Glossary of Medical Terms

Acinus
The main structural unit of the liver seen under the microscope; each acinus includes liver cells, sinusoids, central and portal areas with blood vessels, lymphatics and bile ducts.
Acute fatty liver
Rapid accumulation of fat in the liver usually caused by alcohol or medications that interfere with fat metabolism. Rarely, this can occur in the last trimester of pregnancy.
Acute liver disease Liver disease that is limited in duration, but usually with a sudden and symptomatic onset.
Acute liver failure
Serious liver failure arising suddenly in a person without previous liver disease.
Acute hepatic necrosis
Sudden severe liver (hepatic) cell death (necrosis) that is typical of toxic injury to the liver.
Adenoma
A benign tumor of the liver that can grow large and rupture, causing internal bleeding.
Adenosine triphosphate (ATP)
The molecule within cells used for energy reactions.
Alanine aminotransferase (ALT)
An enzyme found in the blood that is elevated with liver injury, particularly hepatocellular (formerly SGPT). This is the most sensitive indicator of injury to the liver.
Alkaline phosphatase (Alk P)
An enzyme found in the blood that is elevated with liver injury, particularly cholestatic. This enzyme can also originate from other structures, like bone and bowel; if originating from the liver, other enzymes, such as the GGT, ALT, or liver fraction of the alkaline phosphatase will be abnormal.
Allogeneic A transplant in which the recipient receives an organ or cells from another (usually related) person.
Aminotransferase One of two enzymes (alanine or aspartate aminotransferase: ALT and AST) found in the blood that, when elevated, are sensitive indicators of liver injury.
Anicteric
Absence of jaundice (icterus).
Antinuclear antibody
An antibody found in blood directed against the nucleus of cells, typically present in patients with autoimmune hepatitis.
Anti smooth muscle antibody
An antibody found in blood directed against smooth muscles, typically present in patients with autoimmune hepatitis.
Apoptosis
Programmed cell death which is typical of the liver cell injury from hepatitis, as opposed to necrosis which is typical of toxic injury or shock.
Ascites
Accumulation of fluid in the abdominal cavity, which is usually caused by acute or chronic liver failure.
Aspartate aminotransferase (AST)
An enzyme found in the blood that is elevated with liver injury, particularly hepatocellular (formerly SGOT). Although elevated in liver disease, the enzyme can originate from other organs and muscle.
Asterixis
A jerking motion of the outstretched hands that is a sign of early stages of liver coma.
Autoantibodies
Antibodies in the blood that are directed against normal body proteins or cells, such as antinuclear antibody or anti smooth muscle antibody.
Autoimmune features
Findings suggestive of an overactive immune system, such as high antibody levels and “”autoantibodies””.”
Autoimmune hepatitis
A chronic liver disease in which an overactive immune system appears to damage the liver.
Autologous
A transplant in which the recipient receives his,her own organ or cells.
Ballooning degeneration
A form of liver cell (hepatocyte) degeneration associated with cell swelling.
Benign postoperative cholestasis
Jaundice after major surgery that is temporary and resolves without treatment.
Bile ducts
The small conduits (ducts) in the liver that allow the flow of bile from liver cells out through gradually larger bile ducts into the intestine.
Bilirubin
The chemical breakdown product of red blood cells that is normally removed by the liver and excreted in bile. Bilirubin can accumulate in the serum and lead to detectable jaundice when there is liver injury and dysfunction, obstruction to the flow of bile, or spontaneous red cell destruction (hemolysis).
Bland cholestasis
Cholestatic liver injury with minimal or no inflammation in the liver.
Bone marrow transplantation
Replacement of a person’s bone marrow with that of another person, used to treat leukemia and other severe forms of cancer or genetic disease.
Budd Chiari syndrome
A severe liver disease caused by clotting and blockage of the large veins that drain the liver.
Celiac disease
An inherited disease of the small intestine caused by allergy to wheat (gliadin).
Cerebral edema
Swelling of the brain due to accumulation of fluid, that can occur in liver failure.
Cholangiography
An X ray that shows the large bile ducts that drain bile from the liver into the intestine.
Cholecystectomy
A surgical operation to remove the gallbladder.
Cholecystitis
Inflammation of the gallbladder, typically causing fever, nausea, and abdominal pain.
Choledocholithiasis
Gallstones which have passed into the bile ducts.
Cholelithiasis
Gallstones in the gallbladder.
Cholestatic injury
Liver injury in which interference with bile flow and jaundice are prominent.
Cholesterol
The major form of fat in the body, most of which is produced in the liver.
Chronic liver disease
Persistent, long term liver disease often with vague or mild symptoms and slow onset. Conventionally, disease has been present for more than 6 months.
Chronic liver failure
Serious liver failure arising gradually in a person with a chronic liver disease.
Cirrhosis
Scarring and permanent injury to the liver, usually the result of chronic, long term damage.
Clinical phenotype
A pattern of clinical presentation and course of liver injury that is typical for a specific disease or injury from a specific medication.
Clinical signs
Findings on physical examination such as rash, fever, enlarged or tender liver and jaundice.
Clinical symptoms
Patient complaints such as fatigue, nausea, poor appetite, dark urine or yellow discoloration of the skin (jaundice).
Coagulopathy
Abnormal bleeding tendency which can be caused by lack of clotting factors that are made by the liver.
Collagen
The major protein found in scars and that is increased in cirrhosis of the liver.
Dark urine
Dark or tea colored urine is a symptom of liver disease caused by elevations in serum bilirubin and secretion of bilirubin in the urine.
Dietary Supplements
Dietary supplements contain one or more dietary ingredients such as vitamins, minerals, herbals or other botanicals, amino acids or organ extracts that are intended to supplement the diet.
Ductopenia
Finding on liver histology of a decrease or lack of small bile ducts in the liver.
Ductules
The smallest bile ducts that can be seen on liver histology.
Edema
Tissue swelling of the feet, ankles or other parts of the body caused by abnormal accumulation of fluid which can be the result of heart, kidney or liver failure.
Eosinophilia
Increased eosinophils in the blood (the white blood cells that are active in allergic reactions).
Elastography
A noninvasive X ray method of measuring stiffness of the liver, which is increased with advancing fibrosis and cirrhosis.
Encephalopathy
Mental confusion and altered level of consciousness that can occur in liver failure.
Endothelial cell
The cells in the liver that line the blood channels (sinusoids).
Esophagus
The muscular swallowing tube that runs from the mouth to the stomach.
Fatty acid
The breakdown product of triglycerides and fat that are taken up by the liver and used as a source of energy or to make triglycerides.
Fibrosis
The presence of scarring in the liver, usually shown by liver biopsy histology.
Focal nodular hyperplasia
A benign tumor of the liver.
Gamma glutamyl transpeptidase (GGT)
An enzyme found in the blood that is elevated with liver injury, particularly cholestatic. This is also commonly elevated in recent alcohol consumption.
Glutathione
A substance made in the liver that binds to and helps remove drugs and toxins.
Glycogen
The principal storage form of glucose (sugar) in the liver.
Granulomatous hepatitis
Liver injury in which granulomas (small collections of inflammatory cells) are found in the liver biopsy.
Graves’ disease
A disease of the thyroid (hyperthyroidism)
Hepatic encephalopathy
Confusion, mental dullness, drowsiness and even coma caused by liver failure.
Hepatitis A
Infectious liver disease, spread primarily through the fecal oral route, caused by the hepatitis A virus; now preventable by vaccine. Most people recover and the infection does not become chronic.
Hepatitis B
Infectious liver disease caused by the hepatitis B virus, spread primarily through sexual contact or through perinatal (vertical) transmission; now preventable by vaccine. Approximately 5% of acute hepatitis B cases become chronic.
Hepatitis C
Infectious liver disease caused by the hepatitis C virus for which there is no vaccine and which commonly becomes chronic; now the most common cause of cirrhosis in the United States.
Hepatitis D
Rare but severe liver disease caused by the hepatitis D virus, which only affects persons who are also infected with hepatitis B.
Hepatitis E
Infectious form of viral hepatitis that is rare in the United States but common in the developing world; may also be spread by contact with pigs or wild boar.
Hepatocellular injury
Liver injury in which liver cell damage and inflammation are prominent.
Hepatocyte
The major cells in the liver responsible for its function.
Hepatotoxicity
Toxin injury to the liver due to a medication, chemical, herbal or dietary supplement; another term for drug induced liver injury.
Hemangioma
Hematopoietic cell transplantation
Transplantation of blood elements such as bone marrow or stem cells.
Hepatic venous pressure gradient
A diagnostic measurement of the pressure inside the veins of the liver that is increased in cirrhosis.
Hepatomegaly
Enlargement of the liver.
Hyperammonemia
High levels of ammonia in the blood which can occur in liver failure.
Hyperlipidemia
Abnormally high levels of lipids (cholesterol, triglycerides) in the blood.
Hyperthermia
Abnormally high body temperature, usually due to heat shock, which can cause liver injury.
Hypotension
Abnormally low blood pressure, which can cause liver injury (ischemic hepatitis).
Hypoxia
Low oxygen tension in the blood which can cause liver injury (ischemic hepatitis).
Icteric
Presence of jaundice, which is typically first evident in the whites of the eyes (sclera) followed by skin.
Icterus
Another name for jaundice, used to describe a yellowish tinge to the skin and eyes.
Idiopathic
” A medical term meaning “”of unknown cause””.”
Immunoallergic hepatitis
Liver injury with prominent features of allergy or hypersensitivity. Typically, this includes fever, rash, and,or hives.
Immunoglobulin
A class of blood proteins that include antibodies.
Interlobular bile ducts
The larger bile ducts in the liver that allow the flow of bile from intralobular bile ducts to the larger bile ducts that, ultimately, direct bile to the gallbladder and intestine.
Ischemic hepatitis
Severe hypotension (shock), lack of oxygen (anoxia), or sudden heart failure that leads to decreased blood flow to the liver; usually resolves quickly if the sudden insult is corrected.
Itching
” Irritating skin sensation that provokes scratching, a symptom of liver disease, particularly cholestatic (also known as “”pruritus””).”
Jaundice of sepsis
Jaundice occurring in the setting of severe bacterial infections (sepsis) that resolves if the infection in treated; liver biopsy shows prominent cholestasis.
Jaundice
” Yellowish tinge to the skin or whites of the eyes caused by elevation in bilirubin in the blood; also called “”icterus””.”
Lactic acidosis
High levels of lactic acid in the blood, usually caused by failure of mitochondrial function in the liver.
Large bile ducts
The bile ducts in the liver (right and left hepatic duct) and outside of the liver (common bile duct) allow the flow of bile to the gallbladder and intestine.
Latency
The duration between ingestion, or exposure, to a drug, toxin, or infectious agent and the onset of disease.
Likelihood score
A 5 point scale [A to E] that estimates whether a medication is a of cause liver injury: A=Well known cause; B=Highly likely cause; C=Probable cause; D=Possible cause; E=Unlikely cause; E*=Suspected but unproven cause; X=Unknown.
Liver histology
Findings on microscopic assessment of a liver biopsy.
Liver inflammation
Findings of white blood cells (inflammatory cells) in the liver on microscopic assessment of a liver biopsy.
Liver test abnormalities
Blood tests results that indicate liver injury such ALT, AST, alkaline phosphatase, bilirubin, albumin and prothrombin time (or INR).
Liver transplantation
Replacement of a person’s liver with that of another person, used to treat end stage liver disease, acute liver failure, liver cancer and rare genetic disorders.
Lymphocyte
A type of white blood cell that is responsible for immune responses.
Macrophage
A large cell found in the liver that engulfs foreign material and takes part in inflammation.
Macrovesicular fat
Abnormal large droplets of fat found in liver cells; typically, the nucleus is pushed to one side of the cell by fat droplets.
Mallory bodies
Abnormal twisted rope like bodies seen by microscope in fatty liver disease.
Matrix
The proteins that surround and support cells.
Microvesicular fat
Abnormal numbers of small droplets of fat in liver cells; typically, the nucleus remains in the center of the cell.
Mitochondria
A component found in all living cells that is responsible for producing energy and is essential for health.
Mixed injury
Liver injury with features of both hepatocellular and cholestatic injury.
Monoclonal antibody
Antibodies produced in mice that are highly specific for a single protein or substance, which can be used to treat serious diseases such as cancer (rituximab) or arthritis (infliximab).
Mononucleosis
Acute illness caused by the Epstein Barr virus that can cause liver disease that resembles acute viral hepatitis.
M & V Scale
A causality assessment method similar to RUCAM developed by Drs. Maria and Victorino.
Myeloablation
Deliberate destruction of the bone marrow by chemotherapy, done in preparation of bone marrow transplantation.
Myopathy
Disease of the muscles.
Naranjo Scale
A causality assessment method for assessing all forms of drug induced adverse events.
Neuropathy
Disease of the brain, nerves or nervous system.
Neutropenia
Decrease in neutrophils, a white blood cell important in defense against infections.
Neutrophil
A white blood cell which is an important defense in bacterial infections.
Nodular regenerative hyperplasia
Unusual transformation of the normal liver structure into nodules. Typically, there is little or no scar tissue, differentiating this from cirrhosis.
Nonparenchymal
A liver histology term referring to those parts of the liver other than the major hepatocytes (liver cells) including the endothelial cells, macrophages, veins, arteries and bile ducts.
Nystagmus
Involuntary jerking motion of the eyes that occurs with brain injury and liver coma.
Optic neuritis
Inflammation of the nerves of the eye, which can cause blindness.
Pancreatitis
Inflammation and injury of the pancreas.
Parenchymal
A liver histology term referring to the part of the liver with hepatocytes (liver cells) as opposed to the areas with supporting cells, veins, arteries and bile ducts.
Percutaneous liver biopsy
A liver biopsy that is done by passing a needle through the skin into the liver.
Plasma cell
A cell that makes antibodies, which is often found in liver inflammation caused by autoimmune reactions.
Portal hypertension
Abnormally increased pressure in the portal vein that delivers blood from the intestine to the liver, which is caused by cirrhosis and can result in bleeding and fluid retention (ascites).
Portal inflammation
Findings of inflammatory cells on liver biopsy in areas around the veins, arteries and bile ducts entering the liver.
Primary biliary cirrhosis
A chronic liver disease marked by gradual autoimmune loss of bile ducts leading ultimately to cirrhosis.
Primary sclerosing cholangitis
A chronic autoimmune disease marked by damage and loss of the large bile ducts that can lead to liver damage and cirrhosis.
Prodromal
In acute liver disease, the period of symptoms, frequently vague, immediately before appearance of jaundice.
Prognosis
Prediction or likelihood of an outcome (good or bad) of an illness.
Prothrombin time
A measure of clotting ability that becomes abnormal (prolonged) with liver failure.
Pruritus
Itchiness of the skin, a symptom of liver disease, particularly cholestatic.
Radio mimetic
Resembling radiation effects.
Rechallenge
Reexposure, deliberate or accidental, of a patient to a medication that was believed to have caused an adverse side effect, such as drug induced liver injury.
Reticulin
A stain used on liver biopsies to visualize elastic fibers.
Reye’s syndrome
An acute and severe liver disease of children that follows an acute viral illness and aspirin use.
RUCAM
The Roussel Uclaf Causality Assessment Method for evaluating the likelihood that a medication has caused drug induced liver injury.
R value
The ratio of alanine aminotransferase (ALT) to alkaline phosphatase (Alk P) values, both expressed as multiples of the upper limit of normal. An R value of >5.0 is used to define hepatocellular injury, R <2.0 as cholestatic injury, and R between 2.0 to 5.0 as mixed hepatocellular cholestatic injury.
Sinusoids
The small passages between liver cells in which blood flows from the portal areas to the central veins.
Sinusoidal obstruction syndrome (SOS)
Liver histology findings indicating a blockage of blood flow out of the liver.
Splenomegaly
Enlargement of the spleen.
Status epilepticus
Persistent, uninterrupted seizures.
Steatohepatitis
Excess fat with inflammation and damage in the liver.
Steatosis
An abnormal amount of fat in the liver.
Stellate cells
Fat storing cells in the liver that make collagen (fibrosis).
Stevens Johnson syndrome
Sudden onset of fever and severe body rash often due to an allergic reaction to a medication.
Synthesis
Production or making of a substance.
Tachycardia
Rapid heart rate.
Tachypnea
Rapid breathing rate.
Thrombocytopenia
Abnormal decrease in the numbers of blood platelets, which are small elements needed for clotting.
Transjugular liver biopsy
A liver biopsy that is done by passing a needle in a flexible tube from a vein in the neck into the liver.
Triglycerides
One of the major forms of fat that is produced in the liver and found in the blood.
Varices
Abnormal, large veins that are found in the esophagus and intestine when there is portal hypertension.
Vanishing bile duct syndrome (VBDS)
A chronic form of liver disease in which there is a gradual loss of small bile ducts in the liver (ductopenia).
Veno occlusive disease (VOD)
” Another term for “”sinusoidal” “obstruction syndrome”” or liver histology findings indicating a blockage of blood flow out of the liver.”
Vinyl chloride
Chemical used in manufacturing that can harm the liver.
Viral hepatitis
Liver disease caused by one of 5 hepatitis viruses (A, B, C, D or E).
Wilson disease
An inherited disease marked by accumulation of copper in the liver, brain and other tissues that can cause cirrhosis and be fatal if not detected early and treated.
Allocation
The process of determining how organs are distributed. Allocation includes the system of policies and guidelines which ensure that organs are distributed in an equitable, ethical and medically sound manner.
Allograft
An allograft is a transplant of an organ or tissue that comes from another person of the same species.
Aneurysm
An aneurysm or aneurism is a ballooning or weakened area in the wall of a blood vessel. As it increases in size, the risk of rupture increases, which can lead to internal bleeding and death.
Anti Rejection Medicine (immunosuppressive drugs)
Medicines that reduce or prevent the body’s ability to reject a transplanted organ or tissue.
Antibody
A protein substance made by the body’s immune system to attack a foreign substance, for example, a blood transfusion, virus or pregnancy. Because antibodies attack transplanted organs, transplant patients must take powerful drugs to reduce the body’s attack on the transplanted organ. See anti rejection medicine.
Antigen
A foreign substance, such as a transplanted organ or tissue, that triggers the body to reject it (destroy it.)

Blood Vessels
The arteries, veins, and capillaries through which blood circulates. Blood vessels can be donated and transplanted.
Bone
Dense tissue that forms the skeleton and supports the body. Bone can be donated and transplanted.
Bone Marrow
A thick liquid substance found in the body’s hollow bones, such as leg, arm and hip bones. Marrow consists of cells that develop into blood cells (platelets, red blood cells, and white blood cells). Marrow for transplant is usually collected from the pelvic bone.
Brain Death
Brain death occurs when the brain is totally and irreversibly non functional. Brain death is caused by not enough blood supply of oxygen which causes the brain cells to die.
Cadaveric Donors
Also called non living or deceased donors (preferred term), are those who donate their organs or tissue after they have died.
Candidate
A patient who has been placed on the national waiting list for solid organ transplantation.
Circulatory Death
Occurs when a person’s heart stops and cannot be resuscitated. Just like brain death, there is no recovery from circulatory death (also known as cardiac death).
Cold Ischemia Time
The time an organ is without blood circulation and is kept cold—from the time the organ is removed from the donor to the time it is transplanted into the recipient. In surgery, the time between the chilling of a tissue, organ, or body part after its blood supply has been reduced or cut off and the time it is warmed by having its blood supply restored. This can occur while the organ is still in the body or after it is removed from the body if the organ is to be used for transplantation.
Connective Tissue
Forms the supportive and connective structures of the body, such as tendons, ligaments cartilage, bone and fascia (the silver colored covering of muscles). Connective tissue surrounds many organs.
Cornea
The transparent outer covering of the eye’s iris and pupil. Corneas can be donated and transplanted to restore sight for people with damaged corneas.
Cross Matching
” A blood test performed before a transplant to find out if the specific donor organ to be transplanted is likely to be rejected by the prospective recipient. If the test is positive, the donor and recipient are “”incompatible”” and the transplant is unlikely to be performed with an organ from that donor.”
Cyclosporine
A medicine that suppresses the body’s immune response thereby preventing organ rejection.

Deceased Donor
A person who has been declared dead and whose organs and,or tissues have been donated for transplantation.
Designated Requestor
Defined in the Centers for Medicare and Medicaid Conditions of Participation as an individual who has completed a course offered or approved by the OPO and designed in conjunction with the tissue and eye bank community in the methodology for approaching potential donor families and requesting organ donation. The interpretation of this rule allows for some degree of flexibility.
Donation
The act of giving organ(s), tissue(s), or blood to someone else without compensation.
Dialysis
A mechanical process designed to remove toxic substances from the blood, including correcting the balance of fluids and chemicals in the body and removing wastes when the kidneys are unable to do so. See hemodialysis and peritoneal dialysis.
Domino Transplant
Although it does not happen often, a domino transplant occurs when patient A needs lungs, but the best treatment is to give that patient a heart and lung combination. Since patient A’s heart was good, it can be transplanted into patient B who needs only a heart.
Donor Designation
Documentation of an individual’s decision to donate organs, eyes, and,or tissues after death, usually designated on a driver’s license or through a State donor registry.
Donor Registries
A confidential electronic database in which individuals can enter and store their wish to be an organ and tissue donor. Most registries are for a single state, but a few serve more than one state. Most registries have enrollment capacity through the motor vehicle offices and many also have online registry portals. Because registry information is accessible on a 24,7 basis to authorized procurement personnel, it is the safest and quickest way to determine if a deceased individual wanted to be a donor.

End Stage Organ Disease
A disease that leads, ultimately, to permanent, complete failure of an organ to function. Some examples are emphysema (lungs), cardiomyopathy (heart), and polycystic kidney disease (kidneys).
End Stage Renal Disease (ESRD)
The complete or almost complete failure of the kidneys to function. The kidneys can no longer remove wastes, concentrate urine, and regulate many other important body functions.

First Person Consent Legislation
State laws ensuring legal authority to proceed with organ procurement without consent from the family based on a legal indication of the deceased’s consent for donation, such as on a driver’s license or other official document.

Genetic Disorder
A disease or disorder related to heredity, birth or origin.
Graft
A transplanted organ or tissue.
Graft Survival
The length of time an organ functions successfully after being transplanted.

Heart
A muscular organ that pumps blood through the body. The heart can be donated and transplanted.
Heart Valves
Prevent the back flow or leakage of blood as it is being pumped through the chambers inside of the heart. Heart valves can be donated and transplanted.
Hemodialysis
A treatment for kidney failure in which the patient’s blood is passed through a filtering membrane to remove excess fluid and wastes.
Histocompatibility
” The examination or testing of antigens to determine if a donor organ will “”match”” and be compatible with a potential recipient’s system. This routine test is often called tissue” typing and helps identify the most suitable recipient for a donated organ.
Human Leukocyte Antigens (HLA)
A genetically determined series of markers (molecules) located on human white blood cells (leukocytes) and on tissues that are inherited from both biological parents. HLA matching is important for compatibility between donor and recipient.

Immune Response
The body’s natural defense against foreign objects or organisms that invade the body, such as bacteria or transplanted organs.
Immunosuppressive Drugs
Chemical agents that cause the human body not to produce antibodies that normally fight off foreign material in the body. The production of these antibodies needs to be suppressed in order to permit the acceptance of a donor organ by the recipient’s body. See also Anti Rejection Medicine.
Informed Consent
The process of reaching a voluntary agreement based on a full disclosure and full understanding of what will take place. Informed consent often refers to the process of making decisions regarding participation in research as well as undergoing medical procedures, including the decision to donate the organs of a loved one.
Intestines
The portion of the digestive tract extending from the stomach to the anus, consisting of the stomach, the upper segment (small intestine) and lower segment (large intestine.) The intestines can be donated and transplanted.

Kidneys
A pair of organs that maintain proper water and electrolyte balance, regulate acid base concentration, and filter metabolic waste which is excreted as urine. Kidneys can be donated by deceased and living donors to be transplanted.

Ligaments
Fibrous bands or sheets that link two or more bones, cartilages, or structures together. Ligaments provide stability during rest and movement and protect against excessive movements such as hyper extension or hyper flexion. Ligaments can be transplanted. See Connective Tissue.
Liver
A large reddish brown organ that secretes bile and is active in the formation of certain blood proteins and in the metabolism of carbohydrates, fats, and proteins. The liver, like the kidneys, assists in the removal of waste and toxins from the blood stream. The liver can be donated by deceased donors, and a liver lobe (section) can be provided by a living donor to be transplanted. The donor’s liver will grow to full size, and the transplanted lobe will too.
Living Donor
A person who donates an organ or tissue while alive.
Lungs
The organs that enable breathing to take place, providing life sustaining oxygen to the body and its organs. Air is inhaled into the lungs and oxygen in the air is exchanged for carbon dioxide that is then exhaled. The exchange happens in the blood as it circulates through the sponge like lung tissue. The lungs can be donated and transplanted, and a lung lobe can be donated by a living donor.
Lymphocytotoxic Crossmatch Test
The lymphocytotoxic crossmatch test detects antibodies in the recipient that react with donor HLA antigens prior to transplantation. Lymphocytotoxic crossmatch tests are used primarily for transplant candidates to assess the suitability of a potential donor. A positive lymphocytotoxic crossmatch identifies antibodies responsible for hyperacute rejection of kidney grafts and is therefore a clear contraindication to transplantation.
Match
The degree of compatibility or likeness between a donor and a recipient.
Match Run
The list that is generated when an organ donor’s information is entered into the national waiting list computer system to identify potential recipients.
Metabolic Disorder
A condition or disease related to dysfunction in the chemical processes and activities of the body (i.e., metabolism).

National Organ Transplant Act (NOTA)
Passed by Congress in 1984, NOTA initiated the development of a national system of organ sharing and a scientific registry to collect and report transplant data. It also outlawed the sale of human organs in the United States.

