your health as we proceed along together. This communication is essential to reaching our goals. Members of our team include: Transplant Coordinator A Transplant Coordinator provides education regarding the transplant evaluation process, listing for transplant and patient responsibilities before and after transplant. He/she will discuss the overall course of events before, during, and after transplantation during your meetings with them. These meetings are intended to give you an opportunity to ask questions and to become fully informed about the kidney transplant process.        

Carolyn Boone, RN, MSN Rosalyn Carter, RN, MSN, CCTC Leslie Hicks, RN, MSN Mary Vanessa Neal, RN, BSN Sherri Swan-Nesbit, RN Joanne Prinzhorn, RN, MSN Judy Smith, RN, BSN Marion Stewart, RN, BSN, CCTC

Pre- Evaluation Coordinator Pre-Transplant Waitlist Coordinator Living Donor Coordinator Pre-Evaluation Coordinator Pre-Evaluation Coordinator Post-Transplant Coordinator Post-Transplant Coordinator Inpatient Abdominal Coordinator

Transplant Nephrologist A Transplant Nephrologist is a doctor that specializes in kidney disease and kidney transplantation. He or she will evaluate your current medical condition, your kidney disease and will discuss the option of kidney transplantation with you.      

David Butterly, MD Matthew Ellis, MD Arthur Greenberg, MD Uptal Patel, MD Scott Sanoff, MD Stephen Smith, MD

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Transplant Surgeon A Transplant Surgeon is the doctor who will perform the kidney transplant operation. He/she will meet with you and discuss whether a transplant is right for you based on the information obtained during your evaluation. The surgeon will also discuss what it means to agree to a kidney transplant, the risks of the surgery, and the possible complications after transplantation.      

Todd Brennan, MD Bradley Collins, MD Abigail Martin, MD Kadiyala Ravindra, MD Debra Sudan, MD Deepak Vikraman, MD

Social Worker A Social Worker will meet with you to evaluate your ability to cope with the stress of the nonmedical aspects of transplantation and your ability to follow the recommended treatment plan both before and after transplantation. The social worker will also help to identify your care-giving team.     

Jessica Farrell, MSW Jennifer Harril, MSW Shelby Fogelman, MSW Anne Wagoner-Ford MSW Karli Pontillo, MSW (living kidney donor)

Financial Coordinator A Financial Coordinator will discuss the costs associated with your transplant and the cost of medications you will require after transplant. They will work with you to help you understand your insurance coverage. It is important that you understand that all costs may not be covered by your insurance.  

Saundra Bankston Lisa Nelson-Smith

Psychologist A Psychologist will talk with you regarding the stress and anxiety you may feel during the transplant evaluation process. He/she will ask you to complete questionnaires that will help determine how you might adjust to a kidney transplant.

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Pharmacist A Pharmacist will help you understand and coordinate the many medications you will be taking after the transplant and explain any possible side effects. There are two outpatient pharmacists dedicated to our team out of the cancer center who can provide personalized transplant medicine care, mail order, review meds, etc…  Matthew Harris, RPh  Jennifer Gommer, RPh Dietitian A Registered Dietitian is available to meet with you to look at your nutrition, dietary habits, and provide you with nutrition education designed to help you stay healthy and maintain your transplant.  Julie Stoops, RD

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Kidney Selection Criteria Inclusion criteria         

Expressed interest in transplant eGFR < 20mL/min/1.73m 2 For deceased donor recipients, legal resident of the Unites States (citizen or legal alien) If patient has HIV, must have CD4 count consistently > 200 and clinical clearance by Duke Infectious Disease physician Patients > 70 years old must have a potential living donor at the time of listing. Presence of a consistent & reliable support system, including the ability to obtain anti-rejection medications after transplant & reliable transportation Ability to arrive at Duke Hospital within 6 hours For deceased donor candidates, patient must have a home residence for greater than three months in North Carolina or one of the following states: South Carolina, Georgia, Tennessee, Virginia, or West Virginia Pediatrics candidates must measure weight ≥10 kg, length ≥ 80 cm, or acceptance by surgeon

Exclusion criteria  Past history of cancer (other than skin) within 2 years, unless approved by the multidisciplinary team  Body mass index (BMI) > 40  Liver biopsy demonstrating ≥ stage 3 fibrosis unless cleared by hepatologist  Active substance abuse (alcohol or other)  Inability or unwillingness to perform self-catheterization in the setting of an unsatisfactory urinary drainage system  Persistent non-adherence with medications, dialysis treatment, &/or medial recommendations  Uncontrolled hyperparathyroidism as evidence by intact PTH > 1500  Myocardial infarction within the last 6 months or active myocardial ischemia  Mean pulmonary artery pressure > 35mmHg by catheterization or echocardiogram  Transient ischemic attack or stroke within the last 6 months  Severe restrictive or obstructive pulmonary disease  Systemic infection  Non-healing ulcer or wound  Medical or psychosocial risk factor(s) that make transplant surgery unsafe  Untreated or uncontrolled psychiatric disorders that would affect the ability to care for self  Patients in Long term care facility or other institutional setting

