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The Gift of Life A Patient’s Guide to lung transpl ant 1 Teresa King Received a left single lung transplant January 9, 2013 due to Pulmonary Hypertension. on the cover: Joe Grigsby Received a bilateral lung transplant January 30, 2013 due to Cystic Fibrosis. The Gift of Life A Patient’s Guide to lung transplant The Lung Transplant Team at UK HealthCare is made up of a group of trained and experienced professionals who are passionate about providing a better quality of life to those with end-stage lung disease. Whether your doctor has sent you for evaluation, or you have requested an appointment on your own, we are glad you are here! In the coming days and weeks, you will meet members of our team and discuss at length the benefits and risks of lung transplantation. We hope to provide you with all the information you need to decide if lung transplant is the right choice for you. 1 Introduction2 Rejection and infection 11 Types of transplants at UK Healthcare 4 Medications12 Candidates for lung transplantation 5 Preparing for home 12 Waiting for transplantation 7 After returning home 14 Day of transplant 8 Nutrition17 Care post transplant 9 In conclusion This booklet summarizes what you can expect during the transplant evaluation process, transplant surgery and life after lung transplant. If you are deemed to be a transplant candidate, you will receive a much more detailed manual that outlines the specific medications, appointments and bronchoscopy schedules, etc. you can anticipate once you have received your new lung(s). The education process begins here and never ends. We encourage you to ask questions throughout the process, and are happy to take the time to review any details until you feel comfortable with the information provided to you. We are excited about the possibility of offering lung transplantation and look forward to having you join our UK HealthCare transplant family. The purpose of this guide is to provide you and your family with an explanation of the transplantation process. Once you are accepted as a candidate for a lung transplant, you become as vital to our team as the physicians, nurses, therapists, and other specialists who are assembled to care for you. 2 17 All members of the health care team realize that a great deal of information is contained in these pages. We hope you will read this book carefully and write down any questions or concerns you may have. Our goal as your healthcare team is for you to have a great experience, at not only the Transplant Center, but in all areas of UK HealthCare. We are available to you 24 hours a day, 365 days a year. We will strive to ensure that your experience is unique to you and address any questions or concerns you may have at any time throughout the process. We will do our part to make your experience as positive as possible. We encourage you to speak openly with the physicians, coordinators, ancillary staff and other patients as needed through the patient ambassador program. We also encourage you and your caregivers to attend the monthly support group for lung/heart transplant patients. We will work very hard to make this process as smooth as possible, we ask that you do your part by showing up for all of your appointments and asking questions as they arise. Our Lung Transplant Team Lung Transplant Surgeons Charles Hoopes, MD, Director, Transplant Center Jason Alexander Gill, Professor of Cardiothoracic Surgery Roh Yanagida, MD, PhD Jeremiah Martin, MD Lung Transplant Pulmonologists Harish Seethamraju, MD, Medical Director Micheal Anstead, MD John McConnell, MD Anil Gopinath, MD Lung Transplant Coordinators Julie Leigh, RN, CCTC BeLinda Connor, RN, CCTC Donna Dennis, RN, CCTC Dawn Wilson, RN Alicia Alvarado, RN Lung Transplant Nurse Practitioner Kristyn Gordon, ARNP Financial Counselor Kim Million Staff Assistants Jennifer Whittaker Jill Marion Transplant Dietitian Leslie Eble, RD Transplant Pharmacists Jeremy Flynn, Pharm D Ann Fugit, Pharm D Director of Cardiothoracic Transplant Dorothy Lockhart RN, CCTC Operating Room Staff Cardiovascular Intensive Care Nursing Staff Respiratory Therapy Staff Physical Therapy Staff Pulmonary Function Lab Staff Nursing Staff on General Medicine Floor Clinical Social Worker Summer Davies, MSW 3 Types of transplants at UK HealthCare Single-lung or double-lung Your disease process, the transplant team’s assessment of your medical needs and the availability of donor lungs are considered in determining whether one or both lungs should be transplanted. Heart-lung Both lungs and the heart are replaced when they have irreversible damage, either due to one disease or a combination of diseases that affect both organs. More than 2,000 lung transplants are performed each year worldwide. Illnesses that are sometimes treated with a lung transplant include: alpha-one-antitrypsin deficiency, pulmonary fibrosis, cystic fibrosis, pulmonary hypertension, sarcoidosis, eosinophilic granuloma, bronchiectasis, lymphangioleiomyomatosis, chronic obstructive pulmonary disease (COPD) and emphysema due to tobacco smoking. There