UNC Center for Transplant Care Patient Handbook

Transcription

1 UNC Center for Transplant Care Patient Handbook This book is about getting a Kidney, Kidney/Pancreas or Pancreas transplant, and living donation for kidney transplant at the University of North Carolina Center for Transplant Care. Keep this book handy and look back to it if you have questions. At the back of the book, there is a page for you to write down your thoughts and questions. Bring this book with you to appointments so you can remember to ask your doctor or nurse. We hope your experience will be very special and satisfying. Kidney & Pancreas Transplant Handbook

2 For any questions, call the transplant office or toll free 844 UNC KIDN ( ). LIVING DONOR HANDBOOK 1 Page

3 Kidney & Pancreas Transplant Handbook

4 THE KIDNEY AND THE PANCREAS Kidney & Pancreas Transplant Handbook

5 Kidney & Pancreas Transplant Handbook

6 THE KIDNEYS AND THE PANCREAS What do kidneys do? 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. The kidneys make urine and get rid of body wastes and extra fluids from the blood. They also: Help control blood pressure Help with making red blood cells Help control chemicals needed by your body, like potassium Kidney Kidney & Pancreas Transplant Handbook Page 1

7 Treatments for Kidney Failure When the kidneys stop working, this is called kidney failure. When you have permanent kidney failure (also called End Stage Renal Disease or ESRD), you have options for treatment: 1. You can have DIALYSIS and/or 2. You may want to have a kidney TRANSPLANT 3. You may decide to not have ANY treatment Dialysis Dialysis can replace some of the things the kidneys normally do. For some people, dialysis is a good treatment, and some people who are doing well with dialysis may not want a transplant. But there can be problems with dialysis. You must have good vein access for hemodialysis. Dialysis can take up a lot of time. Some people just do not feel well on dialysis, they feel tired and they may feel sick. These people may choose transplant as a treatment for their kidney disease. Most patients need dialysis before they can get a kidney transplant. Kidney & Pancreas Transplant Handbook Page 2

8 What Does The Pancreas Do And What Treatments Are Available? The pancreas is an organ that sits in back of the stomach. It makes insulin to control blood sugar levels, and digestive juices to help the body break down food. Type I Diabetes is caused by the body s immune system attacking and destroying the insulin making cells in the pancreas. If you have Type I Diabetes, then you must take insulin for the rest of your life to control your blood sugar. treatment option is Pancreas transplant. What About Transplant As A Treatment Option? The other The goal of transplant is to replace the function of an organ that is no longer working well with an organ that does work. The transplanted organ will take over the work of your sick kidneys or pancreas, and allow you to recover your health and well being, live a longer life and have a better lifestyle after transplant. Transplant is not a cure, but it is a successful treatment for end stage kidney disease and the effects of Type I diabetes. However, there are not enough organs for everyone who might want a kidney or pancreas transplant. SAMPLE CONSENT DOCUMENTS Before you start the evaluation and before you are placed on the waitlist, you will need to review and sign consent forms and a patient education checklist that can be found at the back of this book. (See Tab Consents and Checklists) Please review these forms before your evaluation and again before your medical visits. You will need to sign forms like these before surgery. Kidney & Pancreas Transplant Handbook Page 3

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10 RECIPIENTS Kidney & Pancreas Transplant Handbook

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12 WHERE DO TRANSPLANTED KIDNEYS COME FROM? Kidneys can come from two sources: Living Donors a. A relative (called a living related donor LRD) b. A spouse or friend (called a living unrelated donor (LURD) c. A Kidney Paired Donor (KPD) match* * For information on UNC s KPD program, see the section KPD Deceased Donors a. A person who has died and donated their organs Living Related Donor (LRD) or Living UnRelated Donor (LURD): This is usually the best way to get a kidney transplant because living donor kidneys usually last longer The surgery can be planned, so you know the exact date of your transplant You may not have to wait as long to get a transplant 96% of kidneys from a living donor are working after one year 92% of kidneys from a living donor are working after three years Kidney & Pancreas Transplant Handbook Page 4

13 Deceased Donor (DD): A deceased donor kidney or pancreas comes from someone who made a decision to donate their organs when they die. Their family can also make this decision. A deceased donor transplant cannot be planned. You may be called to the hospital anytime of the day or night for the surgery. You may have to wait quite a long time to get a deceased donor transplant. There are more people waiting than there are donated organs. 98% of kidneys from a deceased donor are working after one year (UNC) 83% of kidneys from a deceased donor are working after three years (UNC) How long can a kidney transplant last? year 3 years Percent % Living Donor Transplant Deceased Donor Transplant Kidney & Pancreas Transplant Handbook Page 5

