Lung Transplant Program Patient Guide Overview The University of Maryland Lung Transplantation Program has saved the lives of many patients with severe lung disease. By replacing lungs which no longer work, the program has given new life, energy and possibilities to people whose lives had been restricted by devastating illnesses. Since the start of our program, we have performed nearly 400 single, double and heart-lung transplants. In addition, our physicians who are all faculty of the University of Maryland School of Medicine have made significant contributions to the advancement of lung transplant surgery and post-transplant immunosuppression treatments. The University of Maryland also has active kidney, liver and heart transplant programs, which enhances our expertise in dual organ transplantation. To schedule an appointment please call 410-328-2864 For more information visit us online at umm.edu/ transplant UNIVERSITY OF MARYLAND MEDICAL CENTER WE HEAL, WE TEACH, WE DISCOVER, WE CARE
REASONS FOR LUNG TRANSPLANTATION A lung transplant is considered when your health has significantly diminished and no other treatment options can help repair the lungs or improve lung function. A variety of lung diseases can cause lung damage. The following conditions may cause your lungs to fail: Idiopathic Pulmonary Fibrosis Chronic Obstructive Pulmonary Disease (COPD) Cystic Fibrosis Pulmonary Fibrosis Pulmonary Hypertension Bronchitis Sarcoidosis ARE YOU A TRANSPLANT CANDIDATE? The transplant team will conduct an extensive evaluation to assess whether lung transplant is right for you. The purpose of the evaluation will be to determine: Whether your disease is advanced enough to require a transplant If there are other options besides transplant Whether you will be able to tolerate a transplant safely If you actually want a transplant If you have the appropriate emotional and social support in place before and after transplant Your insurance coverage and financial resources Steps in the Transplant Process: 1. Referred to UMMC Most transplant candidates are referred to UMMC by their primary care physician or pulmonologist. Many also call on their own initiative. The process begins with one phone call to the lung transplant office. 2. Pre-Transplant Evaluation If it is determined that you should be evaluated for transplant, you will meet the entire transplant team and have a series of diagnostic tests. 3. United Network for Organ Sharing (UNOS) Wait List After the transplant team determines that transplant is your best option; you will be added to the national wait list. The wait list is a computer database that contains medical information on every person who is waiting for any type of lung transplant in the U.S. and Puerto Rico. 4. Surgery Once a suitable donor lung has been identified, you will undergo transplant surgery at the University of Maryland Medical Center. 5. Follow-up Care at UMMC After your surgery and discharge, you will receive follow-up care in our lung transplant clinic. If it is determined that lung transplant at the University of Maryland is the best option, your primary and pulmonary care will be managed by our transplant pulmonologists and transplant coordinators in close collaboration with your referring pulmonologist. During this process, we will also help you understand the risk and benefits of lung transplant, so you can make an informed decision. We also have monthly Patient and Family Education Sessions to assure a full and in-depth understanding of the lung transplant process. During these sessions we focus on expected surgical procedures, complications, medical follow-up, typical medications, outcomes and potential costs. Having a lung transplant is a life-changing event that requires a life-long commitment of taking medications, exercising, eating healthy and attending all doctor appointments. 2
TOP REASONS TO CHOOSE UNIVERSITY OF MARYLAND LUNG TRANSPLANT PROGRAM Patient Outcomes: Despite accepting the most challenging and complex cases, we consistently have positive outcomes. Our one-year survival rates are on par with the national average. Innovation, Research and the Latest Technology: The University of Maryland Medical Center, along with its partner University of Maryland School of Medicine, is widely recognized for its significant research in the field of pulmonary medicine. Our transplant team is successful at transplanting organs that might fall outside of standard transplant criteria. In our program, patients with advanced lung disease have access to clinical trials and leading-edge technology, most of which is not widely available. Recent innovations include: ECMO ECMO (extracorporeal membrane oxygenation) is a mechanical lung that removes carbon dioxide, oxygenates blood and returns it to the bloodstream allowing lungs to rest and heal. The University of Maryland, a center of excellence for ECMO, has one of the busiest ECMO programs in the country, restoring life to more than 100 patients per year. Ex Vivo Lung Perfusion (EVLP) EVLP is a national clinical research trial to evaluate the efficacy of repairing lungs before transplant that might otherwise have been passed over as unsuitable for organ donation. EVLP could significantly expand the number of transplantable lungs available to patients awaiting transplants. Transplant Immunology - The lung transplant team conducts pioneering research, exploring new ways to manage immunosuppression therapies, including inhaled cyclosporine. Knowledge and Expertise: The transplant team at the University of Maryland is among the best in the nation. The depth of experience on the team allows our program to treat all kinds of patients, including high-risk patients that have been turned down at other institutions. Our team is actively involved in developing the next generation of techniques and devices to treat advanced lung disease. University of Maryland Lung Transplant Program is in the top 16th percentile for lung transplant volume - meaning we perform more transplants than 86% of all the world s transplant programs. More transplants lead to better outcomes. High-Risk Transplants: Our lung transplant program has a long history of transplanting high-risk patients, many of whom have been denied by other transplant centers. We have successfully transplanted patients as old as 70 years of age as well as patients who have other co-existing diseases or disorders. We evaluate each patient on an individual basis, ensuring they receive care suited for their specific needs. Collaboration with Your Primary Physician: Our physicians can help your primary physicians determine if lung transplant, or another treatment option, is best for you. The sooner a patient is referred to our advanced lung disease program, the more treatment options are available for consideration. Focused and Compassionate: The University of Maryland transplant team is intently focused on restoring each patient to a full and active life. We understand that the decision to undergo lung transplant is a scary and intimidating experience. Our team is with you every step of the way to help you make the best decision for your health goals. 3