are also other rare conditions that may be considered on a case by case basis. Pediatric lung Lung transplantation in children is usually considered for: • Cystic fibrosis with end-stage lung disease • Pulmonary hypertension • Pulmonary fibrosis 4 Candidates for lung transplantation To be considered for lung transplantation, you must: • Have a condition for which transplantation is considered an effective treatment. • Have severe and progressive lung disease that no longer responds to medical treatment. • Be willing to accept the risks of surgery and subsequent medical treatment. • Be physically capable of undergoing surgery and subsequent medical treatment. • Not smoke or abuse alcohol or drugs (or use tobacco of any kind). Even if you otherwise qualify, the transplant team may determine that you are not a good candidate – for example, because of severe, coexisting medical conditions that may be worsened by a surgical procedure and follow-up treatments with powerful immunosuppressive (anti-rejection) medication. Lung transplantation is not simply a surgical procedure; it is a process of events that include an evaluation phase, a waiting period, hospitalization for surgery, and continuing care after surgery. Therefore, it is important for you and your family to have as much information as possible about each of the different phases of the transplant process. Evaluation In order to be considered for a lung transplant you must be evaluated by the doctor and other health care providers at the UK HealthCare Transplant Center. Evaluation for transplantation involves a series of tests and exams by a variety of different specialists including doctors, nurses, therapists, dietitians, social workers, psychiatrist and financial counselors. Each of these specialists will ask you for information and give you information about lung transplantation. Generally, the evaluation phase will be done as an outpatient. Some tests, like the left heart catheterization, may require an overnight stay in the hospital. The tests you will have during the evaluation phase are listed below. Depending on your diagnosis, additional tests may also be indicated. Heart • Catheterization of the heart to examine blood supply and pressure (this test requires a catheter to be threaded through a large vein into your heart and dye injected into the heart through the catheter while an X-ray picture is taken). • Electrocardiogram (EKG) to determine heart electrical activity. • Echocardiogram (ultrasound) to assess heart muscle and valve function and to estimate pulmonary pressures. Lungs • Ventilation-perfusion lung scan to determine blood and air supply to the lungs (this requires an injection of radioactive “tracer” into a vein, known as a VQ scan.). • Pulmonary function tests to measure lung size and function (requires inhaling/exhaling into a machine). • Chest CT scan to get a three-dimensional X-ray picture of your lungs. • Chest X-ray. 5 Erma Tirey Received a bilateral lung transplant January 7, 2013 due to Idiopathic Pulmonary Fibrosis and she subsequently received a right lung transplant February 6, 2013. 6 Waiting for transplantation Other • L aboratory tests of blood to determine your blood type, to help determine the risk of rejecting a transplanted lung or getting a serious infection, and to look at the function of your other organs (i.e., kidney and liver). • Six-minute walk study. • Arterial blood gas. • GERD (Gastro-esophageal Reflux Disease) work up. • Bone-density test. • Exercise capacity. • It will also be necessary to have basic tests conducted through your primary care physician, including a colonoscopy, mammogram and PAP smear, as well as a full dental examination. All information from tests, interviews and your medical history will be considered in determining your candidacy for lung transplantation. The team will also assess your financial resources and social support to determine whether they meet the requirements of the program. Becoming a lung transplant candidate After the evaluation is complete, the transplant team will meet in approximately two weeks to discuss all the information gathered. The team will discuss the benefits for transplant and any problems that could make transplantation too risky for you. Sometimes, additional tests may be required to resolve doubts about your candidacy for transplantation. Once you have become a candidate for lung transplantation, the waiting period begins. Waiting for a suitable lung or lungs to become available may be the toughest part of the transplantation process. In the United States, all organs available for transplantation are listed on a national transplant waiting list maintained by the United Network for Organ Sharing (UNOS). The UNOS list matches donor organs to potential recipients based on a number of criteria: • Compatibility of donor and recipient. • Blood type. • Lung size. Every medical center matches donors and recipients through UNOS, but each center has its own rules for accepting or declining potential donors. Your donor lung(s) will come from a person who has been declared brain dead and whose organs have been