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Pre-Transplant: Referral to Lung Specialist
Patients are often referred to the University of Michigan Health System to be evaluated as a candidate for a lung transplant. Depending upon their medical condition, patients may be followed by University of Michigan pulmonologists for an extended period of time for care of their lung disease. When the patient’s medical condition warrants consideration of a lung transplant the pulmonologist will refer the patient for a transplant evaluation. Patients must have ceased all use of nicotine products for at least six months prior to scheduling their evaluation appointment.
Pre-Transplant: Transplant Evaluation Overview
Patient referrals for a lung transplant at the University of Michigan require a comprehensive evaluation that is performed in two sections; the medical evaluation and the surgical evaluation. When a referral is made the patient is seen initially by the transplant pulmonologist who assesses the patient’s medical condition. If a patient’s medical condition indicates a transplant would be an appropriate option, the patient will be scheduled to see the lung transplant surgical team. The evaluation process concludes when the case is reviewed by the multi-disciplinary transplant team and a decision about the patient’s suitability for an organ is made.
Pre-Transplant: Before Your Evaluation Appointment
The transplant coordinator will gather information regarding your medical history; working with the patient and their referring physician as necessary. This information will be used during your evaluation to determine whether other tests may be required.
Pre-Transplant: Medical Evaluation Day
On the day of the medical evaluation patients should check in at Pulmonary Medicine (Reception A or C) on the third floor of the Taubman Center. Occasionally, patients are scheduled to see a physician at one of the off site locations, such as Brighton or Briarwood Health Centers. At the medical evaluation appointment the patient will see the transplant pulmonologist. A significant amount of testing will be scheduled and performed as part of this visit; such as a pulmonary function test, a chest radiograph (xray), a CT scan, a six minute hall walk, and other testing. The transplant pulmonologist will request the patient be scheduled to see the lung transplant surgical team if the patient’s medical condition indicates a lung transplant may be a suitable option.
Pre-Transplant: Surgical Evaluation Day
On the day of the surgical evaluation appointment, patients should check in at General Thoracic Surgery (Reception B) on the second floor of the Taubman Center. The patient will see a variety of professionals at this appointment, such as a social worker, a transplant coordinator, a nurse, and a surgeon. Other visits may be arranged for patients based on their needs; a nutritionist may assess the patients dietary needs and a transplant psychiatrist may assist the patient and their family in recognizing and addressing the stress associated with transplantation.
Patients are encouraged to bring a close family member or care giver. Patients are expected to attend an educational session which is located at some distance from the clinic. Patients should be sure to bring their oxygen and to utilize the wheel chairs that are available to allow them to move comfortably around the medical center. Family members and care givers are often very useful in taking notes during the meetings and educational sessions for use in later conversations.
Patients may be required to have additional testing performed. The tests that are most likely to be ordered are described in Medical Tests. An attempt will be made to schedule as many of these tests as possible on the same date to minimize the number of trips a patient must make to the medical center. However, it may not be possible to schedule all of the tests on one day.
Pre-Transplant: Lung Allocation Policy
Effective in Spring 2005, U.S. lung allocation policy changed significantly. The new system prioritizes lung transplant candidates for lung offers by assigning them a lung allocation score. This score is based on each patient’s individual medical information. It reflects both the seriousness of each patient’s medical condition before transplant and his or her likelihood of success after transplant.
Patients listed for a lung transplant will be assigned a Lung Allocation Score (LAS) calculated from the following medical information:
- Forced Vital Capacity
- Pulmonary Artery Pressure
- Oxygen at rest
- Age
- Body Mass Index
- Insulin dependent diabetes
- Functional status
- Six (6) minute walk distance
- Ventilator use
- Pulmonary Capillary Wedge Pressure
- Creatinine
- Diagnosis
These medical data are required to be renewed every six months, with the exception of heart catheterization. If any of these results are more than six months old it will greatly affect a patient’s score. Each patient’s LAS may fluctuate based on the most current test results. The Lung Allocation Policy is designed to provide lungs to those patients who are in the most need. Patients with the highest LAS are allocated lungs first in this system. For more information on organ allocation policies, please visit the website of the United Network for Organ Sharing (UNOS).