14 RISKS AND BENEFITS of TRANSPLANT Having a transplant can help you in many ways to feel better and live longer. Before you get on the transplant Waiting List, you will need a full medical workup. We will talk to you about possible risks. The transplant evaluation has some risks and surgery does too. Risks of Kidney and Pancreas Transplant Being put to sleep for surgery (anesthesia) There may be problems during surgery, like bleeding You may have Infection after transplant You must take Anti rejection medicines after transplant You may have some anxiety, sadness, or depression Your may have some rejection of the new kidney Death is a very rare risk Risks of pancreas transplant are generally the same as a kidney transplant, including failure of the pancreas due to rejection along with other problems specific to the pancreas surgery such as a blood clot in pancreas vessels, infection, and fluid leak at the attachment of the pancreas to the small intestine where the newly transplanted pancreas will drain fluids. Kidney & Pancreas Transplant Handbook Page 6

15 BENEFITS Living a longer life with better quality You will feel better and have more energy More free time because you will not be on dialysis You can return to work if you are not able to work now No limits on what you drink or what you eat After pancreas transplant you can also be free from frequent blood sugar monitoring, insulin therapy, hypoglycemia, and dialysis Having normal blood sugar levels may help preserve your eye sight and decrease or delay other complications of diabetes, such as vessel disease, and diabetic nerve pain. THE EVALUATION PROCESS Whether you get a living donor kidney or a deceased donor kidney, the evaluation 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 evaluation will be matched to YOU and YOUR needs. It may be different from others you know who have had testing, 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. The evaluation for a pancreas transplant is the same as the kidney transplant evaluation, plus a few extra blood tests. Kidney & Pancreas Transplant Handbook Page 7

16 TESTS AND THINGS YOU NEED TO COMPLETE FOR THE EVALUATION The transplant evaluation is very thorough and it will give the transplant team a lot of information about your medical needs, how well you will do before and after you have kidney transplant surgery. Orientation Class This one time class will teach you about transplants and give you information about the evaluation process. Chest X ray and EKG to check your heart and lungs Blood Work There are many blood tests that are done including blood type and tests to check for infections such as HIV or Hepatitis. One special transplant blood test is called Tissue Typing. This test will help us match a kidney to you, whether from a living donor or a deceased donor. Blood work may need to be done more than once during your evaluation. CROSS MATCH This blood test will be done every time you have a potential donor (living or deceased). This test tells us if you can accept a kidney from a specific donor. Renal Ultrasound This is a way of looking at the shape and size of your kidneys using sound waves. Kidney & Pancreas Transplant Handbook Page 8

17 ABSOLUTE CONTRAINDICATIONS FOR KIDNEY TRANSPLANT: (This means we cannot put anyone on the transplant list that has the following): Active Tuberculosis (TB) Drug abuse o Should be free of all drugs for one year with documented compliance in a drug rehabilitation program Advanced Heart Vessel disease, also called Coronary Artery Disease (CAD) Advanced Heart Failure American Heart Associated Class III and IV disease Advanced Lung Disease such as emphysema and Chronic Obstructive Pulmonary (Lung) Disease (COPD) If you continue to smoke and you have lung disease Cancer (except simple skin cancers) o You must be cancer free for at least two years after your first treatment. Each case will be looked at individually. If you are BOTH HIV positive AND Hepatitis C Positive Kidney & Pancreas Transplant Handbook Page 9

18 RELATIVE CONTRAINDICATIONS FOR RENAL TRANSPLANT (This means some of these things may prevent you from being put on the transplant list until they are taken care of) Some Kidney Diseases o Active vasculitis/glomerulonephritis o Active Systemic Lupus Erythematosus (SLE or Lupus ) o Wegener s Granulomatosis o Goodpasture s Syndrome Positive HIV test (*Your kidney doctor will talk with you about our protocol) Positive Hepatitis B Antigen (Active infection from Hepatitis B virus) If you have an active infection going on Other diseases that are actively being treated Severe Obesity Patients with Body Mass Index (BMI) of > 40% Severe blood vessel disease (advanced sclerotic vascular disease or hardening of the arteries) Oxalosis a condition where there is too much oxalate (salt) in the urine Psychosocial Issues, such as difficulty with adhering to your treatment o If you are unable to stay on your medical regimen, and/or take care of yourself without a caregiver due to physical and/or mental disabilities and you have no reliable caregiver If you decide you do not want a transplant Kidney & Pancreas Transplant Handbook Page 10

19 HOW WE WILL HELP YOU WHEN YOU COME TO UNC Transplant Nurse Coordinator The nurse that will help you through the transplant evaluation process. Transplant Social Worker The Transplant Social Worker will meet with you to find out about your family support and finances and will 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 benefits and risks, will examine you briefly, review the results of the studies, answer any questions you may have, and will decide if other tests are needed before a transplant can be done. Transplant Financial Coordinator You will meet with the Transplant Financial Coordinator who will review Medicare and/or Medicaid rules with you and any commercial insurance you may have. 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 before and after the transplant. Transplant Surgeon The surgeon will also review your medical history, talk with you about transplant benefits and risks, will examine you briefly, review the results of the studies, answer any questions you may have, and will decide if other tests must be done for the evaluation. Kidney & Pancreas Transplant Handbook Page 11

