Pre-transplant Patient Education Handbook- Pancreas

Transcription

1 Pre-transplant Patient Education Handbook- Pancreas Transplant Services Charlottesville, Virginia

2 Pancreas Transplantation This booklet is designed for patients and families who need information about pancreas transplantation. There are many opportunities to learn fully about transplantation and we hope this booklet is a helpful beginning. This information is designed to supplement materials presented in the transplant class and interviews with the members of the Transplant Team. Introduction The University of Virginia performed its first pancreas transplant in Much progress has been made in organ preservation, surgical techniques, and immunosuppressive drug therapy since that time. Pancreas transplantation is done most often for Insulin Dependent Diabetes Mellitus (IDDM), or Type I or juvenileonset diabetes. This is the type of diabetes that develops during childhood or adolescence and requires insulin injections to maintain blood sugars. Patients with Type I Diabetes Mellitus are unable to manufacture insulin on their own. Pancreas transplantation, when successful, can provide the insulin dependent diabetic with the cells that are necessary to produce insulin. Type I diabetics are at risk of developing a number of complications due to the difficulty in managing blood sugars. Complications can include cardiovascular disorders, blindness, pancreas disease, nervous system disorders, and infections. A goal of successful pancreas transplantation is to restore normal blood sugar levels and slow or prevent complications of IDDM. There are no guarantees, however, offered with any type of transplantation regarding the function of the organ or long-term effects afterwards of halting the progression of complications after the procedure. Your transplant team will present all of your options to you. Please remember that transplant is a treatment OPTION and you may refuse transplant at any time.

3 The Transplant Team Transplant Surgeons Dr. Kenneth Brayman Dr. Robert Sawyer Dr. Timothy Schmitt Transplant Nephrologists Dr. Douglas Keith Dr. Peter Lobo Dr. Scott Sanoff Nurse Practitioner Laura Reed, FNP Laura Healy, FNP Carol Vincel, NP Chip Sauls, NP Pancreas/Pancreas Transplant Coordinators Barbara Shephard, RN Sara Aldridge, RN Brandy Yowell, RN Brigid Wonderly, RN Living Donor Coordinator Anita Sites, RN Brenda Burns, RN Lori Franssen, RN Fannie Utz, RN Clinical Social Worker Art Pearson, MSW Victoria Waterfield, MSW Financial Coordinator Howard Snoddy Stacey Snoddy Support Team Melissa Collins, Administrative Assistant Kellie Williams, Clinic Manager Frances Long, LPN-Clinic Nurse Pauline Coleman, Administrative Assistant Melissa Carter, Registrationist Transplant Office Access Telephone: (Toll Free) (434) (Local Residents) Hours: Monday-Friday 8:00am-4:30pm The Donor

