The Lung Transplant Process Welcome to University of Wisconsin Hospital and Clinics. This handout is designed to help you learn more about having a lung transplant. It s your book. Feel free to write in it and use it as you please. Be sure to ask your nurses and doctors any questions that you may have. Is a lung transplant right for me? Why do people need lung transplants? How are people referred to the transplant team? A lung transplant is a surgery in which your diseased lungs are removed from your body and replaced with healthy lungs from a donor. People need lung transplants when they have lung problems that get worse rather than better with treatment. Lung transplants are considered for people who have lung disease that can no longer be improved by surgery or drugs. Diseases that can be treated with lung transplantation Emphysema/COPD Cystic Fibrosis Idiopathic Pulmonary Fibrosis Primary Pulmonary Hypertension Alpha-1-Antitrypsin Deficiency Bronchiectasis Congenital Disease Sarcoidiosis Your local lung doctor (pulmonologist) has referred you to the UW Lung Transplant Program because she/he feels you may need a lung transplant. This process begins with a phone call to the Lung Transplant Program. The call can be made by you, your family, or your doctor. A nurse transplant coordinator will ask for your medical records to be sent to our office. Once we receive your medical records, the Lung Transplant Team reviews them and determines if a lung transplant is right for you. If the team feels you would be a good candidate, you will be scheduled for a clinic visit with a Transplant Coordinator and pulmonologist. This begins your evaluation process.
Early questions Why am I being considered for a lung transplant? Who is my transplant coordinator, and what does he or she do? Will my health insurance cover a lung transplant? Having a lung transplant evaluation Why is an evaluation done? What other aspects, besides my health, are considered? If the lung transplant team feels you would benefit from a lung transplant, an evaluation is scheduled. An evaluation is needed to see if you are physically and mentally able to withstand surgery. This includes a physical exam and talking with you about your recovery and the care you will need to do after transplant. We must be sure you have no serious health problems such as cancer, chronic illness, and tobacco, alcohol, or drug abuse. You also must be mentally able to manage the stress that comes with transplant. This requires a support person who can assist you during the evaluation and early months after transplant. In some cases, it could be for life. Please bring your support person with you for your first meeting with the transplant pulmonologist. At this visit, your coordinator will discuss the pros and cons of having a lung transplant. My primary support person is: 2
Common tests and procedures What tests and procedures can I expect? Why are they needed? You will have many tests performed. A nurse or doctor will explain which ones you need to have. They will also talk with you further about them. Feel free to ask questions. Many blood tests will be drawn during your transplant evaluation. Some of the tests include blood typing (done twice as required by UNOS), tissue-typing, liver function, kidney function, electrolytes, and human immunodeficiency virus (HIV). Bone density scan looks at the condition of your bones. An x-ray is taken. The test takes about one hour. Do not take calcium supplements for 24 hours before the test. Do not wear metal zippers. Women should not wear underwire bras as they interfere with the test. Chest CT is used to see if there is any existing disease of your lungs and shows the exact structure of the chest. Chest x-rays are used to learn more about the size of your heart and the presence or absence of lung disease. It will also show if you have fluid in your lungs that can be caused by heart disease. Echocardiogram uses harmless sound waves to produce images of the heart. The sound waves are bounced off the heart and produce images on a computer screen. This shows the size of your heart, thickness of the heart muscle, pumping strength, valve problems, and if there is fluid around the heart. Electrocardiogram (EKG) shows how well parts of your heart conduct electrical current. During this test you will need to lie still on a table for a few minutes. Esophageal manometry measures the movement and function of the esophagus and the valve muscle between the esophagus and stomach. The manometry test helps assess swallowing problems. A thin tube is passed through your mouth or nose and into your stomach. The tube is slowly passed back into your esophagus. When the tube is in your esophagus, you will be asked to swallow. The swallowing wave will be recorded. While the tube is in place other studies of your esophagus may be done. The tube will be removed when the test is done. The test will last 30 60 minutes. Heart catheterization evaluates the arteries and pressures in your heart. An intravenous (IV) is placed into an artery and vein. You will be given a mild sedative so you should have no pain. You will need to lie flat for several hours to prevent bleeding. You must have someone drive you home. Lung perfusion scan takes a picture of how blood flows through your lungs. A radioactive medicine is injected through an intravenous catheter and then a scanner will take pictures of your lungs. 3