20 Dentist We recommend that you see a dentist before being put on the transplant Waiting List. The medicines you take after transplant increase your risk of getting an infection. If you have gum disease, it must be treated. Any problem teeth may need to be removed. If you do not have a dentist in your area, please let your Transplant Nurse Coordinator know so that we can get you an appointment at the UNC Dental Clinic. Techs for Pap smear/mammogram/colonoscopy For women, an exam and Pap smear are needed. Women over the age of 40 must have a mammogram. Everyone over the age of 50 must have a colonoscopy. You can have these tests done with your local doctor as part of your routine check up. If you have any problems getting these done let your Transplant Nurse Coordinator know and you can have them done at UNC Hospitals. Specialist Doctors and Nurses may request extra tests for some patients. You may need other tests or appointments that your Transplant Nurse Coordinator will help you schedule. All test reports must be reviewed by the transplant team to make a decision about putting you on the Waiting List. NOTE: You cannot be approved to be put on the Waiting List until your evaluation is done and approved by the Transplant Committee. Kidney & Pancreas Transplant Handbook Page 12

21 AFTER THE EVALUATION AND THE WAITLIST The transplant committee will review your evaluation results to make sure that you meet our guidelines for a transplant and are healthy enough for transplant in the future. If the committee approves you to be put on the Waiting List, then your insurance company will review your assessment results, and they decide whether to approve insurance coverage for transplant. If you are approved by the committee and your insurance company, your name will then be placed on the kidney transplant Waiting List we ll send you a letter about this! This Waiting List is a national list, 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 between three to six years. Kidneys are allocated based on a scoring system. For more details, please refer to the Kidney Allocation pamphlet in the back pocket. The local branch of UNOS is called Carolina Donor Services (CDS). CDS manages the kidney transplant Waiting Lists for UNC, Duke, ECU/Vidant and Baptist Hospitals. Kidney & Pancreas Transplant Handbook Page 13

22 You may have your name placed on more than one transplant center s Waiting List. You can be on Waiting Lists in other regions. Talk with your Transplant Nurse Coordinator about this if you are interested. BEING CALLED IN FOR A DECEASED DONOR TRANSPLANT We may call you at any time of the day or night with a transplant offer. We need to always have current phone numbers for you, your family and friends so we can reach you when an organ is available. Be prepared to come to the hospital quickly and safely when we call you. We ll tell you where to check in it is often the emergency room, especially after 5PM. You may be placed in a hospital room while testing is completed. You should keep a hospital bag packed Bring pajamas, hairbrush, comb, toothbrush, etc. Do not bring jewelry, cash, and wallet. You will need someone to care for children and pets (if you have them). You can expect to stay in the hospital three to five days. You will need a way to get to the hospital. Make a plan for this. Tell the Transplant Nurse Coordinator if you have been sick in any way or if you are taking antibiotics for any reason. The Transplant coordinator will tell you when to stop eating and drinking. You can take your medicine with small amounts of water. If you have diabetes, bring glucose tablets or hard candy (not sugar free) with you to keep your blood sugar from getting too low. Kidney & Pancreas Transplant Handbook Page 14

23 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 that is 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 get to the hospital you will have tests done. These tests are needed to decide if you are a good match for the donor kidney and you are OK to go through the transplant surgery. These tests include: 1) Blood work (including cross match with the donor) 2) EKG and Chest x ray 3) Assessment by the kidney doctor and the transplant surgeon Getting a call about a possible transplant (we call it an organ offer ) does not mean you will get the transplant. Usually, at least two patients are called for each kidney. The first patient called is the primary (or first) candidate, and the second person is a back up candidate. Back up patients are always called so that if the first patient cannot have the transplant, we can move quickly to the backup patient. Being back up can mean a transplant for you! Kidney & Pancreas Transplant Handbook Page 15

24 The amount of time each person spends on the Waiting List can be different. It might be anywhere from five days to over 10 years. This is because we never know when a kidney or pancreas will be offered and who will be the best match. Waiting only a few days or waiting over 10 years are extreme cases. We believe the average wait is closer to three to six years. We ll talk more later about things you can do to always be ready for the call when it comes. 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 or pancreas, you can expect the following during your surgery and hospital stay: Kidney & Pancreas Transplant Handbook Page 16

25 THE SURGERY Once you are in the operating room and asleep, several things will occur: A tube (Foley catheter) will be put into your bladder. This lets us measure how much urine you are making during and after surgery. It will be taken out a few days after surgery. A small tube (naso gastric or NG tube) may be put through your nose into your stomach. This tube will help prevent you from feeling sick and throwing up after the surgery. It is usually taken out before you wake up. You will have at least one needle placed in your vein (an IV ), so you can have fluids during and after the surgery. These fluids are very important to keep your new kidney working and making a lot of urine. Kidney transplant surgery usually lasts about four hours. The new kidney will usually be put in the right or lower part of your abdomen (belly) just above the groin area (see picture on previous page). Usually, your own kidneys are not taken out so you may have three kidneys in your body after surgery. The blood vessels of the donor kidney will be sewn to your own blood vessels and the ureter of the kidney (the tube that connects your new kidney to your bladder) will be sewn to your bladder. A very small tube about the thickness of thin spaghetti (called a stent) will be placed in the ureter to make sure urine passes without problem. You will not even feel this tiny tube. It will be taken out four to six weeks after transplant, during a simple outpatient procedure in Urology. Kidney & Pancreas Transplant Handbook Page 17

