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VCU Health System’s Hume-Lee Transplant Center Welcome to the Hume-Lee Transplant Center’s Kidney & Kidney Pancreas Transplantation Program 804-828-4104 1-800-762-6161, ext. 4104 Kidney Transplantation Introduction 3 Before Your Transplant About your Kidneys 4 Reasons for Transplant 5 What is a Kidney Transplant 7 Living Kidney Donation 8 Kidney and Pancreas Transplant Evaluation 12 Preparing for a Transplant 14 The Transplant Team Meet the Transplant Team 16 Surgeons 17 Clinic 18 Listing for Transplant 19 Kidney Transplant Surgery 20 Medications after Transplant 25 Rejection 28 Post-Transplant Coordinators 29 Resource Directory 31 Directions 34 Parking 35 Comfort, Safety, and Security 36 Lodging 37 Fundraising Opportunities 38 Notes 39 Page 2 Introduction Introduction Welcome to the VCU Medical Center’s Hume-Lee Transplant Center. The Hume-Lee Transplant Center has been performing kidney transplants since 1967 and performs one hundred or more kidney transplants a year. Our Center has performed more than 1800 kidney transplants, over 90 combined kidney and pancreas transplants, and 7 pancreas after kidney transplants. The transplant team is here to assist you in your decision about transplantation. Kidney transplantation is not a cure for End Stage Renal Disease (ESRD), but an alternative treatment choice for your kidney failure. The other options include hemodialysis and peritoneal dialysis. This booklet will discuss kidney transplantation in detail, so that you can make an informed decision if transplantation is the right option for you. During kidney transplant surgery, a surgeon will place a healthy human kidney (donor kidney) from another person into your body to do the work that your failing kidneys can no longer perform. A transplanted kidney comes from either a recently deceased organ donor or a living donor. Enclosed in this booklet you will find information regarding your kidney transplant evaluation. We hope this information will help answer the many questions you may have regarding your upcoming evaluation. This information will be reviewed by your kidney transplant coordinator. Please write down any questions you may have in the space provided in the booklet. This will help you remember to discuss them with the members of the transplant team. From left to right: Daniel Maluf, MD, transplant surgeon, Marc Posner, MD, Professor & Chairman of Transplant Surgery & Director Hume-Lee Transplant Center, Pamela Kimball, PhD, Director HLA lab, H.M. Lee, MD, Adrian Cotterell MD, transplant surgeon, Anne King, MD, Medical Director Renal Transplant Program, Valeria Mas, PhD, and Robert A. Fisher, MD, Director Liver Transplant Program Page 3 About your Kidneys What The Kidneys Do Your kidneys are located in your back, one on each side of the spine. The lower ribs protect the kidneys from injury. Each kidney is about the size of your fist. The kidneys’ major jobs are to: • Filter waste products and excess water out of the blood • Make hormones that help regulate blood pressure and the production of red blood cells • Control the balance of water, salt, and acid in the body What Happens When Kidneys Fail? • The kidneys are not able to clean waste products from the blood • Waste products build up in the blood causing you to feel sick • This build up of waste products is called “uremia” Page 4 Reasons For Transplant Reasons for Transplant End-stage renal disease (ESRD) occurs when kidney damage is so severe that dialysis or a kidney transplant is needed to control symptoms and prevent complications and death. ESRD often occurs after kidney damage has been present for 10 years or more. Diabetes and high blood pressure (hypertension) are the most common causes of ESRD in the United States. Kidney failure can be measured by how well the kidneys are able to filter wastes from the blood (glomerular filtration rate or GFR). ESRD usually occurs when the GFR falls to 10% to 15% of normal values. Any condition that results in end-stage renal disease includes, but is not limited to: Diabetes Mellitus Hypertension Glomerulonephritis Pyelonephritis Polycystic Kidney Disease Systemic Lupus Erythematosus Obstructive Uropathy Congenital urinary tract defects Alport's Disease Reflux Nephropathy Interstitial Nephritis IgA Nephropathy Goodpasture's Syndrome Hemolytic Uremic Syndrome Chemical Nephrotoxicity Renal Artery Emboli Sickle Cell Nephropathy Page 5 Reasons For Transplant What the Pancreas Does • Endocrine functions and insulin. Groups of cells scattered throughout the pancreas produce insulin; a hormone that influences the making of proteins and certain fats, storage of certain fats, and the body's use of sugar (glucose). Diabetes is the most common disease associated with abnormal production of insulin and high blood sugar. • Exocrine functions and digestion. The pancreas produces digestive juices (enzymes), including amylase and lipase. These enzymes are emptied from the pancreas into the small intestine through tubes called the pancreatic ducts. Indications for Pancreatic Transplantation Type I (insulin-dependent) diabetes with advanced kidney disease Those who have complications of type I (juvenile onset) diabetes and have relatively normal kidney function Those who have diabetes and kidney failure Page 6 What is a Kidney Transplant What is a Kidney Transplant The goal of transplant is to provide you with a single functioning kidney to perform the work that your kidneys are no longer able to do. A successful transplant can return you to a state of good health. The kidney you will receive may be a living gift from a member of your family or a friend. If no living donor is available, you may receive a kidney from someone who has died and donated their kidney (deceased kidney). Hemodialysis or peritoneal dialysis can eliminate wastes from your body and remove excess chemicals from your blood. But, unlike the kidneys, dialysis can’t produce vital hormones. Through transplantation, you will get a new kidney that performs all of these vital functions. Purpose Kidney transplantation is a procedure that places a healthy kidney from another person into your body. This one new kidney