KIDNEY PRE-TRANSPLANT EDUCATION BOOK

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1 KIDNEY PRE-TRANSPLANT EDUCATION BOOK This book is to give information to you and your family about kidney transplant. Please keep this book handy in order to look back at it as you have questions. At the back of this book, there are pages to write questions and concerns to ask your doctor or nurse. For more information about the words we use, please look at the glossary at the back of this book. Receiving a transplant can be a stressful yet valuable experience. It is our hope that this book helps to answer any questions and concerns you may have. We hope your experience will be very special and satisfying for you. For any questions, call the transplant office (919) or THE KIDNEY Kidneys look like kidney beans. They are about as big as your fist. Most people have two, located in the lower back, on either side of the spine. Besides making urine, the kidneys also: Take body waste and fluid from the blood Help control blood pressure Helps with red blood cells Helps with chemicals needed by your body When the kidneys do not work right, the treatment is NO treatment at all, DIALYSIS or TRANSPLANT. Dialysis can replace some of the things the kidneys normally do. For some people, dialysis is a good treatment, and many people who are doing well with dialysis do not want a transplant.

2 But there can be problems with dialysis. One problem is vein access to do the treatment. Another problem is how long dialysis takes. Still others just do not feel well on dialysis...they feel tired; they may feel sick. These are the people who may choose transplant as a treatment for their kidney disease. The goal of transplant is to provide one new kidney that works better than your other kidneys. Transplant is not a cure for kidney disease. It is just another type of treatment. RISKS AND BENEFITS RISKS - Being put to sleep for surgery Infection after transplant Problems during surgery Anti-rejection medicines after transplant Anxiety, depression Rejection of the new kidney Death, although this is very rare BENEFITS - More free time because you will not be on dialysis You can return to work if you are not able to work now You will feel better and have more energy No limits on what you drink or what you eat WHERE DO THE KIDNEYS COME FROM? Kidneys can come from three sources: A relative (called a living related donor) A spouse or friend (called a living unrelated donor)

3 A person who has died (called a deceased donor) Living-Related Donor (LRD) or Living Unrelated Donor (LURD): Best way to get a kidney transplant. 96% of kidneys from a living donor are working after 1 year 92% of kidneys from a living donor are working after 3 years Surgery can be planned, so you know the exact date of your transplant No long waiting time for the person who will get the kidney. Deceased Donor (DD): Unlike a living donor transplant, a deceased donor transplant is unplanned; you may be called to the hospital anytime of the day or night. There can be quite a long waiting time for the recipient 98% of kidneys from a deceased donor are working after 1 year 83% of kidneys from a deceased donor are working after 3 years If you do not have a living donor, your name will be placed on the waiting list for a deceased donor kidney. This will happen after your assessment is complete and approved by the transplant committee and your insurance company. NOTE: You cannot be placed on the waiting list until your entire assessment is complete and approved by the Transplant Committee. THE ASSESSMENT PROCESS

4 Whether you get a living donor kidney or a deceased donor kidney, the assessment steps are the same. This is because we want to make sure that transplant is the right treatment for you. We want to make sure you will be able to care for yourself and your new kidney after transplant. The assessment will be specific to YOU and YOUR needs. It may be different from others you know because each person is different. No tests will be scheduled for you that are not needed. Each test will help us to know more about you and your health. STANDARD TESTING Orientation Class This is a one time class that will teach you about transplants and give you information about the assessment process. Chest X-ray and EKG Blood Work - We will do blood work during your assessment. There are many tests that are done including blood type and tests to check for infections such as HIV or Hepatitis. Another blood test we do is called Tissue Typing (This is a specific blood test for transplant patients. It helps to match a kidney to you (whether from a living donor or a deceased donor). You can expect to have blood work drawn 1 or 2 times during your evaluation. CROSS MATCH This is a blood test done anytime you have a potential donor. Whether you have a living donor or a deceased donor we do a cross match between you and that donor. This test lets us know if you can accept a kidney from a specific donor. Renal Ultrasound - This is a way of looking at your kidneys. STAFF THAT WILL HELP YOU Transplant Nurse Coordinator - The nurse that will help you through the transplant process. Social Worker - He or She will ask you about your family support and answer questions you may have about the transplant process. Transplant Nephrologist (ne phrol'o gist) - The kidney doctor will review your medical history and he/she will talk with you about transplant. Transplant Financial Coordinator - You will meet with the financial counselor, who will review Medicare and/or Medicaid rules with you. He or She will also talk with you about any additional insurance you may have. It is important that you will have enough insurance coverage for hospital and medicine costs after the transplant.