26 Pancreas transplant surgery is similar to a kidney transplant you will have a Foley catheter, an IV, and an NG tube. The surgery usually takes two to four hours. The incision for the transplanted pancreas usually runs from your belly button to right above your pubic bone (midline). The pancreas is usually placed on the right side of your abdomen. The vessels of the new pancreas are sewn to larger blood vessels that go to your leg (veins and arteries). The pancreas is also connected to a portion of your small intestine so it can drain digestive juices. Your own pancreas is not taken out. See picture below. If you have a combined Kidney & Pancreas transplant, the surgery may take three to six hours and both of the organs are put in through a midline incision. The pancreas usually goes on the right side and the kidney on the left. For all procedures, the skin incision will be closed using staples. The staples will be removed during a follow up clinic visit about four weeks after transplant. A gauze dressing will be put over the incision to keep it clean and absorb any drainage, which is normal. Kidney & Pancreas Transplant Handbook Page 18

27 IMMUNOSUPPRESSIVE MEDICINES (ANTI REJECTION DRUGS) Your body will react to your new kidney as it would a foreign object. Think about what happens when you have a splinter, the area gets swollen and puffy and your body tries to push it out. To prevent this type of reaction (called rejection) you have to take anti rejection medicine (also called immunosuppressants im myuno sup ress ants). All transplant patients have to take anti rejection medicines for as long as they have a working transplanted organ. For your health and the health of your new organ, you must know all about your medicines: What medicines, why you are taking them, when you take them, and how much you should take. There are other medicines that you will need to take in addition to the anti rejection drugs. Kidney & Pancreas Transplant Handbook Page 19

28 AFTER SURGERY The surgeon will come and talk with your family after surgery and let them know how you are doing. The transplanted kidney usually begins to work right away. But sometimes the kidney does not work right away and you may need dialysis for several days until the kidney is working better. A small number of kidneys (less than 1%) may never work. The amount of urine you are making will be checked every hour. After the operation, you will go to the recovery room (PACU or Post Anesthesia Care Unit) for several hours where you will be watched very carefully until you are fully awake. You will get medicines for pain and IV fluids. Your vital signs (blood pressure, heart rate, breathing, and temperature) will be checked frequently. After the recovery room, you may go to the intensive care unit (ICU) for a day or two, but usually you will go to the Transplant Floor (5 West) for the rest of your hospital stay. Right after the surgery, pain is helped by a Patient Controlled Analgesia (PCA) pump. This pump puts pain medicine directly into the IV when a button is pushed. It is set so it cannot give too much medicine. Once the IV is taken out, you will be given pain medicine to take by mouth. Blood work may be checked several times a day. You will also be weighed daily. Kidney & Pancreas Transplant Handbook Page 20

29 The IV will be used to give you fluids until you are able to eat or drink. The IV will be removed before you go home (discharge). The diet will be set by the doctors. Due to the surgery and pain medicines, the bowels are sluggish for a short time. You will be able to drink and eat once your bowels are moving normally. You will start with liquids and by the time you go home, you should be back to your usual diet. The incision will have a dressing over it. We will teach you how to take care of your incision and change the dressing. The nurses will ask you to turn in bed, cough, and breathe deeply at least every one to two hours while awake. You can help decrease problems such as pneumonia, constipation, or blood clots in your legs if you cough, take deep breaths, and walk a lot. You will learn how to take care of your new organ and yourself as a transplant patient before you leave the hospital. This means you will learn to: o Check your blood pressure o Check your temperature o Weigh yourself daily o Write down how much you drink and how much you urinate (24 hour fluid Intake and Output ( I and O )) You need to have a thermometer, a scale, and a blood pressure cuff at home after discharge. The inpatient nurse coordinator will help you get these if you do not already have them. You need to learn the signs (what to look for) and Kidney & Pancreas Transplant Handbook Page 21

30 symptoms (how you feel) of infection. You need to learn and follow your medicine routine. After transplant you have a big job taking care of your transplanted organ. It is really important to follow the instructions and advice of your transplant team, take all your medicines as you have been taught, get lab work regularly, and come to all scheduled clinic visits. Please make sure to tell the transplant team about any problems or concerns you are having, because they may be related to your transplant. Before you go home you will need to learn all your medicines and be able to tell the transplant team how you should take care of yourself and your new organ. Staying on top of your care after transplant and following medical advice will give you the best life for your organ. Kidney & Pancreas Transplant Handbook Page 22