Organ
A part of the body, made up of various tissues, which performs a particular function. Transplantable organs are: heart, intestines, liver, lungs, kidneys, and pancreas.
Organ Donation
Giving an organ or a part of an organ to be transplanted into another person. Organ donation can occur with a deceased donor, who can give kidneys, pancreas, liver, lungs, heart, intestinal organs, and with a living donor, who can give a kidney or a portion of the liver, lung, or intestine.
Organ Preservation
Methods used to maintain the quality of organs between removal from the donor and transplantation into recipient. These methods include preservation solutions, pumps, and cold storage. Preservation times can vary from 2 to 48 hours depending on the type of organ being preserved. See Cold Ischemia Time.
Organ Procurement and Transplantation Network (OPTN)
In 1984, Congress passed the National Organ Transplant Act that mandated the establishment of the OPTN and Scientific Registry of Transplant Recipients. The purpose of the OPTN is to improve the effectiveness of the nation’s organ procurement, donation and transplantation system by increasing the availability of and access to donor organs for patients with end stage organ failure. The Act stipulated that the network be a nonprofit, private sector entity whose members are all U.S. transplant centers, organ procurement organizations and histocompatibility laboratories. The OPTN is administered by UNOS under contract to the U.S. Department of Health and Human Services.
Organ Procurement Organizations (OPO)
Local organizations throughout the U.S. designated by the Centers for Medicare and Medicaid Services (CMS) are responsible for increasing the number of registered donors in their service areas, and for coordinating the donation process when actual donors become available. OPOs evaluate potential donors, discuss donation with surviving family members, and arrange for the surgical removal and transport of donated organs. To increase donor registration, OPOs implement community outreach strategies to encourage people to sign up in their state donor registry. Find your local OPO

Pancreas
Long, irregularly shaped gland that lies behind the stomach. Some glands in the pancreas secrete insulin. Pancreas transplants give patients with diabetes a chance to become independent of insulin injections. In addition to insulin, the pancreas secretes digestive enzymes (into the small intestine) that aid in the digestion of proteins, carbohydrates, and fats.
Peritoneal Dialysis
A process of filtering waste using the peritoneal membrane inside the abdomen. The abdomen is filled with special solutions that help remove toxins. The solutions remain in the abdomen for a time and then are drained out. This form of dialysis can be performed at home, but must be done every day.
Peripheral blood stem cells (PBSC)
Peripheral blood stem cells are the cells that make their way from the bone marrow to the circulating blood. Learn more about donating bone marrow or PBSC.
Procurement
The surgical procedure of removing an organ, corneas or other tissue(s) from a donor. See Recovery.
Procurement Coordinator
Staff member of the OPO, typically a nurse, paramedic or other medically trained individual who is responsible for evaluating potential donors, discussing donation with family members, medically managing the donor prior to the recovery of organs and tissues and arranging for the donation process (removal and transport of donated organs).

Recipient
In the context of organ and tissue transplantation, this is the patient receiving the donated organ or tissue.
Recovery
In the context of organ and tissue transplantation, refers to the process of removing organs and tissues from the donor.
Rejection (Acute and Chronic)
The body’s way of protecting itself against a foreign invader such as infectious germs. The body sees the transplanted organ or tissue as a foreign invader and attempts to destroy it. Acute rejection happens very quickly; chronic rejection is the slow failure of a donated organ to function.
Required Request
A law passed in 1986 requiring hospitals to have a policy in place requiring all families of suitable donors to be asked to give consent to their loved one’s organs and tissues to be used for transplant. This law is expected to increase the number of donated organs and tissues for transplantation by giving more people the opportunity to donate.
Requester
A healthcare professional who discusses organ donation with surviving family members of a potential donor in order to obtain their consent for donation to occur.

Scientific Registry of Transplant Recipients (SRTR)
In 1984, Congress passed the National Organ Transplant Act (See also National Organ Transplant Act (NOTA) that mandated the establishment of the Organ Procurement and Transplantation Network and SRTR.The purpose of the SRTR is to provide evaluation of clinical information about donors, transplant candidates and recipients, as well as patient and graft survival rates.
Skin
This is the largest organ of the body and has several different functions (e.g., protection from infection, fluid balance, cooling). Skin grafts can save the life a burn victim and can provide severely scarred individuals with a better quality of life.
Status
In the context of transplantation, an indication of the degree of medical urgency for patients awaiting heart or liver transplants.

Tendon
A tough, flexible band of fibrous tissue that connects muscles to bones. The skeletal muscles move the bones for walking, jumping, lifting, etc. by contracting and pulling the bones. The tendon attaches to the muscle and bone and transmits the force of muscle contraction to the bone. Tendons can be transplanted. See Connective Tissue.
Tissue
A body part consisting of similar cells that perform a special function. Examples of tissues that can be transplanted are bones, corneas, heart valves, ligaments, veins, and tendons.
Tissue Typing
A procedure in which the tissues of a prospective donor and recipient are tested to identify the human leukocyte antigens (HLA). See HLA.
Transplantation
The transfer of cells (e.g. stem cells), tissue, or organs from one person to another.
Transplantation, Allogenic (allograft)
Transplantation between genetically different members of the same species (not identical twins).
Transplantation, Autologous
Receiving a transplant of one’s own cell or tissues. This type of transplantation can be used to repair or replace damaged tissue. For example, autologous bone marrow transplantation permits the use of strong cancer therapies that can damage bone marrow. Bone marrow is removed prior to treatment and once the treatment is completed marrow that has not been affected by the therapy is transplanted back into the patient.
Transplant Coordinator
A transplant center staff member responsible for managing the care and progress of potential transplant recipients before, during and after the transplantation.
Transplant Recipient
A person who has received a tissue or organ transplant.

United Network for Organ Sharing (UNOS)
The private, nonprofit membership organization that coordinates the national matching system, the OPTN, under contract to the U.S. Department of Health and Human Services. As OPTN contractor, UNOS has established and continually strives to improve tools, systems and quality processes that support OPTN contract objectives and requirements.

Vascularized Composite Allograft (VCA)
A transplant that is composed of several kinds of tissue such as skin, bone, muscles, blood vessels, nerves, and connective tissue, VCAs include hand, arm, or face transplants.
Vascularized: containing blood vessels or other fluid bearing vessels or ducts.
Composite: made up of various parts or elements.
Allograft: a transplanted organ or tissue from one individual to another of the same species with a different genotype. For example, a transplant from one person to another, but not an identical twin, is an allograft.

Waiting List
A national database maintained by the OPTN of all patients waiting for an organ transplant. It is made up of sublists of patients waiting for specific organs. See Match Run.

