Adult Lung Transplant

Transcription

1 University of Minnesota Health Transplant Services is a collaboration between University of Minnesota Physicians and University of Minnesota Medical Center Adult Lung Transplant A Guide for Patients If you are deaf or hard of hearing, please let us know. We provide many free services including sign language interpreters, oral interpreters, TTYs, telephone amplifiers, note takers and written materials.

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3 Since 1986, University of Minnesota Physicians doctors have performed more than 900 lung and heart-lung transplants in adults and children. This makes our program one of the most active in the world. Recent statistics show that our results meet or exceed expected standards. For current survival rates and other statistics, you may visit one of the websites below. We will be happy to explain the details in the reports that interest you. One-year Survival Rates for Lung Transplant: Scientific Registry of Transplant Recipients: The Organ Procurement and Transplant Network: optn.transplant.hrsa.gov Many patients may qualify for a lung transplant, including those with: Emphysema and other diseases that obstruct airflow to the lungs. Inherited diseases, such as cystic fibrosis and alpha-1 antitrypsin deficiency. Diseases that cause scarring and restrict lung function, such as pulmonary fibrosis. Contents Who can have a transplant?...2 Your transplant evaluation...2 After the evaluation...5 Adult transplant waiting list...5 Your donor...6 Waiting for your transplant...6 Coming in for your transplant surgery...9 After your transplant...10 Leaving the hospital...10 At home...11 Possible complications after transplant...12 Checking your vital signs...13 Contacting UNOS (United Network for Organ Sharing)...13 We are here to help...14 Diseases that affect the blood vessels of the lungs, such as pulmonary hypertension (high blood pressure in the lungs). This booklet provides general information about having a transplant at the University of Minnesota Medical Center. It explains what you can expect during your transplant evaluation and your hospital stay. It also describes your role in caring for yourself after your transplant. Please ask questions at any time. 1

4 Who can have a transplant? To qualify for a transplant, you must be fairly healthy despite your lung or heart-lung disease. Age: To be considered for a lung transplant, you should be 70 years old or younger. We also consider people who are 70 to 75 years old and in excellent health on a case-by-case basis. Weight: If you are overweight, you should have a BMI (body mass index) below 30. We can tell you your BMI. If you are underweight (your BMI is under 18), a dietitian must check your nutrition before you can have a transplant. Heart disease: If you have heart disease and you have had bypass surgery or heart damage, you will be assessed on a case-by-case basis. Liver or kidney disease: If you have had liver cirrhosis or kidney failure, you might not qualify. Osteoporosis (thinning of the bones): If you have severe symptoms, you might not qualify. Cancer: If you have had cancer in the past 5 years, you might not qualify. Smoking: You must be nicotine-free for at least 6 months before we will schedule an evaluation for transplant. (This means no nicotine products, including nicotine gum, e-cigarettes, the nicotine patch and chewing tobacco.) If you are a recent smoker, you should enroll in a quit-smoking program. Mental health: If you have mental health problems that cannot be controlled, you may not qualify for a transplant. Support: You must have family or friends who are willing and able to assist in your care. Other medical problems may prevent you from having a transplant. If you have questions, call the Transplant Center and ask to speak with a lung transplant coordinator. Your transplant evaluation Your doctor will tell you when it is time to meet with our transplant team. You will be asked to call us to start the process. At that time, please contact your insurance provider to ask about your coverage. Explain that you will have a lung transplant evaluation at the University of Minnesota Medical Center. This is also a good time to discuss post-transplant costs for home care and medicines. We will request your medical records. Once we review your records, we will call you and may schedule an evaluation. Most evaluations take 4 to 5 days. You will have several doctor and clinic visits. The goals of your evaluation are to: Check for problems that might occur during or after your transplant Gather recent medical information for the surgery Review and adjust your diet and treatment so you will be in the best possible condition for the transplant Teach you more about lung transplant surgery, after care and what to expect while waiting for your transplant Allow you to meet the transplant team Discuss your transplant options Financial resources: You will need to make sure that you have insurance or other resources to pay for follow-up care and lifelong medicines. 2