31 IT TAKES A VILLAGE! SETTING UP YOUR SOCIAL SUPPORT You will need support from family and friends in order to have a successful transplant. You need to have people who will agree to help you and be able to: Come to hospital during your stay and learn about transplant care Drive you home from the hospital the day of discharge you won t be allowed to drive for several weeks. Be able to help you at home for the first few days for example pick up prescriptions, help set up medicines, get groceries, cook a few meals, change dressings, etc. Drive you to UNC Hospital, anytime of the day or night, in case of emergency Drive you to UNC Hospital for regular clinic appointments and to your local doctor or to get blood work for the first few weeks STAYING IN TOUCH Keeping in touch with your transplant team is very important. Be sure to tell your Transplant Nurse Coordinator or call the transplant office at or toll free 844 UNC KIDN ( ) if you have any of these problems: o Your phone numbers or address change o You get sick or have any kind of infection (the flu, a cold, etc.) o You go to the emergency room, get admitted to the hospital or have any kind of surgery. o Your insurance changes Kidney & Pancreas Transplant Handbook Page 23

32 o Call us if you have any questions or concerns we are here for you! You can also learn more about kidney transplant at UNC by going to our website: Kidney & Pancreas Transplant Handbook Page 24

33 CONTACTING UNOS UNOS provides a toll free patient services line to help transplant candidates, transplant recipients, 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 UNOS also has a website at Kidney & Pancreas Transplant Handbook Page 25

34 UNOS HOTLINE Kidney & Pancreas Transplant Handbook Page 26

35 Kidney & Pancreas Transplant Handbook Page 27

36 KIDNEY PAIRED DONATION AND OTHER OPTIONS Kidney & Pancreas Transplant Handbook Page 28

37 Kidney & Pancreas Transplant Handbook Page 29

38 What If I Can t Find A Match? If you know someone who would like to donate a kidney but they are not a good blood or tissue match, they can still help you About one third of living donors are not a good match for their intended recipient. To help our transplant patients and living donors, UNC has started a Kidney Paired Donation Program. Kidney Paired Donation (KPD) is when two or more donor/recipient pairs who are not a good match for each other (incompatible) exchange kidneys to give each recipient the best possible matched kidney. All recipient and donor pairs can be considered for the KPD Program. Benefits of Kidney Paired Donation For Recipients: You could receive a living donor transplant, which usually means: Living donor kidneys work longer than deceased donor kidneys You may need less immunosuppressant drugs after transplant You may not have to wait as long for a transplant, and you may spend less time on dialysis, or you may get a transplant before starting dialysis For Donors: It can be a rewarding experience as more families are helped by your donation As a potential donor, you are given an Independent Donor Advocate, who will advocate for and promote your best interest HOW DOES KPD WORK? Kidney & Pancreas Transplant Handbook

39 Common KPD Questions and Answers Q: What will happen if I agree to participate in the Kidney Paired Donation program? A: If a potential living donor agrees to participate in KPD, they will be scheduled for the two day evaluation. If the donor is cleared to donate, and the recipient is ready to be on the waitlist (or is already on the waitlist) the donor and recipient pair will be registered on the KPD database. The match list is run frequently, so if there is not an immediate match, another match could come up at any time. Q: Where will I have to go? A: The recipient and their donor will still receive all evaluations and treatments at UNC Hospitals. Q: Is there a fee for participation? A: No. There is no payment required or payment given to take part in KPD. Q: How much extra will this cost me? A: The costs of KPD are the same as for living donation. Q: Can donors and recipients meet? A: Yes, donors and recipients can meet after transplant if everyone agrees to a meeting. Q: What happens if I decide not to participate in KPD? A: If the living donor decides not to donate, and the recipient is eligible for transplant, the recipient will be put on the Deceased Donor Waiting List. Q: How do I get started? A: For more information on Kidney Paired Donation contact the UNC Living Donor Coordinator Phone: or toll free 844 UNC KIDN ( ) Kidney & Pancreas Transplant Handbook

40 Other options available at UNC: Unmatched Blood Type transplant. Also known as Blood Type Incompatible transplant. This is when a person gets a kidney from a donor that has a blood type not compatible with them. Special blood tests have to be done, in advance, to see if this is an option for the recipient. If it is, special medications and/or treatments are given to the recipient before the surgery. This allows the surgery to be done safely. Not every recipient is a good candidate for Blood Type Incompatible transplant. Your transplant team will discuss this option with you if it applies. Kidney & Pancreas Transplant Handbook

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42 LIVING DONORS Kidney & Pancreas Transplant Handbook