Xenograft
An organ or tissue transplanted into a human from a non human animal.
ABDR
The HLA antigens considered for most matching strategies between a potential recipient and a donor.
ABO Blood Type
The classification of human blood into four groups: A, B, AB, and O.
Action Period
Breakthrough Collaborative term. The period of time between Collaborative Learning Sessions when spread teams work within their organization to meet their spread goals. Participants focus on the spread of ideas and processes within their own organization during this period while staying in continuous contact with other participants and faculty.
Active Candidate
A transplant candidate eligible to be considered for organ offers at a given point in time. Some transplant candidates are temporarily classified as “inactive” by their transplant center because they are medically unsuitable for transplantation or need to complete other eligibility requirements.
Acute Rejection
The host recognizes the graft as foreign and mounts an immunological attack on the graft tissues. Most acute rejections occur in the first year.
Ad Hoc Committees
Ad Hoc Committees are designated in the OPTN Bylaws and are made up of transplant professionals, HRSA representatives, transplant patients, living donors, and members of the public. Unlike the OPTN permanent standing Committees, Ad Hoc Committees do not have representatives designated by each of the OPTN regions. See also Committees. (Source: OPTN Bylaws, Appendix M)
Advisory Committee on Organ Transplantation (ACOT)
Formed by HHS in 2000 and comprising members appointed by the Secretary, the ACOT was established to provide additional input regarding HHS oversight of U.S. organ donation and transplantation activity and policies and their affect on patients.
Agonal Phase
When one of the following conditions is met and sustained for a minimum of five (5) minutes:
a. Newborn up to 28 days old, with a systolic blood pressure less than 60 mm Hg, OR
b. 29 days old up to 12 months old, with a systolic blood pressure less than 70 mm Hg, OR
c. 1 year old up to 10 years old, with a systolic blood pressure less than 70 mm Hg, plus 2 times the age of the patient in years, not to exceed 79 mm Hg, OR
d. 11 years or older, with a systolic blood pressure less than 80 mm Hg, OR when the oxygen saturation is less than 80% at any age.
Aim
Breakthrough Collaborative term. An aim for spread is an explicit statement summarizing what the organization seeks to achieve in its spread effort. It is the responsibility of executive leaders to ensure that the spread aim is aligned with the strategic goals of the organization.
Albumin
Albumin is a protein manufactured by the liver. Albumin is used in the PELD calculations as a measure of the severity of liver disease.
The process of determining how organs are distributed. Allocation includes the system of policies and guidelines, which ensure that organs are distributed in an equitable, ethical and medically sound manner.
Allocation Analysis
Review of the allocation of an organ to determine whether the allocation policies were followed. The analysis is performed by the OPTN contractor through the peer review process of the OPTN Membership and Professional Standards Committee.
Allocation Policies
Rules established by the OPTN to guide and regulate organ allocation and distribution in the United States.
An organ or tissue that is transplanted from one person to another of the same species: i.e. human to human. Example: a transplanted kidney.
Alternative Allocation System (AAD System)
Any Board approved system for local organ allocation or distribution that is different from the standard allocation or distribution system for that organ. Alternative allocation systems are designed to increase organ availability and,or organ quality, reduce or address an inequity in allocation unique to the local area, and,or testing a stated hypothesis intended to benefit the allocation,distribution system overall. There are different kinds of Alternative Allocation Systems: a) Alternative local units (ALUs), b) Sharing arrangements and agreements, c) Alternative point assignment protocols, and d) any combination of the components listed here, See also Alternative local unit (ALU), Sharing arrangements and agreements, Alternative point assignment protocols.
Alternative Local Unit (ALU)
A subdivision of an OPO’s Donation Service Area (DSA), approved by the Board to function as a distinct area for organ distribution. See also Alternative Allocation or Distribution System, Regions.
Alternative Point Assignment Protocols
A Board approved modification to the point system criteria defined in Policies 3.5 through 3.11, applicable to members participating in an approved AAD System. Members participating in an approved alternative point assignment protocol are required to a) stay aware of all provisions in OPTN Bylaws and Policies, b) evaluate the continued benefit of the protocol in light of the policy requirements and overall objectives, and c) obtain Committee and Board approval for any modifications to the protocol.
American Association of Blood Banks (AABB)
An international, not for profit association consisting of approximately 1, 800 institutions and 8, 000 individuals, including physicians, scientists, administrators, medical technologists, nurses, researchers, blood donor recruiters and public relations personnel. Members are located in all 50 states and 80 countries. AABB is an OPTN member in the Medical Professional, Scientific Organization category.
American Society for Histocompatibility and Immunogenetics (ASHI)
A national not for profit association of clinical and research professionals including immunologists, geneticists, molecular biologists, transplant physicians and surgeons, pathologists and technologists. ASHI is an OPTN member in the Medical Professional, Scientific Organization category whose president serves on the OPTN Board of Directors.
American Society of Multicultural Health and Transplant Professionals (ASMHTP)
A national not for profit organization whose mission is to promote organ and tissue donation and transplantation among minorities, and serve in a national advisory capacity for research and education on these and other health related issues. ASMHTP is an OPTN member in the Medical Professional, Scientific Organization category.
American Society of Transplant Surgeons (ASTS)
A non profit membership organization of transplant surgeons. ASTS is an OPTN member in the Medical Professional, Scientific Organization category whose president serves on the OPTN Board of Directors.
American Society of Transplantation (AST)
Founded in 1982, AST is a membership organization of more then 2, 200 transplant professionals dedicated to research, education, advocacy and patient care in transplantation. Our goal is to offer a forum for the exchange of knowledge, scientific information and expertise in the field of transplantation. AST is an OPTN member in the Medical Professional, Scientific Organization category whose president serves on the OPTN Board of Directors.
American Transplant Congress (ATC)
The joint annual meeting of the American Society of Transplantation (AST) and the American Society of Transplant Surgeons (ASTS) designed for physicians, surgeons, scientists, nurses, organ procurement personnel, and pharmacists who are interested in the clinical and research aspects of solid organ and tissue transplantation.
Anoxia
Usually refers to lack of oxygen to the brain.
Anti Rejection Drugs (immunosuppressive drugs)
Drugs that are used to prevent and,or treat rejection of a transplanted organ.
A protein molecule produced by the immune system in response to a foreign body, such as virus or a transplanted organ. Since antibodies fight the transplanted organ and try to reject it, recipients are required to take anti rejection (immunosuppressive) drugs.
An antigen is any substance that causes your immune system to produce antibodies against it. An antigen may be a foreign substance from the environment such as chemicals, bacteria, viruses, pollen, or foreign tissues. An antigen may also be formed within the body, as with bacterial toxins.
Antigens determining zero mismatch kidneys (ABDR)
Arterial Blood Gases (ABG)
Test used to measure the pH (acidity), oxygen content, and carbon dioxide content of the blood in order to evaluate respiratory diseases and conditions that affect the lungs.
Ascites
Build up of fluid in the abdomen, usually associated with liver disease.
Associate Councillor
The associate councillor serves as the regional representative on the OPTN membership and Professional Standards Committee, assists the regional councillor with regional activities, provides leadership to the region in the absence of the regional councillor, and participates in all regional meetings. Each region elects an associate councillor who will eventually succeed the regional councilor. (Source: OPTN Bylaws, Appendix M)
Association of Organ Procurement Organizations (AOPO)
A national nonprofit organization of organ procurement organizations. AOPO is an OPTN member in the Medical Professional, Scientific Organization category whose president serves on the OPTN Board of Directors.
At large Committee Member
An at large member or representative represents the general membership or the public on issues of interest or concern. An at large member of a committee may also be appointed to provide a certain type of expertise to the committee. (Source: OPTN Bylaws, Appendix M)
Autograft
A graft of skin or other tissue that is taken from the body of the person to be grafted rather than from another person.
Auxiliary Transplant
A type of liver transplant in which the patient’s liver remains within the body, while another whole or partial liver is transplanted just beneath or adjacent to the recipient’s.
Benchmark
A measurement or standard that serves as a point of reference by which performance of a process is measured.
Benign
Not malignant.
Best Practices
Processes and activities that have been shown in practice to be the most effective.
Biliary atresia
The congenital closure, or near closure, of the bile ducts. The most common indication for liver transplantation in children comprising 60 to 70 percent of all candidates.
A breakdown product of hemoglobin from blood cells, the results of which are used in the MELD and PELD calculations as a measure of the severity of liver disease.
Biopsy
A tissue sample from the body, removed and examined under a microscope to diagnose for disease, determine organ rejection, or assess donated organs or tissues.
Blood Type
One of four groups (A, B, AB or O) into which blood is classified. Blood types are based on differences in molecules (proteins and carbohydrates) on the surface of red blood cells.
The veins, arteries and capillaries through which blood flows in the body. Certain blood vessels can be donated and transplanted.
Board of Directors
The OPTN Board of Directors is the governing body for the OPTN. Directors are elected by the members of the OPTN for two or three year terms. The general composition of the Board of Directors is set forth in the OPTN Final Rule and includes transplant professionals, HRSA representatives, members of the public, living donors, transplant candidates, recipients, and their families. (Source: OPTN Bylaws, Appendix M)
Body Mass Index (BMI)
A measure of body size, calculated as weight in kilograms divided by height in meters squared.
Irreversible cessation of cerebral and brain stem function; characterized by absence of electrical activity in the brain, blood flow to the brain, and brain function as determined by clinical assessment of responses. A brain dead person is dead, although his or her cardiopulmonary functioning may be artificially maintained for some time.
Breakthrough Collaborative
See Organ Donation Breakthrough Collaborative (ODBC), Organ Transplant Breakthrough Collaborative (OTBC).
Business Members
A membership category of the OPTN. A business member is an organization in operation for at least one year that engages in commercial activities with two or more active OPTN transplant hospital, OPO, or histocompatibility laboratory members. (Source: OPTN Bylaws, Appendix M)
C
Cadaveric
Deceased.
Cadaveric Transplant
The transplant of an organ from a deceased donor. The preferred term is Deceased Donor Transplant.
A person registered on the organ transplant waiting list. When an organ is offered on behalf of the candidate, he or she is then referred to as a Potential Transplant Recipient (PTR).
Cardiac
Having to do with, or referring to, the heart.
Cardiac death
Death defined as the irreversible cessation of circulatory and respiratory functions. Death is declared in accordance with hospital policy and applicable state and local statues or regulation.
Cardiac Output (CO)
The volume of blood pumped out of the heart per minute.
Cardiologist
A specialist who is an expert in the diseases of the heart and associated blood vessels.
Cardiomyopathy
A weakening of the heart muscle or change in heart muscle structure that causes varying degrees of reduced heart function.
Censoring
Typically, a statistical term used in survival analysis to indicate an observation in which the outcome of interest has not yet occurred. For example, in a graft survival analysis, a transplant with a functioning graft may be censored at the last follow up date because the graft is still functioning. Mathematically, censored observations are included in the analysis up to the point in time at which they are censored.
Center of Excellence
An insurance term for a medical center that will negotiate a discounted price even if that center is not part of the insurance’s company’s preferred provider network (PPO).
Centers for Medicare & Medicaid Services (CMS)
Formerly titled the Health Care Financing Administration, CMS is an agency of the U.S. Department of Health and Human Services (HHS) responsible for administering the Medicare and Medicaid programs, which provide health care coverage to America’s aged, disabled and indigent populations.
Central Venous Pressure (CVP)
The venous pressure as measured at the right atrium of the heart, obtained by means of a central venous catheter whose distal end is attached to a manometer.
Cerebrovascular accident (CVA)
Also known as a stroke, occurring when there is an occlusion of an arterial vessel going to the brain, or when there is bleeding into the brain.
Change Concept
Breakthrough Collaborative term. A general idea for changing a process. Change concepts are usually at a high level of abstraction, but evoke multiple ideas for specific processes. Establish strong culture of accountability for results, use data driven decision making to determine priorities, and create and maintain visual presence of OPO staff in donor hospitals, are examples of change concepts.
Chief Complaint
The primary symptom that brought the patient to the physician.
Child Turcotte Pugh (CTP) Score
A measurement of liver dysfunction that was used in OPTN liver allocation policy between January 19, 1998, and February 26, 2002. The MELD score has replaced it for allocation purposes, but CTP is still used by some to assess function, and remains a measure for minimum listing eligibility.
Chimerism
When one organism possesses cells with more than one genetic background, as in transplant recipients.
Chronic
Developing slowly and lasting for a long time, possibly the rest of a person’s life. For example: chronic kidney failure.
Chronic Disease Research Group (CDRG)
A division of Minnesota Medical Research Foundation (MMRF). MMRF is the nonprofit research subsidiary of Hennepin Faculty Associates, the academic medical group that staffs Hennepin County Medical Center, a teaching hospital in Minneapolis, Minnesota. The CDRG conducts research primarily focused in the areas of chronic kidney disease and organ transplantation. The MMRF CDRG is responsible for the administration of the Scientific Registry of Transplant Recipients (SRTR).
Chronic obstructive pulmonary disease (COPD)
Chronic obstructive pulmonary disease is a type of lung disease in which the lungs are damaged and results in difficulty breathing. The air passageways in people with COPD have become partly obstructed, impairing airflow in and out of the lungs. The air passageways also become clogged with mucus. A large percentage of COPD cases are caused by cigarette smoking; but there are other causes or contributory factors such as chemicals and other lung irritants.
Chronic Rejection
Slow, continuous immunological attack of the host immune system on the transplanted organ usually resulting in progressive loss of organ function.
A disease of the liver in which normal, healthy tissue is replaced with nonfunctioning fibrous scar tissue and healthy, functioning liver cells are lost; usually occurs when there is a lack of adequate nutrition, an infection or damage caused by alcohol abuse.
Clamp time
The time at which the flow of blood to a particular organ has been clamped off during a procurement.
Clinical Triggers
Criteria for imminent death mutually established by the hospital and OPO which prompt the hospital to make a timely notification to the OPO.
Cockcroft Gault Formula
A calculation used as a measure of kidney function by estimating creatinine clearance. It is calculated from a patient’s serum creatinine, age, weight, and gender. For males: (140 age)*weight,(72*creatinine), where age is measured in years, weight is measured in kilograms and creatinine is measured in mg,dL. The same formula multiplied by 0.85 is used to estimate creatinine clearance for females.
Cohort
A group of individuals sharing one or more characteristics that are observed during a designated time period.
Cold Ischemia Time (CIT)
The amount of time an organ spends being preserved after recovery from the donor.
Collaborative
A time limited effort (usually 6 to 12 months) of multiple organizations that come together with faculty to learn about and to create improved processes in a specific topic area. The expectation is that the teams share expertise and data with each other, thus œeveryone learns, everyone teaches.
College of American Pathologists (CAP)
The principal organization of board certified pathologists organized to serve and represent the interest of patients, pathologist, and the public by fostering excellence in the practice of pathology and laboratory medicine.
Committee Sponsored Alternative System
A Board approved Alternative Allocation,Distribution System developed by one or more OPTN committees that seeks to address concerns particular to multiple local areas but not nationally, or for which consensus to modify the standard policy for the nation as a whole has not been achieved. See also Alternative Allocation or Distribution System.
Committees
The OPTN currently maintains approximately 20 standing committees, a fluctuating number of ad hoc committees (established by the President to address a specific issue as it arises), subcommittees and joint subcommittees (created and maintained by standing committees). Committees are comprised of professionals, at least one Patient, Public representative, Minority Affairs Committee Representative, Pediatric Committee Representative, and one or more SRTR representatives. Permanent Standing Committees also include representatives form each of the 11 Regions. HRSA’s OPTN Project Officer and Director of DoT, or their designees, serve as ex officio non voting members of all committees. Each committee is provided administrative, policy, analytic, clinical and technical support by one or more committee liaisons from the UNOS staff.
Compliance
1) Adherence of patients to medical advice and instructions, especially immunosuppressive drug schedules. 2) Adherence of OPTN members to the policies and bylaws of the OPTN.
Computerized Axial Tomography (CT or CAT Scan)
A series of detailed pictures of areas inside the body created by a computer linked x ray machine.
Confidence Interval
In statistical analysis, sampling techniques are used to provide an estimate of some aspect of a particular population, for example the average age. This avoids having to take a census of the entire population. Because the estimate is based on a sample and not the entire population, the estimate is subject to error. A confidence interval provides a range of values about the estimate within which the true value (the value of the parameter based on the entire population) lies. The smaller the confidence interval, the more precise the statistical estimate.
Conflict of Interest
A situation in which a board or committee member, employer or institution might benefit from his or her actions as an OPTN volunteer. When a board or committee member has a personal or institutional interest in the outcome of a matter, the member is legally required to disclose the conflict at the beginning of the discussion, and abstain from voting on the matter. Board and committee members are required to sign a conflict of interest agreement when they begin their term of service to the OPTN.
Congenital
Describes a disease or condition with which someone is born.
Congestive heart failure (CHF)
Any condition that causes the heart to lose its pumping ability to pump blood efficiently. Fluid backs up in the lungs and may also accumulate in the legs.
Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA)
Federal health coverage protection that requires employers of 20 or more employees to provide employees, and their dependants, the right to continue health insurance benefits when a qualifying event occurs. COBRA lasts for 18 months. OBRA is the federal law that allows an employee to continue health insurance benefits after COBRA, if he,she has elected COBRA coverage due to a Social Security approved disability. OBRA is an 11 month extension of COBRA. See also Omnibus Budget Reconciliation Act (OBRA).
Continuous ambulatory peritoneal dialysis (CAPD)
Continuous dialysis procedure involving a dialysis solution being emptied into the patient’s abdominal cavity. This solution removes waste products from the blood, allowing the patient greater freedom of movement.
Conversion, conversion rate
The percentage of times a death meeting eligible criteria (eligible death) becomes an actual donor.
Coronary artery disease
The coronary arteries supply blood (and oxygen) to the heart muscle. When arteries are partially or completely obstructed, the blood and oxygen supply to the heart muscle is impaired. The most common cause of a heart attack.
Corticosteroid
A synthetic hormone used to reduce the body’s normal immune reaction to infection and foreign tissue, such as a transplanted organ. Prednisone is a corticosteroid.
Creatinine
Found in the blood, it is a waste by product of muscle; creatinine level in the blood is one of the key measures of kidney function.
Criteria (Medical Criteria)
A set of clinical or biologic standards or conditions that must be met.
Critical Pathway for the Organ Donor
” A “”care map”” of an organ donor’s treatment plan designed to help critical care staff and procurement coordinators understand, collaborate, and follow the steps required for effective donor management.”
Crossmatch
” A blood test to determine compatibility between donor and recipient. A positive crossmatch indicates incompatibility. If the crossmatch is “”negative, “” then the transplant may proceed. Crossmatching is performed for many organ transplants.”
Culture and Sensitivity (C+S)
Culture and Sensitivities tests are done to determine which bacteria cause an infection and the best antibiotic to treat the infection.
A drug used to prevent rejection of the transplanted organ by suppressing the body’s defense system. Considered an immunosuppressant.
Cyst
An encapsulated collection of fluid.
Cystic Fibrosis (CF)
A chronic, progressive, and frequently fatal inherited disease of the body’s mucus glands.
Cytomegalovirus (CMV)
A herpes virus that usually causes a mild infection. Important because it can become deadly in an immunocompromised transplant recipient. Deceased donors are screened for the presence of CMV antibodies.
Data Advisory Committee (DAC)
Dissolved upon effective date of the 2005 OPTN contract, this committee was charged with overseeing all recommendations to the Board of Directors regarding specifications for collecting data on the full continuum of events including pre and post transplant events. The DAC also had primary responsibility for recommending to the Board data release policies, data collection procedures, and specific OPTN database elements necessary for data analysis and research functions in support of the OPTN and the Scientific Registry.
Data Working Group (DWG)
Dissolved upon effective date of the 2005 OPTN contract, this group was mutually operated by the OPTN and SRTR contractors, and comprised representatives from both organizations as well as members of the transplant community and government staff. The DWG was charged with in depth review and consideration of needed revisions (additions and deletions) to the OPTN database in order to comply with contract and regulatory requirements and to further solid organ transplantation research. The recommendations of the DWG were presented to the Data Advisory Committee (DAC) for consideration.
Deaths per Day while Waiting
The calculation of the average number of patient deaths per day while waiting accounts for the candidates removed from the list upon death, as well as former candidates found to have died within 30 days of leaving the list for personal or medical reasons, excluding deaths after a removal for transplant (as described in Wait List Registrations) during the last full calendar year.
Death Rate
The percentage of deaths observed in a group of patients, also referred to as the rate of mortality. In statistics, the death rate is calculated as the number of patient deaths observed per 1, 000 patient years. Patient years are calculated based on the actual amount of follow up time after transplant that recipients are studied.
An individual from whom at least one solid organ is recovered or the purpose of transplantation after suffering brain death or cardiac death.
Deceased Donor Registration Form (DDR)
The form submitted by the OPO when reporting a new donor to the OPTN. The form contains information on donor demographics, cause of death, procurement and consent, current clinical measures, medical and social history and organ recovery information.
Deceased Donor Transplant
The transplant of an organ from a deceased donor.
Delayed Graft Function (DGF)
A condition in which the transplanted organ does not function properly after the transplant. Many kidneys have a delay before they begin to function adequately. Kidneys can sometimes take as long as 3 to 4 weeks to achieve adequate function. When this occurs, a kidney recipient needs dialysis until the kidney starts to function.
Department of Health and Human Services (DHHS or HHS)
The department of the federal government responsible for health related programs and issues.
Diabetes
A disease in which the pancreas does not manufacture an adequate amount of insulin. As a result, the level of sugar in the blood is too high. A leading factor in heart and kidney disease.
A mechanical process designed to partially perform kidney functions, including correcting the balance of fluids and chemicals in the body and removing wastes. See Hemodialysis and Peritoneal Dialysis.
Diastolic Blood Pressure
The bottom number in the blood pressure measurement (80 in a blood presure of 120,80), indicating the pressure in the arteries when the heart is at rest.
Direct Offer
An organ offer that is made by a host OPO directly to another OPO or a transplant center for a specific recipient.
Directed Donation
The donation of an organ to a specifically identified recipient. These instructions are given by a donor or donor family member.
Division of Transplantation (DoT)
DoT is the office within HHS,HRSA whose principal responsibilities include the oversight of management of the Organ Procurement and Transplantation Network (OPTN), the Scientific Registry of Transplant Recipients (SRTR) and the National Marrow Donar Program (NMDP) contracts; public education to increase organ and tissue donation; and technical assistance to organ procurement organizations (OPOs).
A procedure in which an organ is removed from one transplant candidate and immediately transplanted into a second patient, with the first patient receiving a new organ from a deceased donor.
Donate Life America
Donate Life America (formerly the Coalition on Donation) was founded by the transplant community in 1992 to educate the public about organ, eye and tissue donation and avoid duplication of effort. Its mission is to drive individuals, organizations and communities to increase the number of designated organ, eye and tissue donors who save and heal lives. DLA’s vision is a nation that embraces organ, eye and tissue donation as a fundamental human responsibility.
Donate Life America assists in mobilizing the transplant community to educate the American public on the need for organ, eye and tissue donation and motivating the public to make an actionable donor designation. Donate Life America publishes brochures, program kits and other materials; provides technical assistance and referral services; coordinates the National Campaign for Organ, Eye and Tissue Donation and identifies measurable best practices. It is comprised of national organizational members and state teams across the United States that coordinate donation related activities at the grassroots level.
Donate Life, Done Vida
Since 2000, Donate Life and its Spanish translation Done Vida have been the primary slogans and service mark logos of Donate Life America, promoting donation as a forthright, life affirming action. Donate Life America encourages the widest possible use of its logos and materials in order to provide a sustained, unified national message about donation. Guidelines and policies are in place to ensure consistency, appropriate use, and the integrity of these national logos and materials.
Donation after Circulatory Death (DCD)
Recovery of organs and or tissues from a donor whose heart has irreversibly stopped beating, previously referred to as non heart beating or asystolic donation.
Donation Rate
In statistics, the number of actual donors where at least one organ is recovered for the purpose of transplant. One method of computing donation rate is as a percentage of a specified population (e.g., eligible deaths divided by donors recovered).
Donation Service Area (DSA)