4 At the University of Virginia deceased donor sources are used to obtain a pancreas for pancreas transplantation. A deceased donor is a patient who has died. These donors are carefully screened prior to obtaining the organs used for transplantation. Strict medical criteria must be met for organ donation. Organs that can come from a deceased donor include the pancreas, kidney, heart, lung, and liver. There are risks involved with each donor even though all donor organs are tested according to the Center for Disease Control (CDC) guidelines. There is a always a very small chance that a disease or malignancy is not detectable at the time of testing or time of transplant and can still be transmitted. The Recipient A detailed evaluation is performed in the transplant clinic on each potential transplant recipient. The morning of your clinic appointment you will attend a transplant class to discuss transplantation in detail. One of the transplant coordinators will lead this class. Topics covered will include the transplant procedure, the evaluation process, complications, medications, and follow-up care after transplant. After the class is completed you will meet several other members of the Transplant Team including the financial coordinator, social worker, a transplant coordinator, and a physician who works with the Transplant Team. You may also meet with one of the transplant surgeons if available. This is the time for you to ask specific questions about your medical problems. Your medical history will be taken and a physical exam will be performed during your initial clinic visit. The Evaluation Process The Transplant Team will discuss your initial clinic evaluation to determine how to proceed with your case. We will either decide to continue with your evaluation work-up or stop the evaluation procedure at this point. The evaluation procedure will be stopped if we do not feel that transplantation is a good option for you. We want to make sure that transplantation will be as safe as possible for you. The risks and benefits must be analyzed for each patient. If after the initial clinic visit we decide to continue with your evaluation, several diagnostic tests will be necessary for us to fully evaluate you. These tests are necessary to determine how healthy you are and how far the secondary complications of diabetes have progressed. Blood work will be necessary as a part of your evaluation. Blood typing will be done to determine your blood group. Your blood type will be one of four possibilities. The groups are A, B, 0, or AB. The Rh factor, or negative or positive sign listed after the blood group, is not important for a pancreas transplant. It is necessary that we know your blood group in order to locate a compatible organ for you. Tissue Typing is another blood study that is necessary for your evaluation. Tissue Typing is a test that identifies certain markers of your genetic make-up. This determines how closely you will match a potential donor's pancreas. A specimen of your tissue is not necessary for this test; all that we need is a blood specimen. Evaluating your heart is another very important step in this process. Our team may require a cardiac stress test, echocardiogram, and/or a cardiac consultation. These evaluations help us determine the condition of your heart, since diabetes can accelerate heart disease. Other tests include a chest x-ray and electrocardiogram. We require you to visit your dentist and receive clearance from him/her as a part of the evaluation. The dental visit is necessary in order to detect if there are any infections present in your mouth. Female patients are required to have a PAP smear, and a mammogram may also be necessary depending on your age and history. Stool specimen cards will be given to you to determine if you are having any bleeding in your intestinal tract.

5 Additional tests may be ordered as a part of your work-up based on your medical history. Once all of the evaluation tests have been returned to the transplant clinic further action will be taken. The Transplant Team will review your case and may decide that further testing is necessary to adequately evaluate you. We may also decide that transplantation would not be a good option for you based on the results of your work-up tests and medical history. The final option is to accept you as a transplant candidate. If you are accepted as a candidate your name will be added to a national list of patients waiting for a pancreas transplant. You will receive a letter from us when you are activated on the list. If you have any questions at all during your work-up, please feel free to contact the transplant office. These individuals are all part of a multidisciplinary approach to transplant care. Each has a specific role Transplant Nurse Coordinator The Transplant Nurse Coordinator provides education regarding the transplant evaluation process, listing for transplant and patient responsibilities before and after transplant. The coordinator is your advocate throughout the process and will work to ensure your needs are met. Meeting with the coordinator is intended to provide you with an opportunity to ask questions and become fully informed about the pancreas transplant process. Transplant Surgeon the transplant surgeon s role is to assess your appropriateness for transplant based on the information obtained during your evaluation. The surgeon also discusses with you the significance of undertaking pancreas transplant, details about the procedure and the risks/possible complications associated with surgery. Transplant Nephrologist the transplant Nephrologist meets with you to discuss many of the disease processes that have contributed to your pancreas failure. They review your medical history to determine medical tests that should be performed in addition to the standard evaluation tests required during the evaluation. Social Worker the transplant social workers role is to evaluate your ability to cope with the stress of transplantation and your ability to follow a rigorous treatment plan, both before and after transplantation. Patient and family/guardian commitment is necessary and the social worker will help you identify your support group. Financial Coordinator the financial coordinator will discuss with you the costs associated with transplant and with medications required post transplant. They will help you understand your insurance coverage and what costs may not be covered by insurance. Nutritionist the transplant nutritionist will perform a nutrition assessment and provide nutrition education when needed. Pharmacist the transplant pharmacist will review your current medications and identify concerns or possible complications with medications required post transplant. At the end of your initial appointment, you should have a good idea of what risks and benefits are associated with pancreas transplant, whether it is a good option for you and how the remainder of your evaluation will proceed. At any time either before or after your clinic appointment, please feel free to contact us with any questions or concerns. We are here to help you.