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44 Dear Potential Kidney Donor, Thank you for calling the UNC Center for Transplant Care to ask about giving someone your kidney. I am your Independent Donor Advocate. That means I am here to help you through all of the steps of donation. I am here for you. I do not work with the person who might get your kidney. You can call me with any questions you may have. I will do my best to help you. My number is There is a lot to learn so you can make a decision that is right for you. Please take time to read all of the information in this booklet. The first and most important thing for you to know is that if you ever decide that this is not something you want to do at any point along the way you can stop. Team members will help you stop the process. We can stop it in a way that is private so you do not have to tell anyone else that you have changed your mind. It must be your decision to give your kidney. We will remind you of this important fact again and again. Donating a kidney is a big decision. It will take a lot of your time and there are some risks. If you choose to start the donor work up, we will go over all of this again, in person. If you have a question about any of it beforehand, please call me. We want to make sure that you have all your questions answered. If you want to take the next step after you have read this book, please complete the Donor Personal Health Summary (see back pocket) and send it back. Sincerely, Laurie McDonald, LCSW, CCTSW Independent Donor Advocate Kidney & Pancreas Transplant Handbook Page 30

45 KIDNEY DONATION Before you can donate a kidney, you need to have a full medical work up. The work up has some risks and the surgery to donate does too. We want to make sure you know about any possible risks before you decide to do this. We will teach you about all parts of the donation process: Giving Consent to the evaluation and the surgery Completing the Medical and Psychosocial Evaluation Taking care of yourself before and after surgery Having the required follow up testing: We will see you back in our clinic within two weeks of surgery, and then we want to make sure you are doing well six months after surgery, and one year and two years later Why we do the Evaluation Living kidney donors are usually fairly young and healthy. We will not let people donate a kidney who have current kidney disease or who have a known high risk to develop chronic kidney disease. Chronic Kidney Disease (CKD) does not usually occur until people are in their 40 s and 50 s. End Stage Renal Disease (ESRD) that requires dialysis usually does not occur before age 60. For young healthy donors, we are generally not able to fully predict if you will end up with kidney disease in your lifetime, or if you will ever need dialysis. Kidney & Pancreas Transplant Handbook Page 31

46 What You Need To Know About Living Kidney Donation When you donate a kidney You are helping to improve the quality of another person s life It should not change your lifestyle in a major way. For instance, donating a kidney does not change how long you may live o Women can still have children after donation. o Your chance of getting kidney disease in your remaining kidney will not change. o One kidney does not do as much work as two kidneys do together, but people can live very well with just one kidney. o About two to four out of every 100 people are born with only one kidney and they can expect to live a full life without kidney issues. o The remaining kidney takes over most but not all the function of both kidneys. o Donating a kidney means that you will have about 25 35% permanent loss of kidney function after donation. What You Need To Know Before You Start Your Evaluation You must first have both a medical and a psychosocial work up. This means: You will have to go through several medical tests. You will have to answer many questions about yourself (Donor Personal Health Summary). Kidney & Pancreas Transplant Handbook Page 32

47 The evaluation will be done at UNC over two three days. It usually takes about one month to finish your testing. It could take more time or less, based on what is going on with you and the person who might get your kidney. Your safety is important The team may decide that you should not donate a kidney. For example, during your evaluation we may find problems that could cause harm to you or the possible recipient if you donate. If that happens o We will tell you why you should not or cannot donate a kidney. o Our decision may be different from another transplant center. It does not mean that all other transplant centers would make the same decision. EVALUATION RISKS There are some risks to having a donor evaluation. Some of them are: You could have an allergic reaction to dye used in some medical tests. We could find that you have an infection that you did not know about. We may have to report the infection to the health department (for example, tuberculosis, or HIV, or Hepatitis). We could find that you have a serious health problem that you did not know about, such as cancer Kidney & Pancreas Transplant Handbook Page 33

48 You might also need more tests or treatment that you might have to pay for yourself We might find out things about your family health history that you did not know about. Some of these findings could be upsetting. There are also risks to the recipient with every transplant You can give someone an infection when you donate a kidney. We will test you and the recipient for infections, such as Hepatitis B and C, and HIV. If you take part in high risk behavior, you can pass along an infection in the kidney you donate. The Donor Personal Health Summary (back pocket), as well as the doctor that sees you, will ask about high risk behaviors. Some examples of high risk behaviors are: o illegal drug use, o getting paid for sex, o men having sex with other men in the last 12 months, o being in jail/prison in the last 12 months, o newly diagnosed with a sexually transmitted disease Please answer the questions in the Donor Personal Health Summary honestly. If you answer, yes to the high risk questions, we will talk with you before you could donate. If it is OK to go ahead with donation, we may need to tell your recipient that there may be a higher risk to them for infection. You may not want this person to know that you have had high risk behaviors. We would always get your permission first. You can decide not to donate and it will remain private. Kidney & Pancreas Transplant Handbook Page 34