does all the work that your two failed kidneys cannot do. How it Works A surgeon places the new kidney inside your body in your lower abdomen. The surgeon connects the artery and vein of the new kidney to your own artery and vein. Your blood flows through the new kidney and makes urine, just like your own kidneys did when they were healthy. The urine flows into the bladder through the ureter of the kidney which is surgically attached to the bladder. The new kidney may start working right away or may take up to a few weeks to make urine. Your own kidneys are usually left where they are, unless they are causing infection or high blood pressure. The Kidney/Pancreas Transplant Program offers Living donor kidney transplant with open or laparoscopic donor nephrectomy Deceased kidney transplants Paired exchange kidney transplants Desensitization protocol for recipients that are highly sensitive Simultaneous pancreas-kidney (SPK) transplants Pancreas after kidney (PAK) transplants Pancreatic islet cell transplants Page 7 Where Kidneys Come From Where Kidney and Pancreas Transplants Come From: You may receive a kidney from: • A family member. This is called a living related donor. These are often the most successful transplants. • A spouse or very close friend. This is called a living unrelated donor. • A person who has recently died. This is called a deceased donor. You may receive a pancreas from: • A person who has recently died. This is called a deceased donor. Living Kidney Donation Donating a kidney to a loved one who has kidney failure can be a very positive experience for the donor, and many stories can be told about the heroic people who gave a loved one the greatest gift possible, the gift of life. What is living donation? Living donation takes place when a person donates an organ to be transplanted into a loved one in need. The donor is most often a close family member, such as a parent, child, brother or sister. A living donor can also be a more distant family member, spouse or friend. Anyone interested in being a donor for you can come with you at the time of your appointment to be evaluated as a donor. What are the advantages of living donation? Living kidney transplantation has a number of advantages over kidney transplantation from a deceased donor: 1. Since the living kidney donor is usually a close relative of the person getting the transplant, there is a better chance of a good genetic match and less chance of rejection. As a result, living donor kidneys tend to last longer. In fact, living donor kidneys last twice as long as deceased kidneys. Lower doses of immunosuppressive drugs can be used with fewer side effects. Page 8 Living Kidney Donation 2. The transplant can be scheduled ahead of time, something that cannot be done if you are on a waiting list for a deceased kidney. This allows you to plan for absences from work, childcare, and other social concerns. 3. Kidneys that come from living donors generally begin to function immediately after the transplant, while deceased kidneys may take several days or weeks before they begin to function normally. The kidney usually begins to work immediately, even in the operating room. There is a very low rate of Delayed Graft Function (DGF) in living transplants. A deceased kidney may not work right away for several reasons. This is known as acute tubular nephrosis (ATN). 4. While the national waiting time can be as long as six years, patients who have a living donor wait an average of just 88 days for their transplant! This may help assure that you are in better health than after a long wait and declining health. 5. Seventeen people die every day waiting for organ transplants. Living donation helps people waiting for deceased kidneys by lowering the number of people on the waiting list. 6. Kidneys from living donors do not need to be transported from one site to another, so the kidney is in better condition when it’s transplanted. Who can become a living donor? • To qualify as a living donor, a person must be physically fit, in good health and free from high blood pressure, diabetes, cancer, kidney disease and heart disease. The donor is carefully evaluated by physical examination, tests to determine kidney function and studies to show the presence of two normal kidneys. • Individuals considered for living donation are usually between 18-60 years of age. • Gender and race are not factors in determining a successful match. • The decision about whether to accept the donor is then made by the health care team at the transplant center. Page 9 Living Kidney Donation How does living donation affect the donor? Studies have shown that one kidney is enough to keep the body healthy by removing wastes and excess fluid from the blood. Living donation does not change life expectancy, and after recovery from the surgery, living donors can continue to lead normal lives. The usual recovery time after the surgery is short, and donors can generally resume their normal home and work activities within 2 to 6 weeks. Suppose someone decides against being a living donor? The decision to become a living donor is voluntary and should be free from internal or family pressures. Individuals have the right, after discussing and considering the facts, to decide that kidney donation is not for them. Likewise, people who have kidney failure have the right to decide that they do not want a transplant. The patient must live with the disease, and has the right to decide what is to be done. This decision, as well as the donor's, is respected provided it is made after a complete discussion of the available choices and possible results. How much does living donation cost? Who pays? The costs of the donation, which include laboratory, x-ray and doctors' and hospital charges, are paid by the recipient's insurance. There is no cost to the donor. However, the donor is not paid for time off from work, or travel expenses to or from the hospital and clinic. Some employers may allow this time to be taken as sick leave. Are transplants from living donors always successful? It is important to realize that, although living related kidney transplants are highly successful, problems may occur. Sometimes, the kidney