The geographic area designated by CMS that is served by one organ procurement organization (OPO), one or more transplant centers, and one or more donor hospitals. Formerly referred to as Local Service Area or OPO Service Area.
Donor
Someone from whom at least one organ or tissue is recovered for the purpose of transplantation. A deceased donor is a patient who has been declared dead using either brain death or cardiac death criteria, from whom at least onevascularized solid organ is recovered for the purpose of organ transplantation. A living donor is one who donates an organ or segment of an organ for the intent of transplantation.
Donor Histocompatility Form (DH)
The form submitted by the histocompatibility laboratory containing HLA information of a deceased donor when at least one organ is recovered with the intent to transplant, or a living donor’s HLA typing and haplotype information for living donors.
Donor Management
The process and critical pathways used to medically care for donors in order to keep their organs viable until organ recovery can occur.
Donor Pool
A group of people eligible to donate an organ.
Available 24 hours a day, seven days a week, online registries provide authorized professionals access to a confidential database of registered organ donors, allowing easy and quick confirmation of an individual’s consent to organ donation. All registries are voluntary and some are affiliated with the local motor vehicle bureau, while others are independently operated or OPO based.
DonorNet® 2007
A redesign of the original DonorNet application, a component of the UNetsm system. DonorNet focuses on the registration of deceased donors, organ matching, organ offers and placement. The 2007 redesign enables OPOs to input and uniformly display donor data, to make multiple simultaneous electronic organ offers quickly and efficiently and to present donor information in a consistent manner to transplant centers. This new organ offer process focuses priority on quickly registering the organ refusals so the donor coordinator can focus limited time and resources on those transplant centers that have indicated interest in the organ. Effective January 1, 2007.
Early Adopter
Breakthrough Collaborative term. In the improvement process, the opinion leader within the organization who is willing to try new ideas (introduced by innovators) and whose positive results attract others in the organization to adopt the successful changes. [Rogers E. Diffusion of Innovations. 4th ed. New York, N.Y.: The Free Press; 1995].
Early Majority,Late Majority
The individuals in the organization who will adopt a change only after it is tested by an early adopter (early majority) or after the majority of the organization is already using the change (late majority). [Rogers E. Diffusion of Innovations. 4th ed. New York, N.Y.: The Free Press; 1995].
Effective Date of Contract (EDOC)
The date when a contract goes into effect. The EDOC for the current OPTN contract is September 30, 2005.
Effective Request Process
A process developed collaboratively between the hospital and the OPO that culminates in the request to the family using tested and proven methodology.
Electronic Organ Placement Working Group
Established in 2005 by the Operations Committee to guide the development and implementation of the DonorNet® redesign, and to establish direction regarding a number of specific technical, procedural and policy questions and concerns related to electronic notification and organ placement. The group includes representatives from OPOs, Transplant Centers and Histocompatibility Labs, as well as AST, ASTS, AOPO and NATCO.
Eligible Death
For reporting purposes of DSA performance assessments, an eligible death for deceased organ donation is defined as the death of a patient who meets all the following characteristics:
Is 75 years old or less
Is legally declared dead by neurologic criteria according to state or local law
Has body weight of 5 kg or greater
Has a body mass index (BMI) of 50 kg,m2 or less
Has at least one kidney, liver, heart or lung that is deemed to meet the eligible data definition as defined below:
The kidney would initially meet the eligible data definition unless the donor meets any of the following criteria:
Greater than 70 years old
Age 50 69 years with history of type 1 diabetes for more than 20 years
Polycystic kidney disease
Glomerulosclerosis greater than or equal to 20% by kidney biopsy
Terminal serum creatinine greater than 4.0 mg,dL
Chronic renal failure
No urine output for 24 hours or longer
The liver would initially meet the eligible data definition unless the donor meets any of the following criteria:
Terminal total bilirubin greater than or equal to 4 mg,dL
Macrosteatosis greater than or equal to 50% or fibrosis greater than or equal to stage II
Fulminant hepatic failure
Terminal AST,ALT greater than 700 U,L
The heart would initially meet the eligible data definition unless the donor meets any of the following criteria:
Greater than 60 years old
45 years old or older with a history of 10 or more years of HTN or 10 or more years of type 1 diabetes
History of coronary artery bypass graft (CABG)
History of coronary stent,intervention
Current or past medical history of myocardial infarction (MI)
Severe vessel diagnosis as supported by cardiac catheterization (that is more than 50 percent occlusion or 2+ vessel disease)
Acute myocarditis or endocarditis, or both
Heart failure due to cardiomyopathy
Internal defibrillator or pacemaker
Moderate to severe single valve or 2 valve disease documented by echo or cardiac catheterization, or previous valve repair
Serial echo results showing severe global hypokinesis
Myxoma
Congenital defects (surgically corrected or not)
The lung would initially meet the eligible data definition unless the donor meets any of the following criteria:
Greater than 65 years old
Diagnosed with COPD
Terminal PaO2,FiO2 less than 250 mmHg
Asthma (with daily prescription)
Asthma is the cause of death
Pulmonary fibrosis
Previous lobectomy
Multiple blebs documented on computed axial tomography (CAT) scan
Pneumonia as indicated on computed tomography (CT), X ray, bronchoscopy, or cultures
Bilateral severe pulmonary contusions as per CT
If a deceased patient meets the above criteria they would be classified as an eligible death unless the donor meets any of the following criteria:
The donor goes to the operating room with intent to recover organs for transplant and all organs are deemed not medically suitable for transplant
The donor exhibits any of the following active infections (with a specific diagnosis):
Bacterial: tuberculosis, gangrenous bowel or perforated bowel or intra abdominal sepsis
Viral: HIV infection by serologic or molecular detection, rabies, reactive hepatitis B surface antigen, retroviral infections including viral encephalitis or meningitis, active herpes simplex, varicella zoster, or cytomegalovirus viremia or pneumonia, acute epstein barr virus (mononucleosis), West Nile virus infection, or SARS. However, an HIV positive organ procured for transplantation into an HIV positive recipient at a transplant hospital that meets the requirements in Policy 15.7: Open Variance for the Recovery and Transplantation of Organs from HIV Positive Donors would still meet the requirements of an eligible death, according to the OPTN Final Rule.
Fungal: active infection with cryptococcus, aspergillus, histoplasma, coccidioides, active candidemia or invasive yeast infection
Parasites: active infection with trypanosoma cruzi (Chagas’), Leishmania, strongyloides, or malaria (plasmodium sp.)
Prion: Creutzfeldt Jacob disease
The following are general exclusions:
Aplastic anemia, agranulocytosis
Current malignant neoplasms, except non melanoma skin cancers such as basal cell and squamous cell cancer and primary CNS tumors without evident metastatic disease
Previous malignant neoplasms with current evident metastatic disease
A history of melanoma
Hematologic malignancies: leukemia, Hodgkin’s disease, lymphoma, multiple myeloma
Active fungal, parasitic, viral, or bacterial meningitis or encephalitis
No discernible cause of death
Emphysema
A Chronic Obstructive Pulmonary Disease (COPD) in which an abnormal accumulation of air in tissues or organs, especially of the lungs which results in air trapping within the lungs.
En Bloc (or En Bloc)
The transplant of both kidneys or both lungs from a single donor into one recipient, where both organs are recovered and transplanted as a single unit.
Serious brain function abnormalities experienced by some patients with advanced liver disease (and other diseases). Symptoms most commonly include confusion, disorientation, insomnia, and may progress to a coma.
End Stage Liver Disease (ESLD)
Irreversible liver failure that requires transplantation as hepatic replacement therapy.
A disease that leads to the permanent failure of an organ.
End Stage Renal Disease (ESRD) Program
Part of the Medicare program that provides medical coverage to people with end stage kidney disease or renal failure to help pay for dialysis or transplantation.
Epidemiology
The study of incidence, distribution and control of disease in populations.
Epstein Barr Virus (EBV)
A common virus that remains dormant in most people, but may be a problem in transplant recipients. It has been associated with certain cancers, including Burkitt’s lymphoma, immunoblastic lymphoma, and nasopharyngeal carcinoma.
Ethics
Medical Ethics is the discipline of evaluating the merits, risks, and social concerns of activities in the field of medicine. Principles include:
A practitioner should act in the best interest of the patient (Salus aegroti suprema lex)
First, do no harm (primum non nocere), from the Hippocratic Oath
Autonomy is a patient’s right to choose or refuse treatment (Voluntas aegroti suprema lex)
Justice concerns the distribution of scarce health resources, and the decision of who gets what treatment
Dignity the patient (and the person treating the patient) have the right to dignity
Truthfulness patients should not be lied to, and deserves to know the whole truth about their illness and treatment
Principles such as these do not give answers as to how to handle a particular situation, but guide doctors on what principles ought to apply to actual circumstances. See also Hippocratic Oath, Justice and Utility, Statement of Principles and Objectives of Equitable Organ Allocation.
Ethics Committee
The OPTN standing committee charged with considering ethical issues related to the process of organ procurement, distribution and transplantation. These issues include social impact, the relationship of cost to benefit, impact on patients and their families as well as society at large, legal issues and related public policy, and access to transplantation. The committee will consider the broader implications presented by such issues and will not consider individual patient’s issues or disputes.
Ethnicity
For OPTN data purposes, the use of categories such as White; Black or African American; Hispanic; Asian, American Indian, Alaskan Native; Pacific Islander; Multiracial.
Evaluation Plan
The detailed document describing procedures related to how UNOS as the OPTN contractor assesses OPTN member compliance with OPTN policies and by laws.
Executive Committee
The standing OPTN Committee composed of no more than 12 Directors: President, Immediate Past President, Vice President, Vice President of Patient and Donor Affairs, Secretary, Treasurer, and if not represented by the individuals holding such offices, at least one of each of the following: an organ procurement organization representative, a transplant coordinator representative, a histocompatibility representative, and a general public, patient or voluntary health organization representative. HRSA’s Director of the Division of Transplantation and the OPTN Project Officer or their designees participate ex officio. The UNOS Executive Director attends all meetings of the OPTN Executive Committee but does not vote. The Executive Committee meetings take place immediately prior to both Board of Directors meetings, and may also take place at other times as the need arises. It is authorized to:
Act conditionally on behalf of the Board
Review time sensitive issues that require Board action, including the proposal of solutions to conflicts among recommendations of various standing and ad hoc committees
Make recommendations to the Board on any issue
Provide guidance on the interpretation of prior Board actions, and,or temporarily suspend or modify implementation of recent policy or by law changes that are not achieving their intended effect
Expanded Criteria Donor (ECD) Kidney
A kidney donated for transplantation from any brain dead donor over the age of 60 years; or from a donor over the age of 50 years with two of the following: a history of hypertension, the most recent serum creatinine greater than or equal to 1.5 mg,dl, or death resulting from a cerebral vascular accident (stroke). This definition applies to the allocation of deceased donor kidneys.
Extra Corporeal Membrane Oxygenation (ECMO)
A system to augment alveolar ventilation by gaseous diffusion of oxygen into blood outside the patient’s body.
Extrarenal
Outside of, beyond the kidney.
Finance Committee
The OPTN standing committee chaired by the Treasurer. Primarily responsible for the organization’s financial operations including approving the annual OPTN budget and recommending the OPTN member registration fee to the OPTN Board of Directors at the beginning of every fiscal year; meeting with the OPTN’s compliance auditors annually to review the OMB Circular A 133 audit to ensure that UNOS is compliant with all OPTN contract and Federal regulation requirements; and monitoring OPTN member activity regarding timely payment of OPTN member registration invoices as well as the cash reserve levels of the OPTN.
Legislation that allows donor designation to be indicated on a driver’s license or an official signed donor document, which gives hospitals legal authority to proceed with organ procurement without consent from the family.
First Things First
Breakthrough Collaborative term describing priorities addressed by successful teams to assure that change is deep enough into the system to be sustained:
Create OPO Hospital Presence,In House Coordinator
Analyze and Apply Current Hospital Specific Data
Identify Physician,Clinician Champions
Conduct Real Time Death Record Reviews
Establish Clinical Triggers
Hold Donation Team Huddles
Identify and Utilize Effective Requesters in Ever Case
Conduct After Action Reviews
Food and Drug Administration (FDA)
An agency within the Department of Health and Human Services responsible for protecting the public health by assuring the safety, efficacy, and security of human and veterinary drugs, biological products, medical devices, food supplies, cosmetics, and products that emit radiation. The FDA is also responsible for advancing the public health by helping to speed innovations that make medicines and foods more effective, safer, and more affordable; and helping the public get the accurate, science based information they need to use medicines and foods to improve their health.
Forced Expiratory Volume in One Second (FEV1)
A standard measure of lung function which measures the volume of air one breathes out in one second after taking a deep breath. It is also a predictor of mortality in lung patients.
Forced Vital Capacity (FVC)
The maximum volume of gas that can be exhaled after taking a maximum inhalation. A measure of pulmonary function.
Freedom of Information Act (FOIA)
A federal law giving any person the right to obtain federal agency records unless the records (or part of the records) are protected from disclosure by any of the nine exemptions contained in the law.
Fulminant
A medical event that occurs very quickly with an acute onset, as in fulminant liver failure. Usually occurs over days and not weeks.
Fulminant Hepatic Failure (FHF)
Acute liver failure with no preexisting liver disease.
Functional Status
A way to measure the effects that lung disease may have on a person’s ability to perform routine daily tasks. Functional status is used in the Lung Allocation Score.
Fungal Disease
Infection that usualy occurs in patients during treatment with steroids or immunosuppressants. Examples of fungi include candidas, aspergillus and histoplasmosis, which tend to affect the whole body and are not localized infections.
Geographic units for organ distribution
Donated organs are first offered to transplant candidates within the Donation Service Area of the host OPO (with the exception of perfectly matched donor kidneys). If the organs are not acceptable for use in the transplant centers in the host OPO’s DSA, they are offered transplant centers in the Region, then to all centers nationwide. DSA assignations are determined by CMS.
Glomerular Filtration Rate (GFR)
A measure used to determine kidney function, the GFR indicates the kidney’s ability to filter and remove waste products.
Glomerulonephritis
A disease or condition resulting in inflammation of the filtering cells of the kidney.
Haplotype
A set of closely linked genes usually inherited together as a unit, observed to determine genetic compatibility between donor and recipient.
Health Insurance Portability and Accountability Act (HIPAA)
Passed in 1996, HIPAA requires employers to provide health insurance coverage to employees who lose or change jobs, and includes an administrative simplification section which deals with the standardization of healthcare related information systems including data security, protection of patient confidentiality and privacy. The Act mandates standardized formats for all patient health, administrative, and financial data; unique identifiers (ID numbers) for each healthcare entity, including individuals, employers, health plans and health care providers; and security mechanisms to ensure confidentiality and data integrity for any information that identifies an individual.
Health Maintenance Organization (HMO)
An insurance plan encompassing a network of health care providers including doctors, hospitals, pharmacies, and other medical facilities and professionals where an individual and his,her employer pay a fixed monthly fee for services, regardless of the level of care.
Health Resources and Services Administration (HRSA)
The primary healthcare agency of the federal government that deals with health access issues. Its role is to make essential primary care service available to poor, uninsured and geographically underserved populations. HRSA is a division of the U.S. Department of Health and Human Services (HHS). The Division of Transplantation (DoT) is a component of HRSA’s Healthcare Systems Bureau (HSB). HRSA provides funding for the OPTN contract.
Hematocrit (Hct)
The measure of the volume of red blood cells as percentage of the total blood volume. Normal in males is 43 to 49 percent, in females 37 to 43 percent.
A treatment for kidney failure where the patient’s blood is passed through a filtering membrane to remove excess fluid and wastes.
Hemoglobin (Hgb)
The protein in red blood cells that carries oxygen.
Hepatic
Having to do with, or referring to, the liver.
Associated with hepatic failure from any cause, attributed to the passage of toxic nitrogenous substances from the portal to the systemic circulation; cerebral manifestations may include coma.
Hepatitis
A viral infection or non specific inflammation of the liver that can lead to liver failure. Hepatitis C is the leading cause of liver failure that leads to transplantation.
Hepatitis B Virus (HBV)
Formerly called serum hepatitis, it is caused by the hepatitis B virus (HBV). About 10 percent of cases progress to chronic hepatitis. It is spread through intravenous drug use, through sexual contact with infected individuals, through exposure to infected body fluids, and vertically from mother to child. Common symptoms include abdominal pain, fatigue, fever, jaundice, and elevated liver enzymes. A vaccine against HBV is available.
Hepatitis C Virus (HCV)
A form of hepatitis caused by the hepatitis C virus (HCV), previously known as non A, non B hepatitis. Most infections are due to injection drug use with contaminated needles. Blood transfusion associated infections are rarer now than in the past due to improved blood donor screening. The CDC estimates 4.1 million (1.6 percent) Americans have been infected with HCV, of whom 3.2 million are chronically infected. Of the people who have chronic hepatitis C, 10 to 20 percent eventually develop cirrhosis and one to five percent develop hepatocellular carcinoma.
Hepatologist
A specialist who is an expert in the diagnosis and treatment of liver diseases.
Heterotopic Transplant
Transplantation of an organ to a site different from where it would ordinarily be located on the recipient’s body.
High Blood Pressure (hypertension) (HTN)
When the force of the blood pushing against the walls of the blood vessels is higher than normal because the blood vessels have either become less elastic or have gotten smaller. High blood pressure causes the heart to pump harder to move blood through the body. High blood pressure can cause kidney failure and heart disease if not treated.
High Leverage Changes
Breakthrough Collaborative term. Improvements which have a direct relationship to outcomes,results and are a combination of change package concepts. Example: Six actions to create a high performance, organ donation system:
Advocate Organ Donation As The Mission
Involve Senior Leadership To Get Results
Deploy A Self Organizing OPO,Hospital Team
Practice Early Referral, Rapid Response
Master Effective Requesting
Implement Donation After Cardiac Death
Hippocratic Oath
A traditional oath of physicians, who pledge to practice medicine according to the ideals and moral principles put forth by Hippocrates: to treat the ill to the best of one’s ability, to preserve a patient’s privacy, to teach the secrets of medicine to the next generation. Ethics, Justice, Statement of Principles and Objectives of Equitable Organ Allocation, Utility.
” The examination of human leukocyte antigens (HLA) in a patient, often referred to as “”tissue typing”” or “”genetic matching.”” Tissue typing is routinely performed for all donors and recipients in kidney and pancreas transplantation to help match the donor with the most suitable recipients to help decrease the likelihood of rejecting the transplanted organ. See Human Leukocyte Antigen System (HLA System).”
Histocompatibility Antigens
Molecules, also known as Human Leukocyte Antigens (HLA), found on all nucleated cells in the body. Inherited from one’ parents, histocompatibility antigens help the immune system to recognize whether or not a cell is foreign to the body. These antigens are used to help determine the compatibility of kidneys and pancreata for transplantation from one individual to another. See Human Leukocyte Antigen System (HLA System).
Histocompatibility Committee
The standing OPTN committee charged with considering issues relating to donor and recipient histocompatibility, organ alocation, tissue typing consistency and histocompatibility laboratory qualifications, including cost to benefit ratio and impact on organ transplantation. The committee will consider the broad implications of such issues and will deal with specific individual issues or situations.
HLA Mismatch (MM)
In transplantation, a mismatch indicates the donor has at least one HLA A, HLA B, or HLA DR antigen that is not present in the recipient.
Host OPO
The OPO that identifies a potential donor and assumes responsibility for donor management, procurement and organ allocation.
Huddle
Breakthrough Collaborative term. A structured multi disciplinary meeting of hospital and OPO staff used to coordinate the Effective Request Process and to meet the unique needs of each eligible donor’s family.
Human Immunodeficiency Virus (HIV)
The virus destroys cells in the immune system, which makes it difficult for the body to fight off infections; toxins, or poisons; and diseases. HIV causes AIDS, a late stage of the virus characterized by serious infections, malignancies and neurologic dysfunctions.
Human Leukocyte Antigen (HLA)
Molecules found on cells in the body that are inherited genetically. In donor recipient matching, HLAs help to determine compatibility between a donor and recipients.
Human Leukocyte Antigen System (HLA System)
The system for using HLAs help to determine the compatibility of kidneys and pancreata for transplantation from one individual to another. Generally speaking, the smaller the number of HLA mismatches the better the compatibility between donor organ and recipient.
Hypertension
High blood pressure. Occurs when the force of the blood pushing against the walls of the blood vessels is higher than normal because the blood vessels have either become less elastic or have gotten smaller. Hypertension causes the heart to pump harder to move blood through the body. It can cause kidney failure and heart disease if not treated.
Of unknown cause.
Idiopathic cardiomyopathy
Disease of the heart muscle with no known cause leading to a weakened and often enlarged heart; one of the principal reasons for heart transplantation.
Idiopathic pulmonary fibrosis
A chronic progressive interstitial lung disease of unknown cause, characterized by inflammation and fibrosis of the lung parenchyma.
Imminent neurological death
Imminent Neurological Death is defined as the death of a patient who meets both of the following criteria:
Meets the eligible death definition with the exception that the patient has not been declared legally dead by neurologic criteria according to current standards of accepted medical practice and state or local law.
Has a severe neurological injury requiring ventilator support who, upon clinical evaluation documented in the OPO record or donor hospital chart, has no observed spontaneous breathing and is lacking at least two of the additional brain stem reflexes that follow:
Pupillary reaction
Response to iced caloric
Gag Reflex
Cough Reflex
Corneal Reflex
Doll’s eyes reflex
Response to painful stimuli
A patient who is unable to be assessed neurologically due to administration of sedation or hypothermia protocol does not meet the definition of an imminent neurological death.
The body’s natural defense against foreign objects or organisms, such as bacteria, viruses or transplanted organs or tissue.
Immune System
The organs, tissues, cells and cell products in your body that work to find and neutralize foreign substances including bacteria, viruses and transplanted organs.
Immunogenicity
A measure of an antigen’s ability to provoke an immune response.
Immunosuppression
Prevention or inhibition of the immune system to respond to foreign substances in the body. Medications often used to prevent a recipient’s immune system from rejecting a transplanted organ or tissue include prednisone, methylprednisolone, azathioprine, mycophenolate mofetil, cyclosporine, tacrolimus, and sirolimus, among others.
Immunosuppressive
Relating to the weakening or reducing of your immune system’s responses to foreign material; immunosuppressive drugs reduce your immune system’s ability to reject a transplanted organ.
Import Match Run
Generated from access to a non local donor, an import match run is a local record of an OPO’s potential recipients for a particular organ (listed in the order which local allocation offers should be made). The potential recipients are sorted according to the relationship between distinct candidate and donor information.
Improvement Leader
Breakthrough Collaborative term. The Improvement Leader organizes and drives the spread project in their donation service area.
Induction Therapy
Medications given for a short finite period in the perioperative period for the purpose of preventing acute rejection. Though the drugs may be continued after discharge for the first 30 days after transplant, it will not be used long term for immunosuppressive maintenance.
Infection
A condition that occurs when a foreign substance, such as bacteria, enters your body, causing your immune system to fight the intruder. All transplant recipients can get infections more easily because their immune systems are suppressed. It is more difficult for them to recover from infection (such as urinary tract infections, colds and the flu).
Inflammation
The swelling, heat and redness produced when the body is injured or infected.
A person’s voluntary agreement, based upon adequate knowledge and understanding of relevant information, to participate in research or to undergo a diagnostic, therapeutic, or preventive procedure.
Innovator
In the improvement process, the person(s) who goes outside the organization to find new ideas. This person may not be well connected to others in the social system. [Rogers E. Diffusion of Innovations. 4th ed. New York, N.Y.: The Free Press; 1995. Note: Importance of change agents; agenda setting in organizations]Inotropes
Medications that increase the force of contraction of the heart muscle.
Institutional Review Board (IRB)
A committee of physicians, statisticians, researchers, community advocates, and others that ensures that a clinical trial is ethical and that the rights of study participants are protected.
Intended Candidate
The candidate for whom an organ was accepted.
International Normalized Ratio (INR)
A measure of a patient’s coagulation (clotting) system. INR is used in the MELD and PELD calculations.
International Organization for Standardization (ISO)
A non governmental non profit organization whose mission is to promote the development of standardization and related activities in the world with a view to facilitating the international exchange of goods and services, and to developing cooperation in the spheres of intellectual, scientific, technological and economic activity.
International Society for Heart and Lung Transplantation (ISHLT)
An international not for profit organization dedicated to the advancement of the science and treatment of end stage heart and lung diseases, comprising more than 2, 200 professionals, ISHLT is an OPTN member in the Medical Professional,Scientific Organization category.
Investigational
A drug or procedure that is not yet Federal Drug Administration (FDA) approved for marketing.
ISO 9001:2008
The quality standards certification obtained by UNOS from the International Organization for Standardization (ISO) to ensure optimal quality of all information technology activities and processes including Organ Center practices, user training and support services, and all processes associated data collection, validation, monitoring and reporting, policy implementation.