donated. If you are at home during the waiting period, it is a good idea to plan for the day you are called to the hospital for transplant. We suggest you keep a packed suitcase ready in preparation for the day (or night) of your surgery. When preparing your bag, think about what clothes and personal articles you would like to have with you in the hospital (reading material, music, etc.). Make a list of the people you want to notify about the transplant. Make a note of the route you will use when coming to the hospital and where your family plans to stay while you are in the hospital. We will make all the arrangements necessary to complete these additional tests as quickly as possible. You will be scheduled for a follow-up clinic visit after your evaluation to discuss the results and the recommendations of the transplant team. 7 Day of transplant When a lung becomes available, the on-call nurse coordinator will contact you and ask you to come to UK HealthCare. Due to confidentiality requirements, you will not know the name of your organ donor at the time of transplant. Once contacted, you should come to the hospital with as little delay as possible. Be sure to travel with care, obeying traffic laws and ensuring safe arrival as your travel time will be considered before you are notified. Also, once you are contacted, do not eat or drink ANYTHING. Preparation for surgery Prior to surgery, you will be examined by nurses, surgeons and anesthesiologists. Additionally, you will: •H ave a chest X-ray, electrocardiogram (EKG) and urinalysis. • Give blood samples from a vein and artery in your arm. • Receive an IV catheter in your arm or hand . • Have your vital signs (blood pressure, pulse and temperature) taken. Before surgery, you will be asked to sign a consent form giving the surgeons and anesthesiologists permission to perform the lung transplant. During most of the preparation period, your family will be allowed to stay and visit with you. Once you go to the operating room, your family will be taken to a waiting room. 8 Once you are in the operating room, doctors and nurses will further prepare you for surgery. The anesthesiologist will give you medicines to help you relax and sleep. The start time of your surgery will depend on the progress of our team of surgeons and specialists traveling to retrieve the donor lung(s), sometimes referred to as the “donor team” or “the procurement team.” These specialists keep the surgeons at UK informed of their progress with getting your new lung(s). Once the donor team decides if the new lung(s) is/are right for you, they will contact the UK HealthCare team. Due to the fragile nature of lung tissue, the donor lungs may become unacceptable for transplant at any time during this process. If donor lungs are unacceptable, this is referred to as a “dry-run” and your procedure would be cancelled. If the donor lungs are approved, you will undergo transplantation. After the surgery has been completed, you will be taken to the Cardiothoracic Intensive Care Unit, also called the CTV-ICU. Care post transplant Intensive care In the CTV-ICU, your family will be allowed to visit once you are settled and stable. Usually, the number of visitors in the CTV-ICU is limited to immediate family members. The purpose for limiting visitors is to decrease the risk of infection. During your CTV-ICU stay, your vital signs – including heart rate, blood pressure, respirations, temperature and urine output – will be checked hourly. We will work hard to get much of this information without disturbing you, especially when you are resting. A chest X-ray will be performed in your room each day to evaluate the condition of the new lung(s). You will also have a bronchoscopy performed daily to keep the lungs free of secretions. For the first few hours and days in the CTV-ICU, you will be monitored with a lot of different equipment. As you recover from surgery, much of that equipment will no longer be necessary and you will be able to get up out of bed, sit in a chair and walk around your bedside. The length of stay in the CTV-ICU varies from individual to individual. The usual CTV-ICU stay is between three and seven days. When you are transferred from the CTV-ICU, you will go to a private room, where you will stay until you are discharged from the hospital. Acute care After your stay in the CTV-ICU, you will be moved to a private room on the 6th floor of the hospital. Staying in a private room is necessary in order to decrease the number of people you come in contact with, thus decreasing the chance infection. During the remainder of your hospital stay we ask that visitors be limited to immediate family and clergy members. Family members and any other visitors with a cold or any other kind of illness will be asked not to visit with you directly, but to instead use the telephone. You should always wear a mask when you are outside your room and especially when you go to have any tests, such as an X-ray. Unfortunately, we cannot allow fresh flowers or plants of any kind in your room after the transplant. Flowers and plants have bacteria on them. Please