is lost to rejection, or the original disease that caused kidney failure may come back in the transplant, causing it to fail. What if I Don’t Match My Recipient? If you are not compatible with your recipient for reasons such as blood type incompatibility or crossmatch incompatibility, there are other options available to both the donor and recipient. Page 10 Living Kidney Donation Donation to the list (Living/Deceased Donor Exchange Program) This program allows incompatible living donors to donate a kidney to a compatible recipient who is on the waiting list for a deceased donor kidney. In exchange for this donation the incompatible recipient is moved to the top of their blood group list on the deceased donor waiting list. They may remain in this position until they find a crossmatch compatible high quality organ. This guarantees them a shorter waiting time (usually less than 6 months) and a high quality donor organ. Paired Kidney Exchange Kidney paired exchange provides organs to patients who have a willing, designated donor who is not compatible. A kidney from such a donor is matched to, and transplanted into the recipient of a second incompatible donor-recipient pair. The transplants are performed simultaneously. While it is difficult to find a compatible exchange pair, the VCU team has developed a program to identify these potential pairs. Desensitization Protocol About 30% of patients who are waiting for a kidney transplant are sensitized, meaning that they have developed harmful antibodies in their blood against foreign tissue. These antibodies can develop through previous exposure to foreign tissue resulting from pregnancies, previous transplants, or blood transfusions. This may cause patients to wait three or four times longer than unsensitized patients for a compatible deceased kidney. Many sensitized patients have living donors that are willing to give them a kidney, but the transplant has little chance of success. The recipient’s blood, when mixed with the donor’s blood, reacts against the donor’s cells because of the antibodies. This is a positive crossmatch, which means that the recipient will likely reject the kidney immediately following transplant. A negative crossmatch is needed before a transplant can be performed. There is a process that allows the antibodies to be removed from the recipient’s blood called desensitization. This involves the patient undergoing plasmapheresis treatments to help remove the harmful antibodies from the blood. Your doctor will discuss this option in more detail with you if it is needed. Page 11 Kidney and Pancreas Transplant Evaluation Laparoscopic Donor Nephrectomy • This new procedure has greatly improved the surgical experience for the donor. This surgery will leave the donor with 3 small scars and 1 large scar where the kidney is removed. • The donor will have less pain and will recover more quickly • The length of stay for the donor has been reduced to 1-3 days • Many donors return to work within 2-4 weeks of the surgery Kidney and Pancreas Transplant Evaluation Several tests are done to be sure you are medically able to safely undergo transplant surgery. These tests can be scheduled at VCU Medical Center or, in some cases, at your local hospital. I. Evaluation Appointment: You will meet the members of the transplant team: Transplant Nephrologist/ Surgeon Transplant Coordinator Transplant Social Worker Transplant Financial Coordinator II. Required Tests: All individuals must have the following tests: • HLA and blood typing to match a kidney to you • Laboratory tests for infectious diseases, such as HIV, Hepatitis B, Hepatitis C • Chest x-ray and EKG (Electrocardiogram) to be performed at our hospital. • Dental clearance • Tuberculosis skin test (PPD) Page 12 • Women must have a pap smear and baseline mammogram Kidney and Pancreas Transplant Evaluation III. Additional Tests: Additional tests may be required during or after the initial evaluation, depending upon your medical history. Additional tests and images may include: • Ultrasound of your gallbladder may be needed to check for gallstones • Voiding cystourethrogram (VCUG) may be needed to see if your bladder empties normally • Computerized tomography (CT) scans may be needed • Magnetic Resonance Imaging (MRI) • Doppler studies to assess blood flow • Heart testing such as echocardiogram, stress thallium test or cardiac catheterization if there is a history of heart disease, any heart related illnesses, if there is a history of diabetes or you are over age 50 • Colonoscopy to check for cancer Once you have completed the medical evaluation and are found to be an acceptable candidate for transplant, your information is sent to your insurance company for approval. Once we have obtained financial clearance, your name will be placed on the waiting list. Your transplant coordinator will notify you and your dialysis center or nephrologists. Your Role in a Successful Transplant You are receiving a gift of life with your new kidney. It is your responsibility to care for that gift. If, after your evaluation, it has been determined that a kidney transplant is the best treatment for your disease, there are many considerations you should be aware of. Among the most important of these is your commitment to change any harmful habits that may damage your new kidney. Our program requires potential transplant recipients to be substance free for 6 Page 13 Preparing For Transplantation months before being listed for a kidney transplant. We expect that you will continue to avoid drugs and alcohol while you are on the list and after your transplant. We strongly encourage smokers to quit before their transplant. Marijuana interferes with the immunosuppressive medicines and causes them to be inactive. It should be avoided at all costs. Preparing For Transplantation Waiting for a kidney to become available can take on average 4-6 years. It is very important for you to maintain your health during that time. We strongly encourage you to do the following: • Maintain a healthy diet • Exercise: If possible, stay active. You don't have to refrain from activities you enjoy. If you have questions about whether a particular activity is right