Advance Directives
You have the right to state your wishes regarding your medical treatment and heart transplant. A growing number of people are taking action before they become seriously ill. You may now state your healthcare preferences in writing, while you are still healthy and able to make such decisions prior to your heart transplant.
Cleveland Clinic is required by law to provide you, the patient, an explanation of your rights to make personal decisions regarding your own medical care. We also are required to ask you whether you have written down your wishes prior to your heart transplant.
- Cleveland Clinic Legal and Ethical Decisions Downloads
You should know your options concerning the right to accept or refuse medical treatment and how you may make your wishes known about the care you want when you are unable to decide for yourself. You should know and understand your rights prior to your heart transplant.
Resources
These heart transplant and heart transplant surgery resources are provided for your information only. Inclusion does not imply endorsement by Cleveland Clinic. The heart transplant surgery information provided by these resources should not replace the advice of your healthcare providers.
American Heart Association
Phone: 800.AHA.USA.1
American Organ Transplant Association
Phone: 832.930.2682
American Society of Transplantation
Phone: 856.439.9986
Email: ast@ahint.com
Children's Organ Transplant Association
Phone: 800.366.2682
Division of Transplantation, U.S. Department of Health and Human Services
Phone: 301.443.7577
HelpHOPELive
Financial assistance and information on establishing fundraising campaigns to pay for transplant.
Phone: 800.642.8399
Email: info@helphopelive.org
International Society for Heart and Lung Transplantation
Phone: 972.490.9495
Email: ishlt@ishlt.org
Lifebanc
The federally designated, nonprofit organ procurement organization (OPO) for Northeast Ohio.
Phone: 888.558.LIFE (5433)
Email: info@lifebanc.org
National Foundation for Transplants
Phone: 800.489.3863
Email: info@transplants.org
The Organ Procurement and Transplantation Network
Phone: 888.TX.INFO.1
TransWeb
Nonprofit educational web site serving the world transplant community. Sponsored by Novartis.
Phone: 734.998.7314
Email: transweb@umich.edu
TRIO - Transplant Recipient International Organization
For all types of transplants.
Phone: 800.TRIO.386
Email: info@trioweb.org
UNOS - United Network for Organ Sharing
Transplant Living
Patient Education website sponsored by UNOS
Phone: 888.894.6361
Organizations Promoting Organ/Tissue Donation
American Association of Tissue Banks
Phone: 703.827.9582
Email: aatb@aatb.org
Donate Life - Coalition On Donation
Phone: 804.782.4920
Email: coalition@donatelife.net
Donate Life
Official U.S. government website for organ and tissue donation and transplantation
Gift of Life Foundation
Phone: 813.855.7600
Email: givelife@verizon.net
The Gift of a Lifetime
Stories about people whose lives are transformed by organ and tissue donation
Ohio Donor Registry
Phone: 888.745.1511
Email: SCTF@odh.ohio.gov
Heart Transplantation Glossary
Heart transplantation can be a daunting thing to face, so it helps to be familiar with the terminology. Compiled below is a glossary of terms you may find helpful to know as you go through the heart transplantation process.
Advance Directive: A document in which a person either states choices for medical treatment or designates someone who should make treatment choices if the person should become unable to make decisions. Most often the term refers to formal, written documents, but it can also be used to include spoken statements by the patient.
Allograft (allogeneic graft or homograft): An organ or tissue transplanted from one individual to another of the same species, i.e. human to human.
Antibody: A protein substance made by the body's immune system in response to a foreign substance, for example a previous transplant, blood transfusion or pregnancy. Because the antibodies attack the transplanted organ, heart transplantation patients must take powerful immunosuppressive drugs.
Antigen: A foreign molecule or substance, such as a transplant, that triggers an immune response. This response may be the production of antibodies.
Anti-hypertensive drug: A drug that reduces hypertension (high blood pressure).
Atherosclerosis: A disease in which fatty deposits accumulate on the inner walls of the arteries, causing narrowing or blockage that may result in a heart attack. Commonly known as "hardening of the arteries."
Attending or Primary Physician: The doctor who has the main responsibility for your care while you are in the hospital during heart transplantation. There may be other doctors caring for you such as consulting doctors, resident doctors, and medical students.
Bioethicist: Professionals who are skilled in helping people make decisions about what is morally right and wrong.
Biopsy: The removal of a sample of tissue via a small needle. The tissue is removed for examination to determine a diagnosis.
Blood Typing: A test that can help establish compatibility between two different types of blood. Blood types include A, B, AB or O.
Blood Urea Nitrogen (BUN): A waste product regularly removed by the kidneys and eliminated in the urine. Regular testing of the BUN level serves as an indicator of how well the kidney is functioning.