Pulmonary function tests measure your lung function, capacity, and condition. You will be asked to take deep breaths and blow through a mouthpiece. This test helps learn more about the type and extent of your lung disease. Sinus films are x-rays taken of your sinuses in your forehead, nose and cheeks. This is done to check infections in the sinus area. 24-Hour ph monitoring is used to look for esophageal reflux. A small flexible tube is passed through your nose into your esophagus. The nurse connects the tube to a small recording device that measures the acid present in your stomach. You cannot have anything to eat or drink for four hours before this test. After the device is placed you may eat or drink normally. You should wear a blouse or shirt with buttons down the front. This makes it easier to change clothes later. You will return the next day to have the tube removed. The people you may meet Who will I meet? What do they do? A nurse transplant coordinator: This nurse will help to coordinate your care before and after surgery. Your transplant surgeon: This is a doctor who is specially trained to perform transplant surgeries. Your lung doctor (pulmonologist): A medical doctor who is expert in lung care will follow you after your surgery. Social worker: A social worker will talk with you about financial and insurance issues, your living situation, and supports you have to help you after transplant. The social worker may help you complete a Power of Attorney for Healthcare. Completion of this document allows you to designate someone you trust to make medical decisions on your behalf if you are unable to due to a physical or mental incapacity. It is important to discuss your wishes with your health care agent as they are representing your beliefs and values. This is a free services offered by UW Hospitals and Clinics and is vital to your treatment plan. Financial advisor: You will meet with an advisor to discuss your insurance coverage. You need to know and understand what is covered and to be sure that you can handle the long-term costs after transplant. You medication costs for life can be VERY expensive. Health psychologist: This person will talk with you about your coping skills and how you might handle living with a transplanted organ. This includes discussing depression and anxiety, which are common in people who have had transplants. 4
Infectious disease: These doctors look to see if you have any infections or any prior diseases that may need to be taken care of before you have a transplant. Dentist: You must have a dental exam and x-ray to be sure that your mouth and teeth are healthy. You may prefer to see your own dentist. All major dental work must be done before you are listed. Any infection in your mouth could increase your risk for a major infection. Dietitian: A dietitian will meet with you to talk about your nutritional needs. They will also discuss healthy food choices to maintain proper health before and after transplant. Commitment to follow-up care How long will I need to do follow-up care? What type of care is required? What things do I need to do? Your care after a lung transplant is for an entire lifetime. This long-term care includes: Biopsies Labs Medications Local MD/clinic appointments UWHC Lung Transplant clinic appointments and testing Organ allocation How does UNOS match organ donors with recipients? UNOS (United Network of Organ Sharing) formed the lung allocation system. This is used to ensure that lungs are offered to patients who need them the most and who will get the most benefit from the organs. Based on that information, a lung allocation score (LAS) is given to each transplant candidate. Lungs are then allocated based on the LAS, blood type, chest measurement or size, age, and location of the recipient and donor. It is very rare for there to be a tie between two candidates using the system. If a tie does occur, the amount of time a patient has been on the waiting list is taken into account. The lung allocation score is used to rank potential recipients ages 12 and over. It measures medical need and life expectancy of patients on the waiting list. Medical information for each transplant candidate is entered into UNOS and given a score from 0 to 100. This score takes into account: 5
Forced vital capacity This is a lung function test. It measures the amount of air you can breathe out after you breathe in as deeply as possible. This amount may be lower in patients with lung disease. Pulmonary artery pressure This is the pressure the heart must produce to pump blood through the lungs. This may be high in some people with severe lung disease. Oxygen at rest This is the amount of oxygen needed at rest to maintain ample oxygen levels in the blood. People with severe lung disease may need more oxygen. Age This is the candidate s age at the time lungs are offered. Body mass index BMI is a ratio of a person s weight to height. When used with other medical test results, this helps to evaluate health status. Diabetes This may be a predictor of health status in some people with lung disease. Functional status The New York Heart Association classifications measure effects that lung disease may have on a person s function in daily life. 6-minute walk distance In the 6-minute walk test, transplant candidates are asked to walk as far as they can in 6 minutes. The distance walked is a measure of functional status. Assisted ventilation The use of a ventilator to assist breathing may be a measure of disease severity and may affect success after a transplant. Pulmonary capillary wedge pressure (PCW or Wedge Pressure ) - Blood returning to the heart from the lungs must overcome this pressure. This can become higher when the heart is not pumping as well as it could. Serum creatinine This measures kidney function. High creatinine levels reflect impaired kidney function. This can be linked with severe lung disease. Diagnosis Research has shown that urgency among people needing a lung transplant and success after a lung transplant varies among people with different lung diseases. Bilirubin, Total Blood gases 6