for you, talk with your physician. • Prepare for the Call: Be aware that the call for transplant may come at any time. Our surgeons are available twenty four hours a day, seven days a week, every day of the year to transplant you when a kidney becomes available. Make sure that you have a plan for items to take with you, and make arrangements for children or pets so you can leave with a moment’s notice. Please bring the following things with you when you come to the hospital for your transplant: o A list of all the medications you are taking o All of your diabetic medications and supplies, including glucometer (glucose machine) o If you are on an insulin pump, you should bring your pump and supplies o Loose comfortable clothes and comfortable shoes for you to wear after your surgery o A copy of your insurance cards o If you are on peritoneal dialysis, you should bring enough supplies for 3 or 4 days o Blood Pressure cuff, if you have one Page 14 Preparing for a Transplant • Please inform your transplant team of any insurance or phone number changes. This insures that the team can proceed with the transplant when the time arrives! You must have a working telephone. Team members also need the telephone numbers of friends, relatives and neighbors, who can locate you when needed. Please notify us immediately if your telephone number, insurance or address changes. • Notify your transplant team of any health changes while you are waiting. Notify us of any recent illness, pregnancy, blood transfusions, or infection. • Dealing with Pre-Transplant Stress: Share your feelings if you feel depressed or uneasy. The transplant team can answer questions, and help alleviate fears. Stay active and spend time with family and friends. The four most important factors during your wait time on the transplant list are: 1. Have your monthly serum drawn at your dialysis center or your doctor’s office 2. Notify your coordinator of telephone number or address changes 3. Annual transplant visits to ensure your medical health has not changed 4. Notify your coordinator of insurance changes Meet The Transplant Team During your first visit you will meet the members of the transplant team. Page 15 The Transplant Team I. Pre-Transplant Coordinators • Your transplant coordinator will be one of your contacts at our Center. • This nurse will discuss transplantation with you and your family and answer any questions you may have during your appointment. • Office hours are Monday through Friday 8:00am-4:30pm. • Office phone number is 804-828-4104. If your coordinator does not answer, please leave a voice mail message. We will return your call as soon as possible. Please allow 24-48 hours for a response to nonemergent calls. Every call is important to us so we thank you for your patience and cooperation. II. Transplant Nephrologist • Anne L. King, M.D., Professor of Medicine and Surgery is the Medical Director of the Kidney and Pancreas Transplant Program. • This is a kidney doctor who specializes in transplants. • This doctor will care for you before and after transplant. • This doctor will perform a complete physical exam and discuss with you what tests are needed for you to have a transplant. III. Financial Coordinators • The financial coordinators will verify your insurance eligibility and benefits. • They will screen you for financial assistance, if needed. • They can provide information regarding resources and fund raising, if needed. • They will discuss hospital and physician financial obligations. • Financial clearance is necessary to place your name on the transplant list or proceed to living donor transplantation. • They can assist you with billing or insurance problems. Page 16 • Please inform your transplant coordinator immediately of any insurance changes. • In some instances, your insurance company will require a referral from The Transplant Team your primary care physician before your transplant evaluation. IV. Social Worker/Psychologist • The focus of the social worker is to help recipients, donors, and family members meet and go through each step of transplantation in a way that is manageable and healthy. The social worker can assist with psychosocial issues during all phases of transplantation. • The social worker/psychologist will discuss various issues such as support systems, coping mechanisms, and past history of medical and social problems. V. Transplant Surgeons • We currently have 5 kidney transplant surgeons. This is a surgeon who specializes in performing organ transplant surgery. 1. Marc P. Posner, M.D., Professor & Chairman of Transplant Surgery, Director, Hume-Lee Transplant Center 2. Robert A. Fisher, M.D., Director, Liver Transplant Program, Professor of Surgery and Pediatrics 3. Adrian Cotterell, M.D., Associate Professor of Surgery 4. Daniel Maluf, M.D., Associate Professor of Surgery 5. Amit Sharma, MD, Assistant Professor of Surgery Transplant Clinic • Our clinic is in the Gateway Building 7th floor. Page 17 The Transplant Clinic • The clinic is open from 8:00AM to 4:30PM, Monday through Friday. • If you need to schedule an appointment, please call 804-828-4104. • If you do not have a follow up appointment, please call our office to schedule one. How often will you come for a clinic visit after transplant? • The first 4-6 weeks after transplant you will visit the clinic 2-3 times a week. • You will be told by your post transplant coordinator if your visits will vary from this schedule. • After you are discharged from the hospital, clinic visits are on a set schedule depending on how well you are doing. • Clinic visits are by appointment only unless you are ill. In case of illness, please call to let us know you are coming to the clinic. • Following directions after transplantation is very important to keep your new kidney healthy. Keep all of your appointments! What Happens When You Are “Listed” With UNOS • At this point your renal disease has progressed to the point that your kidneys are no longer able to perform the normal functions of a healthy kidney. • Being “listed” means that you have been placed on a national waiting list for a deceased donor kidney. • A frequently asked question is “How long will I wait for a