Brain Death: Brain damage that is so severe and extensive that the brain cannot recover. Breathing has stopped, but the circulation may still be continuing because of artificial ventilation. Donor organs can only be taken from people who are declared brain dead.
Breathing Tube (endotracheal tube): A temporary tube put into the nose or mouth. Anesthesia or air and oxygen pass through the tube allowing artificial breathing.
Cadaveric Donor: An individual who has recently passed away of causes not affecting the organ intended for transplantation. Cadaver organs usually come from people who have willed their organs before death by signing organ donor cards. Permission for donation also can be given by the deceased person's family at the time of death.
Catheter: A thin, flexible instrument used to introduce or withdraw fluids from the body. A catheter also may be used to monitor blood pressure.
Chest X-ray: Used to view the lungs and lower respiratory tract. A chest X-ray may be used for diagnosis and therapy.
Cholesterol: A fatty substance that is acquired in part from certain foods. A high cholesterol level may lead to atherosclerosis.
CPR (cardiopulmonary resuscitation): A procedure using cardiac and respiratory equipment and medications possibly to restore the heartbeat and/or breathing.
Compliance: The act of following orders and adhering to rules and policies, i.e. taking one's medications after transplant.
Complication: The occurrence of diseases or medical problems simultaneously in the body.
Coronary Angiography (Cardiac Catheterization): A procedure that allows picture to be taken of the arteries supplying the heart with blood (the coronary arteries). Angiography shows blockages in the arteries.
Creatinine: A waste product in the blood, creatinine is removed by the kidneys and eliminated in the urine. Regular testing of the creatinine level serves as an indicator of how well the kidney is functioning.
Crossmatch: A test that establishes the compatibility or closeness of blood between the organ donor and recipient. A positive crossmatch shows that the donor and patient are incompatible. A negative crossmatch means there is no reaction between donor and patient and that the transplant may proceed.
Cyclosporine Level Test: A blood test that measures the amount of cyclosporine in the blood. Based on the amount of cyclosporine measured, a physician decides what dose of cyclosporine is appropriate for a patient.
Cytomegalovirus (CMV): A common virus that may be present without symptoms in healthy people, but can be a serious condition if present in transplant patients.
Decisional Incapacity: A condition in which a patient is unable to understand his or her choices or declare personal wishes about his or her care.
Dialysis: An artificial means of cleansing the blood of waste products and removing fluids from the body when the patient's own kidneys are unable to continue this process.
Diastolic: The lower number in a blood pressure reading that indicates the pressure in the heart when the muscle is relaxed (the point of least pressure).
Diuretic: A drug that helps the body get rid of excess water by increasing the amount of urine the body excretes.
DNR Order (Do Not Resuscitate Order): An advanced directive that means no CPR is to be done when the heart and lungs stop.
Donor: A person who gives an organ, tissue or blood to another person. A compatible donor is a person who has the same tissue and blood types as the person who receives the organ, tissue or blood.
Durable Power of Attorney for Health Care: A written advance directive in which individuals name someone else (the "agent" or "proxy") to make health care decisions for them when they are unable to speak for themselves.
Echocardiogram: An imaging procedure that creates a moving picture outline of the heart's valves and chambers using high-frequency sound waves that come from a hand held wand placed on your chest or passed down your throat. Echo is often combined with Doppler ultrasound and color Doppler to evaluate blood flow across the heart's valves. Doppler senses the speed of sound and can pick up abnormal leakage or blockage of valves.
Electrocardiogram (EKG or ECG): A test that records on graph paper the electrical activity of the heart via small electrode patches attached to the skin. An EKG helps a physician determine the causes of abnormal heartbeat or detect heart damage.
Gingival Hypertrophy: Enlargement of the gums. A common side effect of the medication cyclosporine (Sandimmune), this condition is easily managed with good oral hygiene.
Glucose: Blood sugar. Manufactured by the body from carbohydrates, protein, and fat, glucose is the main source of energy for all living organisms.
Graft: A transplanted tissue or organ (such as the lung or liver).
Herpes: An infection for which transplant patients are at risk. It appears as small sores on the skin, lips or genitals. When there are no sores, the herpes virus lies dormant (not causing infection) in the body.
Hirsutism: An excessive increase of hair growth, sometimes leading to male-pattern hair growth in a female. A common side effect of corticosteroids, it can also occur with cyclosporine (Sandimmune) therapy. Hirsutism can be easily treated with depilatory creams or other hair removal methods.
Hypertension: High blood pressure.