let your family and friends know about the “no flowers” policy. During your hospital stay, you and your family will be involved in a number of activities designed to: • Help you recover from surgery. • Monitor the function of your new lung. • Prepare you for going home. • Inform you about your health care and lifestyle once you are discharged from the hospital. During the hospital recovery and rehabilitation phase of the transplant process, a lot of different people will be involved in your care, including doctors, nurses, respiratory therapists, physical therapists, dietitians and social workers. Again, we encourage you to ask questions about your care, particularly if there is something you do not understand. The first step in the recovery process will involve a combination of medication, chest physiotherapy, proper nutrition and exercise with appropriate periods of rest. Immunosuppresant therapy In addition to chest physiotherapy and exercise, an equally important part of your post-transplant care involves taking special medications. Unfortunately, your body will recognize your new lung(s) as an antigen or foreign body and will try to make antibodies to fight against it. Therefore, after the transplant your immune system must be suppressed. This is done with medicines, some of which you will need to take every day for the rest of your life. It is important to remember that efforts to prevent rejection of your new lung by immunosuppression, cause you to become vulnerable to infections with bacteria and viruses. Rejection and infection are discussed next followed by a description of the medications you will take after the transplant surgery. Remember: Each patient is unique – every person will have a different experience. 9 Paige West Received a bilateral lung transplant July 7, 2012 due to Cystic Fibrosis. 10 Rejection and infection Rejection For transplant patients, the word rejection means that your body has recognized your new lung as one that you were not born with. If rejection does occur, it means that your body’s immune system is trying to fight against it. This is to be expected, but must be controlled by medications after your transplant. The diagnosis of rejection after a lung transplant is made by a doctor based on the results of a biopsy performed during bronchoscopy. During a biopsy, a small piece of the lung tissue (about the size of a bread crumb) is taken and examined under a microscope. To be sure that you are experiencing rejection and not an infection, other tests, including a chest X-ray, PFTs, sputum and blood samples, may need to be performed. During the first few months after your transplant, biopsies will be performed on a regular basis, as part of our surveillance protocol. The transplant coordinator will inform you of your results and tell you if any changes in your therapy (especially medicines) are required. Infection After a lung transplant, infections caused by bacteria or viruses are of great concern because the drugs you are taking to prevent rejection increase the possibility of infections. Sources of infection include not only other people and things, but also your own body. The diagnosis of infection will be based on tests like X-rays and cultures of your blood, sputum and urine, as well as other tests including blood samples, x-rays, etc. In the hospital, steps to prevent infection include: • Hand washing is the single best way to prevent infection. • Staying in a private room. • Limited number of visitors. • No fresh flowers allowed in room. • Wearing a mask outside your hospital room, even when you are being transported to other places in the hospital. • Close monitoring of your temperature, oxygen saturation and blood samples. At home, there are things you can do to help prevent and detect infections: • Hand washing is the single best way to prevent infection. • Avoid construction sites. • Avoid gardening or any other activities where you are in contact with soil. • Don’t change litter boxes or bird cages. • Avoid crowds, crowded rooms and sick people. • Check with transplant team before taking flu shots or vaccinations. • Contact the transplant team before having any dental work performed – including cleaning (you must have antibiotics before these procedures). • Wear a mask when you are in the hospital or clinic. • Monitor your own body temperature, heart rate, breathing and blood pressure. • Watch for changes such as productive coughing, scratchy throat and changes in the color of your sputum. • Decrease in peak flow of 50 ml or greater. • Watch even the smallest cuts or scratches for signs of redness, inflammation, the presence of pus or slow healing. Do not hesitate to contact the nurse coordinator if you have any concerns about changes in your symptoms. Early detection of infection/rejection is very important. Generally, the treatment for infection is directed toward making sure you are not experiencing rejection and then treating the infection with the appropriate antibiotics or antiviral medications. 