49 DONATION RISKS There are risks that come with donating your kidney too. Below you will find some of the risks. There are other possible risks not listed here. Some of these problems may not last long. Some problems could last forever. Medical or surgical problems that could happen to you: o You will have a scar from the incision. You will have pain after surgery, but we will give you pain medicine for pain control. You may feel tired. You may have other problems that are common with any kind of surgery. You may feel numb near the wound. o You could have problems with your stomach and bowels. You may have gas, or feel queasy. You could have a bowel blockage in the first few days or weeks after donation. o You could have an infection; for example, at the wound site, inside your bladder or inside your lungs, like pneumonia. o You may have injury to other organs such as collapse of lung, or inflammation of lung. o It would be very rare, but your kidneys could fail, and you might need a transplant. If you should need a transplant at any time in the future after donating, you would have a priority when you are put on the Transplant Waiting List. o You may get a hernia in the area of the wound. You should not do heavy lifting for 6 12 weeks after surgery. Kidney & Pancreas Transplant Handbook Page 35

50 o You may develop blood clots. To reduce the risk for blood clots during and after surgery, women who take hormones for birth control or for menopause symptoms, will need to stop taking/using these six weeks before donating a kidney. o You may have bleeding that needs a blood transfusion. o As with any type of surgery, there is a very low risk of death during surgery while getting the medicine that puts you to sleep. One study that followed 80,000 donors showed that three percent or about 25 people died from surgery. This rate has not changed over the past 15 years. o The edges of your wound could pull apart, or you may have fluid build up in the wound. o You could have heart problems, such as abnormal heart rhythms, a heart attack or a stroke. o Black and Hispanic people are more likely than white people to develop chronic kidney disease (CKD), hypertension (high blood pressure) and diabetes after donating. o IF you plan to get pregnant after donating, you may have a higher risk than usual for a miscarriage, you may develop diabetes related pregnancy or high blood pressure (gestational diabetes and, gestational hypertension and preeclampsia (high blood pressure leading to seizures if not treated)). It is generally suggested that a woman be finished having children before donating a kidney but it is not necessary. Kidney & Pancreas Transplant Handbook Page 36

51 Emotional problems that might happen: o You may have strong feelings after the surgery. You might be worried about how you look after the surgery (the scar), or you may feel nervous or have a change in your way of life that could also affect your family or the family of the recipient. You may feel guilt and worry that you have to have someone else take care of you after surgery, even for a short time. o You may feel sad if the person who gets your kidney gets sick again, rejects the kidney or dies. o Your life may change in ways you do not like (due to money issues, or limits on what you can do, etc.) o You may have more severe anxiety or depression called Post traumatic stress disorder. Financial problems that could happen: o You might have to spend extra money of your own for travel, housing, and childcare. (There are programs that might be able to help with some of these costs. Ask your social worker.) o You will need to have medical follow up after donation for the rest of your life, and you will be responsible for paying for this. o You could lose pay if you have to take time off work. o If you cannot work for some reason, you could lose your job. o You could have trouble finding a new job. o You could have trouble getting, keeping or paying for insurance: Kidney & Pancreas Transplant Handbook Page 37

52 Health insurance Disability insurance Life insurance o You might have health problems after surgery that you will have to pay for yourself or with your own health insurance. There are some other things you need to know, too: o People who need a kidney transplant must have a medical and psychosocial evaluation too (see the front part of this book) o The person who gets your kidney may have risks. For example: The transplanted kidney may not work well. The recipient may have a greater chance of death due to surgery. They could have problems such as return of their kidney disease, kidney rejection, infections, or even death. o Even if you are going through the evaluation, the recipient may get a kidney from a deceased donor before you are approved to donate. o It is against federal law to get money or gifts in return for your kidney. o If the recipient does not get their transplant at a Medicare approved hospital, they may not be able to get their transplant medicine paid for under Medicare Part B. UNC is a Medicare approved hospital. o We will protect your privacy and the privacy of the person who will get your kidney. But there are some limits to privacy, such as: Kidney & Pancreas Transplant Handbook Page 38

53 When someone is in danger of hurting himself or others, we have to tell someone to get help. If you get certain infections or cancer in the first two years after surgery, we have to tell the person who got your kidney, that person s transplant center, and other health agencies. Living Donor Tests These tests are done to make sure that you, as a donor are healthy with normal kidneys and that giving one kidney away will not harm you. If there are any concerns, we will not let you give your kidney. The tests are done while you are an outpatient. LAB TESTS To check blood type A cross match to make sure your kidney will be a good match for the recipient A 24 hour urine test (or special scan) to check kidney health Your doctor may ask for other urine tests if needed RENAL ULTRASOUND To check kidney health, size, shape, etc. CHEST X RAY To check heart and lung health EKG Kidney & Pancreas Transplant Handbook Page 39

54 To check heart health CT (Computerized Tomography) Scan (also called a CAT scan) An x ray that gives the surgeon a good picture of the blood vessels leading to the kidneys This test helps decide which kidney will be donated An IV needle will be placed in your arm so that dye (called contrast) can be given Additional Tests Donors over the age of 50 will need to have extra tests to check for colon cancer and to check the heart The heart stress test can be done at UNC Hospitals The colon screen can be done through your own doctor or at UNC Hospitals. Female donors will need to have A current PAP test If over 40 years old, a current screening for breast cancer (mammogram) Your Living Donor Team We are Here To Help You When You Visit UNC SOCIAL WORKER and PSYCHOLOGIST will talk to you about: Your evaluation Your medical, psychological, and social history Kidney & Pancreas Transplant Handbook Page 40