5 Please bring the following to each visit: A family member or close friend. This person can help you take notes and ask questions. Your medicines and oxygen supply. If you use oxygen, you will need enough to get to and from the clinic each day. We can refill your liquid oxygen tank at the clinic. Copies of your medical records and chest X-rays, if we do not already have them. Comfortable clothes and walking shoes. A book or magazine to read while you wait between your tests. Drug, alcohol and nicotine assessment If you have a history of drug use or heavy alcohol use, you may need to have a formal chemical dependency evaluation. You would need to follow any advice, including further treatment if it is prescribed. You must be nicotine-free for at least 6 months before starting your transplant evaluation. (No smoking, chewing tobacco, nicotine gum, nicotine patch or e-cigarettes.) We may test you for nicotine use at any time. You will be asked to sign a contract to show that you agree to remain nicotine-free. All recent smokers will need to take part in a quit-smoking program. Meetings with doctors You will meet the doctors on the transplant team. Your transplant coordinator may be with you during these visits. A pulmonologist (lung doctor) will review your records. If the doctor thinks you might need a transplant, you will see the doctor regularly for exams. The doctor will help manage your disease. The surgeon will explain the surgery and possible risks. You may need to see other doctors as well, including a cardiologist (heart doctor), nephrologist (kidney doctor), endocrinologist (hormone doctor), neurologist (brain doctor) and psychiatrist. Feel free to ask questions at any time. Blood, urine and skin patch tests You will have many blood and urine tests, including: Standard tests to measure liver and kidney function, protein levels, electrolytes and clotting factors Tests to check your blood type. (We will check your blood type twice.) PSA test for men over 55 to check for prostate cancer Pregnancy test for women of childbearing age Tests for certain viruses such as hepatitis A, hepatitis B, hepatitis C and HIV Tests for nicotine use Blood test to see if you have ever been exposed to tuberculosis (an infection that affects the lungs). Please let us know if you have ever had a positive tuberculosis test. 3

6 Nutrition check You will meet with a dietitian. The dietitian may check your height and weight, then review your lab results to check your nutrient levels. The dietitian may ask you about your eating and drinking habits, then measure your routine calorie and protein totals. You may also receive advice about your diet. Please tell the dietitian if you would like a follow-up visit. Scans and X-rays You will have: A chest CT scan. This is a special X-ray that makes cross-section pictures of your chest. We use these pictures to learn more about your disease. Chest X-rays. The X-rays are used to measure your lungs. This tells us the size your donor will need to be. Spine and hip X-rays and bone density (DEXA) scan. If you have a transplant, you will need to take steroid medicines. Steroids can lead to osteoporosis (brittle bones). These tests will tell us if you have this problem or if you are at risk for it. If you have bone disease, we may have you take medicine to strengthen your bones before your transplant. Please tell your coordinator if you have had a DEXA scan in the past. Perfusion scan. This shows how much blood is getting to each lung. The results may tell us which lung should be transplanted, if you are having a single-lung transplant. Other scans as needed. If you need more tests, we will explain them in detail. Lung tests Breathing tests (called pulmonary function tests) will tell us the extent and nature of your lung disease. A 6-minute walk test will tell us about your ability to exercise. Heart tests You will have: An echocardiogram (echo). Sound waves will tell us about the size and function of your heart. An electrocardiogram (EKG). This shows the patterns of the electrical waves in your heart. It will help us see how your heart is working. Coronary angiogram (heart catheterization). This test will measure the pressures in your heart. It will also look for any blockage in the vessels in your heart. You will learn more about this before the test. ȤȤ You cannot have anything to eat or drink for 6 to 8 hours before this test. We will try to schedule it early in the morning. ȤȤ We will likely give you medicine to help you relax before the test. ȤȤ After the test, you will lie flat with your leg straight for 2 to 4 hours. ȤȤ You will need someone to drive you home. Swallowing and GERD tests A swallowing test (called esophageal manometry) will show how well your esophagus works when you swallow. (Your esophagus connects your throat to your stomach.) To do this test, we will moisten the inside of the nose with gel. We will then thread a small tube through your nose and down into your esophagus. 4