Lung allocation scores change daily due to age and other factors that impact compatibility between the donor and recipient. Due to this, LAS are not made known to patients. When lungs become available and a match is made, the OPO staff calls the transplant center that has the first patient who appears on the list to make an organ offer. If the organ offer is accepted, a recipient will be called in. If the organ offer is not accepted, the OPO then makes an offer to the next person with the next appropriate LAS. Sometimes, after a recipient has been called in, the lungs are found to be unacceptable. In that case, the recipient is sent home without a transplant. Guide to mail order pharmacies An alternative to using a local pharmacy is to look into mail-order options. Shop around, as prices may vary and may be determined by your insurance plan. Financial planning for transplant What do I need from my insurance company to plan for a transplant? What questions about finances do I need to have answered? As you get ready for transplant, you will need to learn more about your insurance plan. Transplant patients are required to take medicines for the rest of their lives. In fact, you may need over 15 different transplant drugs. As a result, you must learn now about your drug co-pays or deductibles. You may need to stay in Madison for some time after your transplant. Since most insurance plans require patients to fill prescriptions in only certain drugstores, know where you can get them filled both in your hometown and in Madison. Plan ahead for monthly bills as well. Many plans have a yearly maximum for co-pays or deductibles. Once you have reached the limit, your insurance may pay 100%. To know your plan, refer to your insurance booklet and keep track of your healthcare expenses. Contact your insurance agent to find out how much you have left before you reach your lifetime and transplant maximums. This helps you to plan for secondary coverage or other options to cover any further expense. Once you reach the limit, insurance will not cover any further expense. Transplant patients often reach their limits. Know your co-pays and deductibles for clinic visits and procedures. Transplant patients receive lifelong follow-up care. Knowing your co-pays and deductibles will ensure that you are prepared to budget for this expense. 7
Know the referral guidelines of your health plan. UWHC is a hospital-based clinic. You will get separate bills from the hospital and the doctors for their services. If you fail to follow the guidelines, you may have to pay for the cost of a service which may have been covered. Once you have received your benefit summary from the financial counselor, you may have even more questions. Below are some common questions which other transplant patients have found helpful. 1. What would be my monthly total co-pay if I were prescribed 15 medications? What are the co-pays and deductibles for clinic visits and procedures that I need to pay out of pocket? How would this expense fit into my budget? 15 X $ (the co-pay amount per prescription) = $ Monthly clinic and procedure co-pays: $ per visit 2. My lifetime insurance maximum is:. How will I obtain coverage if I reach my lifetime max? 3. What would I do if my insurance was changed or dropped? Call a financial counselor at University of Wisconsin Hospital and Clinics 4. My health plan referral guidelines: 8
General Information for Resources Your social worker will give you many forms with resource information for patients and their support persons. We encourage you to read and keep all of that information. Lung Transplant Selected Internet Resources Alpha 1 Association: www.alpha1.org To identify those affected by Alpha-1 antitrypsin deficiency and to improve the quality of their lives through support, education, advocacy and research. COTA: www.cota.org 1-800-366-2682 Open to pediatric patients, patients still covered by their parents insurance up to 25 years old, patients with Cystic Fibrosis of any age in need of a double lung transplant. COTA s primary mission is to ensure that no U. S. citizen is ever denied a life-saving transplant or access to a transplant waiting list, due solely to the lack of funds. Lungs for Life: www.lungsforlife.org A resource of information and support for both the Cystic Fibrosis and transplant communities. National Foundation for Transplants: www.transplants.org 1-800-489-3863 Fund-raising campaigns for transplant candidates & recipients needing $10,000 or more for their transplant-related care and/or medications. Grants for patients, with smaller, non-recurring needs for medications and other transplant-related emergencies. HelpHopeLive (formerly NTAF): www.helphopelive.org 1-800-642-8399 HelpHOPELive works with families and volunteers throughout the United States to establish successful grass-roots fundraising campaigns in honor of individuals facing a transplant or for individuals who have sustained a catastrophic injury (including spinal cord injury or traumatic brain injury). Funds raised are sent to and held by HelpHOPELive in Regional Restricted Funds in honor of patients. Funds are administered by HelpHOPELive and disbursed upon application (www.helphopelive.org/online-application) and demonstration of financial need. Second Wind: www.2ndwind.org Established to improve the quality of life for lung transplant recipients, lung surgery candidates, people with related pulmonary concerns, and their families, by providing support, love, advocacy, education, and guidance. TransWeb: www.transweb.org Provides information about donation and transplantation to the general public in order to improve organ and tissue procurement efforts worldwide. Provides transplant patients and families worldwide with information specifically dealing with transplant-related issues and concerns. 9
Your health care team may have given you this information as part of your care. If so, please use it and call if you have any questions. If this information was not given to you as part of your care, please check with your doctor. This is not medical advice. This is not to be used for diagnosis or treatment of any medical condition. Because each person s health needs are different, you should talk with your doctor or others on your health care team when using this information. If you have an emergency, please call 911. Copyright 5/2017. University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. HF#4935. 10