6 Once you have been evaluated in the transplant clinic, your case will be discussed at Pancreas-Pancreas Selection Conference. This is a multidisciplinary group that meets weekly. The group consists of the Transplant Surgeons, Transplant Nephrologists, a Social Worker, Nurse Coordinators and Financial Coordinators. You will be notified of the group s decision. If the decision is made to activate you on the list, information is provided to UNOS. UNOS, which stands for the United Network for Organ Sharing, is a federally regulated, private organization. They maintain the computer registry where all organ transplant candidates are listed. UNOS is responsible for establishing the policies that the transplant centers must follow and ensures that the sharing of organs is fair to all individuals. Patients are prioritized on the Adult Pancreas Transplant Wait list based on time. This means that you must wait in line for a pancreas to become available from a deceased donor. The pancreas waiting list does not currently take into account the severity of your illness. Your name will be placed on the list along with your blood type and the antigens that were identified as part of your blood tests. While active on the pancreas transplant list, you will need to send us a sample of your blood each month. With this blood we are able to determine your PRA (preformed antibody level) and perform a preliminary crossmatch with potential donors that become available. If we do not receive this sample, you won t be able to receive a pancreas transplant, since we need it to match you and your donor. Your primary physician can draw and send this sample to us. It is important to keep all of your appointments and complete lab tests so that you are in the best possible shape for transplant when the time comes. The waiting period for a transplant is a difficult time for most patients. You can anticipate a waiting time of approximately two to five years for a cadaveric pancreas transplant. During that time you need to be prepared to accept a pancreas should one become available. While active on the transplant list, we will need to be able to reach you at all times. We will ask you for phone numbers of family or friends who could assist in helping us to locate you. It is extremely important that our office be able to contact you at any given time. Additionally, you should have a plan to be able to get to UVA for a transplant. This means someone to drive you or to watch your children or care for your home or animals. It is important to notify the transplant center of changes in your health or contact information. Locating an Acceptable Organ for You After your evaluation is complete and if the team feels that you are an acceptable candidate, your name will be placed on a computerized national list of patients waiting for a pancreas transplant (the OPTN UNOS Waiting List). When a donor is located their information is placed in the computer and a match is made based on several criteria. The criteria include blood type, tissue type, and how long you have been waiting on the list. This is felt to be the fairest system to all patients. When a pancreas is available for you, we will call you and ask that you come to the hospital. It is extremely important that we are able to locate you immediately. Please keep us informed of where you can be reached. There are time limits we must abide by after an organ is removed from a donor. If you are active on the pancreas transplant list this means that you are ready and willing to accept a pancreas when we offer it to you. If you change your mind or become ill please notify the transplant office so that your name can be temporarily removed from the list.

7 While you are on the Waiting List you are responsible for coming to return to clinic appointments and obtaining tests as instructed by your team. Failure to comply could mean being removed from or inactivation on the list. You may also receive a phone call requesting that you be a backup patient for a pancreas transplant. This means that you are the second most suitable person to receive the organ. If for some reason we are unable to use the person whose name came to the top of the list, we then move on to the second person, also known as the backup patient. The backup patient may be transplanted if the primary recipient is medically unable to receive the organ at that time. Multiple Listing & Wait time Transfer Per UNOS patients can be listed on more than one waitlist which means that you may be evaluated and listed for transplant at another transplant center. Visit for more information. Extended Criteria Donors Some patients on the wait list will choose to be listed for receiving an organ from an extended criteria donor. This is one way to receive an organ more quickly. Donors fall into this category when they are older than 50 year old, have a history of controlled high blood pressure or died from a stroke. Donor After Cardiac Death Some patients will choose to be listed for receiving an organ from a donation after cardiac death. Donation is sometimes possible after the heart stops working, when an individual has suffered severe brain injury but has not been diagnosed with brain death. This is one way to receive an organ more quickly. The center feels that these organs do just as well donors. Your team will discuss this with you. High Risk Donor You may also be offered an organ from a high risk donor. The Center for Disease Control (CDC) considers certain organs to be high risk for transmitting infections when the organ donor has a history of risky behavoir such as having multiple sex partners or past intravenous drug use. Even though the chance of transmitting a disease is low because the donor organ is tested and found to be negative for transmittable diseases there is a small chance that it was not detectable at the time of testing. Crossmatch Just prior a pancreas transplant, a critical blood test called a crossmatch will be performed. A sample of your blood will be mixed with white blood cells from the potential donor to determine the presence of cytotoxic antibodies to the donor s antigens. If this test is positive, indicating the presence of antibodies to the donor within your blood, a transplant from that donor cannot be done. Your body would quickly try to reject the pancreas. When you are admitted to the hospital several final examinations are necessary. You will be examined by one of our physicians. Final bloodwork will be taken before the surgery. One of the blood studies is a crossmatch between the donor and potential recipient. This monitors for incompatible antibodies between the