kidney?” Unfortunately, we cannot determine that exactly. National waiting time is currently as long as 4 to 6 years on average. • Currently the United Network for Organ Sharing (UNOS) designates how deceased organs are distributed. Page 18 Listing for Transplant • UNOS policy 3.2.2 allows candidates to be waitlisted at multiple transplant centers. These transplant centers may be located within the same Organ Procurement Organization (OPO) service area or in a different OPO service area. With the transplant wait times increasing, many people are going to multiple transplant centers to be multiple-center listed in hopes to shorten their waiting time. There are some studies to suggest it shortens waiting times, but there are no guarantees that multiple listing will shorten your waiting time due to other factors, such as antibodies and genetics. If you wish to be multi-listed, you should first check with your insurance carrier to see if they will pay for additional evaluations. • If you have accumulated time with another transplant center, you have the option of transferring that time from center to center. You can choose to transfer your time but remain listed at a center and begin to accumulate time again at day one or be removed from that centers list altogether. A written request signed by you will be submitted to UNOS regarding these changes. Note: Your transplant coordinator will send a letter notifying you, your dialysis center, and your nephrologist when you have been listed. How is a Kidney Selected? Special tests are used to match the blood and tissue type of a donor with the blood and tissue type of the recipient. First, blood typing or ABO typing is performed to see if the blood typing is compatible. This is followed by HLA typing (tissue typing) and crossmatching. HLA typing shows whether the donor’s antigens match those of the recipient. Antigens are proteins found on all cells and can activate the immune system to fight a foreign substance, such as a new kidney. The final testing is called a crossmatch. The blood from the donor and recipient is mixed together and evaluated for reactivity. This test is done when a donor kidney is available. Your blood is mixed with the donor's blood. If there is no reaction (negative crossmatch) it means you are "compatible" with the donor. If there is a reaction (positive crossmatch), the kidney will not work for you because it is "incompatible" and will result in rejection. Page 19 Kidney Transplant Surgery If you are Blood Type You can accept a donor with Blood Type O O A A or O B B or O AB A, B, AB or O For persons with a living donor, an initial HLA typing and crossmatch is performed. Prior to transplant, a final crossmatch is performed to ensure there have been no changes and that transplantation is safe. If you are waiting for a deceased kidney, blood is sent in each month by the dialysis center or nephrologist’s office. This is so that the crossmatch can be performed on a current blood sample. It is very important our lab receives this monthly blood sample. We will contact you if we are not receiving it. Kidney Transplant Surgery I. When You Are Called For Surgery • Scheduled living donor kidney transplants report to the 5th floor of the Gateway Building. Your family will wait on Gateway 7th floor in the transplant clinic. • One of the transplant coordinators may call you at any time to come to VCU Medical Center for your transplant. We never know when a kidney will become available, so we could call you at any time of day or night. Our surgeons are available twenty four hours a day every day of the year, to be ready to transplant you. To reach you quickly, the coordinator must be able to get in touch with you! • The kidney can be stored only for a certain amount of time. A shorter storage time is better for the kidney. This is why you must come as quickly as you can when you are called in for the transplant. I. Questions the nurse coordinator will ask Page 20 Kidney Transplant Surgery 1. Are you available for transplant? 2. When were you last dialyzed? 3. Have you had any recent illness or infection? 4. Have you recently been pregnant? 5. Have you had a recent blood transfusion? 6. How long will it take you to reach the hospital? 7. When was the last time you had anything to eat or drink? III. When you arrive at the hospital • You will report to Gateway Building 5th Floor where you will be prepared for surgery. • Do not eat or drink anything. • Bring a list of your current medicines and insurance cards. • Your family will wait on Gateway 7th Floor Transplant Unit while you are in surgery. • The nurses will get you ready for surgery. An IV will be started and blood work drawn. Other tests that will be performed include: o EKG o Chest X-Ray o Updated history and physical exam IV. Cancellation of Surgery • If the physician finds a medical problem such as an infection or an incompatible crossmatch, the surgery cannot be performed, and you will be discharged home. V. Risk Factors A kidney transplant is major surgery. It has the same risks as any other major surgery. Page 21 Kidney Transplant Surgery • Bleeding • Infection • Developing blood clots • Sometimes the kidney does not work right away and needs time to recover. If this were to occur, you would be dialyzed regularly until the new kidney begins to work. VI. Possible Complications of Kidney Transplantation • Rejection of your new kidney. You will be placed on anti-rejection medication to try to prevent this from occurring, but it can still happen. • Typically rejection will happen within the first 6-12 months after transplant, but it may happen even years after your transplant. • This is why it is so important to take your medications as prescribed and follow up with your clinic visits and labs as scheduled. VII. What Happens During The Surgery • Once you are have received general anesthesia and have fallen asleep, the transplant surgeon will open the right or left side of the abdomen and connect the kidney. • It is not necessary to remove the old kidneys. • The surgeon attaches the donor blood vessels to the main vessels nearby, and the ureter is inserted into the bladder. • During surgery, a stent will be placed in