4/25/2016. Transplant Journey. Objectives. Reason for Transplantation at Mayo Clinic. Mayo Clinic Model of Care

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1 Transplant Journey Lynette Fix, RN, BAN, CCTC Objectives Identify key components of transplant evaluation process Identify the patient follow-up process Describe diseases indicated for transplantation Review patients journey from pre-transplant to post-transplant Coburn Cancer Center May 4, MFMER slide MFMER slide-2 Reason for Transplantation at Mayo Clinic Mayo Clinic Model of Care Avoidance of dialysis for renal patients Comprehensive long-term care and follow-up (pre and post-transplant) transplant) Specialized expertise Expertise with sensitized patients Mayo Clinic Model of Care Team of specialists practicing together Focus is on the patient and their long-term outcome Single location for all services Organized for optimal care during pre-transplant, peri-operative, and post-transplant periods Data-driven protocols designed to provide cost-effective care Expert clinicians Multidisciplinary team engagement Long-term immunosuppression management, care and follow-up 2016 MFMER slide MFMER slide-4 3-site program at Mayo Clinic: Rochester, Florida, Arizona Mayo Clinic Transplant Center Types of transplants completed: Bone Marrow/Stem Cell Allogeneic Autologous Heart Lung Combined Heart/Lung Liver (Living donor) Kidney (Living donor) Pancreas Combined Kidney/Pancreas 2016 MFMER slide MFMER slide-6 1

2 Mayo Clinic Rochester Transplant Volumes 2015 Liver- 125 Kidney- 221 Pancreas- 21 Heart- 27 Lung- 10 BMT- 464 Why Consider Transplantation? To improve quality of life Is considered the treatment option for end-stage heart, lung, liver, renal diseases, and diseases that destroys stems cells Is not a cure, treatment option 2016 MFMER slide MFMER slide-8 Diseases for Stem Cell Transplantation Leukemia Multiple Myeloma Non-Hodgkin Lymphoma Hodgkin Lymphoma Inherited Immune Disorders Inherited Metabolic Disorders Beta Thalassemia Sickle Cell Disease Diseases for Kidney Transplantation Diabetes Mellitus Hypertension Glomerulonephritis Polycystic Kidney Disease IgA Nephropathy Membranous/Focal Segmental Glomerulosclerosis (FSGS) Reflux-defects of urinary tract Lupus 2016 MFMER slide MFMER slide-10 Diseases for Pancreas Transplantation Diabetes Mellitus Type I Diabetes Mellitus Type II Patients with serious diabetic complications Diseases for Heart Transplantation Dilated Cardiomyopathy Coronary Artery Disease Restrictive Myopathy Hypertrophic p Cardiomyopathy y Valvular Heart Disease Congenital Heart Disease Heart Failure Amyloidosis Ventricular Arrhythmias 2016 MFMER slide MFMER slide-12 2

3 Diseases for Lung Transplantation Chronic Obstructive Pulmonary Disease (COPD) Alpha-1-Antitrypsin Deficiency (cause of COPD) Congenital Heart Disease with Pulmonary Hypertension Bronchiectasis Cystic Fibrosis Eisenmenger Syndrome Idiopathic Pulmonary Fibrosis Occupational Lung Disease Pulmonary Hypertension Sarcoidosis Diseases for Liver Transplantation Wilson s Disease Hemochromatosis Fulminant Hepatic Failure Hepatitis B and C Alpha 1-Antitrypsin Deficiency Polycystic Liver Disease Primary Sclerosing Cholangitis Hepatic Tumors - Hepatocellular Carcinoma 2016 MFMER slide MFMER slide-14 Transplant Multidisciplinary Team Members Physicians Cardiologist Gastroenterologist Hematologist Nephrologist Pulmonologist Surgeon Infectious Disease Social Worker Dietician Pharmacist Psychiatrist RN Care Coordinator Transplant Financial Coordinator Others Transplant Evaluation Prescreening criteria for evaluation consideration Assessment of: Current health status Social support Financial support Alternative options 2016 MFMER slide MFMER slide-16 Pre-Transplant Testing Blood work/urine tests ECG Chest x-ray CT/MRI scan Echocardiogramstress test Coronary Angiogram Biopsy of failed organ Renal function test Colonoscopy Mammogram Pap smear Prostate exam Organ specific testing (e.g. pulmonary function testing) Selection Process Evaluation is completed Multidisciplinary Selection Conference Review case Determine candidacy Notification process 2016 MFMER slide MFMER slide-18 3