 Accreditation of Healthcare Organizations (JCAHO)
Oganization that evaluates and accredits health care organizations and programs in the United States including hospitals, nursing homes and home health agencies. The commission establishes guidelines for the operation of hospitals and other health facilities and conducts survey and accreditation programs.
Kidney Allocation Review Subcommittee (KARS)
A subcommittee of the Kidney,Pancreas Allocation Committee, created in 2004 to conduct a comprehensive review of the national system for allocating deceased donor kidneys, including a series of public hearings with expert testimony and open discussion focused on specific aspects of the national kidney allocation system and opportunities for assessment and,or improvement.
Kidney and Pancreas Simulated Allocation Model (KPSAM)
A computer model that simulates the OPTN kidney and kidney pancreas allocation systems for the assessment of the impact of various kidney policies.
Kidney Transplantation Committee
The standing OPTN committee charged with considering medical, scientific and ethical aspects related to kidney procurement, allocation and sharing. The committee considers both the broad implications and the specific member situations relating to kidney issues and policies.
A pair of organs that remove wastes from the body through the production of urine. All of the blood in the body passes through the kidneys about 20 times every hour. Kidneys can be donated from living and deceased donors and transplanted into patients with kidney failure.
Learning Session
Breakthrough Collaborative term. An intensive two day meeting designed to focus on a set of key components to support effective spread, build learning relationships with other day to day spread agents, and support participants in making plans for their organization’s spread work.
Left Ventricular Assist Device (LVAD)
A mechanical device implanted into a patient with left heart failure that assists the left ventricle in providing blood circulation.
Legislation
A law or group of laws proposed or enacted that have the force or authority of a state or Federal government, or other organization. For transplant related legislation, see Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA), OPTN Final Rule, First Person Consent Legislation, Health Insurance Portability and Accountability Act (HIPAA), National Organ Transplant Act (NOTA), Uniform Anatomical Gift Act, Uniform Brain Death Act, Uniform Determination of Death Act.
Leukocyte
A white blood cell.
Life years
For a particular population, the total number of years lived. For example, suppose 10 transplant recipients each lived 30 years following the transplant. As a group, these recipients would have lived 300 life years.
The largest organ in the body, made up of a spongy mass of wedge shaped lobes. The liver secretes bile, which aids in digestion, helps process proteins, carbohydrates, and fats, and stores substances like vitamins. It also removes wastes from the blood. A living donor can give part of their liver, after which the liver will regenerate itself in both the donor and recipient.
Liver and Intestinal Organ Transplantation Committee
The standing OPTN committee charged with considering medical, scientific and ethical aspects related or liver,intestine organ procurement, allocation and sharing. The committee will consider broad implications and specific situations among members.
Liver Simulated Allocation Model (LSAM)
A computer model that simulates various OPTN liver allocation system alternatives for the assessment of the impact of various liver policies.
Living Donation
When a living person gives an organ or a portion of an organ for use in a transplant. A kidney, or portion of a liver, lung, pancreas or intestine may be donated. See also Living Donor, Organ Donation.
Living Donor (LD)
A living person who donates an organ for transplantation, such as a kidney or a segment of the lung, liver, pancreas, or intestine. Living donors may be blood relatives, emotionally related individuals, or altruistic strangers. These may also include domino heart or liver transplants. See Domino Transplant.
Living Donor Committee
A permanent standing OPTN committee responsible for considering issues relating to the donation and transplantation of organs from living donors to recipients. The committee makes recommendations to improve the process of living donation and transplantation.
Living Donor Follow up Form (LDF)
The form submitted by the transplant center at six months and one year post donation, containing a living donor’s status, clinical measures and complications.
Living Donor Registration Form (LDR)
The form submitted by the transplant center containing living donor demographics, pre donation clinical measures, surgical information, post operative information and complications and post operative clinical measures.
Living Related Donor (LRD)
A family member who donates a kidney, part of a lung, liver or pancreas to another family member. Examples: a brother and a sister, or a parent and a child.
Living Unrelated Donor
A person who is not related by blood, who donates a kidney, part of a lung, liver or pancreas to another person (such as a husband, wife, friend or in law. In the last few years, stranger to stranger living unrelated donations have greatly increased).
Local Unit
The geographic area for organ procurement and distribution, usually the OPO’s Donation Service Area. See also Alternative Local Units (ALUs), Donation Service Area (DSA), Geographic units for organ distribution.
Lost to Follow up
A recipient who does not return to the transplant center for medical maintenance after the transplant procedure, or for whom posttransplant information is unavailable.
Lung Allocation Score (LAS)
In the OPTN lung allocation system, every lung transplant candidate age 12 and older receives a lung allocation score, which, combined with blood type, and the geographic distance between the candidates and the hospital where the lung donor is located, is used to determine priority for receiving a lung transplant when a donor lung becomes available. Lungs from pediatric and adolescent donors are offered first to pediatric and adolescent transplant candidates before they are offered to adults. The following medical information is used to calculate a lung allocation score from 0 to 100 for each transplant candidate:
Forced Vital Capacity
Pulmonary Artery Pressure
Oxygen at rest
Age
Body Mass Index
NYHA Functional Classification
6 minute walk distance
Assisted ventilation
Pulmonary Capillary Wedge Pressure
Serum Creatinine
Disease Diagnosis
Lung Review Board (LRB) )
A national peer review panel established to review estimated clinical values, diagnosis, and exceptional scores submitted by listing centers on behalf of lung transplant candidates.
The organs of respiration in which aeration of the blood takes place, consisting of a right and left lung divided into lobes. The right lung has three lobes and the left lung has two lobes.
Malignancy
A cancer, neoplasm or tumor that grows in an uncontrolled manner, invading nearby tissue and metastasizing (spreading) to other sites through the bloodstream.
Marginal donor
See Expanded Donor.
The compatibility between the donor and the recipient. The more appropriate the match, the greater the chance of a successful transplant.
A computerized ranking of transplant candidates based upon donor and candidate medical compatibility and criteria defined in OPTN policies.
Match System
The computerized algorithm used to prioritize patients waiting for organs. It eliminates potential recipients whose size or ABO type is incompatible with that of a donor and then ranks those remaining potential recipients according to the ranking system approved by the OPTN Board.
Medicaid
A partnership between the Federal government and the individual states to share the cost of providing medical coverage for recipients of welfare programs and allowing states to provide the same coverage to low income workers not eligible for welfare. Programs vary greatly from state to state.
Medicare
The program of the Federal government that provides hospital and medical insurance, through social security taxes, to people age 65 and over, those who have permanent kidney failure and certain people with disabilities.
Medication Administration Record (MAR)
A history of drug therapy provided to a patient.
Membership and Professional Standards Committee (MPSC)
The standing OPTN committee charged with insuring that OPTN members meet and remain in compliance with OPTN Criteria for Institutional Membership. The MPSC develops, modifies and makes recommendations to the board regarding criteria for institution membership and each class of membership to the Board, reviews membership applications and adopts recommendations to be presented to the Board; monitors members for compliance with membership criteria and policies including transplant center outcomes and activity levels and reviews reported policy violations and makes recommendations to the Board.
Minority Affairs Committee (MAC)
The standing OPTN committee charged with identifying issues which impact organ procurement, allocation and transplantation of minorities. As necessary, the committee conducts research related to specific issues under consideration. The committee provides input and recommendations to the Board of Directors to ensure that issues and needs particular to minority populations are met.
Mismatch (MM)
In kidney transplantation, a mismatch indicates the donor has at least one HLA A, HLA B, or HLA DR antigen that is not present in the recipient.
Model for End Stage Liver Disease (MELD)
The scoring system used to measure illness severity in liver transplant candidates. This system is used in the allocation of livers to adults, established in February 2002. The MELD system uses three laboratory values (bilirubin, creatinine and INR) to calculate a score that is predictive of the risk of death within three months on the liver waiting list. Livers are allocated to waitlisted patients with chronic liver disease based upon this score. See Pediatric End Stage Liver Disease (PELD) Scoring System.
Model for Improvement
An approach to process improvement, developed by Associates in Process Improvement, which helps teams accelerate the adoption of proven and effective changes. See also Plan Do Study Act.
Morbidity
A disease state or the incidence or frequency of a disease among a population.
Multiple Listing
Being on the waiting list for the same organ at more than one transplant center.
National Kidney Foundation (NKF)
A non profit national organization whose mission is to prevent kidney and urinary tract diseases, improve the health and well being of individuals and families affected by these diseases and increase the availability of all organs for transplantation. NKF is an OPTN member in the Voluntary Health Organization category.
The National Organ Transplant Act (1984 Public Law 98 507), approved October 19, 1984 and amended in 1988 and 1990, outlawed the sale of human organs and provided for the establishment of the Task Force on Organ Transplantation; authorized the Secretary of HHS to make grants for the planning, establishment, and initial operation of qualified OPOs; and established the formation of the Organ Procurement and Transplantation Network (OPTN) and Scientific Registry of Transplant Recipients (SRTR).
Nephrologist
A specialist in the treatment of kidney insufficiency and kidney disease.
New York Heart Association Functional Classification (NYHA)
An assessment of a patient’s heart failure based on the severity of symptoms. Range is Class I IV.
Non Function
A condition in which a transplanted organ fails to function after being transplanted into a recipient, meaning that the recipient will either have to start dialysis or undergo another transplant. Non function is rare (less than two percent of all kidney transplants) but is more common in liver transplants.
Non heartbeating Donor (NHBD)
See Donation after Cardiac Death.
Noncompliance
1) Failure of patients to follow the instructions of the medical team, 2) Failure of OPTN members to adhere to the policies and bylaws of the OPTN.
North American Transplant Coordinators Organization (NATCO)
A non profit membership organization for transplant and procurement clinicians worldwide. NATCO is an OPTN member in the Medical Professional,Scientific Organization category whose president also serves on the OPTN Board of Directors.
Omnibus Budget Reconciliation Act (OBRA)
The federal law that allows an employee to continue health insurance benefits after COBRA, if he,she has elected COBRA coverage due to a Social Security approved disability. OBRA is an 11 month extension of COBRA. OBRA also established hospital procedures that require a designated person to approach family members about donation at the time of a patient’s death. This practice is referred to as Routine Request. In 1987, OBRA was revised to require hospitals to notify OPOs regarding potential donors. See Consolidated Omnibus Budget Reconciliation Act (COBRA).
Operations Committee
The standing OPTN committee formed in July, 2003 to systematically ensure that OPTN policies and systems provide for efficient, effective and measurable organ allocation and distribution, with the aims of a) increasing the utility of donated organs, b) providing for the health and safety of transplant patients while c) instilling public trust in the national transplant system.
OPTN Computer Registration Fee
A fee paid by OPTN members at the time a patient is registered on the organ transplant waiting list or receives a living donor transplant. The fee amount is calculated annually, based upon projected OPTN operating expenses and projected patient registration volume for the year ahead. It is calculated by the OPTN Finance Committee, forwarded to the Board of Directors for approval and given final approval by HRSA.
OPTN Final Rule
The Final Rule (42 CFR Part 121) effective March 16, 2000, further defines the terms and conditions for operation of the OPTN. The Final Rule defines a standard framework for policies, requiring the OPTN to establish Policy Criteria, Policy Objectives and Performance Measures with procedures for continuous evaluation and reporting. Under the terms of the Final Rule, policies intended to be binding upon OPTN members are developed through the OPTN committees and Board of Directors and then submitted to the Secretary of HHS for final approval. The Rule also states that a transplant center must remain a member in good standing. If the member remains non compliant after due process by the OPTN Membership and Standards Committee, the Board may deem a non compliant center a Member Not in Good Standing. The case may then be forwarded for review to the Secretary, who could ultimately revoke that center’s eligibility to participate in Medicare.
OPTN Membership
There are five categories of membership to the OPTN:
Institutional Members: Organ Procurement Organizations, Transplant Centers and Histocompatibility Laboratories. Required by law. Membership term: indefinite.
Medical, Scientific Members: Professional Scientific or Medical Organizations or Institutions whose membership includes those involved in organ transplantation. Membership term: two years.
Public Organization Members: Organizations or institutions engaged in organ donation activities or representing or providing direct support or services to transplant recipients, transplant candidates, or their families; or hospitals that have an interest in the fields of organ donation or transplantation, defined by the referral of at least one potential organ or tissue donor per year for donation. Membership term: two years.
Business Members: established organizations or institutions with an interest in the fields of organ donation or transplantation, engaging in commercial activities with two or more active Institutional Members. Membership term: two years.
Individual Members: a person with an interest and,or expertise in the fields of organ donation or transplantation. Membership term: two years.
For further details on membership categories and the criteria that must be met to qualify, see Sections 1.1 1.8 of the OPTN Bylaws.
A part of the body made up of tissues and cells that enable it to perform a particular function. Transplantable organs are the heart, liver, lungs, kidneys, pancreas and intestines.
Organ Center (OC)
The UNOS Organ Center is responsible for facilitating organ sharing among transplant centers, organ procurement organizations and histocompatibility laboratories across the U.S. The primary functions of the Organ Center are to: assist in placing donated organs for transplantation, assist organ procurement organizations with running the donor,recipient computer matching process, assist with transportation of organs and associated tissues for the purposes of transplantation, act as a resource to the transplant community regarding organ sharing policies. The Organ Center operates 24 hours a day, 365 days a year.
Organ Center Staff
The Organ Center staff consists of 18 full time Organ Placement Specialists, two Organ Center Managers, and a four person Quality Management Team. The Organ Center day is divided into two 12 hour shifts, and is typically staffed with three Organ Placement Specialists per shift with one Specialist on call. Additionally, an Organ Center Manager is always available to assist with complex administrative, operational, or policy issues. The Organ Center employs individuals of varied educational backgrounds and employment experiences; however a bachelor’s degree is required with a preferred concentration in healthcare or science. Several of the staff have advanced degrees and most have previous clinical experience.
Organ Donation and Recovery Improvement Act
Passed by Congress in 2004, the Organ Donation and Recovery Improvement Act established programs to increase organ donation through public awareness campaigns and education projects, and provided grants programs for individual States supporting use of hospital based organ procurement coordinators, research and demonstration projects, and reimbursement to living donors for travel related expenses.
Organ Donation Breakthrough Collaborative
The HRSA program launched in 2003 as part of the HHS’ Gift of Life Donation Initiative, to 1) identify and promote the best practices in organ donation and procurement for hospitals and OPOs achieving the highest donation rates in the country, and 2) raise the overall donor consent rate to 75 percent among participating hospitals and OPOs. An increase in deceased donors by 4.3 percent occurred from 2002 to 2003 with the donor consents increasing by five percent. The model for the Breakthrough Collaborative was based upon the best practice strategies developed by HRSA and the Institute for Healthcare Improvement.
The Department of Health and Human Services joined with key national leaders and practitioners from the Nation’s transplantation and hospital communities in April 2003 to launch the Organ Donation Breakthrough Collaborative. The Collaborative is intended to dramatically increase access to transplantable organs. The purpose of this initiative is clear, measurable, ambitious, and achievable: Committed to saving or enhancing thousands of lives a year by spreading known best practices to the nation’s largest hospitals to achieve organ donation rates of 75 percent or higher in these hospitals.
To give an organ or a part of an organ to be transplanted into another person. Organ donation can occur with a deceased donor, who can give kidneys, pancreas, liver, lungs, heart, intestinal organs, and with a live donor, who can give a kidney, or a portion of the liver, lung, or intestine.
Organ Placement Process
When organs are donated, the host OPO accesses the national transplant computer system through the Internet, or contacts the Organ Center at UNOS. Information about the donor is entered into the system and a donor,recipient match is run for each donated organ. The resulting match list of potential recipients is ranked according to criteria defined in that organ’s allocation policy (i.e. blood type, tissue type, size of the organ, medical urgency of the patient as well as time already spent on the waiting list and distance between donor and recipient). Each organ has its own specific criteria.
Using the match list of potential recipients, the host OPO’s organ procurement coordinator or the Organ Placement Specialist in the Organ Center contacts the transplant center of the highest ranked patient, based on policy criteria, to be offered the organ. If the organ is turned down, the next potential recipient’s transplant center on the match list is contacted until the organ is placed. Once the organ is accepted for a patient, transportation arrangements are made and transplant surgery is scheduled. See also, Wait List, Wait List Registration, Waiting Time.
Organ Placement Specialist
Organ Center personnel responsible for coordinating the organ matching process among OPTN members.
Methods used to preserve organs while they are out of the body, between procurement from a donor and transplantation into a recipient.
Organ Procurement
The removal or retrieval of organs from a donor for transplantation.
In 1987, Congress passed the National Organ Transplant Act that mandated the establishment of the OPTN and Scientific Registry of Transplant Recipients. The purpose of the OPTN is to improve the effectiveness of the nation’s organ procurement, donation and transplantation system by increasing the availability of and access to donor organs for patients with end stage organ failure. The Act stipulated that the Network be a non profit, private sector entity comprised of all U.S. transplant centers, organ procurement organizations and histocompatibility laboratories. These members along with professional and voluntary healthcare organizations and the representatives of the general public are governed by a Board of Directors which reports to the Division of Transplantation, HRSA and ultimately HHS. UNOS holds the OPTN contract.
Organ Procurement Organization (OPO)
An organization designated by the Centers for Medicare and Medicaid Services (CMS) and responsible for the procurement of organs for transplantation and the promotion of organ donation. OPOs serve as the vital link between the donor and recipient and are responsible for the identification of donors, and the retrieval, preservation and transportation of organs for transplantation. They are also involved in data follow up regarding deceased organ donors. As a resource to the community OPOs engage in public education the critical need for organ donation. See also Donation Service Area (DSA).
Organ Procurement Organization Committee
The standing OPTN committee charged with considering issues relating to organ procurement organizations and increasing organ procurement efficiency and effectiveness to include medical, scientific and ethical aspects. The committee provides input to other OPTN committees as well as to the OPTN Board of Directors. As necessary, the committee conducts research related to specific issues under consideration.
Organ Transplant Breakthrough Collaborative (OTBC)
An extension of the ODBC, the focus is to increase organ utilization. Specifically, the aim of this collaborative is to increase the mean number of recipients transplanted per donor from 3.06 (2004 U.S. mean) to 3.75 or higher. Success in this initiative is wholly dependent on the active participation of three estates: Transplant Programs, Donor Hospitals, and Organ Procurement Organizations.
Irregularly shaped gland that lies behind the stomach and secretes pancreatic enzymes into the small intestines to aid in the digestion of proteins, carbohydrates and fats. Islet cells within the pancreas secrete glucagon, which regulates blood sugar levels and insulin, which lowers blood sugar levels. If the pancreas fails, the individual becomes diabetic, and may need to take insulin. The pancreas can be donated and transplanted.
Pancreas Transplant Alone (PTA)
A type of isolated pancreas transplantation.
Pancreas Transplantation Committee
The standing OPTN committee charged with considering medical, scientific and ethical aspects related to pancreas procurement, allocation and sharing. The committee considers both the broad implications and the specific member situations relating to pancreas issues and policies.
Panel Reactive Antibody (PRA)
The percent PRA value is a measure of a patient’s level of sensitization to HLA antigens. It is the percentage of cells from a panel of blood donors against which a potential recipient’s serum reacts. The PRA reflects the percentage of the general population that a potential recipient makes antibodies (is sensitized) against. For example, a patient with a PRA of 80 percent will be incompatible with 80 percent of potential donors. Kidney patients with a high PRA are given priority on the waiting list. The higher the PRA, the more sensitized a patient is to the general donor pool, and thus the more difficult it is to find a suitable donor. A patient may become sensitized as a result of pregnancy, a blood transfusion, or a previous transplant.
Past Medical History (PMH)
A record of a patient or donor’s past medical problems.
Past Surgical History (PSH)
A record of a patient or donor’s past surgeries.
Patient Affairs Committee
The standing OPTN committee charged with advising the Board of Directors and other committees about patient and donor family perspectives on proposed policies and issues and acting as an advocate for organ donors and transplant candidates and recipients.
Patient Self Determination Act (PSDA)
In effect since 1991, the Act gives adults with the capacity to make their own medical decisions the right to make decisions today about health care treatment they would want to receive in the future if they could not communicate what they want at that time. The law requires that hospitals, nursing homes and other health agencies give all patients information about their right to have a legal document called an Advance Directive. See Advance Directive for Healthcare.
Patient Survival
The length of time a patient survives after receiving a transplant.
Patient years
This term is synonymous with life years and refers to the total number of years lived by a group of people. It is sometimes used in rate calculations. For example, if 100 candidates each spent one year waiting for a transplant during a specified period and 50 were transplanted, the transplant rate for this group would be 50 transplants per 100 patient years on the waiting list.
PCO2
A blood gas test is performed to measure the amount of C02 in the blood. When the lung’s ability to exchange oxygen and C02 becomes impaired, the PC02 level may become increased. The candidate’s current PC02 and change in PC02 are both considered in the lung allocation score calculation to reflect worsening PC02 values. PCO2 is used in the Lung Allocation Score.
Pediatric End Stage Liver Disease (PELD) Scoring System
A measure of illness severity used in the allocation of livers to pediatric candidates, established in February 2002. The PELD system uses three laboratory values (albumin, bilirubin and INR), a presence of growth failure (at least 2 standard deviations below average height or weight), and an indicator of whether the patient is less than one year of age to calculate a score predictive of the risk of death within three months on the liver waiting list for candidates under the age of 18. See Model for End Stage Liver Disease (MELD).
Pediatric Transplantation Committee
The standing OPTN committee charged with considering medical, scientific and ethical issues relating to organ procurement, allocation and sharing for pediatric patients. These issues include: pre and postoperative care, expeditious transplantation of children, and the specific medical, social and psychological needs of children. The committee considers the broad implications of such issues and will deal with these specific issues or situations as needed.
Peer Review
Evaluation of a professional’s activity or performance by other professionals in the same field. Peer review plays an important role in OPTN activities. The Membership and Professional Standards Committee (MPSC) helps to ensure adherence to policies and membership criteria, consistent application of OPTN standards of practice, and equitable treatment of patients in the transplant community.
Percentile
In statistical analysis, the Nth percentile measure is the value at which N% of the cases are at or below that percentile. For instance, for liver waiting list registrations in 1998, the 25th percentile for waiting time is 140 days. This means that by 140 days after being added to the liver transplant waiting list, 25 percent of registrants had been transplanted. For the same group, the median for waiting time was 390 days. The median is defined as the 50th percentile. For this group of liver registrants, 50 percent had been transplanted by 390 days.
Perfusion
The passage of a fluid (blood or other) through the vessels of organs or tissues. Deceased organs are perfused with synthetic cold preservation fluid to keep them viable for transplant.
Peripheral Vascular Disease (PVD)
” A condition in which the arteries that carry blood to the arms or legs become narrowed or clogged. This interferes with the normal flow of blood, sometimes causing pain, but often causing no symptoms at all. The most common cause of PVD is atherosclerosis (often called “”hardening of the arteries””). In some cases, PVD may be caused by blood clots that lodge in the arteries and restrict blood flow.”
” A treatment technique for kidney failure that uses the patient’s own body tissues inside of the (abdominal cavity to act as a filter. The intestines lie in the abdominal cavity, the space between the abdominal wall and the spine. A plastic tube called a “”dialysis catheter”” is placed through the abdominal wall into the abdominal cavity. A special fluid is then flushed into the abdominal cavity and washes around the intestines. The lining (peritoneum) of the abdominal cavity and of intra” abdominal organs act as a filter between this fluid and the blood stream. By using different types of solutions, waste products and excess water can be removed from the body through this process.
Placement
The process of alocating donated organs via the match system.
Plan Do Study Act (PDSA)
The four steps used in the Model for Improvement developed to enhance organization performance; a cycle of developing, testing, measuring and implementing changes that result in improvement: The steps are as follows:
PLAN State objective (what needs to be improved) and identify metric for measuring accomplishment of the objective; make predictions, hypotheses and develop a plan to carry out cycle
DO Carry out the test, collect data or other info, input needed; document problems, unexpected observations; and begin analysis of data
STUDY Complete analysis of data; compare data to predictions; and summarize what was learned
ACT Determine what changes are to be made, identify remaining and new questions and repeat the PDSA to continue exploring and implementing changes that result in progress toward stated objectives
The PDSA cycle was proven effective by the Organ Donation Breakthrough Collaborative and is being implemented throughout OPTN programs and polices. It is based on The Improvement Guide: A Practical Approach to Enhancing Organizational Performance, by Gerald J. Langley, Kevin M. Nolan, Thomas W. Nolan, Clifford L. Norman and Lloyd P. Provist. Published by Jossey Bass. See also Model for Improvement.
Plasmapheresis
A process in which plasma is removed from blood and the remaining components, mostly red blood cells, are returned to the donor. The process may be used in transplantation to remove pre formed antibodies.
Policy Development Process
The continuous process by which the OPTN creates, refines and implements ethical, evidence and consensus based policies and standards for the procurement, allocation, distribution and transplantation of organs in the U.S.
Policy Oversight Committee
Established by the 2005 OPTN contract, this committee is charged with review policies (existing and proposed) to assess whether they are helping to meet the goals and metrics set forth by the OPTN Strategic Plan and HRSA’s program goals. The POC is responsible for:
Supporting and improving the efficiency of the OPTN policy development and process for deliberation
Ensuring that allocation policies meet certain performance improvement standards
Supporting ongoing operation and improvement of data collection systems
Reviewing proposed research projects to ensure continued understanding of organ donation and transplantation issues that will ultimately improve the performance of the national transplantation system
Polycystic Kidney Disease (PKD)
A hereditary condition that results in the formation of cysts throughout the kidneys. Patients with PKD often require kidney transplantation.
Posttransplant lymphoproliferative disorder (PTLD)
A spectrum of lymphoid tissue disease ranging from benign infections (mononucleosis) to highly malignant lymphomas.
Posttransplant Malignancy Form (MAL)
The form submitted by the transplant center when a posttransplant malignancy is reported on the transplant recipient follow up record. The MAL form includes information about the type of malignancy, diagnosis, treatment and outcome.
Potential Donor
A patient who meets the criteria for brain death with no absolute contraindications to organ donation as defined by a standardized list from the International Classification of Diseases, Ninth Revision.
Potential Transplant Recipient (PTR)
A transplant candidate who has been ranked by the computer matching system as the person to whom an organ from a specific deceased organ donor is to be offered.
Preferred Provider Organization (PPO)
A health insurance plan with an established network of healthcare providers. It provides maximum benefit coverage when services are obtained from provider within the network. Reduced benefits generally apply for using health care providers outside of the network.
Premature Ventricular Contractions (PVCs)
Early or extra heartbeats that commonly occur and are usually harmless in normal hearts, but can cause problems in hearts with pre existing disease.
Preservation
Method used to keep organs viable between procurement and transplantation. The length of time organs and tissues can be kept outside the body vary depending on the organ, the type of preservation fluid, and the preservation method (pump or cold storage).
Prework Packet
Breakthrough Collaborative term. A document containing a complete description of the Initiative, along with expectations and activities to complete prior to the first Learning Session of the Initiative.
Prework Period
Breakthrough Collaborative term. The time prior to the first Learning Session when teams prepare for their work in the Spread Initiative, including designating both a senior leader and a day to day spread agent, establishing a team, developing preliminary aims and measures and summarizing work in progress in a storyboard.
Primary Non Function
A condition in which a transplanted organ fails to function soon after being transplanted into a recipient, meaning that the recipient will either have to start dialysis or undergo another transplant. Primary non function is rare (less than two percent of all kidney transplants) but is more common in liver transplants.
The surgical procedure of removing an organ from a donor. Also referred to as recovery.
Program Goals
A set of annual and 10 year performance goals for the national transplant network established by the Department of Health and Human Services within the Federal Government. They include measurable objectives relating to increasing the number of donors and transplants, increasing life years gained among kidney recipients and increasing operational efficiency of the OPTN. The OPTN contract requires the OPTN to play a significant and substantive role in achieving these goals.
Public Comment
A pivotal step in the policy making process, public comment assures that the perspectives and concerns of the general public are taken into account and addressed in policy proposals. Generally speaking, the period for public comment is 45 days. The sponsoring committee creates a public comment document that contains the rationale, the proposal itself and summaries of both. After the document is approved by the Executive Committee, it is distributed to all OPTN members and interested public. The document is mailed to those who request a paper copy, and an email notification containing a link to the document on the OPTN Web site is sent to the others. Public comment materials are also distributed at regional meetings.
The sponsoring committee considers the comments, provides additional information as needed, modifies the proposal as it deems appropriate, or dismisses the proposal for further consideration. Final recommendations are developed for the Board of Directors. The Board reviews the summary of public comments and the final recommendation by the committee, and votes to accept, reject, or modify and accept the proposed policy with a future implementation date.