55 Why you want to donate, what your questions and concerns are, how much you know about organ donation, your risks and possible recipient risks, and who will be able to help you after surgery You will be given a chance to talk about any pressures you may feel to donate FINANCIAL COORDINATOR will talk to you about: Any costs you may have during the testing or donation process and how the recipient s insurance coverage will work NEPHROLOGIST (Kidney doctor) will talk to you about: Your medical history and do a physical exam The donation process and any possible medical reasons that would prevent you from being a kidney donor Your test results Added tests that you need as part of the work up TRANSPLANT SURGEON will talk with you about Your test results The surgery, risks of surgery, and what to expect after surgery DONOR NURSE COORDINATOR The nurse that will help you through the transplant evaluation process. Kidney & Pancreas Transplant Handbook Page 41

56 When the tests are finished, we will review all your tests results with you and tell you if you would be a good kidney donor. If it is decided that you can donate a kidney, and your recipient is cleared to receive your kidney, then we will plan a surgery date. When the surgery happens can depend on many things: The health status of the recipient Insurance rules The surgery schedule Finding a time that works for both you and the recipient. A Few Days Before Donation Surgery 1. Tests will be done a second time Blood tests EKG Chest X ray 2. You will have a physical exam 3. You will be given a list of what to do the night before surgery 4. You will sign the consent form for surgery NOTE: Sometimes a recipient and donor go through the pre transplant work up and the surgery is cancelled at the last minute for a medical problem we cannot control. When this happens, the recipient will stay on our deceased donor transplant Waiting List. If possible, surgery will be rescheduled as soon as it is medically safe to do so. Kidney & Pancreas Transplant Handbook Page 42

57 Day of Surgery Check in at the hospital on the day of surgery at 6:00 AM You will have a needle placed in your vein (an IV ), so you can have fluids during and after the surgery. Once you are in the operating room and asleep, several things will occur: A tube (Foley catheter) will be put into your bladder. This lets us measure how much urine you are making during and after surgery. It will be taken out one or two days after surgery. This allows the doctors to watch the urine output of the kidney still in your body. Types of Donor Surgery There are two types of living donor kidney surgery: laparoscopic and open flank The most common one is a laparoscopic donor surgery o We have done this at UNC Hospitals since 1997 o UNC Hospitals was the first transplant program in North Carolina to do this surgery o The surgeon uses very small tools A laparoscope is a thin lighted tube that is placed into your abdomen. It allows the cuts in the skin to be small and less painful, and you will heal faster o The small opening in your skin to remove the kidney can be either: Vertical, meaning the opening is up and down Horizontal, meaning the opening is from side to side The open flank surgery Kidney & Pancreas Transplant Handbook Page 43

58 o The wound is about six to eight inches long on the right or left side of your abdomen under the ribs. o The skin and muscle need to be cut in order to reach the kidney. o The lowest rib on that side may be also taken out so the surgeons can get to the kidney. o Taking out the rib may require a longer healing period but will not cause any long term problems for you. After Surgery Care When the surgery is over, the surgeon will come and talk with your family after surgery and let them know how you are doing. After the operation, you will go to the recovery room (PACU or Post Anesthesia Care Unit) for several hours where you will be watched very carefully until you are fully awake. You will get medicines for pain and IV fluids. Your vital signs (blood pressure, heart rate, breathing, and temperature) will be checked frequently. After the recovery room, you go to the Transplant Floor for the rest of your hospital stay. Right after the surgery, pain is helped by a Patient Controlled Analgesia (PCA) pump. It is a pump that puts pain medicine directly into the IV when a button is pushed. It is set so it cannot give too much medicine. Once the IV is taken out, you will be given pain medicine to take by mouth. Kidney & Pancreas Transplant Handbook Page 44

59 The amount of urine you are making will be checked frequently after surgery. The Foley catheter will be taken out after the first day or two. After surgery, the diet will be set by the doctors. Due to the surgery and pain medicines, the bowels are slowed for a short time. You will be able to drink and eat once this returns to normal. Your diet will progress to regular food very slowly. You will start with liquids and by the time you go home, you should be back to your usual diet. The most common problem after kidney donation is moving your bowels. You will be given medicine to help with going to the bathroom. You will need to take the medicines at home for a while. Walking around as much as possible and drinking fluids will help your bowels work as they did before the surgery. The incision will have a dressing over it. We will teach you how to take care of your incision and change the dressing. The nurses will ask you to turn in bed, cough, and breathe deeply at least every one to two hours while awake. You can help decrease problems such as pneumonia, constipation, or blood clots in your legs if you cough, take deep breaths, and walk a lot. Getting Ready to Leave the Hospital The hospital stay is usually two to four days after surgery. You will be taught how to take care of the wound and what pain medicine can be used before you leave. Kidney & Pancreas Transplant Handbook Page 45