HLA System (Human Leukocyte Antigens): There are three major genetically controlled groups: HLA-A, HLA-B and HLA-DR. In transplantation, the HLA tissue types of the donor and recipient are sometimes an important part of the selection process. This depends on the recipient's antibodies.
Histocompatibility Antigens: Molecules found on all nucleated cells in the body that characterize each individual as unique. These antigens are inherited from one's parents. Human leukocyte antigens determine the compatibility of tissues for transplantation from one individual to another.
Hospice: A program that provides care for the terminally ill in the form of pain relief, counseling, and support, either at home or in a facility.
Hydration: Provision of fluids by any means to prevent dehydration.
Immune Response: The body's defense against foreign objects or organisms, such as bacteria, viruses or transplanted organs or tissue.
Immune System: The body's response mechanism for fighting against bacteria, viruses and other foreign substances. If a cell or tissue (such as bacteria or a transplanted organ) is recognized as not belonging to the body, the immune system will act against the "invader." The immune system is the body's way to fight disease.
Immunosuppressant Drug: A drug that prevents the immune system from responding to cells that it recognizes as foreign to the body. Such drugs prevent the immune system from recognizing that a transplanted organ, such as a lung, is not the organ a person had when he or she was born.
Immunosuppression: The artificial suppression of the immune response, usually through drugs, so that the body will not reject a transplanted organ or tissue. Drugs commonly used to suppress the immune system after transplant include prednisone, azathioprine (Imuran), mycophenolate mofetil (CellCept), and cyclosporine (Neoral).
Infectious Disease Team: A team of physicians who help control the hospital environment to protect you against harmful sources of infection.
Intensive Care Unit (ICU): A special nursing area devoted to providing continuous and immediate care to seriously ill patients.
Intravenous (IV): Delivery of drugs, fluids or food directly into a vein.
Informed Consent: A process of reaching an agreement based on full disclosure. Informed consent has components of disclosure, comprehension, competence and voluntary response. Informed consent often refers to the process by which one decides to donate the organs of a loved one.
Legal Guardian: A person charged (usually by court appointment) with the power and duty of taking care of and managing the property and rights of another person who is unable to take care of their own affairs.
Life-Sustaining Treatment: A medical treatment given to a patient that prolongs life and delays death.
Living Will: A written advance directive in which an individual states which health care decisions should be made if the individual becomes unable to make these decisions.
Medical Student: A student in the third or fourth year of medical school training. The student doctor assists the primary and resident doctors in daily care of patients.
Noncompliance: Failure to follow instructions given by health care providers, such as not taking medication as prescribed or not attending follow-up appointments.
NOTA: The National Organ Transplant Act, passed by Congress in 1984, outlawed the sale of human organs and initiated the development of a national system for organ sharing and a scientific registry to collect and report transplant data.
Ohio Solid Organ Transplantation Consortium (OSOTC): An organization that establishes and enforces regulations to ensure equality in organ transplantation and fairness in distribution of donor organs.
Ombudsman: The staff of the Ombudsman's office is available to patients and family members to help investigate and solve problems with medical service. The Ombudsman acts as a "go-between" for the patient and Cleveland Clinic. The ombudsmen report directly to key administrators and have the authority to investigate patient complaints. To contact an ombudsman, call 216.444.2544.
Organ Preservation: Between procurement from a donor and heart transplantation, organs require special methods of preservation. The length of time that organs and tissues can be kept outside the body vary, depending on the organ, the preservation fluid and the temperature.
Palliative Care: Medical treatments intended to control suffering and discomfort (such as pain medication or treatment of an infection). These treatments will not cure the patient.
Panel Reactive Antibody (PRA): The percentage of cells from a panel of donors with which a potential recipient's blood serum reacts. The more antibodies in the recipient's blood, the higher the PRA. The higher the PRA, the less chance of getting a good crossmatch.
Patient Service Representative: Members of this department can address or direct questions concerning hospital policies and procedures, secure patient valuables and belongings, and provide notary service.
Permanently Unconscious State: A condition of coma in which a patient is irreversibly unaware of himself and his environment, and has a total loss of higher brain functioning, resulting in no capacity to experience pain or suffering.
Persistent Vegetative State: Same as "permanently unconscious state."
Pharmacologist: A medication specialist who checks your blood levels to monitor your response to immunosuppressive medications.
Physical Therapist: An expert who can recommend exercises to help you maintain flexibility and regain your strength.
Pre-transplant Evaluation: A series of interviews and tests for patients who are being considered for a transplant. It is the second step in the transplant evaluation process. After this evaluation, the transplant team decides if a transplant is a suitable treatment.