5 Transplant Surgeon - You will be scheduled to see the transplant surgeon. He or She will review the results of the studies, examine you briefly, answer any questions you may have, and will decide if other tests are needed before a transplant can be done. Dentist - We require that you see your dentist prior to having a transplant. The medicines you take after transplant increase your risk of getting an infection. If you have cavities, they should be filled. If you have gum disease, it should be treated. Any problem teeth may need to be removed. If you do not have a dentist in your area, please let your nurse know so that we can help you to be seen at the UNC Dental Clinic. Technicians for Pap smear/ Mammogram/Colonoscopy - For women, an exam and Pap smear are needed. Women over the age of 40 need to have a mammogram. Everyone over the age of 50 needs a colonoscopy. You can have these tests done with your local doctor as part of your routine check up. If you have any problems having these done, let your nurses know and you can have them done at UNC Hospitals. Doctors and Nurses to offer extra tests for some patients: You may need other tests or appointments that your transplant nurse will help you to schedule. All test reports must be reviewed by the transplant team to see if your name can be placed on the waiting list. NOTE: You cannot be placed on the waiting list until your entire assessment is done and approved by the Transplant Committee. AFTER THE ASSESSMENT Your assessment results will be reviewed by the transplant committee. Your assessment results will be reviewed by your insurance company. If you are approved by the committee and your insurance company, your name will then be placed on the kidney transplant waiting list. This waiting list is a national one, managed by the United Network for Organ Sharing (UNOS). Each person in the country who is in need of a kidney is listed with UNOS. Even if you have a live donor, your name is placed on the waiting list, just in case your donor is not able to donate a kidney. The average waiting time for kidney transplant in this part of NC is 5-6 years. The local branch of UNOS is called Carolina Donor Services (CDS). Carolina Donor services manage the kidney transplant waiting lists for UNC, Duke, ECU and Baptist Hospitals.

6 You may also be on more than one waiting list. You can be on waiting lists in other regions. Talk with your nurse about this if you are interested. BEING CALLED TO RECEIVE A KIDNEY You may be called at any time of the day or night. The transplant office needs current phone numbers of family and friends to help contact you when a kidney is available. You need to be prepared to come to the hospital quickly and safely when we call you. You will need a way to get to the hospital. You will need someone to care for children and pets (if you have them). You should keep a hospital bag packed Do bring: bedclothes, hairbrush, comb, toothbrush, etc. Don t bring: jewelry, cash, and wallet. Tell the coordinator if you are sick in any way or if you are taking antibiotics for any reason. Do not eat or drink anything except a sip of water with your medicine unless told to do by your doctor or nurse. If you have diabetes, you can keep your blood sugar from getting too low by eating glucose tablets or hard candy (not sugar free). Bring these to the hospital. Bring your medicines and dialysis information (if on CAPD, bring supplies for two (2) exchanges to the hospital). Bring your insurance card(s). NOTE: You have the right to REFUSE a kidney being offered to you. This is your right. It will not affect your place on the transplant waiting list. If you do accept the kidney offer, when you arrive at the hospital, you will have some tests done. The tests are needed to decide if you can be a match for the donor kidney and have the transplant surgery: 1) Blood work (including cross match with donor) 2) EKG and Chest x-ray