7 After the swallowing test, we will leave an even smaller tube in place overnight (called a 24-hour ph test). You do not have to stay overnight in the hospital. This test will check the acid level in your esophagus. If the acid level is high, you may have GERD (gastroesophageal reflux disease). GERD can cause lung problems before and after a transplant. If you have GERD, it is important for us to treat it. Support services A pulmonary (lung) rehab therapist will discuss how you can stay in the best possible shape while you wait for your transplant. If needed, the therapist will direct you to a rehab program near your home. A social worker will discuss support services, financial concerns and changes that you and your family may need to make. A financial case manager will look at your insurance coverage for the transplant, medicines and care after the transplant. Routine health care Have your doctor send the results of any tests to transplant coordinator. You should complete any dental work that is needed before your transplant. Please see your dentist every 6 months while you are waiting for the transplant. Get up-to-date on vaccinations. Ask your primary care doctor which vaccines you and your family might need. Bring your vaccination records to your evaluation. Women should see their primary care doctor for a yearly Pap test and, if they are over age 40, a mammogram. If you have had an abnormal test, tell your transplant coordinator. After the evaluation At the end of your evaluation, the transplant team will meet to discuss your results. This team includes all of the people you have seen during your work-up. They will discuss any concerns they may have about your test results and may suggest further testing. We will call you with their decision and explain the next steps. If they decide that you are a good candidate for transplant, we will send your details to your insurance company to ask for approval. Adult transplant waiting list Once your insurance approves your transplant, you will be placed on the transplant waiting list. Your name, blood type, body size and test results will go into a national database at the United Network for Organ Sharing (UNOS). UNOS directs who can receive deceased (non-living) donor organs throughout the United States. (For more about UNOS, see page 13.) You will receive a lung allocation score. This score shows how serious your medical condition is. Scores range from 0 to 100. Patients with the highest scores move to the top of the waiting list. You must return to the Transplant Center at least every 6 months to repeat certain tests. We will use your test results to update your score. If you do not have these tests, your score may go to 0. The amount of time you will wait for an organ depends on your score, blood type and body size. You may wait a few days, several months or even years. Research studies We may invite you to take part in studies before and after your transplant. Doctors will discuss this with you at your clinic visits. 5

8 Your donor Your new organs will be matched according to size and blood type. They must fit into the body about the same as the original organs. All lungs come from deceased donors. Deceased donors are people whose organs are donated soon after they die. You will not be given personal details about your deceased donor. If you and your family wish to express your thanks, you may write a letter to the donor s family. Do not include your name or other personal details. Your nurse coordinator will forward your letter to the donor s family through LifeSource, our local agency that handles organ donation. There is a very small risk of getting a disease from a deceased donor (such as HIV or hepatitis). All donors are tested for disease, but some diseases may not show positive tests at the time of testing. Waiting for your transplant It may be some time before you have your transplant surgery. While you wait, it is important to follow the steps listed below. See your doctor regularly It is your job to make sure you are scheduled for all doctor visits. You will need to see a lung doctor (pulmonologist) from The Transplant Center at least every 6 months. The lung doctor will assess your health, order lab tests, adjust your medicines and tell you how often you need to have check-ups. You will need to see your primary care doctor for general care. Your doctors will write to each other to share the results of your exams and note any changes in your health. Follow your rehab or exercise program You need to be in the best condition possible before your surgery. We strongly suggest you begin a pulmonary (lung) rehab program while you wait for your transplant. Or you may follow a home exercise program with the help of your primary care doctor. As a result of your lung disease, you may have: shortness of breath decreased activity level muscle weakness poor fitness fear or anxiety due to breathing problems Rehab can help you control your symptoms and improve your ability to breathe. 6

9 Eat the right foods A healthy diet is vital to the success of your transplant. Follow the diet plan you were given. If you are overweight, your BMI should be below 30 before you have a transplant. If you are underweight and have advanced lung disease, you should have a BMI of 18 or higher. If you cannot maintain your weight, your dietitian and doctors will help you make a healthy meal plan. If you do not meet the required weight, you may be taken off of the waiting list until these goals are met. No smoking or other forms of nicotine We may test you for nicotine at any time. If we find nicotine in your body, you will be taken off the waiting list. Be sure we know how to contact you We must have current phone numbers where you can be reached 24 hours a day. This may include the numbers for close friends, family and work. Please call us right away if a phone number changes. Tips: Always carry your cell phone or pager. If your home computer connects to your only phone line, keep your cell phone or pager on when using the computer. Be sure that one family member always knows where to reach you. You must call the transplant office any time you are in the hospital. Plan what to bring to the hospital Make a list of items to bring with you to the hospital. Be sure to bring: Comfortable clothes (jogging suits, sleepwear) that have soft, elastic waistbands or no waistbands Your transplant handbook All of the medicines you are currently taking Your oxygen tank Plan your housing and transportation Before your transplant: If donor organs become available, you must arrive within 2 to 3 hours of our phone call. If you live more than 3 hours from the hospital, we will help you arrange air travel. Discuss this with your coordinator. After transplant: You will need to stay nearby for 3 months after leaving the hospital. You will come back to the clinic often during this time. If you live outside of the Twin Cities area, you may need to find housing in the area. Your social worker can help you. Arrange for support and care You must have someone with you at the time of transplant and for at least 3 months after. Family and friends can take turns providing this support. It is important to have one main person to organize your care. Transplants cannot be pre-scheduled. Your caregivers will need to discuss this with employers in advance. When you leave the hospital, someone must be with you 24 hours a day. This person will help with meals, medicines, rides to the clinic and other needs. Your doctor and transplant coordinator will let you know when you need less help. 7