BENEFITS OF LISTING AT MULTIPLE HOSPITALS Studies have shown that patients who join wait lists at more than one transplant center outside of their local area have an increased chance of getting transplanted sooner. Multiple listing means that a patient has been evaluated and approved for the transplant wait list at two or more centers. There are many factors that determine a patient s wait time, including severity of organ failure, blood type and overall health status. While there are no guarantees that multiple listing will lead to earlier transplantation, there may be benefits in listing at transplant centers in different regions where the donor pool is different. How Multiple Listing Works: A patient is eligible to join multiple wait lists at multiple transplant centers across the country. A separate evaluation is required for each transplant center. A patient can transfer wait time from their original center to UMMC, where they may receive an organ sooner. Patients can transfer from one transplant center to another with no penalties, costs or loss of wait time. Any request to transfer or switch waiting time must be approved by the transplant center(s) involved. evisit Consultation If you are already on a primary wait list for lung transplant at a center outside of Maryland, you can learn more about multi-listing with the University of Maryland Medical Center (UMMC) through an e-visit. Through the use of a video app on your smart phone, tablet or computer, the evisit program allows you to be have a consultation from the comfort of your home, and to have private, real time conversations with members of the lung transplant team. We encourage caregivers to join as well. During this time, you can ask questions and get to know the transplant physicians and coordinator. Call to schedule an evisit today: 410-328-2864 When considering multi-listing with the University of Maryland Medical Center, you are expected to share all medical records, complete any additional necessary testing and have a thorough consultation with our transplant team. In addition, you must be physically present at UMMC in Baltimore within 3-6 hours after receiving an organ offer. Meeting this window of time is critical to ensure that the donor lungs do not spend too much time outside of the body. Lastly, you must be available for follow-up care at UMMC immediately following the transplant, which may require relocation if you don t live in the Baltimore area. Plan to spend about 12 weeks here after transplant. 4
TRANSPLANT COSTS The cost of an organ transplant is very expensive and is a life-long commitment. During your evaluation process, you will meet with a financial coordinator to help you understand your insurance coverage and financial responsibility for transplant. If you have health insurance, a large portion of your medical care for your transplant may be covered. Even with insurance coverage, it is likely that you will have out-of-pocket costs for the transplant as well as post-transplant medications and care. The financial coordinator will obtain pre-authorization from your insurance company and determine the extent of coverage for the surgery as well as post-transplant medical care. Because of the high cost of organ transplantation, verified financial resources are required before the transplant can take place. Relocation If you live outside of the Baltimore area, you may be asked to temporarily relocate closer to Baltimore. It is important for you to be in close proximity to the hospital to ensure you can get specialized care when you are most vulnerable to medical and surgical complications. Our team will assess if relocation is necessary for you, and will help you with making arrangements. Our financial coordinator will estimate your expenses and will provide resources that may help cover some costs. Concierge Services Our Concierge Services team provides a seamless experience from your first appointment to discharge. They can help plan your visit and answer questions related to your stay in Baltimore. Specifically, they can help you with the following: Hotels and Accommodations Travel Arrangements Getting Around Town Interpreter Services Special Needs Heart & Lung Transplant Support Group Meeting people who are undergoing the same journey as you can be a powerful experience. Through our support group, you can provide and receive support from fellow patients as well as learn more about your condition. The meetings are coordinated by the transplant social worker, transplant coordinators, and transplant psychiatrist. Participation in the support group is strongly encouraged, to aid the patient and family in establishing supportive relationships within the transplant community, and to understand and manage common pre- and post-transplant issues. Patient wait times vary due to a number of factors. To find out the wait times at UMMC for lung transplant, call 410-328-2864. Concierge Services: 410-328-9355 prc@umm.edu 5
LUNG TRANSPLANT TEAM Pulmonologists Aldo Iacono, MD June Kim, MD Irina Timofte, MD Robert Reed, MD Surgeons Si Pham, MD Bartley Griffith, MD Zachary Kon, MD Concierge Services 410-328-9355 prc@umm.edu 6
Fast Facts ABOUT THE UM LUNG TRANSPLANT PROGRAM Total Lung Transplants Lung Transplants 43 Length of Stay is Shorter at UMMC 29 26 26 UMMC Region US N=29 N=266 N=1,990 Median 14 19 16 LOS Days Days Days 2012 2013 2014 2015 Ages for Lung Transplant Under 18 2% 18-24 2% 25-44 2% 45-64 54% 65 + 40% Primary Diagnosis for Patients Transplanted Cystic Fibrosis 2% Sarcoidosis 2% Other 4% COPD/ Emphysema 24% Idiopathic Pulmonary Fibrosis 68% 7/1/2012-12/31/2014 Lung Graft Survival Patient Survival Observed % 91.42 94.44 Expected % 82.77 85.32 National Observed % 86.52 87.51 Observed: Results from UM Transplant Center Expected: What Scientific Registry of Transplant Recipients determines our results should be based on risk adjusted factors such as age, patient population, and underlying disease National Observed: Average survival rate for all transplant centers in the US 7
Fast Facts ABOUT THE UM LUNG TRANSPLANT PROGRAM ECMO Growth ECMO procedures 52 79 106 137 ECMO serves as a healing device for patients with acute lung failure, oxygenating organs while the lungs rest and heal. UMMC is among the top centers in the country performing ECMO for respiratory failure in adults. 2012 2013 2014 2015 8