7 3) Assessment by the nephrologist (kidney doctor) and the transplant surgeon. Getting a call does not mean you will get the kidney. Usually, at least two patients are called for each kidney. The first patient called is the candidate, and the second person is a backup candidate. The second patient will only get the kidney if the first is not able to get the transplant for some reason. Back up patients are always called so that if the first patient is no longer a candidate, we can move quickly to the backup patient. The waiting time for each patient is different. The range is anywhere from five days to 10+ years. This is because we never know what kidney will be offered and who it will match. Waiting only a few days or waiting more than 10 years are extreme cases. We believe the average wait is closer to 5 to 6 years. WHEN YOU COME TO THE HOSPITAL Whether you are receiving a kidney from a living donor, or you are called in for a deceased donor kidney, you can expect the following during your surgery and hospital stay: THE SURGERY - Once you are in the operating room and asleep, several things will occur: A tube (Foley catheter) will be placed into your bladder. This allows us to measure urine output during and after surgery. It will be removed a few days after surgery. A small tube (naso-gastric or N.G. tube) may be put through your nose into your stomach. This tube will help to prevent you from feeling sick and throwing up after the surgery and is usually taken out before you wake up. The surgery itself usually lasts about four hours. The new kidney will be placed on the right or lower part of the abdomen just above the groin area. (See diagram below). Often our kidneys are not taken out, so you may have three kidneys in your body after surgery.

8 The blood vessels of the donor kidney are attached to your own blood supply and the ureter (the tube that connects your new kidney to your bladder) is joined to your bladder. A small tube (called a stent) will be placed in the ureter to make sure urine passes without problem. It will be taken out during a simple outpatient procedure within four to six weeks. The skin incision will be closed using staples. The staples will be removed during a follow-up clinic visit.

9 AFTER SURGERY - The transplanted kidney usually begins to work right away. But sometimes the kidney is not working right away and you will need dialysis for several days until the kidney is working better. A small number of kidneys (<1%) may never work. After the operation, you will go to the recovery room for several hours. After the recovery room, you will go to the intensive care unit (ICU) for 1-2 days. Then you will be moved to the transplant floor for the rest of your hospital stay. Your vital signs (blood pressure, heart rate, breathing, and temperature) will be taken frequently. Your urine output will be measured hourly. Blood work may be checked several times a day. You will also be weighed daily. Because you are put to sleep and your intestines or bowels are moved during surgery, the normal movement of your bowels slows down. As bowel function returns, you will begin to pass gas and we will be able to start feeding you slowly. The IV that is in your hand/arm/neck will be used to give you fluids until you are able to eat or drink. The IV will be removed at the time of your discharge. The wound will have a dressing over it. We will teach you how to care for and clean your wound and dressing. You will be asked to turn in bed, cough, and breathe deeply at least every one to two hours while awake. You can help reduce problems such as pneumonia, difficulty passing a bowel movement, or blood clots in your legs if you cough, deep breathe, and walk. You must learn how to take care of yourself as a transplant patient and care for yourself when you go leave the hospital. This means you will learn to: o Check your blood pressure o Check your temperature o Weigh yourself daily o Record your 24-hour fluid intake and output You will be asked to have a thermometer, a scale, and a blood pressure cuff to have at home after discharge. You must learn the signs and symptoms of infection. You must learn and follow your medicine routine. This includes knowing: o The name of each medicine o The strength of each pill

10 o o The doses of each pill Side effects of each medicine Your responsibilities after transplant include: following all medical advice, getting lab work and coming to clinic visits as the team recommends, telling your transplant team about any problems or concerns, and taking all medicine as directed. Even though the average hospital stay after a kidney transplant is two to seven days, you will NOT be discharged from the hospital until you know your medicines and your medicine routine. IMMUNOSUPPRESSIVE MEDICINES (ANTI-REJECTION DRUGS) Immunosuppressant (im mu no sup pres sant) medicines are drugs used to prevent rejection of the new kidney. All transplant patients will take anti-rejection medicines for as long as they have a transplanted organ. For the health of you and your new kidney you must know what medicines you are on, the amount, and why you are taking them. In addition to anti-rejection medications, other drugs will be needed. SOCIAL SUPPORT