8 donor and recipient. Even if the donor and recipient's blood types are compatible, the antibodies may not be compatible. A transplant cannot be performed if the crossmatch is incompatible. An electrocardiogram and chest x-ray will be repeated prior to your surgery. It is important for us to know if you have had any recent infections or medical problems. Surgical Procedure The new pancreas is surgically placed in the abdomen. The blood vessels of the transplanted pancreas are attached to several of the larger arteries and veins in your abdomen to receive its blood supply. The transplanted pancreas is also surgically attached to either your bladder or intestine to excrete the enzymes released from the pancreas. The decision of whether to attach the transplanted pancreas to your bladder or intestine will be made by the surgeons at the time of your operation. Any surgical procedure carries certain risks with it. You will be put to sleep by general anesthesia to have the surgery done. This carries with it the risks of breathing problems, postoperative complications, and death. There is also the risk of bleeding during the surgery and afterwards. We will be working with large blood vessels during the surgery. You may need to receive some blood transfusions during or after the surgery if bleeding is a problem. There is also the risk that a blood clot can form and occlude the blood vessels that supply the transplanted pancreas. Blood clots can also travel to other areas of your body such as the vessels that supply your head or lungs. You will also be more prone to infections after the surgery because of the medicines you will be put on to aid in preventing rejection of the organ. These infections can include wound infections, pneumonia, viral infections, and bacterial infections. There is also the possibility that the organ may not function after surgery. This is one of the more rare complications, but it can occur. Medical Risks: Bleeding requiring transfusions, 5 in 100 Infection, 1 in 20 Wound Infection, 1 in 20 Pneumonia, 1 in 20 Pain or discomfort usually lasting 1-8weeks Blood clots (that are symptomatic) in legs, 1 in 33 Damage to abdominal organs, including the spleen and intestines, 1 in 100 Incisional hernia, 1 in 20 Delayed Graft Function, 50 in 100 Deceased Donors Re-operation for bleeding, 5 in 100 Acute Re-transplant, 3 in 100 Neuropraxia (arm pain/nerve compression due positioning in the OR), 1 in 5 Arrythmia, 1 in 100 Cardiovascular collapse, 1 in 100 Multi-organ failure, 1 in 100 Major anesthetic complication such as heart attack and/or stroke, 2 in 100 Death 1 in 100 Other risks (for example pleural effusion, pneumonia, allergic reactions to medications) Psychosocial risks: Depression