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Transplant Evaluation The evaluation process involves coming to Duke Hospital to meet the members of the Transplant Team. On your visit, you will have an opportunity to learn about the different aspects of kidney transplant and ask questions. Testing may be done at your initial visit for evaluation. These tests will help us look at your kidney function, other possible medical conditions, and give us information about your current state of health. Initially we will draw blood, do an EKG, and a chest X-ray. Sometimes depending on your health history, other tests may be needed to clear you for kidney transplant. If other tests are needed, we will order these tests to be done at a later time. Some of the following tests may be included as part of your evaluation:

Clinical Laboratory Testing     

Complete Blood Count Type and Screen Chemistry profile with liver function tests Stool Guaiac Prostate screening antigen (PSA) for males

Diagnostic Testing        

Chest X-ray Dexa scan for post-menopausal women Complete abdominal ultrasound Mammogram (women over 40) Colonoscopy for patients over 50 Pelvic exam/Pap smear for women Electrocardiogram Echocardiogram

Immunogenetic Testing Human Lymphocyte antigen – A, B, DR, Panel Reactive antibodies (PRA) are important in the matching of a donor’s kidney to your immune system.

Dental Exam A dental examination and clearance by a dentist is necessary to rule out any infection that may be present.

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Additional Testing             

Coagulation Profile (for patients with clotting problems) ACA IgG/IgM Activated Protein C resistance Prothrombin gene mutation Factor V Leiden Methyltetrahydrofolate reductase Protein C and S Lupus serologies (for patients with history of Lupus) Lupus anticoagulant Anti DNA Antinuclear Antibody C3, C4, CH50 complement Sedimentation rate

Viral Screening         

HIV HTLV RPR CMV EBV HBsAg HBsAb HBcAb HCV

Cardiac Screening Cardiac stress testing or catheterization may be necessary on some patients predisposed to cardiac disease and/or with previous history of coronary artery disease.

Abdominal Screening CT scan of abdomen/ pelvis to rule out vascular calcifications maybe ordered if necessary for older and /or diabetic recipients. Remember, other tests may need to be done based on the results of these tests. You will be notified about your results and any additional testing needed.

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Selection Committee Decision The selection committee is made up of the members of the multidisciplinary transplant team. Once the necessary tests and consultations are complete, the kidney transplant selection committee will meet to discuss your evaluation and decide whether transplant is right for you. You will be notified of their decision. There is a possibility that a complete evaluation shows that a kidney transplant is not the right option for you at the current time, and you will be informed of the reason behind such a decision.

Listing If the selection committee decides that a kidney transplant is the best treatment option for you, and you have met our selection criteria for transplant, you will be placed on a national waiting list for kidney transplantation after your insurance company gives us authorization to put you on the list. If you are placed on the list, you will have regularly scheduled appointments to be seen in the clinic. You may be given goals to meet in order to qualify for kidney transplant listing. You may also be given a time limit to meet these goals. You may wish to be listed at more than one transplant center. Each transplant center decides who it accepts as a candidate and may decline patients who are listed at other centers. They may also require you to repeat many of the tests done during your evaluation at Duke. Should you decide that being on several different transplant centers’ waiting lists is right for you, you will need to travel to those centers to meet with their team and meet their requirements.

Expectations after listing  The waiting period begins on the day of your listing  The waiting period for a kidney is so uncertain  It is important to remember during this time that no one has any control over when donor kidneys become available  We urge you to be patient, learn relaxation techniques, and other resources to help cope with the stress and uncertainty of waiting for an available kidney  You will be seen at Duke about every 12- 24 months until you receive a transplant  We encourage you to continue working as long as possible. If you are unable to work while on dialysis, you can use this “waiting time” to take classes at local community college, contact your Vocational Rehabilitation office, and make other plans to return to the workforce after your transplant  Remember your eligibility for disability payments will likely be reviewed one to three years after transplant and some benefits may end  While you are waiting, we strongly encourage you to remain as active as possible. Regular physical activity or exercise will help build your strength and endurance in preparation for your transplant and increase your chances to do well afterward  It is very important that you contact our office with any changes such as your phone number, address and insurance coverage. You must also contact us if you will be away from home so we can locate you in case a kidney becomes available  If you are hospitalized or your disease worsens you must contact your coordinator. Any medical changes may alter your status on the waiting list LAST UPDATE 11/20/2012 Before your Transplant

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Waiting for a Transplant The waiting period for a kidney is so uncertain and is the cause of much anxiety, frustration and discouragement. It is important to remember during this difficult time that no one has any control over when donor kidneys become available. We urge you to be patient, learn relaxation techniques, and other resources to help cope with the stress and uncertainty of waiting for an available kidney. You will be seen at Duke about every 12 – 18 months until you receive a transplant. While you are waiting, we strongly encourage you to remain as active as possible. Regular physical activity or exercise will help build your strength and endurance in preparation for your transplant and increase your chanes to do well afterward. We also encourage you to continue working as long as possible. If you are unable to work while on dialysis, you can use this “waiting time” to take classes at local community college, contact your Vocational Rehabilitation Office, and make other plans to return to the work force after your transplant. Remember, your eligibility for disability payments will likely be reviewed one to three years after transplant and these benefits may end.