11 Medications Medications will be part of your daily routine for the rest of your life. The following pages describe medications commonly used after transplantation, including immunosuppressants, anti-infectives, antiulcer medications, anti-hypertensives and lipid-lowering drugs. In addition, you may be asked to participate in research studies.* (*Participation in research studies is your decision and is not required.) Preparing for home Getting ready to go home from the hospital will involve learning more about taking your own medicines, exercising, diet and nutrition, and how to take your own vital signs and FEV1. The pharmacist and coordinator will teach you about your medicines, when to take them, how much to take and potential side effects. During your last few days in the hospital, you should be ready to take all of your medicines on your own. Physical therapists will help you with your daily exercise routine while you are in the hospital. As you get ready to go home, a therapist will review your daily exercise program and check whether you are exercising properly. 12 Before going home, the transplant dietitian will be available to answer any questions you and your family might have about selecting the right foods and the basics of good nutrition for transplant recipients. Finally, the transplant coordinator will teach you how to monitor and record your vital signs (temperature, pulse, blood pressure, etc.). You will be instructed by the pulmonary specialist how to record peak flow. In addition, the coordinator will help you arrange clinic visits and order prescriptions from the pharmacy. If you do not live within 30 minutes of Lexington, you will be required to stay locally after transplant temporarily. The social worker and coordinator can help arrange local housing if needed. Remember, once you are discharged from the hospital a member of the transplant team is only a phone call away. Dewey Eldridge Received a bilateral lung transplant January 15, 2012 due to Coal Workers Pneumoconiosis (Black Lung). 13 After returning home Instructions: 1. Don’t add any medications to your current schedule of medications without first talking with the transplant team. 2. D on’t change the time or dose of any of your medications without first talking with the transplant team. 3. Don’t run out of any of your medications. If you obtain your medicines from the Kentucky Clinic Pharmacy, please allow two to three days for delivery. You need to order medications yourself. The Kentucky Clinic Pharmacy telephone number is 859-323-5855. 4. NEVER take aspirin or medicine containing aspirin or Ibuprofen (unless specifically ordered by your transplant doctor), because it is very irritating to the stomach and can cause kidney damage. Many “pain” or “cold” tablets have aspirin in them, so check with the pharmacist if you have any questions. Use acetaminophen (Tylenol) only. 5. Exercise: Continue with a programmed exercise plan. Walk at least twice a day. Stop exercising if you become short of breath, feel dizzy or have any pain. You may ride a bike or swim if you wish. Remember to avoid lifting anything heavier than 10 pounds until you are completely healed but strengthen your arms up to five pounds for approximately eight weeks. Thereafter, you may increase the weight. Also remember to check your heart rate before and after you exercise for at least the first few weeks at home. 14 6. Monitoring of vital signs: Check your heart rate, blood pressure and temperature every morning and evening. Check peak flow once each day. Record these values in your handbook (see vital signs diary sheet) and bring your handbook with you to each clinic visit. Call a lung coordinator if any of your vital signs changes significantly. We will give you the ranges to watch for before you leave the hospital. 7. Eating and nutrition: Maintain a low-salt diet according to the plan worked out with the dietitian. You should not eat sushi or any other raw meat. Weigh yourself every morning and record your weight on your vital signs diary. 8. Vomiting: Should you ever vomit after taking your medications, call the Transplant office during normal working hours (or the hospital after hours, and ask for the transplant coordinator on call), immediately to see if you should repeat your dose. 9. Hair care: Prednisone will probably affect the condition of your hair. Tints, dyes, bleaches and permanent wave lotions may cause your hair to break. We recommend that you wait until your prednisone dose is less than 20 mg/day before you have a permanent or color your hair. Tell your beautician that you are on prednisone and to use a good conditioner on your hair. 10. Increased hair growth: This problem is especially annoying to women, particularly when facial hair increases. You may remove hair with a hair remover cream. Be sure to test a skin area according to the directions on the bottle. This cream causes severe irritation to the eyes and mucous membranes (even to your lips), so apply it carefully. You may use a 50 percent peroxide solution to bleach excess hair growth. After your prednisone dose is less than 20 mg/day, you may use wax or electrolysis for permanent hair removal. 