4 Selection Conference Results Approved Waitlisted once financial approval obtained Deferred Need more testing, or too well Not approved Too sick, no caregivers, risk would outweigh benefits United Network of Organ Sharing (UNOS) Manages wait list Patients can be listed at multiple centers Eleven regions Region 7 = Midwest 2016 MFMER slide MFMER slide-20 National Perspective As of 3/24/16: 121,351 total waiting list candidates In ,970 transplants performed 15,068 donors Transplants By Organ Type 1/1/88-12/31/15 Based on OPTN data as of 3/18/ MFMER slide MFMER slide-22 Facts on Organ Donation A national computer system and strict standards are in place to ensure ethical and fair distribution of organs. Organs are matched by blood and tissue typing, organ size, medical urgency, waiting time and geographic location. People of all ages and medical histories should consider themselves potential donors. Your medical condition at the time of death will determine what organs and tissue can be donated. Organs and tissues that can be donated include: heart, kidneys, lungs, pancreas, liver, intestines, ti corneas, skin, tendons, bone, and heart valves. Even if you have indicated your wishes on your drivers license, state donor registry or a donor card, share your decision with your family so they know your wishes. Organ donation is consistent with the beliefs of most major religions. Facts on Organ Donation An open-casket funeral is possible for organ and tissue donors. There is no cost to the donor s family or estate for organ and tissue donation. If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ donation can only be considered after brain death has been declared by a physician. Information about an organ donor is only released to the recipient if the family of the donor requests or agrees to it. Otherwise, a patient s privacy is maintained for both donor families and recipients. Living donation increases the existing organ supply. Donors are needed for all races and ethnic groups. Transplant success rates increase when organs are matched between members of the same ethnic background 2016 MFMER slide MFMER slide-24 4

5 Deceased Donor Organ from someone who had brain death and their family has agreed to donation Matched through UNOS Longer waiting time Types of Transplant Living Donor Organ from someone who is alive and volunteers to donate Scheduled surgery Shorter waiting time Part of the liver is donated or right or left kidney Who can be a living liver or kidney donor? Healthy adult 18 years or older Not overweight No diabetes Blood pressure under good control Normal kidney function/liver tests Desire to donate 2016 MFMER slide MFMER slide-26 Waiting List Process Patient added to waitlist in UNOS computer system Patient ranked on list Donor identified UNOS system generates list of transplant candidates Factors affecting ranking Blood type, tissue typing, medical urgency, waiting time, expected benefit Dynamic Process 2016 MFMER slide MFMER slide-28 Waiting List Differences Heart-Status 1A, Status 1B, Status 2, Status 7 Lung-LAS Liver- MELD, PELD Kidney-KASKAS Pancreas Mayo Clinic Rochester: Anticipated Average Total Hospital Length of Stay Kidney: 3-4 days Pancreas: 5-7 days Liver: 5-10 days Heart: 14 days Lung: 14 days Blood and Marrow: 1-2 days Outpatient Care 2016 MFMER slide MFMER slide-30 5

6 Post-Hospital Follow-Up Care Patient Responsibilities Take medications daily Communicate health changes and illnesses Learn medications Routine blood work Record blood pressure, temperature, and weight in record book Attend outpatient appointment follow-up per specific program Health Care Team Responsibilities Monitor for infections Monitor immunosuppression drug levels Adjust medications based on lab values Assess health status changes Seek additional referrals or needs Continue education and answer questions Gift of Life Transplant House MFMER slide MFMER slide-32 Patient Education Patients need to know their medications Names, doses, side effect, why they take them, when to reorder supply, take daily 12 hours apart When to do lab testing When and who to call with questions or concerns Mail-in kits 2016 MFMER slide MFMER slide-34 Follow-Up Visits with Transplant Center Comprehensive long-term care Immunosuppressive therapy Graft surveillance Early detection ti of medical problems Coordination of care with primary care providers Mayo Clinic expertise to treat other conditions and provide graft protection 2016 MFMER slide MFMER slide-36 6

7 https://www.youtube.com/watch?v=px18nycao_ w Questions & Discussion Lynette Fix MFMER slide MFMER slide-38 Reference: Retrieved 3/18/2016 from 2016 MFMER slide-39 7

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