your ureter. The purpose of placing this plastic tube is to protect the connection between the newly transplanted kidney and the urinary bladder. The stent may be removed approximately 6-12 weeks after your transplant. This can usually be done in an outpatient setting with mild sedation. • The surgery takes about 4 hours. VIII. After Surgery Page 22 Kidney Transplant Surgery • You will go from the operating room to the recovery room. From the recovery room, you will return to your room on the transplant unit. In special circumstances, you may go to the intensive care unit. • A tube called a foley catheter is placed in the urinary bladder during surgery. The catheter drains urine continuously, so that the bladder does not become too full. The catheter allows the doctors and nurses to measure how much urine the new kidney is producing. The urine may be blood tinged or have blood clots. This is normal after surgery. The catheter stays in for 5 days after surgery. • During surgery, an IV called a triple lumen IV is placed in a large vein near the collar. This IV stays in place for several days to give IV fluids and medicines. It also allows the doctors and nurses to measure your heart pressures and draw blood. • Pain medication is given through the IV. The pain medication is in a special pump that allows you to push a button and receive a pre-set amount of medicine. The pump is set only to deliver a certain amount of medicine at certain times- you cannot get too much. • Some patients will have a nasogastric tube (NG tube) placed through their nose into the stomach. This tube is to drain the stomach and reduce nausea and vomiting. • After surgery, the nurses encourage you to cough and breathe deeply. This is very important to help reduce the risk of developing pneumonia. • The nurses will get you out of bed the evening after surgery or the following morning. This is to reduce the risk of developing blood clots and pneumonia. You may progress to walking the hallway the day after surgery. • The usual length of stay in the hospital is 5 days. Some hospital stays may be longer, if complications arise. • You will learn about all of your medications and why you are on them. • While you are on the Transplant Unit please tell your family that you are not allowed any live flowers- there is a risk of infection for you! Also no children under the age of 12 are allowed to visit you- again because of the risk of infection to you! Page 23 Kidney Transplant Surgery Survival rates • Our adult patient and kidney graft transplant survival rates are consistently over 94% (www.ustransplant.org) for both living and deceased donor kidney recipients. Page 24 Medications after Transplant Medications After Transplant In an attempt to prevent your body from rejecting your new kidney you must take anti-rejection medicines daily. These are also called immunosuppressants. Additional medications may include anti-hypertensives (blood pressure pills), antibiotics, anti-virals, anti-fungals, and medicines to prevent stomach ulcers. You will be on anti-rejection medications as long as you have a functioning transplanted kidney. You are responsible for taking the medications that have been prescribed for you. You should talk to your physician, pharmacist, transplant nurse, and/or coordinator to understand fully: • the name and purpose of each medication • when to take each medication • how to take each medication • how long to continue taking each medication • side effects of each medication • what to do if you forget to take a dose • when to order more medication so it doesn't run out • how to order or obtain medications • what to avoid while taking medications At home, you will continue taking most of the medicines you began taking in the hospital after the transplant surgery, especially the anti-rejection medications. Your immune system recognizes the new kidney as foreign and will try to reject it. Therefore, your immune system must be controlled with immunosuppressive medications. You probably will have to take one or more of these drugs for the rest of your life, in addition to other medications. REMINDER: Never stop taking medication or change the dosage without a physician's approval. What is An Anti-Rejection Medicine? Page 25 Medication After Transplant Rejection is the body’s natural response against the transplanted kidney. The anti-rejection medications prevent the immune system from working against the kidney. In the event of a rejection episode, more powerful medications may be required. This may require a stay in the hospital. If the rejection cannot be reversed, you will return to dialysis. Usually, you can go back on the transplant list, if desired. If you have not been compliant with your medications, re-transplantation may not be an option. What are the Anti-Rejection Medicines? CELLCEPT® (mycophenolate mofetil) CELLCEPT fights rejection by decreasing the number of white blood cells the immune system produces. GENGRAF®, NEORAL® (cyclosporine microemulsion) GENGRAF is used to prevent rejection of a transplanted organ. It is used for long-term (perhaps lifetime) immunosuppression. PROGRAF ®(tacrolimus) PROGRAF is prescribed to prevent or treat organ rejection in people who have received kidney transplants. It is used for long-term (perhaps lifetime) immunosuppression. DELTASONE® (prednisone) DELTASONE is a corticosteroid that helps prevent and treat rejection of transplanted organs. It will be used for long-term (perhaps lifetime) immunosuppression or, in higher doses, for treatment of rejection. RAPAMUNE® (sirolimus) RAPAMUNE is used to prevent or treat organ rejection in people that have received a transplant. It is used for long-term (perhaps lifetime) immunosuppression. These medications can be very expensive, as much as $2,500 a month. These medications are strong and like all medicines, have side effects. Anti-rejection medications are started at higher doses because the chance of rejection is greater the first three months after transplant. Gradually, the doses decrease and the chance of side effects lessens. Page 26 Preventing Transplant Rejection Transplant Medications and their side effects Immunosuppressive Drug Possible Side