Preparing for a Transplant We want to help you and your family prepare for your transplant. Making plans to deal with your needs before your transplant can reduce the amount of stress you will have to cope with during the recovery process. You will have to make some changes in your plan over time as your situation changes. Please keep us up to date on changes as they occur. When you are called to come to the hospital for your transplant, it is vital that we be able to contact you quickly at any time of the day or night. You will need to have a reliable plan for getting to the hospital on short notice. You will also be coming back to the clinic as often as once a week after your transplant. You need to plan in advance who can help you get here. The following questions are to help in planning for your transplant. Please be thinking about these questions carefully and create a plan. 1) 2) 3) 4) 5) 6) 7) 8) 9)

How can I make sure my Transplant Coordinator can contact me at any time? How will I get to the hospital when I’m called for transplant? Who will take care of my children, home (pay bills, maintenance), and pets? Who will stay with me and assist in my care when I go home after discharge? Who will drive me to Duke for clinic appointments before and after my transplant? Who will pay for my transplant? How much are my deductibles or co-payments for doctor visits and medications? How will I pay for my medications after transplant? What are my concerns about my situation, my family and my ability to prepare for transplant?

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Kidney Donation and Selection of Donor Organs Before a donor kidney is accepted for transplant at Duke Hospital, it is thoroughly evaluated. This evaluation of the living or deceased donor includes examination of the donor’s medical history, social history, and lab tests. Donors are carefully tested to be sure as possible that they have no transmissible diseases, such as HIV, hepatitis, or cancer. These are three circumstances that can lead to kidney donation: Living Donation A family member, friend, or another person willing to donate a kidney to you must undergo a complete medical evaluation to ensure that they would be a healthy donor. UNOS Standard Criteria Donation (SCD) A deceased donor who has been declared brain dead but their heart still functions. UNOS Donation after Cardiac Death (DCD) Donation from a donor who’s heart has irreversibly stopped beating. A kidney from this type of donor has an increased chance of delayed graft function and blood clot in the major artery going to the kidney.

UNOS Extended Criteria Donor (ECD) There is a shortage of deceased donor kidneys (kidneys donated by the family of a person who died), and there are many more people waiting to receive a deceased donor kidney than there are kidneys donated every year. One way to increase the supply of deceased donor kidneys is to use “extended criteria donors”. Extended criteria kidney donors are either older or have specific health problems that might affect how their donated kidneys would work after the kidneys were transplanted into recipients. ECD kidneys come from donors who:  Are over the age of 50 and have two or more of the following: o The donor died from a cardiovascular accident (stroke) o The donor had a medical history of hypertension (high blood pressure) o The donor had a serum creatinine of 1.5 or higher **All donors who are age 60 and above are considered extended criteria donors. ** Every kidney offered from an ECD donor is biopsied and carefully evaluated by the transplant surgeon. We believe that these kidneys will provide adequate function for the recipients to stop dialysis. However, they have an increased chance of delayed graft function.

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CDC High Risk Donors Sometimes we have donors that may be considered “high risk.” Risk factors may include past medical history or other behavioral factors. There is a potential risk which includes, but is not limited to, the transmission of hepatitis, HIV (the virus that causes AIDS), or other infections. Even though tests are negative, the donor is considered to be at an increased risk for transmitting HIV or other infectious diseases based on the Behavior/History Exclusionary Criteria established by the Center for Disease Control (CDC) in 1994 as listed below: 1) Men who had sex with another man in the preceding 5 years 2) Persons who report non-medical intravenous, intramuscular or subcutaneous injection of drugs in the preceding 5 years 3) Persons with hemophilia or related clotting disorders who have received human derived clotting factor concentrates 4) Men and women who have engaged in sex in exchange for money or drugs in the preceding 5 years 5) Persons who have sex in the preceding 12 months with any person described in items 1-4 above or with a person known or suspected to have HIV infection 6) Persons who have exposed in the preceding 12 months to known or suspected HIVinfected blood through percutaneous inoculation or through contact with an open wound, non-intact skin, or mucous membrane 7) Inmates of correctional systems (this exclusion is to address issues such as difficulties with informed consent and increased prevalence of HIV in this population) If you are offered an organ from a donor who is considered a CDC high risk donor, as defined above, or an organ that has other high risk factors, this will be discussed with you when you are called with an organ offer, and your surgeon will fully explain the risks prior to surgery. Consent to use this type of donor organ will be obtained from you at that time.