Pull
Breakthrough Collaborative term. A strategy in the OTBC Change Package where transplant programs work to optimize organ acceptance and success rates for each organ type. The purposes of the Pull Strategy are to:
Evolve an effective game plan for accepting all organs
Understand and guide the capacity to transplant more organs in the DSA
Maximize the likelihood of patients having a successful transplant rather than dying on the waiting list
Assure transplant program practice is as aggressive as possible
Create relationships with OPOs in other DSAs to assure the capacity to receive organs is fully utilized
Pulmonary
Having to do with, or referring to, the lungs.
Pulmonary Function Tests (PFTs)
Diagnostic tests that help to measure the lungs’ ability to exchange oxygen and carbon dioxide appropriately.
Pulmonologist
A medical specialist who is an expert in the diagnosis and treatment of lung diseases.
Pump
An apparatus for forcing a gas or liquid from or to any part. In organ preservation, pump is a reference to the mechanical perfusion pump that is used to continuously perfuse a recovered organ with a chilled preservation solution.
Pump Time
The number of hours between the time the organ is connected to the preservation pump and cold preservation fluid circulates through the organ, and the time the organ is removed from the pump.
Push
Breakthrough Collaborative term. A strategy in the OTBC Change Package where organs are placed aggressively and strategically. The purposes of the Push Strategy are to:
Conduct an exhaustive and relentless search to identify a compatible recipient for every transplantable organ
Organize to use exports and imports to assure high acceptance and transplantation rates
Staff and standardize an increasingly effective placement process
Use information and feedback to build trust and confidence in organ quality, information quality, and efficient matching
Pyelonephritis
Inflammation and,or infection of the kidney and the renal pelvis (part of the system that conveys urine from the kidney to the bladder).
A person who receives a transplant.
Recipient Histocompatibility Form (RH)
The form submitted by the histocompatibility laboratory when a patient is removed from the waiting list as transplanted or when living donor feedback is completed for patients who are not listed. The RH contains information on recipient HLA, panel reactive antibody, crossmatch and donor HLA.
Recovery (Organ)
The surgical procedure of removing an organ from a donor.
Referred Death
Refers to all deaths or imminent deaths reported by a hospital to the OPO within the Donation Service Area (DSA).
Refusal Reasons
Number codes used on a match run to show the reason an organ was not accepted for a potential transplant recipient (PTR) receiving the offer.
Regional Administrator (RA)
UNOS staff person who serves as a resource regarding OPTN information, policies and procedures to members in designated Regions. RAs assist Regional Councillors with planning and conducting regional meetings (and drafting agendas, minutes and correspondence), coordinating regional communications and ensuring regional activities and issues are documented and addressed appropriately. RAs are available to answer questions regarding regional representation, and routinely provide information and materials on the following topics:
Responsibilities of Regional Councillors and Associate Councillors
Responsibilities of Regional Administrators
Directory of regional members by category and state
Roster of regional representatives to national committees
Regional guidelines (if applicable)
Member voting status sheet
Previous regional meeting minutes and regional issues
Previous Board of Directors’ actions affecting regions
See also Region, Regional Associate Councillor, Regional Councillor.
Regional Associate Councillor
Regions elect an Associate Councillor who wil eventualy succeed the Regional Councilor. Each region determines the guidelines for the election procedures. Councillors and Associate Councillors serve one to two years and cannot succeed themselves in office. The Associate Councillor serves as the regional representative on the OPTN Membership and Professional Standards Committee, assists the Regional Councillor with regional activities, provides leadership to the region in the absence of the Regional Councillor and participates in all regional meetings. The Associate Councillor may attend the Board of Directors meeting in the Regional Councillor’s absence to participate in discussions and represent the regional views. However, Associate Councillors may not vote on behalf of Councillors. See also Region, Regional Administrator, Regional Councillor.
Regional Councillor
Each Region elects a Regional Councillor to represent regional views and opinions to the Board of Directors. Each region determines the guidelines for the election procedures. Councillors and Associate Councillors serve one to two years and cannot succeed themselves in office. Once elected as a Regional Councillor, that person’s name is added to the ballot for election to the Board of Directors. Since all members of the Board of Directors must be elected by a vote of a quorum of the entire membership, Regional Councillors are included on the ballot and elected to the board in the same manner as the other candidates. The Regional Councillor provides leadership to the Region, facilitating information sharing, mediating differences, conducting regional meetings at least twice yearly, nominating regional representatives to OPTN committees, upholding policies and by laws and communicating information affecting transplant practices and policies to the regional membership. See also Region,
Regional Review Boards (RRBs)
Peer review panels established in each of the 11 Regions to review all urgent status listings for liver and heart candidates. The RRB reviews justification forms submitted by each center documenting the severity of the candidate’s illness and justifies the status at which the candidate is listed. Liver RRBs review listings for all liver candidates in Status 1, special case exceptions for MELD,PELD liver candidates, and hepatocellular carcinoma (HCC) candidates. Thoracic RRBs review listings for heart candidates in Status 1A and special case heart candidates in Status 1B. These boards also consider appeals of cases initially turned down for a particular medical urgency status. In 2004 a national Lung Review Board was established. See also Conflict of Interest, Lung Review Board (LRB), Peer Review.
Regions
For the administration of organ allocation and appropriate geographic representation within the OPTN policy structure, the membership is divided into 11 geographic regions. Members belong to the Region in which they are located. The Regions are as follows:
Region 1 Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island
Region 2 Delaware, District of Columbia, Maryland, New Jersey, Pennsylvania, Northern Virginia, West Virginia
Region 3 Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, Puerto Rico
Region 4 Oklahoma, Texas
Region 5 Arizona, California, Nevada, New Mexico, Utah
Region 6 Alaska, Hawaii, Idaho, Montana, Oregon, Washington
Region 7 Illinois, Minnesota, North Dakota, South Dakota, Wisconsin
Region 8 Colorado, Iowa, Kansas, Missouri, Nebraska, Wyoming
Region 9 New York, Vermont
Region 10 Indiana, Michigan, Ohio
Region 11 Kentucky, North Carolina, South Carolina, Tennessee, Virginia
Rejection
A phenomenon that occurs when a recipient’s immune system attacks a transplanted organ, tissue, or cell. Immunosuppressive drugs help prevent or treat rejection.
Renal
Having to do with, or referring to, the kidneys.
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 for transplantation by giving more people the opportunity to donate.
Retransplantation
Due to rejection or failure of a transplanted organ, some patients receive another transplant.
Retrieval
The surgical procedure of organ recovery. Also referred to as procurement.
Right Ventricular Assist Device (RVAD)
A mechanism implanted into a patient with heart failure that maintains right ventricular blood circulation which is circulation from the heart through the lungs.
Risk Pools
State created, nonprofit associations that do not require tax dollars for operational purposes. The risk pools are a temporary stopping place for individuals who are denied health insurance for medical reasons. Risk pools often help individuals who, because of their physical condition, are unable to purchase health insurance at any price.
Routine Referral
Hospitals are required on or before each death to call the OPO in order to determine suitability for organ, eye and tissue donation. The OPO, in consultation with the patient’s attending physician or his or her designee, will determine the suitability for donation. If the patient is a candidate for anatomical donation, only personnel from the OPO or a designated requestor from the hospital can request donation from the next of kin.
As called for by the National Organ Transplant Act (NOTA), the purpose of the SRTR is to provide ongoing evaluation of clinical data about donors, transplant candidates, and recipients, as well as patient and graft survival rates. With oversight and funding from the DoT, the SRTR is currently administered by the Chronic Disease Research Group (CDRG) of the Minneapolis Medical Research Foundation (MMRF).
Sensitization
” Transplant candidates are “”sensitized”” if their immune system makes antibodies against a general donor pool. Sensitization usually occurs as a consequence of pregnancy, blood transfusions, or previous transplantation. The degree of sensitization is measured by panel reactive antibody (PRA). Highly sensitized patients are less likely to match with available donors and more likely to reject an organ than unsensitized patients.”
Sharing Agreement, Sharing Arrangement
The OPTN Board approved arrangement entered into by two or more OPOs to share organs. With the exception of arrangements that are approved for a finite time period to test a hypothesis, OPOs participating in sharing agreements must have geographically contiguous service areas.
Site Survey
Field reviews of OPTN members conducted by OPTN staff to determine compliance with OPTN Policies. The site survey results are reviewed during the peer review process of the OPTN Membership and Professional Standards Committee.
Social Security Act, Section 1138
Federal legislation requiring all U.S. hospitals to establish written protocols for identifying potential organ donors. The Act also requires hospitals to notify their designated OPO of potential organ donors to:
ensure that families of potential organ donors are made aware of the option of organ or tissue donation and their option to decline, and to
encourage discretion and sensitivity by hospitals with respect to the circumstances, views, and beliefs of such families.
The Act also outlined the responsibilities of OPOs, and required OPOs and hospitals performing transplants to comply with the membership standards and policies of the OPTN.
Split liver
A split liver transplant occurs when the donor liver is divided into segments and then transplanted. These segments may be transplanted into more than one recipient, or a segment could be transplanted into a child for whom an entire adult liver would be too large.
Spread Strategy
Breakthrough Collaborative term. The process by which an innovation is communicated through certain channels over time among members of a social system, as defined by Everett Rogers (1995).
Standard Criteria Donor (SCD)
A donor who does not meet the criteria for DCD or ECD.
Standard Criteria Donor (SCD) Kidney
A kidney donated for transplantation by a donor who has suffered brain death (i.e., is not a donor after cardiac death) and who is not an expanded criteria kidney donor. See Donor After Cardiac Death and Expanded Criteria Donor Kidney.
Standard Error
The standard error measures the level of precision associated with an estimate for a population, usually the mean. Categories that include a large number of transplants generally have small standard errors, while categories with relatively few transplants generally have large standard errors. Survival rates associated with a smaller standard error are more precise than those associated with a larger standard error. Standard errors are presented in the graft and patient survival rates tables.
Statement of Principles and Objectives of Equitable Organ Allocation
Ethical guidelines for creating equitable policies, drafted and circulated to more than 12, 000 individuals for public comment, discussed at two public forums, revised accordingly and passed by the Board in June, 1994. The Statement of Principles and Objectives of Equitable Organ Allocation calls policymakers to seek balance among four tenets:
Enhance availability of transplantable organs
Allocate organs based upon medical criteria, striving to give equal consideration to medical utility (i.e., net medical benefit to all transplant patients as a group) and justice (i.e., equity in the distribution of the benefits and burdens among all transplant patients)
Provide transplant candidates reasonable opportunities to be considered for organ offers within comparable time periods, taking into consideration similarities and dissimilarities in medical circumstances as well as technical and logistical factors in organ distribution
Respect autonomy of persons
See also Ethics, Hippocratic Oath, Justice, Utility.
An indication of the degree of medical urgency for patients awaiting heart or liver transplants. Examples: status 1A, status 1B, or status 2.
Stem Cells
An embryonic or primitive cell that gives rise to all types of specialized cells.
Steroids
Naturally occurring hormones in the body that help control important body functions. Synthetic or man made steroids can be used to suppress the immune system.
Survival Rates
Survival rates indicate the percentage of patients that are alive and the grafts (organs) that are still functioning after a certain amount of time. Survival rates are used in developing OPTN policy.
Systolic Blood Pressure
The top number in the blood pressure (the 120 in a blood pressure of 120,80) measures the maximum pressure exerted on the vessel wall when the heart contracts.
Thoracic Organ Transplantation Committee
The standing OPTN committee charged with considering issues relating to heart and lung procurement, allocation, and transplantation, including medical, scientific and ethical aspects. The committee will consider the broad implications of such issues and will deal with specific individual issues or situations.
Thoracic Organs
Organs located in the chest, i.e., the heart and lungs.
Time to Transplant (TT)
The measure of time from wait listing to transplantation. Time to transplant considers all candidates who are initially registered on the waiting list, and measures the time between waiting list registration and transplant date. See also Waiting Time (WT).
An organization of a great many similar cells that perform a special function. Examples of tissues that can be transplanted are blood, bones, bone marrow, corneas, heart valves, ligaments, saphenous veins, and tendons.
Tissue Type
An individual’s combination of HLA antigens. Matching for tissue type is used in the allocation system for kidney and pancreas transplantation.
A blood test that helps evaluate how closely the tissues of the donor match those of the recipient.
Total Artificial Heart
A mechanical pump used to replace the function of a damaged heart, either temporarily or as a permanent prosthesis.
Total Parenteral Nutrition (TPN)
The delivery of nutrients, calories, protein, fat, and,or all caloric needs through a vein into the bloodstream. TPN is used for patients who cannot maintain their nutrition by oral intake.
Transferring Waiting Time
Patients may switch to a different transplant hospital and transfer their waiting time to that hospital. Waiting time from the original center is added to the time collected at the new hospital. See also Waiting Time Modification.
Transplant Administrators Committee
The standing OPTN committee charged with representing the transplant administration community on the Board and striving to optimize transplant services through administrative practices for the benefit of patients and the broader community.
Transplant Candidate Registration Form (TCR)
The form completed and submitted by the transplant center when a patient is added to the waiting list or when living donor feedback is completed for patients who are not listed. The form contains information on candidate demographics, previous transplants, payment, clinical information at time of listing and organ specific medical factors.
Transplant Center
A hospital that performs transplants, including qualifying patients for transplant, registering patients on the national waiting list, performing transplant surgery and providing care before and after transplant.
Transplant Coordinators Committee
The standing OPTN committee charged with considering issues that affect the coordination of efforts related to organ procurement, organ allocation, the overall transplant process and the impact of technical innovations on allocation and operations, and how these affect patient,family care, donors and donor families.
Transplant Program
The organ specific facility within a transplant center. A transplant center may have programs for the transplantation of hearts, lungs, liver, kidneys, pancreata, pancreas islets, and,or intestines.
Transplant Recipient Follow up Form (TRF)
The form completed and submitted by the transplant center containing recipient information at six months posttransplant (all but thoracic) and annually thereafter. The form contains patient status, clinical measures at follow up, graft status, viral detection, treatment and immunosuppression.
Transplant Recipient Registration Form (TRR)
The form completed and submitted by the transplant center when a patient is transplanted. The form contains patient status, pretransplant clinical measures, transplant procedure, post transplant clinical measures, graft status, treatment and immunosuppression.
Transplant Team
” The diverse group of professionals at the transplant center who work to make a transplant successful. Each person on the “”transplant team”” is an expert in a different area of transplantation. The transplant team includes all or some of the following professionals:”
Clinical transplant coordinators have responsibility for the patient’s evaluation, treatment, and follow up care.
Transplant physicians are doctors who manage the patient’s medical care, tests, and medications. He or she does not perform surgery. The transplant physician works closely with the transplant coordinator to coordinate the patient’s care until transplanted, and in some centers, provides follow up care to the recipient.
Transplant surgeons perform the transplant surgery and may provide the follow up care for the recipient. The transplant surgeon has special training to perform transplants.
Financial coordinators have detailed knowledge of financial matters and hospital billing. The financial coordinator works with other members of the transplant team, insurers, and administrative personnel to coordinate and clarify the financial aspects of the patient’s care before, during, and after the transplant.
Social workers help patients and their families understand and cope with a variety of issues associated with a patient’s illness and,or the various side effects of the transplant itself. In some cases, the social worker may perform some of the financial coordinator duties as well.
Uniform Anatomical Gift Act (UAGA)
The 1968 Uniform Anatomical Gift Act (UAGA) provided the legal foundation upon which human organs and tissues could be donated for transplantation by execution of an anatomical gift authorizing document. Since 1972, all 50 states and the District of Columbia have adopted this Act, or amended forms of this Act.
Uniform Brain Death Act
Enacted in 1978, the Uniform Brain Death Act expanded the traditional definition of death (cardiopulmonary) to include brain death.
Uniform Determination of Death Act (UDDA)
” The 1981 Uniform Determination of Death Act is a model statute defining “”brain death.”” Versions of this Act have been adopted in 39 states and the District of Columbia. The act states that an individual who has sustained either (a) irreversible cessation of circulatory or respiratory functions or (b) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.”
The private, nonprofit membership organization that coordinates the nation’s transplant system through HRSA’s OPTN contract. As OPTN contractor, UNOS is responsible for meeting all contract requirements. As contractor since the first OPTN contract award in 1986, UNOS has established and continually strives to improve tools, systems and quality processes that support OPTN contract objectives and requirements. These include:
Managing the national organ transplant waiting list
Collecting, managing and reporting of sensitive clinical data in a secure, fail safe environment
Facilitating an open, inclusive forum for development and continuous refinement of evidence based policies and standards
Member and policy performance assessment to ensure equitable, safe treatment of candidates and recipients
Increasing donation and making the most of every organ that is donated through professional education, outcomes research, patient services and resources and public and professional education
Continuously improving the care, quality of life and outcomes of organ transplant candidates and recipients
United States Renal Data System (USRDS)
The national data system that collects, analyzes, and distributes information about end stage renal disease (ESRD) in the United States. The USRDS is funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) in conjunction with the Centers for Medicare and Medicaid Services (CMS). USRDS collaborates with CMS, the OPTN and the ESRD networks, sharing datasets and actively working to improve the accuracy of ESRD patient information.
Utility and Justice
Because the supply of organs is so limited, policymakers must balance Utility making the best use of each organ, utilizing every available organ and doing the most good for the most people, with Justice providing all transplant candidates with equitable access to transplant care and transplantable organs regardless of age, ethnicity, religion, financial status or geography. See also Ethics, Hippocratic Oath, Justice, Statement of Principles and Objectives of Equitable Organ Allocation.
Variance
A Board approved, time limited experimental OPTN policy designed to test a hypothesis that the change will improve allocation by more effectively addressing fairness, utility, efficiency, need and,or supply. A variance must have a research plan that addresses performance measures, data collection and analysis.
Varices (esophageal)
Enlarged and swollen veins at the bottom of the esophagus, near the stomach. A common condition caused by increased venous pressure in the liver. These veins can ulcerate and bleed.
Vascular
Referring to blood vessels and circulation.
Ventilator
” A machine that “”breathes”” for a patient when the patient is not able to breathe properly.”
Ventricular Assist Device (VAD)
A mechanical pump surgically implanted into the heart’s atrium or ventricle to aid in pumping blood to the aorta. Most VADs are considered a bridge to transplant for patients with heart failure.
Ventricular Tachycardia (V tach)
A heartbeat caused by the ventricles that is so rapid the heart does not fill adequately with blood, and less blood is able to pump through the body.
Virus
A group of tiny organisms capable of growing and copying themselves while living within cells of the body.
Wait List (WL)
The list of candidates registered to receive organ transplants. When a donor organ becomes available, the matching system generates a new, more specific list of potential recipients based on the criteria defined in that organ’s allocation policy (e.g., organ type, geographic local and regional area, genetic compatibility measures, details about the condition of the organ, the candidate’s disease severity, time spent waiting, etc.).
Wait List Registration
To be registered for a transplant, a patient undergoes a complete clinical evaluation by the transplant team. If a transplant is needed, the center registers that patient on the Wait List. Within ten days of evaluating a patient for transplant, the transplant center is required to send a letter informing the patient that he or she has or has not been registered on the Wait List. The following registration status categories are used to track waiting patients:
Active, describing actively waiting patients whose conditions are favorable for transplant surgery;
Inactive, describing patients experiencing conditions (e.g., infection) that temporarily rule out transplant surgery;
Removal, describing patients removed from the Wait List a) by personal, voluntary choice, b) because they have become too ill to survive surgery or posttransplant immunosuppression, c) are recovering adequate organ function, d) have received a transplant, or e) have died.
Waiting Time
The amount of time a candidate is on the Wait List. Waiting times can be influenced by many factors, including:
blood type (some are rarer than others)
height and weight of transplant candidate
size of donated organ
medical urgency
time on the waiting list
the distance between the donor’s hospital and the potential donor organ
how many donors there are in the local area over a period of time and
the transplant center’s criteria for accepting organ offers
Depending on the kind of organ needed, some factors are more important than others.
Warm Ischemic Time (WIT)
If the donor is a DCD donor, the warm ischemic time is the time from:
The time of Agonal Phase onset to the time when core cooling is initiated.
OR
The calculated time using the serial data to be collected beginning with the agonal phase and ending with the initiation of core cooling.
White paper
An authoritative report issued by an agency on a particular topic.
An organ or tissue procured from a different species for transplantation into a human.
Xenotransplantation
Transplantation of an animal organ into a human. Although xenotransplantation is highly experimental, many scientists view it as an eventual solution to the shortage of human organs.
Z
Zero Antigen Mismatch (0MM)
This occurs when the donor does not have any HLA A, B, or DR antigens foreign to the transplant candidate.
Abscess — A localized infection.
Angiogram — A test that uses X rays to view blood vessels and detect blockages or other problems in the vessels. A dye is injected into the blood vessel to make the blood flow visible on an X ray.
Ascites — The abnormal accumulation of fluid in the abdominal cavity caused by poor liver function and increased pressure in the liver veins.
Bilirubin — Pigment that’s released from the normal breakdown of red blood cells and removed from the blood by the liver and passed into the intestine as part of the bile.
Cadaveric donor — A donor whose brain has suffered irreversible damage. In all cases, either the donor or the donor’s family has agreed to the donation. Testing is performed to ensure that the organs are not damaged in any way, and then the organs are matched to a transplant candidate of compatible size and blood type.
CAT,CT scan — Computerized axial tomography (CAT or CT scan) is a three dimensionaI X ray picture of the internal organs used to detect a mass, an abscess, tissue damage or bleeding in the body.
Cirrhosis — A chronic scarring and degeneration of the liver cells. Many different diseases can cause cirrhosis.
Cholangiogram — The injection of dye into the bile ducts, either directly or through a T tube, to see if bile is flowing into the intestine.
Coagulopathy — Abnormal blood clotting.
Echocardiogram — A test that uses sound waves to create a moving picture of the heart and determine how effectively the heart is pumping.
Edema — A condition in which the body retains too much fluid in the tissues, especially in the legs, ankles and hands.
Electrocardiogram — A test used to determine the type of heart rhythm and detect any injury to the heart tissue. During the test, electrodes are placed on the chest to detect the heart’s electrical activity.
Encephalopathy — Change in consciousness, thinking abilities and behavior seen in advanced liver disease and caused by the accumulation of wastes from protein breakdown.
Endoscope — A small, telescope like instrument that can be inserted into the esophagus, stomach and part of the small intestine.
Hepatitis — An inflammation of the liver.
HIDA scan — A test that helps measure general liver function and determines if there are any blockages of the bile ducts. During the test, a special dye is injected into an arm vein and its progress is tracked through the liver, bile ducts, gallbladder and small intestine.
Immune response — The body’s attempt to protect itself from bacteria, viruses and other materials that appear foreign to the body, such as a transplanted liver. Immunosuppressive or anti rejection medicines are used to try to control the body’s immune response to a transplanted liver.
Jaundice — Yellowness of the skin, membranes and body secretions caused by increased levels of bilirubin.
Liver biopsy — The taking of a small piece of liver tissue so the tissue can be examined for signs of damage, such as the body’s rejection of a transplanted liver. The sample is obtained by inserting a special needle through the abdominal wall into the liver.
MUGA (multigated acquisition) scan — A scan of the heart that uses a radioactive tracer to assess the function of the heart and determine cardiac impairment.
Petechiae — Small spots of blood leakage in the skin or membranes. These are often seen with poor clotting.
Portal hypertension — High blood pressure in the veins of the liver caused by the damage and hardening of the liver around the veins. This high blood pressure forces the blood to be rerouted to other veins so it can return to the heart.
Pruritis — The medical term for itch. Pruritis may be caused by high levels of bilirubin.
Rejection — The body’s attempt to protect itself from foreign tissues, such as a new liver. Immunosuppressive or anti rejection medicines are used to try to prevent this.
Sclerotherapy — Treatment of varicose (swollen) veins by injecting chemicals that cause clotting and hardening of the veins. It’s often done to prevent bleeding from the vessels into the esophagus or stomach.
Sepsis — Severe infection in the bloodstream.
T tube — A small, soft tube that is temporarily inserted into the large bile duct to allow it to heal after liver transplant surgery without scarring and bile blockage.
Ultrasound — The use of sound waves to produce a picture of the inside of the body. Often used to detect masses or abscesses, or to determine bile duct size and blood flow in the liver veins.
Varices — Swollen blood vessels often found in the stomach, esophagus and intestines when there is high pressure in the liver veins.
A
Acute – sudden and severe.
Alanine aminotransferase (ALT) and and aspartate aminotransferase (AST) – enzymes produced mainly in the liver.
Albumin – a protein made by the liver. Controls fluid in the blood and tissues.
Alkaline phosphatase (ALP,ALK PHOS) – an enzyme produced in the bile ducts and elsewhere in the body.
Anaemia – a lack of iron can lead to a person having fewer red blood cells than usual. There can also be other causes.
Anastomosis – a connection made surgically between two tubes.
Angiogram – a scan using x rays to see blood vessels. It can be used to see the blood vessels which supply the liver.
Antibody – a protein which fights infection.
Ascites – fluid collecting in the abdomen.
Atresia – blocked, destroyed or missing.
Autoimmune (autoantibodies) – an immune response against the body’s own tissue.
Banding – a treatment for varices. Surgical elastic bands are placed around the varices during an endoscopy.
Bile – a green,yellow liquid containing bile salts, bilirubin and cholesterol.
Bile acids – acids found in bile which can be converted into bile salts.
Biliary tract – the system of tubes which carry bile from the liver and gall bladder and drain into the intestine.
Bilirubin – this is a product of the breakdown of old red blood cells. It has a yellow colour which gives stool and blood their colour. Bilirubin travels in the blood stream to the liver where it has a sugar added and becomes conjugated bilirubin. Before this sugar is added it is known as unconjugated bilirubin.
Biopsy (liver) – a procedure to take a small sample of the liver to test in the laboratory.
Body Mass Index (BMI) – a test using height and weight to measure whether an individual is a healthy weight.
Cannula – a short, soft, narrow plastic tube temporarily put into a vein so medicines,fluids,blood etc. can be given intravenously (IV) as needed.
Cardiac – refers to the heart.
Cardiovascular system – the heart and blood vessels which transport nutrients and oxygen around the body.
Carrier – someone who has a gene which can cause a genetic condition but doesn’t have the condition themselves.
Cell – basic structural and functional component of all living things.
Central venous line (CVL) – a central line is similar to a cannula but is a longer tube used to give medicine, fluid, nutrition or blood directly into a larger vein and can also be used to take blood samples. It is a long, narrow plastic tube which can be placed into a vein in the neck, chest or groin and is used for longer than a cannula. It is usually inserted under a general anaesthetic.
Cholangitis – inflammation or infection of bile ducts which can cause poor bile flow from the liver and liver damage.
Cholestasis – reduction or blockage of bile flow.
Chronic Hepatitis – inflammation of the liver that lasts over a period of time. Liver cells may be destroyed by the inflammation.
Chronic – an illness or condition which lasts over a period of time.
Cirrhosis – scarring of the liver when liver cells are damaged and destroyed. Scarring can stop blood flowing through the liver properly leading to further damage. The liver becomes smaller, hardens and can’t function properly. Cirrhosis cannot be reversed.
Coagulopathy – refers to any condition where the blood cannot clot properly.
Computerised tomography scan (CT Scan) – x rays are used to create a detailed picture of different parts of the body.
Congenital – a condition which is present from birth.
Cystic – relating to the gall bladder.
Cytomegalovirus (CMV) – a virus belonging to the herpes virus group.
Distension – expansion or enlargement.
Duct – a tube which fluid can pass through from one part of the body to another, e.g. bile ducts.
Dysplasia – the abnormal development of body tissue or an organ.
Echocardiogram (Echo) – a scan of the heart using high frequency sound waves, similar to an ultrasound of the abdomen.
Electrocardiogram (ECG) – records the electrical activity of the heart.
Encephalopathy – changes in the brain which can be due to liver failure. The build up of toxins in the blood can lead to tiredness, irritability and personality changes.
Endoscopic retrograde cholangiopancreatography (ERCP) – a special x ray used to examine bile ducts under general anaesthetic.
Endoscopy – using a flexible, thin tube with a camera attached to look at the inside of the upper end of the digestive system. It is passed through the mouth and down the oesophagus (food tube).
Enteral feeding – feeding through a tube directly into the stomach or part of the intestine.
Enzyme – substances in the body which help chemical reactions to take place.
Epstein Barr virus (EBV) – a virus which causes glandular fever.
Faeces – also known as stool or poo.
Fibrosis – scar tissue which replaces normal tissue which, when extensive, is known as cirrhosis.
Full blood count (FBC) – a blood test measuring all of the different types of cells in the blood.
Fulminant – a severe, sudden form of liver failure. More commonly known as acute liver failure.
Gallbladder – a small sac which stores and releases bile made by the liver.
Gallstones – the stones which can be formed by bile and collect in the gall bladder and bile ducts. They can cause pain and may pass into the common bile duct and cause cholangitis or obstructive jaundice.
Gamma Glutamyl Transferase (also known as Gamma
Glutamyltranspeptidase (Gamma GT (GGT)) – an enzyme produced mostly by the bile ducts.
Gastroenterology – study of the digestive system.
General anaesthetic – an individual is put into a state of controlled unconsciousness.
Genes – genes are made up of DNA and provide instructions for the body.
Graft – an organ, tissue or cells used for transplantation.
Haematemesis – vomiting (sickness) blood.
Haemoglobin – part of a red blood cell which carries oxygen around the body.
Hepatic – referring to the liver.
Hepatic artery – the blood vessel which brings blood with oxygen to the liver.
Hepatic vein – the blood vessel which takes blood away from the liver.
Hepatitis – inflammation of the liver.
Hepatology – study of the liver.
Hepatomegaly – enlargement of the liver.
Hypo,hypertension – low,high blood pressure.
Idiopathic – something which doesn’t have a known cause.
Immune system – the body’s defence which fights against foreign substances in the body such as bacteria and viruses.
Immunity – protection against a particular disease. This can happen naturally or due to vaccination.
Immunoglobulin – a protein which plays a role in the immune system.
Immunosuppression – medications which can be taken which make the immune system less active.
Incidence – the number of new cases of a disease over a certain period of time in a set population.
International normalised ratio (INR) – a measure of how well blood clots.
Intravenous – into the vein. Some drugs are delivered straight into the veins.
Jaundice – a high level of bilirubin in the blood leading to the yellowing of the skin and,or the whites of the eyes.
Kasai portoenterostomy – an operation to get bile flowing from the liver to the intestine in biliary atresia. Bile ducts are removed and a piece of intestine is used to replace the ducts.
Liver function tests (LFT) – blood tests which can show how well the liver is working.
Liver transplant – an operation to replace a damaged liver with a donor liver.
Auxiliary liver transplant – where part of a donor liver is placed alongside the child’s own liver.
Orthotopic liver transplant – where the child’s liver is replaced by all of part of a donor liver.
Lymph – a clear, watery liquid derived from body tissues which carries white blood cells and fats. It travels through the lymphatic system of the body.
Magnetic resonance imaging (MRI) – a detailed scan of the body using magnets rather than x ray.
Malabsorption – the body doesn’t absorb nutrients properly when we eat them.