Pre-transplant Screening: A series of interviews and physical examinations for patients who are being considered for a transplant. Pre-transplant screening is the first step in the transplant process to discover if a patient has any condition that would immediately rule him or her out for a transplant.
Proxy: A person appointed to make decisions for someone else, as in a Durable Power of Attorney for Health Care (also called a surrogate or agent).
Pulmonary Function Test: A test used to reveal lung capacity and function, and to determine the blood's capacity to transport oxygen.
Pulmonologist: A staff physician with extensive training in lung disease.
Pulmonary Function Tests (PFTs): Tests that measure the volume of air that is inhaled and exhaled. The PFTs also measure gases, such as oxygen and carbon dioxide, in the lungs.
Recipient: A patient who receives an organ, tissue or blood from another person.
Rejection: The process by which the body tries to get rid of a transplanted organ or tissue by producing antibodies. Immunosuppressive drugs help to prevent rejection.
Required Request: Hospitals must tell the families of suitable donors that their loved one's organs and tissues can be used for transplant. This law is expected to increase the number of donated organs and tissues used for transplantation.
Resident Physician: A doctor who works closely with the primary physician to manage a patient's daily care. The resident is a licensed medical school graduate doing further training in one of the specialties of medicine.
Retransplantation: Due to organ rejection or transplant failure, some patients return to the waiting list. Reducing the number of retransplants is a critical concern when examining ways to maximize a limited supply of organs.
Sensitization: Potential recipients are "sensitized" if there are antibodies in their blood, usually because of pregnancy, blood transfusions or previous rejection of an organ transplant. Sensitization is measured by PRA. Highly sensitized patients are more likely to reject an organ transplant than unsensitized patients.
Side Effect: An unintended effect of a drug on tissues or organs other than the drug benefits.
Status: Indicated degree of medical urgency for patients awaiting transplants.
Survival Rates: Survival rates indicate the percentage of patients or grafts (transplanted organs) that are still alive and functioning at a certain point post-transplant. Survival rates are often given at one-, three-, and five-year increments. Policy modifications are never made without examining their impact on transplant survival rates. Survival rates improve with technological and scientific advancements. Developing policies that reflect and respond to these advances in transplantation will also improve survival rates.
Systolic: The top number in a blood pressure reading that indicates the force of the heart muscle's contractions as blood is pumped through the heart's chambers.
Terminal Condition: An irreversible, incurable, and untreatable condition from which there can be no recovery, and death is likely to occur soon. Nursing and medical efforts are administered to provide comfort.
Thrush: A yeast infection for which transplant patients are at risk. It can occur in the mouth or vagina.
Tissue Typing: A test that evaluates the compatibility or closeness of tissue between the organ donor and recipient.
TPN (total parenteral nutrition): A special intravenous (IV) solution providing hydration, vitamins, minerals and calories to sustain life. This IV is usually inserted into a large vein in the neck area.
Transplant Coordinator: A registered nurse who coordinates all of the events leading up to and following your transplant. The transplant coordinator helps arrange your pre-transplant tests and helps find a suitable donor.
Transplant Surgeon: The staff physician who performs the transplant surgery. The transplant surgeon follows your progress while you are in the hospital and monitors your post-transplant care after you are discharged.
Tube Feeding (enteral feeding): A temporary artificial method of providing food through a tube inserted into the stomach. This food is in a liquid form and contains calories, vitamins and electrolytes. Enteral feeding may be necessary when food cannot be taken by mouth.
UNOS: United Network for Organ Sharing - the national nonprofit agency that establishes and enforces regulations to ensure equality in organ transplantation and fairness in distribution of donor organs.
U.S. Scientific Registry of Transplant Recipients: A database of post-transplant information. Follow-up data on every transplant are used to track transplant center performance, transplant success rates and medical issues impacting transplant recipients. UNOS facilitates the collection, tracking and reporting of transplant recipient and donor data.
Ventilator: A machine used to assist or control breathing (may be called a respirator).
Waiting List: After evaluation by the transplant physician, and after committee presentation, a patient is added to the national waiting list by the transplant center. Lists are specific to both geographic area and organ type: heart, lung, kidney, pancreas, intestine, heart-lung, kidney-pancreas.
Each time a donor organ becomes available, the computer generates a list of potential recipients based on factors that include blood type, organ size, medical urgency and time on the waiting list.
A "new" United Network for Organ Sharing (UNOS) waiting list is generated each time an organ becomes available. There are many factors that go into the actual decision of donor selection and recipient matching. Although your place on the list and the amount of time you have been waiting for transplant are important factors, the transplant surgeon ultimately is the one to make the final decision.