11 You will need support from family and friends in order to have a successful kidney transplant. You should have support people who have agreed to: Be able to come to hospital, during your stay, to sit in on education classes with you. Drive you home from hospital the day of discharge. Be able to help you at home for the first few days. Be available to drive you to UNC Hospital, anytime of the day or night, in case of emergency. Drive you to UNC Hospital for clinic appointments and local appointments for the first few weeks (as you will not be allowed to drive). The United Network for Organ Sharing provides a toll-free patient services line to help transplant candidates, those who get the kidney, and family members understand how organs are obtained and how they are transplanted. You may also call this number to discuss a problem you may have with your transplant center or the transplant system in general. The toll-free patient services line number is The United Network for Organ Sharing (UNOS) also has a website at: Contact is very important in the transplant process. Be sure to notify your nurse or the transplant office at (919) or with any of the following: o A change in phone number(s) or address where we may reach you o Sickness of any kind (infection, flu, cold, etc.) o Admission to a hospital or any surgery you may have o Insurance, Medicare, or Medicaid changes o Questions or concerns that you may have You may also learn more about kidney transplant at UNC by going to our website: GLOSSARY OF WORDS WE USE OFTEN

12 ABO TYPE- Test which determines blood type. Blood types include O, A, B, or AB. ALLOGRAFT- a transplant from one person to another, not a twin. ANEMIA- Decrease in the number of red blood cells. ANTIBODY- Substances that naturally form in the blood to fight infections. They can also attack a transplanted organ, causing the body to reject it. CANDIDATE - A person waiting for a kidney transplant. CARDIOLOGIST- Heart doctor CREATININE- It is found in the blood and is filtered out of the body by the kidneys. Creatinine blood levels go up with kidney failure, but go down with treatment or transplant. Blood creatinine levels tell us how well the kidney is working. CROSSMATCH- It tells us if a person can receive that particular donor kidney. We mix your blood with blood from the donor and see what happens. What we want to happen is nothing, no reaction.a NEGATIVE cross match. If your blood cells do react to the donor blood cells, a positive reaction a POSITIVE cross match, then you could not accept a kidney from that donor. It would not be safe. We always do a cross match with any donors before proceeding with a transplant. Cross matching is a

13 blood test done on you when you have a donor. It is not done until that time. DECEASED DONOR ORGAN- Donated from an unrelated person who has died. DONOR- A person who gives or donates kidney. DOPPLER STUDIES- A test that looks at your arteries in your legs that will provide blood supply to your new kidney. Also, can be study of arteries in your neck. IMMUNE SYSTEM- The body s defense against disease and infection. This system tells white blood cells to fight off viruses, bacteria, or transplanted organs. IMMUNOSUPPRESSANTS- Medicines that are needed after a transplant to help keep the body from rejecting the donor kidney; also called anti-rejection medicines. These must be taken everyday for as long as the transplanted organ is working. NEPHROLOGIST- Kidney doctor RECIPIENT- The person who receives the kidney transplant. RENAL- Another name for KIDNEY.

14 REJECTION- The process that occurs when the body tries to fight the transplanted organ. TRANSPLANT COORDINATOR- Nurse that will help you during transplant and schedule your tests and doctor s visits. U.N.O.S. - United Network for Organ Sharing, the national waiting list. URETER- Tube that carries urine from the kidney to the bladder. VCUG- Voiding Cystourethrogram (cys to ure thro gram), a test that looks at how well you empty your bladder. Notes and Questions for my Doctors and Nurses

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