Pre-Transplant: Activities Following Evaluation
The transplant coordinator will work to gather the results of the patient testing. Once the data is compiled the case will be reviewed at a multi-disciplinary transplant committee. All reports and the results of testing will be used to help the committee determine if transplantation is an appropriate option for each patient. Not every patient completing a transplant evaluation and discussed at the transplant committee will be found to be a suitable candidate for transplantation. If a patient is found to be a suitable candidate, they will be contacted by the transplant coordinator and the process would proceed to listing the patient for a deceased donor organ. If a patient is not found to be a suitable candidate, they will be notified by one of their physicians, and in writing within ten days of the committee’s decision.
Pre-Transplant: Being Listed for a Transplant
The transplant coordinator will complete the paperwork to place the patient on the national wait list for donor organs, where all other patients waiting for an organ are listed. There are separate wait lists for each organ type; heart, lung, liver, kidney, and/or pancreas. The wait lists are managed by the United Network for Organ Sharing (UNOS), who also maintain a computer system for the purpose of managing the lists and matching donor organs to potential recipients. Each area of the country has a designed Organ Procurement Organization (OPO) that works with UNOS in coordinating donation and transplantation in local areas. The OPO that manages these services in Michigan is Gift of Life (GOL).
When a patient is listed for an organ they are required to provide contact information. Since organs become available at unpredictable times, it is necessary for the transplant coordinator to be able to find the potential transplant recipient at any time – day or night. Patients need to provide the transplant coordinator with a list of contact names with telephone numbers so the patient can be reached when an organ becomes available.
Waiting: Waiting for an Organ
Being listed as a candidate for a lung transplant can be exciting, but it can also be a very stressful time. While patients wait for an organ to become available, it is important that they stay in regular contact with their transplant coordinator.
While patients are waiting for an organ to become available, they will see a transplant pulmonologist every three to four months. These visits will include blood tests, a pulmonary function test, and a six minute hall walk. In addition, the transplant coordinator will contact the patient by telephone periodically. These contacts will allow the transplant team to monitor the patient’s medical condition, to update patient contact information and to review any changes in insurance coverage.
Patients need to remain as healthy a lifestyle as possible while waiting for an organ. It is suggested that patients maintain a balanced diet, maintain their weight at adequate levels, and participate in regular exercise to remain healthy throughout their wait.
Waiting: A Deceased Donor Organ Becomes Available
When donor organs become available, a computer search is done to determine who would be the best match for those organs. Many factors are taken into consideration when the decision about each donor organ is made, such as blood type and size of the available organ.
When an organ becomes available for you, the transplant coordinator has only one hour to accept that organ for a specific patient.Therefore, it is crucial that the transplant coordinator can reach the patient within a matter of minutes. The transplant coordinator will attempt to reach the patient at their home. If there is no answer, they will attempt to reach the patient at any other contact numbers the patient has provided.
The transplant coordinator trying to reach a listed patient when an organ becomes available will not leave a message on an answering machine because it is necessary that they speak with the patient directly. However, it the patient leaves instructions on their answering machine regarding where they can be reached, those instructions will be followed.
Once the patient is reached, they will receive instructions about the time they need to arrive at University Hospital. Patients are not to eat or drink anything after they receive the call that an organ is available for them. While patients will need to come directly to the hospital, it will not be necessary to break any traffic laws as ample time is provided for the patient to reach the hospital without incident. Patients are recommended to keep a small bag packed with a few essentials in preparation for ‘the call’.
Admission: Transplant Surgery
Upon arrival at the hospital the patient will be taken to the Intensive Care Unit (ICU) to be prepared for surgery. The patient will be given a physical exam and will have blood drawn for testing. A medical provider will review the necessary consent forms for surgery with the patient and the patient will be asked to sign the forms providing consent for the surgery. Patients may also receive their first immunosuppressive medication.
One family member is welcome to stay with the patient through much of the time prior to being taken to the operating room. However, the family member may be asked to wait with the remainder of the family during specific portions of the preparation procedures. The patient’s family is welcome to stay in the ICU waiting room until the patient is taken to the operating room. Once the patient is taken to the operating room, the family will wait in the family waiting room for surgical patients until the operation is complete. The surgeon will visit the patient’s family in the waiting room when the procedure is complete to give them an update and to answer questions.