14. Sexuality Female patients: You must have a Pap smear and a breast examination every year and a mammogram as recommended by your gynecologist. The tests can be done by any physician, but all reports must be sent to the Transplant office. You MUST use some form of birth control because it is possible for you to get pregnant. YOU SHOULD NOT GET PREGNANT. 11. Smoking: YOU MUST NOT SMOKE. Smoking causes damage to the lungs which makes it easier for you to develop a lung infection. You should stay away from smoke-filled areas as much as possible. IF FAMILY MEMBERS SMOKE, THEY MUST SMOKE OUTSIDE OF YOUR HOME. To someone taking immunosuppressive drugs (prednisone, cyclosporine, tacrolimus), lung infections can be life-threatening. 15. C old sores: Herpes simplex virus causes cold sores. These sores look like tiny water blisters on the lip or face. Always tell us if you get a cold sore. 12. Alcoholic beverages: Three months after your surgery, if you have had no rejection, you may drink one alcoholic beverage on special occasions ONLY. Alcohol is broken down or metabolized by the liver and immunosuppressive drugs are metabolized in your liver and kidneys. The combination of the two can cause liver damage. 13. Pets: NO BIRDS and NO AMPHIBIOUS LIZARDS. If you have cats, do not change the litter box. Male patients: If you notice a change in your sexual ability, do not hesitate to discuss it with us. 16. Chicken pox, measles, mumps, etc.: Inform us whenever you are exposed to any communicable disease you have not had previously. 17. Herpes zoster (shingles): Shingles appear as a rash or small water blisters, usually on the chest, back or hips, but they may appear on other areas. The rash may or may not be painful. Your local doctor may treat your shingles, however, be sure to notify the Transplant office. Any topical treatment or pain medication that gives you relief is acceptable. Regular clinic visits Initially you will be seen in clinic once weekly for a doctor visit and twice weekly for labs only. We will check routine labs, chest X-rays and pulmonary function tests, as this is a very crucial time in your post-operative treatment. We will also see you on an as-needed basis for any changes that might indicate the presence of infection or rejection. 15 Chrissy Cornett Received a bilateral lung transplant February 4, 2013 due to Cystic Fibrosis. 16 Nutrition In conclusion Pre-transplant As you can imagine, your nutritional status prior to transplant is very important. It will affect how well and quickly you heal and your general recovery. During the pre-transplant evaluation phase, a registered dietitian will visit you to assess your nutritional status. The dietitian will work closely with you to help you achieve and maintain a good nutritional status before transplantation. From beginning to end, the transplantation process is a very emotional time for patients and families. Your health is our priority and the UK HealthCare Transplant Team offers the highest-quality comprehensive care and support during this process. If you have questions at any time, please contact your nurse coordinator to discuss. Post-transplant Immediately after the transplant, your nutritional needs will be increased due to the stress of surgery. During this time, you must eat adequately to heal and recover. With the help of the registered dietitian, you will modify your favorite recipes to decrease the content of fat, sodium and other nutrients so you can continue to prepare meals that you have always enjoyed. It is important to remember that compliance to the post-transplant diet is a medical necessity; however it need not restrict your quality of life! The modifications you need will be decided by your transplant team. As the need for modifications change, you and your registered dietitian will manage your nutritional health with periodic follow-ups. After your transplant it is important to maintain a lowfat, low-cholesterol, low-sodium diet, just as before transplantation. Adherence to this diet is very important. Monthly UK HealthCare Heart/Lung Support Group meetings offer additional support for patients and families. This group of pre- and post-transplant patients, meets to discuss different topics of concern. During support group meetings, there will be open discussion and education with a wide variety of UK HealthCare professionals involved in all levels of care within the transplant process. You and your support person are HIGHLY encouraged to attend these meetings. A patient ambassador program is also a beneficial support group of transplant patients that have agreed to meet new candidates and discuss the transplant process from a patient perspective. Whatever your decision is for transplant, we are pleased that you have chosen UK HealthCare to be a part of your health care team. For additional information about transplantation: Contact the United Network for Organ Sharing (UNOS) at 888-894-6361 (toll free), or visit their website at www.unos.org. www.transplantliving.org 17 Contact us 859-323-4620 | 24 hours a day/7 days a week 859-330-2484 | 24 hours a day/7 days a week 800-456-5287 | Monday – Friday, 8 a.m. – 4 p.m.