10 Plan for your children and pets Most lung recipients are in the hospital for an average of 2 weeks. Some people stay longer. If you have children, now is the time to plan for their care while you are in the hospital. Get them used to another home if they will be staying there. If you have pets, you will need to arrange for their care as well. Your children may visit you in the hospital. An adult must stay with them at all times. They cannot visit if they have any illness that might spread to others. Plan where your family can stay If family and friends will stay in the Twin Cities while you are in the hospital, they will need a place to sleep. You may ask your social worker for options. Or, call our Accommodations Office at or Family members will not have a bed in the hospital. Prepare your family and friends Please tell visitors that plants and flowers (cut or dried) are not allowed in your room. Your medicines will lower your immune system, and plants and flowers may increase your risk for infection. When you return home, this will not be a problem. Remind your loved ones that they need to take care of themselves in order to be the best support for you. They must get plenty of sleep, eat regular meals and limit caffeine and tobacco. You might also warn them that you will tire easily for the first 3 to 6 months after your transplant. Prepare yourself emotionally Waiting for a transplant is stressful. Patients have told us that being in the hospital after the transplant is also difficult. Please think of how you and your family have dealt with great stress in the past. Think about what helped you through these periods and what you would like to do differently this time. You may attend our transplant support group at any time. This is a chance for patients and families to share experiences and help each other cope with common concerns. It also provides information on topics of interest to patients and their families. The support group meets on the first Monday of every month from 7 to 8:30 p.m., and all other Mondays from 11 a.m. to 12 noon. Go to: Bridges Conference Room University of Minnesota Medical Center, 8th floor 500 Harvard Street, Minneapolis, MN If you cannot attend this support group, your social worker may help you find a support group in your area. If you get ill while you wait Keep your transplant team informed of your health. Please tell us about any: Illness or infection Time spent in the hospital Antibiotic (germ-fighting) medicine you take Prednisone bursts (short-term use of prednisone) Blood transfusion Any infection must be treated before your transplant. If your overall health gets worse, contact your transplant coordinator as soon as you can. 8

11 Coming in for your transplant surgery When an organ becomes available, a transplant coordinator will call you. Calls like this often come at night, so be sure to answer your phone. The coordinator will ask you to come to the hospital as quickly (and safely) as possible. Please be sure to: Get this person s name and the hospital s phone number. Ask if you should stop any of your medicines. If you take insulin for diabetes, ask what to do about your insulin. The surgery Lung transplants usually take about 6 to 8 hours. You will have the following incisions (cuts): Single-lung transplants: We will cut along your side and back. We may need to remove a rib. Bilateral transplants (receiving two lungs): We will cut across the rib cage and breastbone or down the breastbone. Stop all foods and liquids. If you have taken insulin, you may eat hard candy or drink glucose fluids (juice, regular soda pop) to prevent low blood sugar. Pack all the items on your list (see page 7). Once you arrive at the hospital, please stop at the Admissions Department. They will know you are coming and will direct you to your unit. Once you are admitted, we will do blood tests and prepare you for surgery. Double lung transplant Your family can stay with you until it is time to go to the operating room. We will then direct them to the waiting area on the third floor. After your surgery, the doctors will meet them there. Single lung transplant Double lung transplant or single lung transplant 9