The length of the operation is dependent upon the type of transplant being performed. The average time for a single lung transplant is approximately four hours and a double lung transplant is approximately six hours. Following the operation, the patient will be taken to the Intensive Care Unit (ICU). Family members will be able to visit once the patient is settled. Due to the affects of the anesthesia, patients generally do not remember seeing their family members immediately following the operation.
Admission: Intensive Care Unit (ICU)
Upon arrival in the ICU, patients will have a ventilator tube in place. During the surgical procedure the tube is inserted into the patient’s throat, past the vocal cords and is connected to a ventilator that breathes for the patient. This tube prevents the patient from talking and may cause soreness in the throat. As the patient recovers from the anesthesia, they begin to breathe more independently and the tube can be removed. The removal of the tube generally occurs within 24 hours following the operation.
Patients may also have a small tube through the nose or mouth inserted into the stomach. This assists the patient by removing any fluid or air that could collect in the stomach and cause the patient to feel nauseated. This tube can be used by the nursing team to administer medications until the patient is able to take their medications orally. This tube is generally removed at the same time the ventilator tubing is removed.
Patients will be connected to a heart monitor during their stay in the ICU. This allows health care professionals to monitor the heart rate and rhythm on a continual basis. Patients also have a long catheter inserted into one of the large veins in their neck. This is called a Swan Ganz catheter and it allows health care professionals to monitor blood pressure around the heart and lungs, as well as the patient’s heart function. This tube may also be used to administer medications until the patient is able to take them orally. Patients also have intravenous (IV) catheters inserted into a vein in their wrist, which allows their blood pressure to measured and blood to be drawn.
As the effects of anesthesia wear off patients may begin to notice discomfort from their incision. The type of incision used for lung transplantation is a thoracotomy, which is on the same side as the transplant; usually beginning under the patient’s shoulder blade and extending under the arm. Just below the incision there will be one or two tubes inserted into the chest called ‘chest tubes’. These tubes help to drain fluid or air that may collect in the chest cavity and make it difficult for the lungs to expand. Chest tubes are generally removed several days following the operation. Medications are available to assist patients with discomfort from their incision.
Once patients are recovered from the anesthesia, they begin the real work of recovering from the surgical procedure. Recovering from a surgical procedure requires gradually increasing the patient’s activity level. Patients will be helped out of bed to sit in a chair, generally the day following surgery. Patients will be encouraged to cough and to perform deep breathing exercises to expand the transplanted lung and prevent any accumulation of mucous that could potentially lead to pneumonia. The average length of stay in the ICU is one to three days.
Admission: Working Toward Discharge
As patients recover they are transitioned from the ICU to a step down unit to continue their recovery. During this period, chest tubes and IV catheters are removed. Patients increase their activity levels through walking in the halls and using the exercise bike that will be placed in their room. A physical therapist will review exercises with the patient that will strengthen and stretch the muscles that were affected by the surgery. The nursing team reviews the medications with the patient and the patient begins to assume responsibility for administering their own medications prior to discharge. Patients will have breathing tests prior to discharge and will receive instruction on performing breathing tests at home. Information will be provided to patients prior to discharge on topics such as who to call with questions, the types of things to notify the transplant team about, self care in the home, and follow up visits with the transplant team. The average length of stay for a lung transplant is between seven and ten days.
Post-transplant: After Discharge
Following discharge, the transplant nursing team will contact patients at home to check on their progress. Once patients are discharged from the hospital it is important that they maintain a healthy lifestyle to allow them to achieve the maximum benefit from their new lung. This includes following a low fat diet, participating in regular exercise programs, and continuing their health maintenance examinations with their primary care physician. Regular dental check ups are also necessary to maintain good health. It is important that transplant patients avoid use of alcohol and never return to smoking.
Patients are generally seen for follow up visits with the transplant team at the Taubman Center every two or three weeks. At follow up visits patients have blood tests, a chest x-ray and spirometry. Since the risks for complications or rejection are greatest immediately following surgery, blood work may need to be performed weekly.