Metabolism – the processes in the body which break down and build up different chemicals.
Metabolic disorder – a condition in which metabolism is affected.
Nasogastric (NG) feeding – giving food through a tube which goes through the nose and down the throat to the stomach.
Nasogastric tube – the tube used during NG feeding above.
Nasojejunal (NJ) tube – a small tube that is passed up the nose and down the throat, through the stomach, and into the small intestine used for feeding.
Oedema – also known as fluid retention, fluid builds up in the tissues affected.
Parenteral nutrition (PN) – feeding nutrients directly into the vein when an individual cannot eat normally.
Percutaneous Transhepatic Cholangiography (PTC) – a special x ray which looks at the bile ducts. It is done under a general anaesthetic using a needle which is inserted through the skin of the abdomen into the bile ducts. It can be used to diagnose and treat a variety of bile duct issues.
Phlebotomist – a person who takes blood samples.
Platelets – part of the blood and important for clotting the blood. They can be low in people with liver disease.
Polymerase Chain Reaction (PCR) – a test which checks if a virus is present in the blood. A positive result means the virus is present.
Portal Hypertension – high blood pressure in the portal vein which may occur due to scarring of the liver or a blockage of the portal vein.
Portal Vein – main vein carrying blood from the intestine to the liver.
Pruritus – itching of the skin.
Pulmonary – refers to the lungs.
Rejection – when the body’s immune system attacks a transplanted organ. It can be acute (sudden) or chronic (over a period of time).
Renal – refers to the kidneys.
Respiratory – refers to breathing.
Sclerotherapy – a treatment for varices where a solution is injected into them during an endoscopy.
Screening – testing for a condition or the genes for a condition.
Spider Naevi – small, broken veins under the skin which can look like red spiders.
Spleen – an organ which removes old blood cells. Its blood supply is connected to the liver.
Splenomegaly – an enlarged spleen.
Split bilirubin test – a blood test which measures how much conjugated and unconjugated bilirubin is in the blood. See ‘bilirubin’ for more information.
Steroids – medication which reduces the activity of the body’s immune system.
Thrombosis – a blood clot in a vein or artery.
TPR – an abbreviation for temperature, pulse and respiration.
Triglycerides – a type of fat.
TTA and TTO – abbreviation for ‘to take away’ or ‘to take out’ referring to medicines which are taken home.
Ultrasound scan (USS) – a scan which takes pictures of organs and blood vessels inside the body.
Urea and electrolytes – may be called ‘U & E’s or kidney function tests. They are monitored to see how well the kidneys are working.
Varices – veins in the lining of the intestine, oesophagus and stomach which can be enlarged and swollen due to portal hypertension and can bleed if not treated.
Viral load – a viral load test is a lab test that measures the number of virus particles in a millilitre of blood.
Xanthomas – cholesterol deposited under the skin which can look like pale warts.
AASLD American Association for the Study of Liver Diseases.
AIH Autoimmune hepatitis.
Alanine aminotransferase (ALT) measured in a liver blood test. See Blood tests.
Albumin a protein measured in a liver blood test. See Blood tests.
Alkaline phosphatase (ALP) measured in a liver blood test. See Blood tests.
ALP alkaline phosphatase.
ALT alanine aminotransferase.
Anastomosis a join.
AST aspartate aminotransferase.
Advanced liver disease when the liver is severely damaged with a lot of scarring such that it fails to do all the jobs it’s meant to do.
Aspartate aminotransferase (AST) measured in a liver blood test. See Blood tests.
Asymptomatic showing no symptoms.
Autoimmune hepatitis (AIH) an autoimmune liver disease where the body’s immune system attacks its own liver cells. See Autoimmune hepatitis.
Bacterial cholangitis an infection of the bile duct requiring urgent treatment. See Bacterial cholangitis.
Balloon dilatation a procedure to open up the bile duct using a small balloon to widen the duct. See ERCP.
BASL British Association for the Study of the Liver.
Bile a greenish yellow fluid produced by the liver to help digest fats and essential vitamins. See Overview of PSC.
Bile ducts tubes that deliver bile from the liver to the small intestine. See Overview of PSC.
biliary this describes the bile duct system. It is a series of tubes that drain out the bile and does actually have the appearance of a tree with lots of branches! See Overview of PSC.
Biliary tract or biliary system refers to the liver, gallbladder, bile ducts and pancreas. See Overview of PSC.
Bilirubin measured in a liver blood test; what makes people turn yellow if levels are very high. See Blood tests.
Biomarker something measurable which is used as a means of assessing the severity or the progression of a biological process or disease.
BMI body mass index. It is a measure of your weight and height. See PSC: Eating for health.
CBD common bile duct.
CCA cholangiocarcinoma.
Cholangiocarcinoma bile duct cancer. See Cancer.
Cholangiocytes cells in the bile ducts.
Cholangitis inflammation of the bile ducts. See also bacterial cholangitis.
Cholestatic relating to the bile ducts,biliary system.
Classical PSC refers to PSC that affects both the large and small bile ducts. See Variants of PSC.
Coexisting disease refers to having more than one disease at a time, also called comorbidity.
Colectomy a surgical procedure to remove the whole of the colon,large bowel through an incision in your abdomen. See Colectomy type and PSC transplant.
Colonoscopy an examination of your large bowel (colon). See Colonoscopy.
Common bile duct this is the largest tube in the biliary system, sometimes abbreviated to CBD. See Overview of PSC.
Comorbidities refers to having more than one condition or disease at the same time.
DBD donation after brainstem death (in liver transplantation). See ‘DCD liver transplant in PSC’ and ‘Are some liver transplant better than others?’
DCD donation after circulatory death (in liver transplantation). See ‘DCD liver transplant in PSC’ and ‘Are some liver transplant better than others?’
Decompensated liver when the liver fails to do the jobs it is meant to do.
Dominant strictures (DS) tight narrowing causing a point blockage in the extrahepatic bile ducts. Also see stricture. See Overview of PSC.
DS dominant stricture.
Duct to duct biliary anastomosis – in transplant surgery where the bile duct of the donor liver is attached to the cut end of the bile duct in the recipient of the liver transplant. See Liver transplant.
Dysbiosis an imbalance in the types and numbers of the (usual) microbiome.
EASL European Association for the Study of the Liver.
ELF Enhanced Liver Fibrosis test. See Blood tests.
End ileostomy an opening in the tummy, which allows the gut’s contents to drain into a bag attached to the skin – created after surgery to remove the colon (also see colectomy).
Endoscopic retrograde cholangiopancreatography (ERCP) a procedure that allows your doctor to look inside your bile ducts usually done with the purpose of treating a problem such as a blockage (stricture), stones or both in the reachable (usually extrahepatic) bile ducts. See ERCP.
Enhanced Liver Fibrosis (ELF) test a blood test that looks at early fibrosis signs.
ERCP Endoscopic retrograde cholangiopancreatography.
Extrahepatic bile ducts the bile ducts outside the liver.
Fibroscan (transient elastography) a scan that measures liver stiffness (fibrosis). See Fibroscan.
Gallbladder a small, pouch like organ close to your liver that stores bile. You don’t need a gallbladder, so surgery to take it out is often recommended if you develop any problems with it, especially in PSC.
Gamma Glutamyl Transferase (GGT) measured in a liver blood test. See Blood tests.
Gastroscopy a procedure to look inside the oesophagus, stomach and duodenum. Also called an oesophago gastroduodenoscopy (OGD). See Gastroscopy.
GGT Gamma Glutamyl Transferase.
GWAS Genome wide association study (or studies). See Genetics of PSC.
HCC Hepatocellular carcinoma.
HCP Healthcare professional.
HE Hepatic Encephalopathy.
Hepatic encephalopathy – a state of confusion or decreased consciousness seen in liver failure. See Complications in PSC.
Hepatobiliary relating to the liver and gallbladder, bile ducts or bile.
Hepatocellular carcinoma (HCC) a cancer that arises in the liver (rather than one that spreads there). See Cancer.
Hepatocytes liver cells.
HPB (hepatopancreatobiliary) relating to the liver, pancreas or bile ducts.
IAC IgG4 associated cholangitis.
IBD inflammatory bowel disease.
IBD u – inflammatory bowel disease unspecified; this is a variant of IBD where there are some features of Crohn’s disease and some features of ulcerative colitis.
IgG4 RD IgG4 related disease.
IgG4 SC IgG4 related sclerosing cholangitis.
Incidence how many people are newly diagnosed (usually each year). See ‘Who gets PSC?’
Immune mediated disease a disease characterised by overactive or irregular immune system activity.
Inflammatory bowel disease (IBD) a long term condition featuring inflammation in the bowels. See Inflammatory bowel disease.
INR international normalised ratio.
International normalised ratio (INR) provides a measure of the blood’s ability to clot compared with ‘normal’ blood clotting time. See Blood tests.
Intrahepatic bile ducts the bile ducts inside the liver. See Overview of PSC.
IPAA (Ileal pouch anal anastomosis) see Pouch
IPSCSG International PSC Study Group.
Jaundice a yellowish tinge to the skin, often seen in the whites of the eyes caused by a build up of bilirubin in the blood and tissues. See Complications in PSC.
LDLT live donor liver transplantation.
Live donor liver transplantation (LDLT) where a living person donates part of their liver for a transplant operation. See Can someone I know donate their liver to me?
LTx liver transplantation. See Liver transplantation for PSC.
Machine perfusion a technology that is used in transplantation to better preserve donor livers prior to them being implanted into the recipient of the liver transplant. See Machine perfusion.
Magnetic resonance cholangiopancreatography (MRCP) a type of MRI scan that looks at the bile and pancreas ducts. See MRCP scans.
Magnetic resonance imaging (MRI) a type of scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body. It may be performed with contrast material injected into the bloodstream to better identify the hepatobiliary structures. See MRCP scans.
MDT multidisciplinary team. This usually refers to a meeting of different experts.
MELD (Model for End Stage Liver Disease) a score to estimate the severity of liver disease in patients with advanced liver disease.
Microbiome a collection of different microbes in the digestive system (intestinal microbiota), such as bacteria, yeasts, fungi, viruses and protozoans. See ‘What is the cause of PSC?’
MRCP Magnetic resonance cholangiopancreatography.
MRI Magnetic resonance imaging (MRI).
NLOS (National Liver Offering Scheme) a national scheme to identify the most suitable person waiting for a liver transplant when a donor liver becomes available by selecting the recipient who would be expected to have the greatest benefit (at 5 years) from the time of transplant. See National Liver Offering Scheme.
Opt out this refers to giving consent for organ donation. An opt out or deemed consent system assumes that everyone consents to be an organ donor, unless they actively ‘opt out’ if they do not wish to donate their organs to people awaiting an organ transplant when they die. See Organ donation and PSC.
PBC primary biliary cholangitis (previously called primary biliary cirrhosis). See also ‘Differences between PSC and PBC’
PH Portal hypertension.
Phenotype (of a disease) the physical characteristics of a disease.
Portal hypertension increased blood pressure in the large vein (portal vein) and all its branches that brings the blood from the intestine and spleen to the liver. See ‘Portal hypertension’
Pouch Reconnection of the small bowel to the anus following colectomy through creating pouch made from a portion of the small bowel; see also, colectomy, end ileostomy.
Prevalence how many people have the condition (e.g. PSC) in a population (in a specific region or country) at a particular time. See ‘Who gets PSC?’
Primary occurring without any other obvious precipitating cause.
Primary biliary cholangitis (PBC) an autoimmune liver disease NOT to be confused with PSC. See PBC and PSC.
Primary sclerosing cholangitis (PSC) an autoimmune liver disease where the body’s immune system attacks its own bile duct cells. See ‘What is PSC?’
Prognosis the likely or expected development of a particular complication of a disease. See ‘What will happen to me?’
Prognostic tool or scoring system a method for predicting disease progression. It might be a specific test such as a blood test, or a combination of tests such as clinical factors, blood tests and imaging. See Prognostic tools.
Pruritus another name for itch. See Itch and Tips on managing itch
PSC primary sclerosing cholangitis.
PSC IBD A person who has PSC and IBD (almost always of the colon) has PSC IBD. It is thought to be distinct from the IBD that affects people without PSC. See PSC IBD
Recurrent PSC (rPSC) PSC that returns after you have had a liver transplant. See Variants of PSC.
Roux en Y loop in liver transplantation and biliary surgery, this refers to the way a loop of small bowel is created to join to the bile duct, usually of the donor liver. It involves surgery to divide and re join the bowel together in addition to a join between the small bowel and the bile ducts. See ‘Your liver transplant’.
rPSC recurrent PSC.
RUQ right upper quadrant, meaning the upper right part of your tummy. See also URQ. See ‘Pain’.
Sclerosing hardening or scarring.
Serum liver tests these are blood tests that provide an assessment of the liver and,or its function.
Small duct PSC a variant of PSC that affects the small bile ducts only (i.e. those ducts not visible on an MRCP or ERCP). See ‘Variants of PSC’.
Steatorrhoea fatty stools which are pale, floating, bulky stools often difficult to flush. See ‘PSC: Eating for health’.
Stent in PSC, a stent usually refers to a small tube inserted into the bile duct to help keep it open. See ‘ERCP’.
Stratify to arrange or classify. Usually in PSC, it means to group similar patients according to the presence or absence of certain characteristics.
Surrogate biomarker a measurement or test that is used as a substitute to show how a patient feels, functions, or survives and is expected to predict the effect of the drug or intervention being evaluated over shorter time period than waiting for the expected outcome to occur. See Surrogate biomarkers in PSC.
Strictures the parts of the bile duct that are narrowed or scarred are called strictures. See ‘Overview of PSC’ and ‘ERCP’.
TBS Transplant Benefit Score. See ‘National Liver Offering Scheme’
TIPS transjugular intrahepatic portosystemic shunt. See ‘Portal hypertension’.
Transjugular intrahepatic portosystemic shunt (TIPS) a procedure to place a stent to keep the vein which brings blood from the liver to the heart open. See ‘Portal hypertension’.
Transplant Benefit Score (TBS) a score developed from characteristics of the person waiting for a transplant and the available donor liver to help decide who will get the greatest benefit from a donor liver and hence should be next in line to be offered that donor liver. See ‘National Liver Offering Scheme’.
Type I error also called a false positive error and it happens when a test is checking a single condition, and wrongly gives a positive decision, that is, says it is there when it is not.
Type II error also called a false negative error and it happens when a test is checking a single condition and wrongly gives a negative decision, that is, it says it is not there when it is.
UC ulcerative colitis.
UDCA Ursodeoxycholic acid, or Urso. See ‘UDCA’.
UKELD (United Kingdom Model for End Stage Liver Disease) a scoring system that provides a measure of how severe liver disease is, and the likelihood that a liver transplant is needed.
UK PSC a research group based in the UK made up of leading PSC researchers and specialists and PSC Support. See UK PSC.
Upper Right Quadrant (URQ) the top quarter of your tummy on the right hand side. See ‘Pain’
URQ upper right quadrant. Also see RUQ. See ‘Pain’
Urso Ursodeoxycholic acid, or UDCA. See ‘Is Urso safe and should I take it?’
US ultrasound scan.
Validated a research term that means something has been checked and proved,demonstrated to be accurate.
Variant Syndrome (VS) used in UK liver transplantation to allow listing of patients who have liver disease where the UKELD and Transplant Benefit Score underestimate the need for liver transplantation. See National Liver Offering Scheme.
VS Variant Syndrome. See National Liver Offering Scheme.
Ablation elimination or removal. Ablation also refers to a procedure that eliminates extra electrical pathways within the heart that cause fast or irregular heart rhythms.
ACE (angiotensin converting enzyme) inhibitor A medication that opens up blood vessels, making it easier for the heart to pump blood forward to the body; also used to lower blood pressure.
Acute severe; sharp; begins quickly.
Acute lymphocytic leukemia (ALL) a rapidly progressing cancer of the blood in which too many immature (not fully formed) lymphocytes, a type of white blood cell, are found in the bone marrow, blood, spleen, liver, and other organs.
Acute myelogenous leukemia (AML) a rapidly progressing cancer of the blood in which too many immature (not fully formed) granulocytes, a type of white blood cell, are found in the bone marrow and blood.
Acyanotic refers to a group of congenital heart defects in which there is a normal amount of oxygen in the bloodstream, giving a pink color to the lips and nail beds.
Allogeneic bone marrow transplantation a procedure in which a person receives stem cells from a compatible donor.
Allograft tissue or organ transplanted between genetically non identical individuals of the same species (i.e., human to human).
Alternative therapy use of an unproven therapy instead of standard (proven) therapy.
Alveolus air sac where gas exchange takes place.
Analgesic any drug intended to alleviate pain.
Anastomosis a surgical connection, often between two blood vessels.
Anemia a blood disorder caused by a deficiency of red blood cells or hemoglobin (the oxygen carrying protein in red blood cells).
Anesthesia the loss of feeling or sensation as a result of medications or gases. General anesthesia causes loss of consciousness. Local or regional anesthesia numbs only a certain area.
Anesthesiologist a physician who specializes in administering medications or other agents that prevent or relieve pain, especially during surgery.
Aneurysm a thin, weakened area in a blood vessel or area of the heart.
Angiography an X ray study that uses dye injected into arteries to study blood circulation.
Angioplasty a nonsurgical procedure for treating narrowed arteries.
Antibiotic a medication used to treat infection.
Anticoagulant a medication that keeps blood from clotting.
Antiemetic a medication that helps prevent and control nausea and vomiting.
Antigen a substance that can trigger an immune response, such as a transplant, causing the production of antibodies, a part of the body’s defense mechanism.
Antihypertensive a medication that lowers blood pressure.
Aorta the largest artery in the body and the primary blood vessel which carries oxygenated blood out of the heart to the rest of the body.
Aortic arch the curved portion of the aorta (the large blood vessel that carries oxygen rich blood away from the heart to the body).
Aortic regurgitation backwards leakage of blood from the aorta, through a weakened aortic valve, and into the left ventricle, resulting in stress in the left heart and inadequate blood flow to the body.
Aortic stenosis narrowing of the opening of the aortic valve (the valve that regulates blood flow from the left ventricle into the aorta).
Aortic valve the valve that regulates blood flow from the heart into the aorta.
Apex top portion of the upper lobes of the lungs.
Apheresis a procedure in which a patient’s own blood is removed, particular fluid and cellular elements are extracted from the blood, then returned to the patient.
Aplastic anemia one type of anemia that occurs when the bone marrow produces too few of all three types of blood cells: red cells, white cells, and platelets.
Arrhythmia (also called dysrhythmia) a fast, slow, or irregular heartbeat.
Arterioles small branches of arteries.
Arteriosclerosis ” commonly called “”hardening of the arteries;”” a variety of conditions caused by fatty or calcium deposits in the artery walls causing them to thicken.”
Artery a blood vessel that carries oxygenated blood away from the heart to the body.
Ascites fluid that fills the abdomen when the liver is not functioning properly.
Asplenia absence of the spleen, either from improper development before birth, or due to the surgical removal of the spleen resulting from injury or disease.
Atresia inadequate development of an organ or part of an organ during pregnancy.
Atrial fibrillation a very fast and irregular beating of the atria (the upper two chambers of the heart).
Atrial flutter a very fast beating of the atria (the upper two chambers of the heart).
Atrial septal defect (ASD) a hole in the wall between the right and left atria (the two upper chambers of the heart).
Atrial septum the wall between the right and left atria (the two upper chambers of the heart).
Atrioventricular block an interruption of the electrical signal between the atria and the ventricles.
Atrioventricular canal refers to a congenital heart defect involving an opening low in the atrial septum, an opening high in the ventricular septum, and abnormal development of the mitral and,or tricuspid valves.
Atrioventricular node a cluster of cells between the atria and ventricles that regulate the electrical current.
Atrium (atria pl.) one of two upper chambers in the heart.
Autologous bone marrow transplantation a procedure in which a patient’s own bone marrow is removed, treated with anticancer drugs or radiation, then returned to the patient.
Autosomal recessive inheritance a gene on one of the first 22 pairs of chromosomes, which, when present in two copies, causes a trait or disease to be expressed.
Bacterial endocarditis a bacterial infection of the valves and interior surfaces of the heart.
Balloon angioplasty a procedure usually done in the cardiac catheterization laboratory that uses a catheter (tube) with a balloon in the tip to open up a narrowed valve or blood vessel.
Barium a liquid used to coat the inside of organs so they will show up on an x ray.
Base bottom portion of the lower lobes of the lung, located just above the diaphragm.
Benign noncancerous.
Beta blocker a medication that limits the activity of epinephrine (a hormone that increases blood pressure).
Bicuspid a valve that has two leaflets.
Bilateral affecting both sides.
Bile a digestive fluid made by the liver and stored in the gallbladder that helps digest fats.
Bile ducts tubes that take bile from the liver to the gallbladder and small intestine to aid in digestion.
Biliary atresia a condition in which bile ducts do not have normal openings, preventing bile from leaving the liver. This causes jaundice (yellowing of skin or eyes) and liver damage known as cirrhosis. Biliary atresia is a birth defect.
Bilirubin a normal substance produced when red blood cells break down and are excreted by the liver. Bilirubin gives bile its yellow green color. Too much bilirubin in the blood causes jaundice.
Biopsy a procedure in which tissue samples are removed (with a needle or during surgery) from the body for examination under a microscope; to determine if cancer or other abnormal cells are present.
Bladder a triangle shaped, hollow organ located in the lower abdomen that holds urine.
Blasts immature blood cells.
Blood the life maintaining fluid which is made up of plasma, red blood cells (erythrocytes), white blood cells (leukocytes), and platelets; blood circulates through the body’s heart, arteries, veins, and capillaries; it carries away waste matter and carbon dioxide and brings nourishment, electrolytes, hormones, vitamins, antibodies, heat, and oxygen to the tissues.
Blood banking the process that takes place in the laboratory to ensure that the donated blood or blood products are safe, before they are used in blood transfusions and other medical procedures. Blood banking includes typing and cross matching the blood for transfusion and testing for infectious diseases.
Blood clot a thick, gelled mass of blood.
Blood plasma the fluid part of blood that contains nutrients, glucose, proteins, minerals, enzymes, and other substances.
Blood pressure pressure of blood against the walls of a blood vessel or heart chamber.
Blood pressure cuff a device usually placed around the upper portion of the arm to measure blood pressure.
Bone marrow the soft, spongy tissue found inside bones. It is the medium for development and storage of about 95 percent of the body’s blood cells.
Bone marrow aspiration and biopsy the marrow may be removed by aspiration or a needle biopsy under local anesthesia. In aspiration biopsy, a fluid specimen, is removed from the bone marrow. In a needle biopsy, marrow cells (not fluid) are removed. These methods are often used together.
Bone marrow harvest collection of stem cells with a needle placed into the soft center of the bone, the marrow.
Bone marrow transplant (BMT) the transfusion of healthy bone marrow cells into a person after their own unhealthy bone marrow has been eliminated.
Bowel small and large intestine.
Bowel movement passage of stool (body wastes) from the large intestine through the rectum and anus.
Brady suffix meaning slow.
Bradycardia abnormally slow heartbeat.
Bronchiole a small airway (subdivision of the bronchus) that leads to areas of the lung and absorbs oxygen from the air.
Bronchiolitis inflammation that involves the bronchioles (small airways).
Bronchoscopy a fiberoptic, flexible tube is passed through the mouth into the bronchi to locate tumors or blockages, and to gather samples of tissue and,or fluid.
Bronchus one of two large subdivisions of the trachea through which air passes to and from the lungs.
Bundle branch block a condition in which the heart’s electrical system is unable to normally conduct the electrical signal.
Calcium channel blocker a medication that lowers blood pressure.
Cancer cell a cell that divides and multiplies uncontrollably and has the potential to spread throughout the body, crowding out normal cells and tissue.
Capillaries tiny blood vessels between arteries and veins that distribute oxygen rich blood to the body.
Carbohydrates one of three main types of foods, along with proteins and fats; found in breads, cereals, grains, fruits, and vegetables; changes into a simple sugar called glucose during digestion; provides the body with a source of energy.
Carcinogen an agent (chemical, physical, or viral) that causes cancer. Examples include tobacco smoke and asbestos.
Cardiac pertaining to the heart.
Cardiac arrest the stopping of the heartbeat.
Cardiac catheterization a diagnostic procedure in which a tiny, hollow tube (catheter) is inserted into an artery or vein in order to evaluate the heart and blood vessels.
Cardiac output total amount of blood being pumped by the heart over a particular period of time.
Cardiologist a doctor who specializes in the medical evaluation and treatment of heart diseases.
Cardiology the clinical study and practice of treating the heart.
Cardiomyopathy a disease of the heart muscle that causes it to lose its pumping strength.
Cardiovascular (CV) pertaining to the heart and blood vessel (circulatory) system.
Cardioversion the procedure of applying electrical shock to the chest to change an abnormal heartbeat into a normal one.
Carotid artery the major arteries in the neck that supply blood to the brain.
Catheter a flexible tube used to drain fluid from or inject fluid into the body. The most common catheters are the Foley catheter, used to drain urine from the bladder, and intravenous (IV) catheters inserted into veins to administer fluids.
Cecum the beginning of the large intestine; attached to the last section of the small intestine, known as the ileum.
Chemotherapy a medication that can help fight cancer.
Child life specialist a hospital staff member who has special training in the growth and development of children. A Child Life Specialist can help your child with play activities, relaxation and pain management skills and help meet the educational and emotional needs of the entire family.
Cholangiography X rays of the bile ducts.
Cholesterol a substance normally made by the body, but also found in foods from animal sources, like beef, eggs, and butter. Too much cholesterol in the body can lead to narrowing and blockage of the arteries, especially those that feed the heart and keep it healthy. High cholesterol can also cause the formation of gallstones. Ideally, blood cholesterol levels should be less than 200mg,dL.
Chromosome structures in our cells that carry genes, the basic units of heredity. Humans have 23 pairs of chromosomes, one member of each pair inherited from the mother, the other from the father. Each chromosome can contain hundreds or thousands of individual genes.
Chronic referring to a disease or disorder that usually develops slowly and lasts for a long period of time.
Chronic myelogenous leukemia (CML) a slowly progressing cancer of the blood in which too many white blood cells are produced in the bone marrow.
Cineangiography the procedure of taking moving pictures to show the passage of dye through blood vessels.
Circulatory system pertaining to the heart and blood vessels and the circulation of blood.
Cirrhosis a chronic problem that makes it hard for the liver to remove toxins (poisonous substances) from the body. Alcohol, medications, and other substances may build up in the bloodstream and cause problems. Cirrhosis is a result of scarring and damage from other diseases, such as biliary atresia and alcoholism.
Closed heart surgery an operation that repairs problems involving the blood vessels attached to the heart and may not need the use of the heart lung bypass machine.
Clotting the sealing of a blood vessel with coagulated blood.
Coarctation of the aorta a congenital heart defect that results in narrowing of the aorta.
Collateral vessels new blood vessels that are created by the body to provide extra blood flow to an area when the blood vessel(s) that are already there are too small, narrowed, or blocked.
Colon the large intestine.
Colonoscopy a test using a long, flexible tube with a light and camera lens at the end, which examines the large intestine.
Common bile duct a tube that moves bile from the liver to the small intestine.
Complete blood count (CBC) a measurement of size, number, and maturity of different blood cells in a specific volume of blood.
Compliance fulfillment by the patient of the prescribed orders of treatment (i.e., taking medications after a transplant).
Computed tomography scan (also called a CT or CAT scan) a diagnostic imaging procedure that uses a combination of X rays and computer technology to produce horizontal, or axial, images (often called slices) of the body. A CT scan shows detailed images of any part of the body, including the bones, muscles, fat, and organs. CT scans are more detailed than general x rays.
Conduction system the electrical system inside the heart that stimulates the heart to beat.
Congenital present at birth.
Congenital heart defect a heart problem present at birth, caused by improper development of the heart during fetal development.
Congenital heart disease see congenital heart defect.
Congestive heart failure a condition in which the heart cannot pump out all of the blood that enters it, which leads to an accumulation of blood in the vessels leading to the heart and fluid in the body tissues. Excess blood in the pulmonary (lung) blood vessels can also occur, leading to fluid accumulation in the lungs.
Constrict tighten; narrow.
Coronary arteries two arteries that come from the aorta to provide blood to the heart muscle.
Corticosteroids medications that reduce irritation and inflammation.
Culture a laboratory test that involves the growing of bacteria or other microorganisms to aid in the diagnosis.
Cyanosis bluish color in the skin because of insufficient oxygen.
Cyanotic appearing blue, due to insufficient oxygen in the blood.
Cystoscopy (also called cystourethroscopy) an examination in which a scope, a flexible tube and viewing device, is inserted through the urethra to examine the bladder and urinary tract for structural abnormalities or obstructions, such as tumors or stones.
Cystourethrogram (also called a voiding cystogram) a specific X ray that examines the urinary tract. A catheter (hollow tube) is placed in the urethra (tube that drains urine from the bladder to the outside of the body) and the bladder is filled with a liquid dye. X ray images will be taken as the bladder fills and empties. The images will show if there is any reverse flow of urine into the ureters and kidneys.
Defibrillator an electronic device used to establish normal heartbeat.
Dehydration when the bloodstream and the cells of the body contain less fluid than normal, often due to vomiting or diarrhea. The body’s mineral balance may also be affected.
Descending colon the portion of the large intestine located on the left side of the body.
Dextrocardia ” a heart that is “”flipped over, “” so that the structures that are normally on the right side of the chest are on the left, and vice versa. The arteries and veins are connected correctly; occurs due to an abnormality in heart development during pregnancy.”
Dialysis a medical procedure to remove wastes and additional fluid from the blood after the kidneys have stopped functioning.
Diaphragm primary muscle used for respiration, located just below the lung bases.
Diastole the time during each heartbeat when the ventricles are at rest, filling with blood and not pumping.
Diastolic blood pressure the lowest blood pressure measure in the arteries, which occurs between heartbeats.
DiGeorge syndrome (also known as Shprintzen, velo cardio facial, and 22q11.2 deletion syndrome) A genetic disease caused by a missing piece of chromosome material on chromosome #22 that results in many different health problems, and affects the normal fetal development of the heart, thymus, and parathyroid glands.
Digestion how the body breaks down food and uses it for energy, cell repair, and growth. Digestion starts in the mouth, continues in the stomach and small intestine, and is completed in the large intestine. The liver and pancreas add enzymes and juices that aid in this process.
Digestive tract the organs that are involved in digestion, including the mouth, salivary glands, esophagus, stomach, pancreas, liver, gallbladder, small intestine, and large intestine.
Dilate relax; expand.
Distention swelling or bloating, usually referring to the abdomen.
Diuretic a medication that helps the kidneys to remove excess fluids from the body, lowering blood pressure as well as decreasing edema (swelling).
Doppler ultrasound A procedure that uses sound waves to evaluate heart, blood vessels, and valves.
Double outlet right ventricle a congenital heart defect in which both the aorta and the pulmonary artery are connected to the right ventricle.
Down syndrome (also called trisomy 21) A combination of birth defects caused by the presence of an extra #21 chromosome in each cell of the body. Many children with Down syndrome also have congenital heart disease usually atrioventricular canal defect.
Ductus arteriosus a connection between the aorta and the pulmonary artery that is necessary in fetal life, but becomes unnecessary after birth.
Dyspnea shortness of breath or a difficulty in breathing.
Dysrhythmia (also called arrhythmia) a fast, slow, or irregular heartbeat.
Ebstein’s anomaly Abnormal development of the tricuspid valve during pregnancy, causing an abnormally positioned valve that does not open easily (stenosis) and allows backflow of blood from the right ventricle into the right atrium (regurgitation).
Echocardiogram (echo) a procedure that evaluates the structure and function of the heart by using sound waves recorded on an electronic sensor which produce a moving picture of the heart and heart valves.
Edema swelling due to the buildup of fluid.
Effusion a collection of fluid in a closed cavity.
Ejection fraction the measurement of the amount of blood pumped out of the ventricles.
Electrocardiogram (ECG or EKG) a test that records the electrical activity of the heart, shows abnormal rhythms (arrhythmias or dysrhythmias), and detects heart muscle damage.
Electroencephalogram (EEG) a procedure that records the brain’s continuous electrical activity by means of electrodes attached to the scalp.
Electrolytes minerals in the bloodstream and in the cells of the body, such as sodium (salt), potassium, and calcium. Electrolytes must remain in proper balance for the body to function normally.
Electrophysiological study (EPS) a cardiac catheterization to study electrical current in patients who have arrhythmias.
Endocarditis a bacterial infection of the valves and interior surfaces of the heart.
Endocardium the membrane that covers the inside surface of the heart.
Endoscope a small, flexible tube with a light and a camera lens at the end used to examine the inside of the digestive tract. It can also be used to take tissue samples for testing from inside the digestive tract.
Endoscopy a test that uses an endoscope to examine the inside of part of the digestive tract.
End stage organ disease a disease that leads to functional failure of an organ, such as cardiomyopathy (heart).
End to end anastomosis surgical connection of two segments of blood vessel by stitching the open end of one segment to the open end of another segment.
Enema a liquid placed into the rectum to either clear stool out of the large intestine or to examine the large intestine with an x ray (barium enema).
Enlarged heart a condition of the heart in which it is larger than normal.
Enuresis involuntary discharge of urine usually during sleep at night; bedwetting beyond the age when bladder control should have been established.
Eosinophils a type of white blood cell that can increase in allergy and other infections.
Epicardium the membrane that covers the outside of the heart.
Esophagus the tube that connects the mouth to the stomach.
Excrete remove waste from the body.
Exercise electrocardiogram (ECG or EKG) a test that assesses cardiac rhythm and function during exercise on a treadmill or bicycle.
Expiration exhaling; giving off carbon dioxide.
Factor a protein in the blood that is needed to form a blood clot.