12 After your transplant Intensive Care Unit (ICU) After surgery, we will take you to the adult ICU (unit 4E). You will stay there until you are stable and breathing on your own. Visiting hours are limited. Please ask your nurse for more information. You may be slow to wake up after surgery. We will give you medicine to control pain and help you relax. You will find that many tubes were placed in your body during surgery. Endotracheal (breathing) tube: You will have a tube in your throat to help you breathe. It may be uncomfortable, but we will give you medicine to help you relax. You cannot talk while the tube is in your mouth. The doctors will remove the tube when your lungs are working well enough. Chest tubes: Tubes will be placed in your chest to help drain fluid. You will have these for a few days. Foley catheter (urinary tube): This tube drains the urine from your bladder. We will remove the tube as soon as you can get out of bed. Intravenous (IV) lines: You will have many IV lines, including a central line. This tube is placed in a large vein in your neck. We may use it to give you medicines, fluids and blood transfusions or to take blood samples and check fluid pressures. You may have this until the day you leave the hospital. Nasogastric (NG) tube: This keeps your stomach empty so you do not feel sick. The tube is placed in the nose and down into your stomach during surgery. It will stay in place until you can pass gas and have bowel movements. You can not eat when you have an NG tube. Compression sleeves: These sleeves surround your lower legs. They will inflate and deflate every so often. This helps the blood flow and prevents blood clots. Once you can get up and walk, you will not need them. Step-down Unit Once you are stable and your breathing tube has been removed, we will move you to the Step-down Unit. You will be in a private room. We will draw blood for tests daily, usually through your central line. You will also have X-rays. You will learn about your medicines and how to take care of yourself. Education will be provided by your care team. Please bring the transplant handbook and you received during your evaluation. This provides general information. Your nurse will work closely with you as you learn. By the time you go home you will know how to take your medicines, record your lab values, check your blood pressure and more. Once you go home, you will need to keep track of your lab values. Please bring your lab book to all clinic visits. Leaving the hospital Expect to be in the hospital for at least 2 weeks. Some people stay longer. If you were very sick before your transplant, you may move to a care facility or rehab (rehabilitation) unit for a short time. After leaving the hospital, you will need to stay in the Twin Cities area for 3 months. During this time, you will come to the clinic often. Bring your medicine card and lab book to each visit. 10

13 At home If you live far from the Twin Cities, your care team will tell you when you are ready to move back home. Blood tests You will need blood tests for the rest of your life. This will tell us how well your medicines are working. You must write your lab results in your lab book. The transplant coordinator will contact you if there are changes or concerns. Follow-up visits After the first 3 months, you must return to the Transplant Center every 2 months for one year. After that, you will come less often. You will be seen more often if you have any special problems. You will start seeing your primary care doctor again after the first 3 months. Your doctor will check your heart, blood pressure, cholesterol and general health. The Transplant Center will provide care for your new organs. Report any new medicines to your transplant coordinator. Some medicines may change how your transplant drugs work. Healing after surgery Your energy level will be low when you first return home. Keep in mind that you just went through a major surgery and will need time to recover. It may take 3 to 6 months before you start to feel normal again. Please remember: You should not lift more than 10 pounds for at least 6 weeks after you return home. You may not feel like eating much. Do your best to eat small meals and snacks throughout the day to maintain your weight. Some people have problems sleeping. If you need to take a nap in the afternoon, do so. Your energy will improve with time. The first year may be difficult. You will have many doctor visits and lab tests. Taking your medicines, having monthly blood tests and watching for problems will soon become your lifelong routine. It is very important for you to take part in your post-transplant care. Please stay in contact with your transplant coordinator. This will likely improve your long-term outcome. Future dental work After your transplant, you will need to take antibiotic (germ-fighting) medicine before any dental visit for the first 6 months after transplant. Transplant medicines The cells in your body that fight infection and attack foreign matter will consider your new organs to be foreign as well. These cells can attack the new tissue. If not controlled, they could cause the body to reject the new organ(s). To prevent or control rejection, you must take antirejection drugs (immunosuppressive medicines) for the rest of your life. These medicines may reduce your body s ability to fight infections. If you become ill, you may be sick longer than normal. To prevent some of the most common serious infections, you will need to take: an anti-fungal medicine for a short time (nystatin, Mycelex) an anti-viral medicine for 3 to 6 months (acyclovir, Valcyte) an antibiotic medicine for the rest of your life (Bactrim, Septra) 11