Patients need to be very careful to follow the instructions for taking their medications to give them optimum benefit from the medications. When weekly blood tests are necessary, arrangements can be made to have the blood work done locally. Patients should notify the transplant team if they experience shortness of breath, fever, cough, or fatigue. After an initial recovery period, patients are encouraged to enroll in a pulmonary rehabilitation program to help them become stronger and enjoy the benefits of their new lung. Remaining active in regular exercise programs will help patients combat some of the side effects of the medications.
Post-transplant: Possible Complications
Theoretically, a patient can have a transplant and not experience any complications. Realistically, patients are likely to have at least one complication. The transplant team expects every patient to experience a complication and they watch very closely for the signs of complications. The most common complications following transplant are infection and rejection. These complications occur because the immune system is altered through medication to give the transplanted lung the best chance for success.
Rejection
The immune system is a very powerful and effective internal defense system against illness and injury to the body. Unfortunately, the immune system is unable to distinguish between unwanted invaders, such as bacteria, and desired guests, such as a transplanted lung. The body sees the transplanted lung as something foreign and the immune system will attempt to rid the body of the foreign invader. When the immune system attacks the transplanted lung, it is called rejection. Immunosuppressive drugs, such as cyclosporine, are used to prevent the body from attacking the transplanted lung. These drugs slow down or ‘suppress’ the immune system and keep the body from fighting against the transplanted lung.
Rejection may occur –especially in the early period following transplant -- even while the patient is taking immunosuppressive drugs post transplant. Adjustments in immunosuppressive medications occur frequently in the early period following transplant in an attempt to achieve the appropriate balance for each patient.
There are varying degrees of rejection ranging from mild to severe. This is a normal response of the body and does not mean the transplant has failed. If rejection does occur, it can be treated – usually by increasing the amount of immunosuppressive medications for a short time. Rejection is most easily treated when caught early. Knowing what the signs and symptoms are will help patients in early detection. Patients will undergo bronchoscopy with biopsy at regular intervals to monitor for rejection episodes. Patients should contact the transplant team if they experience shortness of breath, fatigue, or cough following a transplant.
Infection
A major risk of suppressing the immune system is infection. This risk is greatest in the early period following transplant, and after treating episodes of rejection. These are the periods when a patient’s dosages of immunosuppressive medications are the highest. The most common infections involve the lung and are caused by bacteria or viruses. Prevention is the best protection against developing an infection, although it may not be possible to prevent all infections. Hand washing is the most important preventive measure against the transmission of bacteria and viruses causing infection. Patients are recommended to avoid crowded areas during the first few months after their transplant. In addition, patients are asked to wear a mask when they return to the hospital for the transplant follow up visits.
Patients take prednisone as part of the immunosuppressive regimen following transplant. Prednisone slows the skins ability to heal itself. Therefore, it is important that patients carefully clean any cuts or scrapes with soap and water, and apply an antibiotic ointment to the area. Patients should watch for signs of infection, such as redness, swelling, or drainage. Patients are encouraged to take their temperature daily and to contact the transplant team if they experience increased temperature or flu-like symptoms.
Warning Signs of Rejection and Infection:
- Patients experiencing any of the following symptoms should contact the transplant team as soon as possible.
- Fever over 99.6
- Not feeling up to ‘par’
- Shortness of breath
- Fatigue
- Infection (chills, fever, flu-like symptoms, sore throat)
- Wound or sore that doesn’t heal
- Pain or burning with urination
- Nausea or vomiting
High Blood Pressure
Blood pressure is recorded as two numbers. The top number is called the systolic blood pressure and indicates the force of the contraction of the heart muscle as it pumps blood out of the heart chambers. The bottom number is called the diastolic blood pressure and indicates the force of the blood pushing back on the heart when it is relaxed. Normal blood pressure ranges from 110/70 to 140/90.
High blood pressure has many causes. The side effects from medications are the most common causes of high blood pressure following a lung transplant. Patients must monitor their blood pressure daily and contact the transplant team if it is significantly elevated after transplant.
The transplant nursing team is available to answer patient questions. Please call either 734-936-7491 or 1-800-333-9013 to reach a lung transplant nurse.
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