9 Post Traumatic Stress Disorder (PTSD) Generalized anxiety Anxiety regarding dependence on others Possible feelings of guilt Postoperative Care After surgery you will go to the Surgical Intensive Care Unit (SICU). Physicians, nurses and respiratory therapists who specialize in the care transplant patients will be taking care of you at this time. You may be on a breathing machine initially after the surgery. Most patients will be taken off of the breathing machine in the first day or two. If you are a smoker it may take longer to safely get you off of the breathing machine. You will also have several intravenous lines in you to provide you with fluids and medicines after the surgery. Once your condition stabilizes you will be transferred to 5 West, another patient care unit that specializes in the care of transplant patients. Most patients will remain in the hospital about one week following a pancreas transplant. The length of time may be longer if complications arise. Care After You are Discharged from the Hospital After surgery you will be required to follow a strict regimen that includes taking medication, recording certain vitals, returning to visit on a particular schedule and obtianing blood work frequently. You will need to return to the transplant clinic at the University of Virginia one week after your discharge, and again in one month and then every three months. You will then be seen on at least a yearly basis. The frequency of these visits may need to be increased if complications develop. You will also need to have your bloodwork monitored frequently after the surgery. Bloodwork is initially checked two times a week for the first three months. The frequency is gradually decreased over time. The transplant team will decide when the frequency of your labwork can be changed. It is important to monitor your labwork to give an indication of how well the transplanted pancreas is functioning. If the pancreas was attached to your bladder during surgery we will also need to monitor urine specimens from you. The pancreas secretes an enzyme known as amylase. Amylase levels can be monitored in your urine specimens to give an indication of how well the transplanted pancreas is functioning. If the transplanted pancreas was attached to your intestine we will not need to monitor urine amylase levels on you, but we will check these levels in your blood. Transplant Medicines After your transplant it will be necessary for you to take immunosuppressive medicines for the rest of your life. These medicines are used to help prevent you from rejecting the transplanted organ. If you do not take these medicines faithfully and properly, it could result in rejection of your new pancreas. The following is a list of these medicines and their potential side effects: PREDNISONE PROGRAF CELLCEPT 1. Mood Swings 1. Tremors 1. Nausea

10 2. Stomach Ulcers 2. High Blood Pressure 2. Low White Blood Cell 3. Bone Loss 3. High Potassium levels 3. Vomiting 4. Muscle Weakening 4. Headache 4. Diarrhea 5. Diabetes 5. Diabetes 6. Weight gain 6. Nausea 7. Moon face Other medicines that you may need to be on are an antiulcer medicine, an antibiotic, an antifungal agent, blood pressure medicine, and a stool softener. The medicines you are currently taking will be individually evaluated after your transplant to determine if you need to remain on these or not. The dose of your medicine will gradually be tapered to a maintenance dose as time passes following your transplant. As this is done, the number of side effects should start to decrease. The main side effect is the increased risk of infections. You will always be at risk for infections following your transplant, but the risk decreases after the first several months. Common sense precautions will be necessary for the rest of your life. Any serious infection will need to be brought to the attention of a Transplant Coordinator immediately. Diet There is no specific diet that you will need to follow once you return to home. We ask that you do follow a diet with no added salt in it. You will need to monitor your weight at home very carefully. Physical Activity Physical restrictions will be imposed for the first six to eight weeks following your transplant. This is done to allow your surgical wound adequate time to heal. During this time, you must avoid heavy lifting or exertion. A general rule is not to lift anything heavier than ten pounds during this time. After six to eight weeks exercise is encouraged. Contact sports such as football should be avoided unless you are given specific permission by the transplant surgeons. There are no contraindications to sexual relations; however, female transplant recipients should practice birth control during the first year. Child bearing should be individually discussed with the transplant surgeons. Finances As part of your evaluation, we will ask you to see a Financial Counselor at the University of Virginia Hospital. They will help to assess if your insurance policy will pay for your potential transplant. Some insurance policies will not pay for pancreas transplantation. If you do not have insurance coverage or if your insurance will not pay for pancreas transplant, other financial avenues will need to be explored. It is also important to understand that the medications you will be on after your transplant are very expensive. These are medicines that you will need to take for the rest of your life after being transplanted. We encourage you to determine how these will be paid for should you receive a transplant. These issues must be resolved prior to transplantation. Medicare covers immunosuppressant drugs under Medicare Part B, but patients must have this coverage prior to transplant and must recieve their transplant in a Medicare approved center. Patients that are not transplanted in a Medicare approved facility may not have the ability to get their medications paid for under Medicare Part B.