14 Other possible side effects are listed below. You may have more side effects right after the transplant, but these often go away over time. Regular check-ups may prevent side effects or catch them early so they can be managed. You will take three anti-rejection drugs by mouth every day. Your transplant doctors will tell you which drugs are best for you. They will explain the side effects and tell you how to manage them. Your anti-rejection drugs may include: Cyclosporine A (CSA; Neoral, Gengraf) or tacrolimus (FK506; Prograf): You will need regular blood tests to check the level of medicine in your blood. If it is too high, it can cause side effects such as hand tremors, tingling or headache. Long-term use of this medicine can cause kidney problems. Your doctor will watch for this. Azathioprine (AZA; Imuran): At first, AZA may cause your hair to thin. It can also decrease your white blood cell count. We may need to adjust your dose to maintain the right white blood cell count. Possible complications after transplant While some problems might appear soon after surgery, others may show up weeks, months and even years later. Infection The medicines used to prevent rejection will increase your chances for infection. To reduce your risk of infection, wash your hands often and avoid people who are ill. You must check your temperature daily. Call your coordinator if you have any symptoms of infection: Fever over F (38.3 C) when taken under the tongue Chills Shortness of breath Pain or redness at the incision site Nausea, vomiting or diarrhea Mycophenolate mofetil (MMF; CellCept): MMF may cause diarrhea (loose, watery stools), nausea (upset stomach) and vomiting (throwing up). It may also decrease your white blood cell count. Sirolimus (Rapamune, rapamycin): This may raise your cholesterol and triglycerides (blood fats). It may also decrease your white blood cell or platelet counts. Prednisone: In high doses, prednisone can cause slow healing. It can also cause increased appetite, weight gain, stomach irritation or ulcers, bloating, high blood sugar, bone and joint problems, sleeping problems, mood swings and depression. You will need to take this medicine for the rest of your life. If you are thinking about having a baby, please talk to your transplant doctor. 12 A change in the color or amount of sputum (the phlegm that comes up when you cough) You just do not feel right If you get an infection, it may slow your healing process. Most infections can be treated with medicine from your doctor. Organ rejection Rejection is your body s normal response to foreign tissue (such as a new lung or heart). Rejection may occur at any time. It is more likely to happen if you do not take your medicines as directed. As time goes on, your chance of rejection may decrease, but the risk never goes away. If you are having rejection, it is vital to catch it early. This improves the chances that the problem can be treated.

15 We will watch you closely for rejection. We will use these tests: Pulmonary function tests. These are breathing tests to see how well your lungs are working. Bronchoscopy with a lung biopsy. This is the only way to know for sure if you are having rejection. We will insert a long, thin tube into your nose and down into your lung. Then we will take a small lung sample. We most often get the results back the next day.if you are having rejection, you will be treated with medicine. If you ever stop taking your medicines, your body will reject your new organ. This could be life threatening. High blood pressure High blood pressure is common after a transplant. If you are being treated for high blood pressure, we may need to adjust your medicines. High blood sugar (diabetes) You may need to take medicine to treat high blood sugar. This could include pills or insulin shots. Kidney problems Some anti-rejection drugs can be hard on the kidneys. If your lab tests show kidney problems, we may change your medicines. Cancer Taken over many years, your anti-rejection drugs may increase your risk of cancer, especially skin cancer. For this reason, you should cover up before going out in the sun or use a sun block (at least SPF 15). Do not use tanning beds. Checking your vital signs You will need to check your vital signs regularly, both before and after your transplant. You should have the following items at home: Thermometer to check the temperature under your tongue. A high temperature or a fever is often a sign of infection. After your transplant, it may also signal rejection. Report any fever over F (38.3 C) to your transplant coordinator right away. Scale to check your weight. Your weight may go up or down a little each day based on fluid changes in the body. ȤȤ Many patients have a poor appetite right after surgery. Eating small meals often will help you get the calories you need to heal. ȤȤ Months or year later, you may find that you have a better than average appetite. It is important to avoid gaining too much weight. Blood pressure cuff. Many things affect blood pressure, including hormones, medicines, fluid in the body and how well your kidneys are working. Your primary care doctor will help you manage your blood pressure after your transplant. Write these values in the book Keeping Track of Lab Values and Vital Signs. Tell your transplant coordinator if there are changes or concerns. Contacting UNOS (United Network for Organ Sharing) UNOS offers a patient service line to help you and your family understand transplant data and organ allocation. You can also call to discuss any problems you may be having with your transplant center. Dial toll-free Your anti-rejection medicines may also increase your risk of lymphoma, a more serious form of cancer. 13

16 We are here to help After reading this booklet, you may feel overwhelmed with new information. Try to remember that you will have more time to learn during the wait for your transplant. We will help you as much as we can. You can reach your transplant coordinator by phone Monday through Friday, from 8:30 a.m. to 5 p.m. You should also use your clinic visits to ask any questions you might have. Remember that you are an important member of our transplant team. We expect to work closely with you to assure the best possible outcome for your transplant. University of Minnesota Health Clinics and Surgery Center 909 Fulton St SE Minneapolis, MN (transplant office) For informational purposes only. Not to replace the advice of your health care provider. Developed in collaboration with University of Minnesota Physicians. Copyright 2003, 2008 Fairview Health Services. All rights reserved. SMARTworks REV 12/17.