Hepatitis C Donor If you have tested positive for Hepatitis C virus, and have been waitlisted as a kidney recipient, you may choose to receive these types of donors. These donors are also considered high-risk, in addition to having the potential for transmission of other hepatitis C viral strains, which may further compromise your kidney and health condition.

Donor organ options If you agree to be considered for organs from an expanded criteria (ECD) donor, donation after cardiac death (DCD) donor, or a high-risk donor you will continue to be a candidate for a standard criteria donor kidney. However, ECD organs will often become available sooner. You will always have the option to decline an ECD, DCD, or high-risk donor kidney at the time these organs are offered. If you decline, it will not affect your status on the UNOS waiting list.

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Donor Recipient Matching Blood Type and Antigens Donor kidneys are matched with recipients according to the following criteria:  Blood type: (O, A, B, AB)  HLA antigens: proteins located on cells of the kidney and blood cells You are tested for six HLA antigens and they are the basis for creating a match for a donor organ and recipient. If your transplanted kidney has some of these proteins (antigens) then your body is less likely to reject the kidney. Length of time on waiting list Each blood type carries an approximate waiting time: O 5-7 years A 3-5 years B 7 years AB 7years If you have a living donor, the only waiting time is the time it takes to have the donor evaluation completed.

When an organ becomes available Be Prepared Be sure to always notify our office of any changes in the contact phone numbers you provide to us not only for yourself, but for your designated family and friends who support you so that we can reliably contact you when the time comes. It’s also important to let us know if you are planning a vacation that will place you in a location that could impact your travel time to Duke Hospital should an organ become available for you. Talk with your family and friends about the importance of having a transportation plan in place so that when an organ becomes available, you will be able to respond quickly to our instructions to come to the hospital.

Hospital arrival When a donor match is identified for you from the waiting list, the transplant coordinator will call you. You will be given instructions about when and where to report to the hospital and when to stop eating and drinking. After you arrive, you will be admitted to the hospital and have preoperative blood tests and meet with your doctors before surgery to make sure everything is in place for a successful operation.

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The surgery In most cases, transplants go ahead as planned but there are instances when a surgery has to be cancelled at the last minute. Some of the reasons this might happen are:  After your blood tests and physical exam, your doctor determines you have a condition that would make having a transplant unsafe at that time.  The surgeon determines that despite best efforts and information, the kidney to be transplanted isn’t of high enough quality. An example may be that there was damage to the organ when it was removed from the donor.

Important contact information: Duke University Hospital Kidney Transplant Program Box 102347 Durham, NC 27710 Toll Free Local Fax

(800) 249-5864 Option 2 (919) 613-7777 Option 2 (919) 668-3407

For Fed-Ex or UPS delivery address please contact our office.

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Resources We want to help you and your family deal with concerns that may arise after your transplant. Your social worker, transplant coordinator, and physician can give you resources for your particular needs. The following list of resources may be useful.

Information and Resources Duke University Health System www.dukehealth.org www.organtransplant.duke.edu

Organ Donation United Network for Organ Sharing 1-888-894-6361 www.unos.org

Carolina Donor Services 1-800-200-2672 www.carolinadonorservices.org

Kidney Disease American Kidney Fund 1-800-729—6682 www.kidneyfund.org

National Kidney Foundation 1-800-622-9010 www.kidney.org

American Diabetes Association 1-800-DIABETES www.diabetes.org

Insulin Free World www.insulin-free.org

Transplant Information www.transplanthealth.com www.transplantliving.org/ www.transweb.org www.unos.org

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National Foundation for Transplant 1-800-489-3863 www.nft.org

Social Security Disability Hotline 1-800-638-6810 N.C. statewide information and assistance related to Social Security, Disability, or SSI Medicare County Department of Social Services (DSS): Medicaid persons with low income and few assets may apply in the county in which they reside for assistance with medical expenses. DSS also manages food stamps, AID to Families with Dependent Children, Fuel Assistance, and other emergency funds. 1-800-672-3071

Social Security Administration Assists with applications for retirement, survivorship, disability, and supplemental security income and Medicare benefits. 1-800-772-1213 Veteran’s Administration Benefits Office 1-800-827-1000 Veteran’s Affairs Medical Center (Durham) (919) 286-0411 N.C. Division of Veteran’s Affairs (919) 733-3851 N.C. Division of Vocational Rehabilitation A state-sponsored program that provides services to help disabled persons obtain jobs. Services include evaluation, special training, job counseling, and funding for services to help you (919) 733-3364 .

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NOTES AND QUESTIONS

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