11 All questions regarding finances involved in pancreas transplantation should be directed to the Transplant Financial Counselor at the University of Virginia Hospital. Conclusion Transplantation is one option for patients with Type I Diabetes. This decision should be carefully considered. We encourage you to talk with your doctor and your family about transplantation. If you are interested in more information, please call the Transplant Office at or

12 UVA Patient Rights & Responsibilities RIGHTS QUALITY CARE: access to quality medical and psychosocial care regardless of ethnic background, national origin, religion, or age access to transplant physicians, nurses, social workers, and other specialists as needed. to expect coordination of effort between my transplant team and primary care provider RESPECT AND PERSONAL DIGNITY: to be treated with respect, dignity, courtesy, compassion, and cultural sensitivity to have privacy and confidential handling of all medical records and communication A VOICE IN DECISION-MAKING: to be consulted for my view of quality of life to participate as a full partner with my health-care team and to have my opinions heard and valued in the development of a plan of care to have treatment options, possible complications and self-care requirements explained in an understandable manner, with sufficient time to ask questions and have them answered to appeal decisions made by a physicians, hospital staff, managed care plan, or other health-care provider to obtain a second opinion and/or accept or refuse medical treatment to change physicians INFORMATION: to have family members or significant others, I designate, be kept informed of my medical condition during hospitalizations to know the identity and profession of any individual providing a service to me to timely communication regarding lab work results, medical tests, and advice of my medical team, and to have access to all medical records to receive a complete explanation of the total bill for services rendered. EMOTIONAL SUPPORT: to have feelings respected and, when appropriate, addressed by my health-care team to have a comprehensive psychosocial plan developed and updated by an appropriately trained mental health provider to have correspondence forwarded to the family of my donor, provided the donor family has expressed a willingness to receive communication from the recipient. RESPONSIBILITIES MAINTAIN LONG-TERM HEALTH: to schedule appointments and tests at appropriate intervals with the transplant team

13 to be prompt in attending appointments and when canceling, to give notice as early as possible of the need to reschedule to adhere to transplant medical instructions and to inform the transplant team when unable to do so to learn the names, dosages, and reasons for taking all prescribed medications and to report all adverse reactions to the transplant team to learn and identify signs and symptoms of rejection and infection and know when to report such signs and symptoms to maintain my primary health care needs (dental, gynecology, dermatology, etc.) and to know when to report any abnormalities to ask questions and obtain clarification to ensure understanding of all communication from the transplant team PROVIDE INFORMATION: to inform the transplant team if my address, insurance or phone number change to inform the transplant team about any changes in my health condition including: desire to take new medication (including herbal, vitamins, alternative, or over-the-counter); any change in my daily activity (such as stopping or starting exercise regimen); or any other situation that may have an impact on my emotional or physical well-being to provide information from other treating physicians to the transplant center by giving written permission for records to be sent to the transplant office to provide the transplant team with the names and contact information of designated family or significant others who should receive updates on my medical and psychosocial condition to request results of my medical and lab tests if these are not provided in a timely fashion to provide the UVA Health System with a copy of my advanced directives and/or durable power of attorney for health care DISPLAY MUTUAL RESPECT: to treat all health care professionals with respect and courtesy to cooperate and follow UVA Health System rules regarding patient conduct MEET FINANCIAL OBLIGATIONS: to understand that UVA will NOT pay for my medical care or medications needed after transplant to give UVA any information needed for insurance to pay for my transplant and to pay for my medical care and medications after transplant to apply, if needed, for financial help to pay for the cost of transplant and for medical care after transplant to submit any financial verification information required by assistance agencies (State or private) to understand if insurance and/or Medicare does not pay for the cost of my transplant or for the drugs after transplant that the I am responsible for paying for all of these costs to understand that changing my health insurance may mean that a new insurance will not cover preexisting conditions such as transplant medications, etc. to understand the limits of Medicare and/or other insurance (including deductibles and co-payments) to notify the transplant office of any insurance changes before or after transplant to accept responsibility for the cost of transplant surgery if insurance denies coverage due to my failure to notify UVA of insurance changes