Effects Cyclosporine (Gengraf®, Neoral®) *Hyperlipidemia (high cholesterol) *Hyperglycemia (high blood sugar) *Hyperkalemia (high potassium) *Stomach upset *Swollen gums *Kidney toxicity *Tremors Prevents organ rejection Prednisone Prevents organ rejection CellCept® (Mycophenolate) Prevents organ rejection *Delayed wound healing *Hyperlipidemia *Hyperglycemia *Increase in appetite/weight gain *Skin changes *Edema (swelling) *Diarrhea *Nausea and Vomiting *CMV viremia Rapamune® (Sirolimus) *Nausea, vomiting, pruritus (itching) *Hyperlipidemia Prevents organ rejection, inhibits divid- *Thrombocytopenia ing cells *Neutropenia Prograf® (Tacrolimus) Prevents organ rejection *Tremors *Headaches *Diarrhea *High blood pressure *Hyperglycemia *Hyperkalemia *Nausea, vomiting *Kidney Toxicity Page 27 Rejection The greatest cause of rejection is patients not taking their medications as prescribed. It is extremely important for you to take your medications every day as you are directed. Types of Rejection 1. Hyperacute: An immediate, rare type of reaction due to crossmatch or blood type incompatibility. There is no treatment for this type of rejection. 2. Accelerated: Rejection that happens in the first few days after transplant. This type of rejection is difficult to treat with current immunosuppressant medications and may lead to early loss of the transplant. 3. Acute: Usually occurs with the first 3 months after transplant. This type of rejection may be treated with pulse steroids (high doses of prednisone), Thymoglobulin or OKT3. Acute rejection is very successfully treated. 4. Chronic: This type of rejection occurs slowly over months or years after transplant. Treatment may include medication changes, but is a leading cause of kidney transplant failure. What are the Signs and Symptoms of Rejection? The most common symptoms of rejection are: Decrease in Urine Output Fever over 100*F Pain or Swelling over the Kidney Rise in Blood Pressure If your body begins to reject your new kidney, you may not feel ill, but your kidney function will weaken. This can be detected by laboratory tests, which is one of the reasons your clinic appointments are so important. Infections Page 28 Post– Transplant Coordinators Immunosuppressive medications interfere with your natural immunity; therefore, you will be more susceptible to infections after transplant surgery. Infections can become very serious and require immediate treatment. Please notify your nurse or doctor as soon as possible if you have an infection. Learn how to recognize the signs and symptoms of infections before you leave the hospital. Post-Transplant Coordinators I. Inpatient Coordinator The inpatient coordinator helps with your discharge planning, arranging for medication orders, teaching you about your medications, and answering any questions while you are in the hospital. II. Post -Transplant Coordinators • After your discharge please contact your outpatient coordinator for any questions, concerns or illnesses. For common colds or general illnesses, contact your primary care physician. • In the event of an emergency after hours please call the Transplant Clinic and a coordinator will return your call. Calls after hours are for serious problems that cannot wait until the clinic opens. The phone number for the transplant clinic is 804-828-4104. • We require at least a one week notice for medication refills. It is your responsibility to keep track of your medicines. Page 29 UNOS Information UNOS Information Our Transplant Clinic works closely with LifeNet and its governing body, The United Network for Organ Sharing (UNOS). UNOS is the organization that oversees all transplantation services in the United States and also formulates the rules and regulations for organ transplantation. UNOS provides a toll-free services line to help transplant candidates, recipients and family members understand organ allocation practices and transplantation data. You may also call this number to discuss a problem you may be experiencing with your transplant center or the transplantation system in general. The toll-free patient services line number is 1-888-894-6361. Page 30 Resource Directory Resource Directory American Association of Kidney Patients www.aakp.org Air Care Alliance www.aircareall.org Airlifeline www.airlifeline.org Telephone 877-AIR-LIFE American Diabetes Association www.diabetes.org American Heart Association www.americanheart.org Telephone 800-aha-usa1 American Medical Association Organ Donation Website: www.ama-assn.org/ama/pub/category/1945.html American Kidney Fund www.akfinc.org American Lung Association www.lungusa.org Telephone 212-315-8700 American Organ Transplant Association www.a-o-t-a.org Telephone 281-261-AOTA Centers For Medicare & Medicaid Services [CMS] Formerly Health Care Financing Administration [HCFA] www.cms.hhs.gov Governs Health & Medicare Policy Coalition of Donation Website: www.shareyourlife.org Page 31 Resource Directory Children’s Organ Transplant Association [COTA] www.cota.org Telephone 800-366-2682 Hume-Lee Transplant Center www.vcuhealth.org/transplant 800-762-6161 ext. 4104 Insulin-Free World Foundation www.insulin-free.org LifeNet www.lifenet.org 5809 Ward Court Virginia Beach, VA 23455 USA 757-464-4761 Organ Procurement Organization Living Donors www.livingdonors.org Living Donors Online www.livingdonorsonline.org Medicare www.medicare.gov Telephone 800-772-1213 National Foundation For Transplants [NFT] www.transplants.org Telephone 800-489-3863 National Kidney Foundation www.kidney.org National Transplant Assistance Fund [NTAF] www.transplantfund.org Telephone 800-642-8399 Page 32 Resource Directory Organ Donation Website: www.organdonor.gov Organ Procurement & Transplantation Website: www.geocities.com/otsfriends Organ Transplant Support, Inc Website: www.geocities.com/otsfriends Pharmaceutical Research & Manufacturers Of America [PHRMA] www.phrma.org Telephone 202-835-3400 Drug Patient Assistance Programs Transplant Living - Patient Services www.patients.unos.org/101.htm TransWeb- Transplantation & Donation www.transweb.org Transplant Recipients International Organization, Inc. Phone: 800-TRIO-386 www.trioweb.org Virginia Transplant Council