Fats one of three main types of foods, along with proteins and carbohydrates; provides the body with a source of energy; needs bile in order to be digested properly and utilized for energy.
Fibrillation rapid contractions of the heart muscles.
Fluoroscopy an X ray procedure that takes continuous pictures to evaluate moving structures within the body, such as the heart.
Flutter ineffective contractions of the heart muscles.
Fontan procedure A surgical procedure performed to repair heart defects in which only one ventricle is functional. It connects the right atrium to the pulmonary artery, allowing oxygen poor (blue) blood from the body to flow into the lungs.
Foramen ovale a hole between the right and left atria, present in all unborn children, that remains open after birth for variable periods of time.
Gallbladder stores bile made by the liver; sends bile into the small intestine to help digest fats.
Gas air that collects in the stomach and intestines as a natural result of digesting food; passed out of the body via the rectum or the mouth.
Gastric related to the stomach.
Gastrointestinal relating to the digestive tract.
Gastrointestinal tract (also called the digestive tract) the parts of the body that break down food into small particles, allowing nutrients from food to be used for energy and growth: the mouth, esophagus, stomach, pancreas, liver, gallbladder, small intestine, and large intestine.
Gene a segment of DNA that codes for a trait such as blood type or eye color, as well as susceptibility to certain diseases.
Gene therapy inserting a normal gene into a person to replace a non working or missing gene.
Genetic determined by genes or chromosomes.
Glenn shunt a surgical connection between the superior vena cava and the right pulmonary artery, allowing oxygen poor (blue) blood to flow into the lungs.
Glomerulonephritis a type of glomerular kidney disease in which the kidneys’ filters become inflamed, scarred and slowly lose their ability to remove wastes and excess fluid from the blood to make urine.
Glomerulosclerosis the term used to describe scarring that occurs within the kidneys in the small balls of tiny blood vessels called the glomeruli. The glomeruli assist the kidneys in filtering urine from the blood.
Glucose a simple sugar made by the body from carbohydrates in food. Glucose is the body’s main source of energy.
Graft transplanted organs, tissues, or cells.
Graft versus host disease (GVHD) the condition that results when the immune cells of a transplant (usually of bone marrow) react against the tissues of the person receiving the transplant.
Granulocytes a type of white blood cells. The different types of granulocytes include basophils, eosinophils, and neutrophils.
Heart attack (also called myocardial infarction) occurs when one or more regions of the heart muscle experience a severe or prolonged decrease in oxygen supply caused by a blocked blood flow to the heart muscle.
Heart block interrupted electrical impulse to heart muscles.
Heartbeat one complete contraction of the heart.
Heart lung bypass machine a machine that performs for the heart and lungs during open heart surgery.
Heart valve prolapse a condition of the heart valve in which it is partially open when it should be closed.
Hematocrit the measurement of the percentage of red blood cells found in a specific volume of blood.
Hematologist a physician who specializes in the functions and disorders of the blood.
Hematology the scientific study of blood and blood forming tissues.
Hematopoiesis the process of producing and developing new blood cells.
Hematuria the presence of red blood cells in the urine.
Hemoglobin a type of protein in the red blood cells that carries oxygen to the tissues of the body.
Hemoglobin S beta thalassemia having one copy of the gene that causes sickle cell anemia (HbS) and one copy of a mutated gene in the beta chain of hemoglobin; this blood disorder produces a moderate anemia and some symptoms similar to sickle cell anemia.
Hemolytic anemia one type of anemia in which the red blood cells are destroyed prematurely.
Hemolytic uremic syndrome a rare kidney disorder that mostly affects children under the age of 10. It is often characterized by damage to the lining of blood vessel walls, destruction of red blood cells, and,or kidney failure.
Hemophilia (also called a coagulation disorder) an inherited bleeding disorder caused by low levels, or absence of, a blood protein that is essential for clotting; hemophilia A is caused by a lack of the blood clotting protein factor VIII; hemophilia B is caused by a deficiency of factor IX.
Hemorrhagic anemia anemia caused by a sudden loss of a large amount of blood.
Hepatic relating to the liver.
Hepatitis inflammation of the liver that sometimes causes permanent damage; caused by viruses, drugs, alcohol, or parasites. Hepatitis has the following forms:
Hepatitis A a form of infectious hepatitis caused by the hepatitis A virus. The virus may be spread by fecal oral contact, fecal infected food or water, and may also be spread by a blood borne infection (which is rare).
Hepatitis B a form of infectious hepatitis caused by the hepatitis B virus. Transmission of the hepatitis B virus occurs through blood and body fluid exposure, such as blood, semen, vaginal secretions, or saliva.
Hepatitis C a form of infectious hepatitis caused by the hepatitis C virus. Transmission of the hepatitis C virus occurs primarily from contact with infected blood, but can also occur from sexual contact or from an infected mother to her baby.
Hepatitis D a form of infectious hepatitis caused by the hepatitis (Delta) virus. This form of hepatitis can only occur in the presence of hepatitis B. Transmission of hepatitis D occurs the same way as hepatitis B.
Hepatitis E a form of infectious hepatitis caused by the hepatitis E virus. This form of hepatitis is similar to hepatitis A. Transmission occurs through fecal oral contamination. Hepatitis E is most common in poorly developed countries and is rarely seen in the US.
Hepatitis G the newest form of infectious hepatitis. Transmission is believed to occur through blood and is seen in IV drug users, individuals with clotting disorders, such as hemophilia, and individuals who require hemodialysis for renal failure.
Hepatoblastoma cancer that originates in the liver.
High density lipoprotein (HDL) ” the “”good”” cholesterol that promotes breakdown and removal of cholesterol from the body.”
Holter monitor A portable EKG machine worn for a 24 hour period or longer to evaluate irregular, fast, or slow heart rhythms while engaging in normal activities.
Homograft a blood vessel taken from a tissue donor, used to replace a defective blood vessel, most often the pulmonary artery or aorta.
Hyperbilirubinemia too much bilirubin in the bloodstream, due to liver problems; causes a yellow color of the skin known as jaundice.
Hypertrophic obstructive cardiomyopathy (also called HOCM, hypertrophic cardiomyopathy, asymmetrical septal hypertrophy, or ASH, or idiopathic hypertrophic subaortic stenosis, or IHSS) enlarged heart muscle that causes impeded blood flow.
Hypoplastic refers to an abnormally small organ or blood vessel due to abnormal development prior to birth.
Hypoplastic left heart syndrome a congenital heart defect in which the left side of the heart is poorly developed, resulting in a small mitral valve, left ventricle, and aorta.
Hypotension low blood pressure.
Hypoxia abnormal oxygen content in the organs and tissues of the body.
IgE antibody One of the antibodies made by the body found mostly in the skin, nose, lining of the airways, and lungs; involved in allergic reactions.
Ileum the lower end of the small intestine.
Imaging studies methods used to produce a picture of internal body structures. Some imaging methods include x rays, CT scans, magnetic resonance imaging (MRI), and ultrasound.
Immune system the system composed of lymph fluid, lymph nodes, the lymphatic system, and white blood cells that are responsible for protecting the body against infection and disease.
Immunosuppression a state in which the ability of the body’s immune system to respond is decreased. This condition may be present at birth, or it may be caused by certain infections (such as human immunodeficiency virus, or HIV), or by certain cancer therapies, such as cancer cell killing (cytotoxic) drugs, radiation, and bone marrow transplantation.
Immunosuppressive medications medications that suppress the body’s immune system; used to minimize rejection of transplanted organs.
Immunotherapy treatments that promote or support the body’s immune system response to a disease such as cancer.
Incision a cut made with a surgical instrument during an operation.
indigestion feeling of nausea, bloating, gas, and,or heartburn caused by poor digestion.
Infection the invasion of the body by microorganisms that cause disease.
Inferior vena cava the large blood vessel (vein) that returns blood from the legs and abdomen to the heart.
Informed consent a legal document that explains a course of treatment, the risks, benefits, and possible alternatives; the process by which patients agree to treatment.
Inspiration inhaling; taking in oxygen.
Insufficiency a valve deformity that allows the blood to leak backwards when the valve is closed.
Insulin a hormone that regulates sugar in the body.
Intestine digestive organs found in the abdomen, also known as either the large or small bowel. The small intestine removes nutrients from food to be used for energy, while the large intestine absorbs water from the digested food and processes it into stool.
Intravenous gamma globulin (IVGG) a protein that contains many antibodies and slows destruction of platelets.
Intravenous (IV) line a thin, plastic tube inserted into a vein (usually in the patient’s forearm) through which a volume of fluid is injected into the bloodstream.
Intravenous pyelogram (IVP) a series of X rays of the kidney, ureters, and bladder with the injection of a contrast dye into the vein to detect tumors, abnormalities, kidney stones, or any obstructions, and to assess renal blood flow.
Iron deficiency anemia the most common type of anemia. It is the lack of iron in the blood, which is necessary to make hemoglobin.
Ischemia decreased flow of oxygenated blood to an organ due to obstruction in an artery.
Ischemic heart disease coronary artery disease or coronary heart disease caused by narrowing of the coronary arteries and decreased blood flow to the heart.
Islet cells cells within the pancreas that secrete insulin and other hormones involved in breaking down sugars.
Jaundice a yellow color of the skin and eyes that is caused by too much bilirubin in the bloodstream.
Jejunum the middle section of the small intestine.
Jugular veins veins that carry blood from the head back to the heart.
Kawasaki disease An immune system disorder affecting the heart, particularly the coronary arteries.
Kidney transplantation a procedure that places a healthy kidney from one person into a recipient’s body.
Kidneys a pair of bean shaped organs located below the ribs toward the middle of the back.
Laparoscope a tube with a light and a camera lens at the end to examine organs and check for abnormalities.
Laparoscopy a procedure that uses a tube with a light and a camera lens at the end (laparoscope) to examine organs, check for abnormalities, or perform minimally invasive surgeries. Laparoscopy is a surgery which avoids making large incisions. Tissue samples may also be taken for examination and testing.
Large intestine (also called the colon) The last section of the digestive tract, from the cecum to the rectum; absorbs water from digested food and processes it into stool.
Larynx (also called voice box) a cylindrical grouping of cartilage, muscles, and soft tissue which contains the vocal cords. The vocal cords are the upper opening into the windpipe (trachea), the passageway to the lungs.
Left atrium the upper left hand chamber of the heart. The left atrium receives oxygen rich (red) blood from the lungs via the four pulmonary veins, and then sends this blood to the left ventricle.
Left ventricle the lower left hand chamber of the heart. The left ventricle receives oxygen rich (red) blood from the left atrium and pumps it into the aorta, which takes the blood to the body. The left ventricle must be strong and muscular in order to pump enough blood to the body to meet its requirements.
Leukemia a cancer of the blood forming tissue. Leukemic cells look different than normal cells and do not function properly.
Lipid a fatty substance in the blood.
Lipoproteins transporters of fatty substances in the blood.
Liver a digestive organ located on the right side of the abdomen, under the ribs; has many important functions, including storing and helping make blood, making bile (which aids in the digestion of fats in the food we eat), processing medicines and removing toxins from the bloodstream, and changing food and fats stored in our bodies into energy.
Liver function tests blood tests that indicate how well the liver is working.
Lobectomy removal of an entire lobe of the lung.
Low density lipoprotein (LDL) the primary cholesterol carrying substance in the body. In large amounts, it accumulates inside arteries.
Lower GI series a study that looks at the rectum, the large intestine, and the lower part of the small intestine. A fluid called barium that shows up well on x rays is given into the rectum as an enema. X rays of the abdomen shows strictures (narrowed areas), obstructions (blockages), and other problems.
Lumen the hollow area inside a blood vessel.
Lung volume the amount of air the lungs hold.
Lymph part of the lymphatic system; a thin, clear fluid that circulates through the lymphatic vessels and carries blood cells that fight infection and disease.
Lymph nodes part of the lymphatic system; bean shaped organs found in the underarm, groin, neck, and abdomen; they act as filters for the lymph fluid as it passes through them.
Lymph vessels part of the lymphatic system; thin tubes that carry lymph fluid throughout the body.
Lymphatic system part of the immune system; includes lymph, ducts, organs, lymph vessels, lymphocytes, and lymph nodes, whose function is to produce and carry white blood cells to fight disease and infection.
Lymphocytes part of the lymphatic system; white blood cells that fight infection and disease.
Lymphocytic leukemia a type of leukemia in which the cancer develops in the lymphocytes (lymphoid cells).
Magnetic resonance imaging (MRI) a diagnostic procedure that uses a combination of large magnets, radiofrequencies, and a computer to produce detailed images of organs and structures within the body.
Malignant a term used to describe cancerous tumors which tend to grow rapidly, can invade and destroy nearby normal tissues, and can spread.
Marfan syndrome A genetic disorder that affects the connective tissue of the body. It causes dilation of blood vessels and abnormalities of cardiac valves.
Mechanical valve an artificial valve used to replace a diseased or defective valve, most often the aortic valve.
Median sternotomy an incision in the center of the chest, from the top to the bottom of the breastbone, used for many congenital heart defect repair surgeries.
Megaloblastic (pernicious) anemia a rare blood disorder in which the body does not absorb enough vitamin B 12 from the digestive tract, resulting in an inadequate amount of red blood cells (RBCs) produced.
Metastasis the spread of tumor cell in other areas of the body.
Mitral valve the valve that controls blood flow between the left atrium and left ventricle in the heart.
Mitral valve prolapse an abnormality of the valve between the left atrium and left ventricle of the heart that causes backward flow of blood from the left ventricle into the left atrium.
Monounsaturated fats dietary fats, such as olive oil or canola oil, that may lower LDL cholesterol levels.
Mucositis inflammation of the mouth and gastrointestinal tract.
Murmur a blowing or rasping sound heard while listening to the heart that may or may not indicate problems within the heart or circulatory system.
Mutation a change in a gene.
Myelogenous leukemia a type of leukemia in which the cancer develops in the granulocytes or monocytes (myeloid cells).
Myelogram an X ray of the spine, similar to an angiogram.
Myeloproliferative disorders diseases in which the bone marrow produces too many of one of the three types of blood cells: red blood cells, which carry oxygen to all the tissues in the body; white blood cells, which fight infection; and platelets, which cause blood to clot.
Myocardial infarction (also called heart attack) occurs when one of more regions of the heart muscle experience a severe or prolonged decrease in oxygen supply caused by blocked blood flow to the heart muscle.
Myocardial ischemia insufficient blood flow to part of the heart.
Myocarditis inflammation of the heart muscles.
Myocardium the muscular layer of the heart.
Nephrectomy surgery to remove the kidney; the most common treatment for kidney cancer.
Nephrologist a doctor who specializes in diseases of the kidneys.
Nephrology the medical specialty concerned with diseases of the kidneys.
Nephrotic syndrome a condition characterized by high levels of protein in the urine, low levels of protein in the blood, tissue swelling, and high cholesterol.
Neuroblastoma cancer occurring in the nerve cells.
Neurosurgeon a doctor specializing in operations to treat disorders of the nervous system.
Noninvasive procedure a diagnostic effort or treatment that does not require entering the body or puncturing the skin.
Occluded artery an artery that is narrowed by plaque that impedes blood flow.
Oncologist a doctor who specializes in the diagnosis and treatment of cancer.
Oncology the branch of medicine concerned with the diagnosis and treatment of cancer.
Open heart surgery surgery that involves opening the chest and heart while a heart lung machine performs for the heart and lungs during the operation.
Oxygen desaturation insufficient amounts of oxygen in the bloodstream. Desaturation can occur when oxygen poor (blue) blood from the right side of the heart circulation mixes with oxygen rich (red) blood in the left side of the heart circulation and goes to the body. Normal oxygen saturation in the arteries is 95 to 100 percent.
Oxygen saturation the extent to which the hemoglobin is saturated with oxygen. (Hemoglobin is an element in the bloodstream that binds with oxygen and carries it to the organs and tissues of the body.) A normal oxygen saturation of the blood leaving the heart to the body is 95 to 100 percent. The oxygen saturation of the blood returning to the heart after delivering oxygen to the body is 75 percent.
Pacemaker an electronic device that is surgically placed in the patient’s body and connected to the heart to regulate the heartbeat.
Pain specialist oncologists, neurologists, anesthesiologists, neurosurgeons, and other physicians, nurses, or pharmacists who are experts in pain. A team of healthcare professionals may also be available to address issues of pain control.
Palpitation sensation of rapid heartbeats.
Pancreas an organ located underneath the stomach that produces enzymes that aid in digestion, and also produces hormones such as insulin, which helps the body use sugar for energy.
Parenteral nutrition a means of providing protein, fats, carbohydrates, fluid, and vitamins to the body through a special solution given through a vein into the bloodstream.
Patent open.
Patent ductus arteriosus (PDA) a blood vessel present in all infants that usually closes shortly after birth. It connects the aorta to the pulmonary artery. When it remains open, it allows extra blood to pass through from the aorta to the lungs.
Patent foramen ovale an opening in the atrial septum (wall between the right and left atria) that is present in all infants, but which usually closes shortly after birth. When it remains open, it allows extra blood to pass through the opening from the left atrium to the right atrium.
Pathologist a doctor who specializes in diagnosis and classification of diseases by laboratory tests such as examination of tissue and cells under a microscope. The pathologist determines whether a tumor is benign or cancerous and, if cancerous, the exact cell type and grade.
Pediatric gastroenterologist a doctor who treats infants and children with diseases of the digestive system.
Pediatric oncologist a doctor who specializes in cancers of children.
Pediatrician a doctor who specializes in the care of children.
Percutaneous through the skin.
Perforation a hole in the wall of an organ.
Perfusion flow.
Pericardial effusion a build up of excess fluid in between the heart and the membrane that surrounds it, often due to inflammation.
Pericardiocentesis a diagnostic procedure that uses a needle to draw fluid from the pericardium.
Pericarditis an inflammation or infection of the sac which surrounds the heart.
Pericardium the membrane that surrounds the heart.
Peripheral blood stem cell collection stem cells are collected from the circulating cells in the blood.
Peritonitis an infection inside the abdominal cavity.
Petechia tiny red dots under the skin that are the result of very small bleeds.
Pharynx the throat.
Physical therapist a health professional who uses exercises and other methods to restore or maintain the body’s strength, mobility, and function.
Plaque deposits of fat or other substances attached to the artery wall.
Plasma the watery, liquid part of the blood in which the red blood cells, the white blood cells, and platelets are suspended.
Platelets cells found in the blood that are needed to help the blood to clot in order to control bleeding; often used in the treatment of leukemia and other forms of cancer.
Pleura membrane that covers the outside of the lung.
Pluripotent stem cell the most primitive, undeveloped blood cell.
Pneumonectomy removal of an entire lung.
Polycystic kidney disease (PKD) a genetic disorder characterized by the growth of numerous cysts filled with fluid in the kidneys.
Polyunsaturated fat a type of fat found in vegetable oils and margarines that does not appear to raise blood cholesterol levels.
Portal hypertension high blood pressure in the portal vein that carries blood to the liver.
Portal vein the large vein that carries blood to the liver from the spleen and intestines.
Post anesthesia care unit (Also called recovery room.) the area a patient is brought to after surgery to recover.
Post pericardiotomy syndrome a build up of excess fluid in “between the heart and the membrane that surrounds it, often due to inflammation after open heart surgery. (“”Post”” means after, and “”pericardiotomy”” means opening the membrane around the heart for open heart surgery.)”
Premature atrial contraction (PAC) an early heartbeat started by the atria.
Premature ventricular contraction (PVC) an early heartbeat started by the ventricles.
Prognosis a prediction of the course of disease; the outlook for the cure of the patient.
Prophylaxis prevention.
Prostaglandin E1 an intravenous medication used to keep a patent ductus arteriosus from closing and preserve blood flow to the lungs.
Proteinuria large amounts of protein in the urine.
Protocol a formal outline or plan, such as a description of what treatments a patient will receive and exactly when each should be given.
Pulmonary pertaining to the lungs and respiratory system.
Pulmonary artery blood vessel delivering oxygen poor blood from the right ventricle to the lungs.
Pulmonary edema a condition in which there is fluid accumulation in the lungs caused by an incorrectly functioning heart.
Pulmonary hypertension abnormally high blood pressure in the arteries of the lungs.
Pulmonary valve the heart valve located between the right ventricle and the pulmonary artery that controls blood flow to the lungs.
Pulmonary vein the vessel that carries oxygenated blood from the lungs to the left side of the heart.
Pulse oximeter a device that measures the amount of oxygen in the blood. Normal oxygen saturation in the arteries is 95 to 100 percent.
Pulse oximetry a device used to measure the amount of oxygen in the blood.
Purpura ” the purple color of skin after blood has “”leaked”” under it, such as in a bruise.”
Pylorus where the stomach connects to the small intestine.
Radiation therapist a professional specially trained to operate equipment that delivers radiation therapy.
Radioisotope a radioactive material injected into the body so that a nuclear scanner can make pictures.
Radiologist a doctor with special training in diagnosing diseases by interpreting X rays and other types of imaging studies (i.e., CT scans and magnetic resonance imaging).
Rectum the lower end of the large intestine.
Red blood cells (also called RBCs or erythrocytes.) blood cells that mainly help transport oxygen to all the tissues in the body.
Regimen a strict, regulated plan (such as diet, exercise, or other activity) designed to reach certain goals. In cancer treatment, a plan to treat cancer.
Regurgitation backward flow of blood caused by a defective heart valve.
Rejection an immune system response to transplanted tissues or organs.
Renal pertaining to the kidneys.
Renal angiography (also called renal arteriography) a series of X rays of the renal blood vessels with the injection of a contrast dye into a catheter, which is placed into the blood vessels of the kidney to detect any signs of blockage or abnormalities affecting the blood supply to the kidneys.
Renal ultrasound a noninvasive test in which a transducer wand is passed over the kidney, produces sound waves which bounce off of the kidney, transmitting a picture of the organ on a video screen. The test is used to determine the size and shape of the kidney and to detect a mass, kidney stone, cyst, or other obstruction or abnormalities.
Respiration gas exchange from air to the blood and from the blood to the body cells.
Rheumatic fever a disease caused by a strep infection that may damage the heart valves.
Right atrium the upper right chamber of the heart, which receives oxygen poor (blue) blood from the body and sends it to the right ventricle.
Right ventricle the lower right chamber of the heart, which receives oxygen poor (blue) blood from the right atrium and sends it to the pulmonary artery.
Risk factor anything that increases a person’s chance of developing a disease, such as cancer.
Ross procedure A surgical procedure performed to repair aortic stenosis. The child’s own pulmonary valve and base of the pulmonary artery (autograft) replace the defective aorta, while a homograft (blood vessel from a tissue donor) replaces the pulmonary valve and base of the pulmonary artery.
Rubella an illness that can cause birth defects, including congenital heart disease, if a woman contracts it for the first time during pregnancy; can be prevented by immunization with the MMR vaccine.
Saline solution a solution containing sodium chloride.
Sarcoma a malignant tumor growing from connective tissues, such as cartilage, fat, muscle, or bone.
Saturated fat fat that is found in foods from animal meats and skin, dairy products, and some vegetables. Saturated fats are usually solid at room temperatures and can increase LDL levels.
Septal defect a hole in the wall between the atria or the ventricles (upper or lower heart chambers).
Septum the muscle wall between the atria or ventricles (upper or lower heart chambers).
Shunt a connector to allow blood flow between two locations.
Sickle cell anemia an inherited blood disorder characterized by defective hemoglobin, where there are two copies of an abnormal hemoglobin gene present (HbSS).
Sickle cell hemoglobin C disease having one copy of the gene which causes sickle cell anemia (HbS) and one copy of another altered hemoglobin gene (HbC); this blood disorder is similar to sickle cell anemia.
Sickle cell hemoglobin E disease having one copy of the gene which causes sickle cell anemia (HbS) and one copy of another altered hemoglobin gene (HbE); this blood disorder may,may not cause symptoms except under stress (exhaustion, infection, etc.).
Sickle cell trait having one copy of the gene which causes sickle cell anemia (HbS), and one copy of the normal hemoglobin gene.
Sickle crisis (also called pain crisis or vasoocclusive crisis) in sickle cell diseases, the pain that occurs when the flow of blood is blocked to an area because the sickled cells are stuck in a blood vessel.
Side effects unwanted effects of treatment such as hair loss caused by chemotherapy and fatigue caused by radiation therapy.
Sigmoid colon the lower part of the large intestine that empties into the rectum.
Sinus node the cells that produce the electrical impulses that cause the heart to contract.
Sinus rhythm a normal heart rhythm in which each heartbeat originates in the sinus node and proceeds through the rest of the electrical conduction system normally.
Sinus tachycardia a heart rhythm that originates in the sinus node and proceeds through the rest of the electrical conduction system, but is faster than normal.
Small intestine the section of the digestive tract between the stomach and the large intestine. Most of digestion occurs here as nutrients are absorbed from food.
Smooth muscle muscle that performs automatic tasks, such as constricting blood vessels.
Sphincter muscles circular muscles that help keep urine from leaking by closing tightly like a rubber band around the opening of the bladder.
Sphygmomanometer an instrument used to measure blood pressure.
Spinal tap (also called a lumbar puncture) a special needle is placed into the lower back, into the spinal canal. This is the area around the spinal cord. The pressure in the spinal canal and brain can then be measured. A Small amount of cerebral spinal fluid (CSF) can be removed and sent for testing to determine if there is an infection or other problems. CSF is the fluid that bathes your child’s brain and spinal cord.
Spirogram record of the amounts of air being moved in and out of the lungs.
Spleen an organ found on the left side of the abdomen, next to the stomach. Makes white blood cells that help fight infection and filters and cleanses the blood.
Stem cells the blood cells that produce other blood cells. It is the stem cells that are needed in bone marrow transplantation.
Stenosis narrowing or constriction of a blood vessel or valve in the heart.
Stent a device implanted in a vessel used to help keep it open.
Sternotomy a surgical incision made in the breastbone.
Sternum the breastbone.
Stethoscope an instrument used to listen to the heart and other sounds in the body.
Stress mental or physical tension that results from physical, emotional, or chemical causes.
Stridor a high pitched sound heard best on inspiration.
Stroke the sudden disruption of blood flow to the brain.
Subclavian a blood vessel that branches from the aorta and takes oxygen rich (red) blood to the head and arms.
Superior vena cava the large vein that returns blood to the heart from the head and arms.
Supraventricular tachycardia a fast heart rate that originates in the aorta, but does not start in the sinus node.
Syncope light headedness or fainting caused by insufficient blood supply to the brain.
Syngeneic bone marrow transplantation an allogeneic transplant from an identical twin.
Systemic relating to a process that affects the body generally.
Systole the time during the heartbeat when the ventricles are pumping blood either to the lungs or to the body.
Systolic blood pressure the highest blood pressure measured in the arteries.
Tachycardia rapid heartbeat.
Tachypnea rapid breathing.
Tamponade an emergency situation that occurs when blood or fluid fills the pericardial sac surrounding the heart, preventing the heart from beating effectively.
Telemetry unit a small box with wires attached to EKG patches on the chest; used to send information about the heartbeat via radio transmission to healthcare professionals for evaluation.
Tetralogy of Fallot (TOF) a group of congenital heart defects, including a ventricular septal defect, obstruction to blood flow out of the right ventricle to the lungs, and an aorta that is shifted to the right. Enlargement of the right ventricle occurs as the right ventricle copes with obstruction to blood flow.
Thalassemia an inherited blood disorder in which the chains of the hemoglobin (a type of protein in red blood cells that carries oxygen to the tissues) molecule are abnormal; alpha thalassemia is where a mutation occurs in the alpha chain, while beta thalassemia is where the mutation occurs in the beta chain; signs and symptoms of thalassemias vary from mild (little to no symptoms) to severe (life threatening).
Thoracotomy an incision made on the right or left side of the chest between the ribs in order to access the heart or lungs during surgery.
Total parenteral nutrition see parenteral nutrition.
Transesophageal echocardiography (TEE) a diagnostic test that uses a long tube guided into the mouth, throat, and esophagus to evaluate the structures inside the heart with sound waves.
Transplantation to transfer organs, tissues, or cells from one person to another or from one area of the body to another in order to replace a diseased structure and to restore function.
Transposition of the great arteries (also called transposition of the great vessels) a congenital heart defect involving abnormal development of the great arteries (the aorta and the pulmonary artery) during the time the heart is forming prior to birth. The aorta ends up being connected to the right ventricle, and the pulmonary artery is connected to the left ventricle, which is the opposite of how they are normally connected.
Tricuspid atresia a congenital heart defect in which the tricuspid valve and right ventricle do not develop properly, preventing oxygen poor (blue) blood from reaching the lungs via its normal pathway.
Tricuspid valve the heart valve that controls blood flow from the right atrium into the right ventricle.
Triglyceride a fat like substance found in the blood.
Trisomy 21 (also called Down syndrome) the presence of three #21 chromosomes in each cell of the body, rather than the usual pair, which causes the features otherwise known as Down syndrome. Many children with Down syndrome also have congenital heart disease usually atrioventricular canal defect.
Truncus arteriosus a congenital heart defect involving incomplete separation of the great arteries (the aorta and the pulmonary artery) during the time the heart is forming prior to birth.
Ultrasound (also called sonography) a diagnostic imaging technique which uses high frequency sound waves and a computer to create images of blood vessels, tissues, and organs. Ultrasounds are used to view internal organs as they function, and to assess blood flow through various vessels.
Umbilical cord blood transplant a bone marrow transplant using stem cells from cord blood.
Unilateral affecting one side of the body. For example, unilateral kidney cancer occurs in one kidney only.
United Network for Organ Sharing (UNOS) A nonprofit, charitable organization that maintains the nation’s organ transplant waiting list under contract with the Health Resources and Services Administration of the US Department of Health and Human Services. UNOS also helps to develop organ transplantation policies.
Upper GI series a test that looks at the organs of the upper part of the digestive system: the esophagus, stomach, and duodenum (upper small intestine). A liquid that shows up well on x rays called barium is swallowed. X rays are then taken to evaluate the digestive organs.
Urea the nitrogen part of urine produced from the breakdown of protein.
Ureteroscope an optical device which is inserted into the urethra and passed up through the bladder to the ureter; to inspect the opening of the ureters.
Ureters two narrow tubes that carry urine from the kidneys to the bladder.
Urethra narrow channel through which urine passes from the bladder out of the body.
Urethritis infection limited to the urethra.
Urinalysis laboratory examination of urine for various cells and chemicals, such as red blood cells, white blood cells, infection, or excessive protein.
Urinary incontinence loss of bladder control.
Urinary tract infection an infection that occurs in the urinary tract; often caused by bacteria such as Escherichia coli. A urinary tract infection often causes frequent urination, pain, burning when urinating, and blood in the urine.
Urogenital refers to the urinary and reproductive systems.
Urologist a doctor who specializes in treating problems of the urinary tract in males and females.
Urology the branch of medicine concerned with the urinary tract in both genders, and with the genital tract or reproductive system in the male.
Valves ” the “”doors”” between the chambers of the heart that allow blood to move forward and prevent it from moving backward. The heart valves are called tricuspid, pulmonic, mitral, and aortic.”
Valvuloplasty surgical repair of a heart valve for relief of stenosis or incompetence.
Vascular pertaining to blood vessels.
Vasodilator a medication that dilates or widens the opening in a blood vessel.
Vasopressor a medication that raises blood pressure.
Vasovagal syndrome a sudden drop in blood pressure, with or without a decrease in heart rate, that is caused by a dysfunction of the nerves controlling the heart and blood vessels.
Vein a blood vessel that carries blood from the body back into the heart.
Ventilation movement of air (gases) in and out of the lungs.
Ventricle one of the two pumping chambers of the heart; right ventricle receives oxygen poor blood from the right atrium and pumps it to the lungs through the pulmonary artery; left ventricle receives oxygen rich blood from the left atrium and pumps it to the body through the aorta.
Ventricular fibrillation a condition in which the ventricles contract in rapid and unsynchronized rhythms and cannot pump blood into the body.
Ventricular septal defect an abnormal opening in the wall between the right and left ventricles.
Ventricular tachycardia a condition in which the ventricles beat very quickly.
Vertigo dizziness.
Vesicoureteral reflux (VUR) the abnormal flow of urine from the bladder back into the ureters; often as a result of a urinary tract infection or birth defect.
Vomiting the release of stomach contents through the mouth; also known as throwing up.
Von Willebrand disease a form of hemophilia caused by an abnormality in the von Willebrand factor, which is necessary for platelets to be able to attach themselves to a vein or artery to form a clot to stop bleeding.
White blood cells (also called leukocytes or WBCs) blood cells involved in the destruction of viruses, bacteria, and fungi that cause infection.
Wilms tumor a cancerous tumor originating in the cells of the kidney.
Wolff Parkinson White syndrome an extra electrical pathway that connects the atria and ventricles and causes rapid heartbeat.
X ray a diagnostic test which uses invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.