www.vatransplant.state.va.us Social Security Administration www.ssa.gov Telephone 800-772-1213 United Network For Organ Sharing [UNOS] www.unos.org Telephone 888-894-6361 Veterans Administration www.va.gov Telephone 800-827-1000 Directions to the VCU Medical Center Campus Page 33 Directions Arriving by I-64 West - coming from Virginia Beach, Williamsburg, etc. 1. Take Exit #190 for 5th Street and Downtown/Coliseum 2. Turn left at the 4th traffic light onto Marshall Street 3. Drive six blocks and turn left onto 11th Street 4. Drive one block and turn right onto Clay Street 5. Go one and one-half blocks to the Patient and Visitor Parking Decks E & S. Arriving by I-64 East - coming from Charlottesville, I-81, etc. 1. Follow I-64 East which merges with I-95 South 2. Remain on I-95 south to Exit #74C for West Broad Street 3. Proceed West on Broad Street and follow directions given under "arrive by I-95 North" Arriving by I-95 North - coming from Petersburg, North Carolina, etc. 1. Take Exit #74C for West Broad Street 2. Proceed West on Broad Street for three blocks to 11th Street, take right 3. Drive two blocks to Clay Street and turn right 4. Proceed one and one-half blocks to the Patient and Visitor Parking Decks E & S. Arriving by I-95 South - coming from Washington, Fredericksburg, etc. 1. Take Exit #74C to West Broad Street 2. Follow directions given under "arriving by I-95 North" Arriving by U.S. Route 60 - coming from Lexington, etc. 1. Follow U.S. Route 60 which merges with 9th Street 2. Remain on 9th Street and go one block past Broad Street to Marshall Street and turn right 3. Drive two blocks and turn left onto 11th Street 4. Drive one block and turn right onto Clay Street 5. Go one and one-half blocks to the Patient and Visitor Parking Decks E & S. Hospitals Patient Representatives 804-628-0400 This department is available for assistance for housing and travel arrangements. Certain Page 34 Parking Valet parking is available for $5.00 at the entrances of the Gateway Building, ACC and North Hospital. Parking for the Children’s Pavilion is available in the Pavilion’s lower garage on 11th St. for $5.00. The VCU Medical Center has a Patient and Visitor Parking Deck located at 12th and Clay Streets. The Deck is open 24 hours daily. There is a charge for using this facility during the week. Reduced parking rates ($2.00 per visit) are available for patients and visitors that obtain parking validation at the Information Desks located on the first floor of Main Hospital, ACC, Nelson Clinic, the Children’s Pavilion and the ground floor of the Gateway Building. Lost parking tickets for the Patient and Visitor Parking Deck will be charged $10.00 upon exit unless a $2.00 validation is presented. vp Valet Parking P General Parking Page 35 Comfort Safety and Security Food and Vending Cafeteria – Main Hospital, 1st Floor Subway – Main Hospital, 1st Floor Chick-fil-a – Main Hospital, 1st Floor Alpine Bagels – Gateway Building, Ground Floor McDonald’s – Gateway Building, Ground Floor Espress Oasis Coffee – Main Hospital, 1st Floor Vending Machines – Main Hospital, 1st Floor Three Bears Gift Shop – Critical Care Hospital, 1st Floor Security Security staff is available at all times. Immediately report any questionable situation to your health care provider. An escort service is available to any location on the downtown campus by calling 828WALK. This service is provided free of charge at any time of the day. Security can also assist visitors in obtaining help for car related problems by calling 828-6595. Telephones Visitors are invited to use pay telephones located throughout the medical center. Cell Phone Usage The use of cell phones is allowed in any area of the medical center unless otherwise indicated. Smoking Policy and Locations Smoking is not allowed anywhere in the medical center and is also prohibited in and adjacent to all entrances. Smoking is restricted to designated outdoor smoking areas. Please check with your health care provider for the appropriate smoking locations. Page 36 Lodging Near VCU Medical Center area hotels also provide discounts if reservations are made through representatives. Hospital Hospitality House 804-828-6901 612 E. Marshall Street Richmond, VA 23240 This facility provides temporary lodging arrangements for visiting families of VCU Health Systems, out-of-town patients, and patients requiring long-term treatment. Provides free shuttle to hospital. Days Inn- Richmond Airport 804-222-2041 5500 Williamsburg Road Sandston, VA 23150 Holiday Inn- Central 804-559-0022 3207 North Boulevard Richmond, VA 23230 Holiday Inn Express 804-559-0022 7441 Bell Creek Road Mechanicsville, VA 23111 Omni Richmond Hotel 804-344-7000 100 South 12th Street Richmond, VA 23219 Radisson Hotel 804-644-9871 301 West Franklin Street Richmond, VA 23220 Residence Inn Richmond- West End 804-285-8200 2121 Dickens Road Richmond, VA 23230 Richmond Marriott 804-643-3400 500 East Broad Street Richmond, VA 23219 Provides free shuttle service to hospital Ronald McDonald House 804-355-6517 2330 Monument Avenue Richmond, VA 23220 Page 37 Fund Raising Opportunities for Transplant: I. National Foundation for Transplants (NFT) www.transplants.org Telephone: 1-800-489-3863 Facts: 1. Do not do separate fundraising while actively fundraising with NFT. 2. If the recipient uses NFT for active fundraising, a grant may be available to the donor. Policies: 1. Fundraising cannot be used for personal expenses. 2. Fundraising can be used for transplant related expenses. II. National Transplant Assistance Fund (NTAF) www.transplantfund.org Telephone: 1-800-642-8399 III. American Organ Transplant Association (AOTA) www.a-o-t-a.org Telephone: 1-281-261-AOTA IV. Children’s Organ Transplant Association (COTA) www.cota.org ⇒ This is a list of resources to assist you in your fundraising efforts for transplant. For further assistance please discuss this with either your coordinator, financial coordinator or social worker. Page 38 Notes Notes _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _______________________________________________ _____________________________________________________ ___________________________________________________ Page39 Page 39