Transplant Reference Guide

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Transplant Reference Guide
The transplant process can be overwhelming, especially when some of the words used may be new and hard to
understand. The Network hopes that this guide will be a useful resource to help you to take a more active role
in understanding your healthcare.
Your Rights and Responsibilities in the Transplant Process:
» You have the Right to receive a full explanation of the kidney transplant process.
» You have the Right to select a transplant center where you want to receive a transplant after talking with
your doctor.
» You have the Responsibility to take steps before receiving a transplant to help your body to stay healthy
after the transplant.
» You have the Responsibility to tell your doctor, transplant coordinator, transplant social worker, and
other transplant team members about your medical history.
Transplant Glossary of Terms:
» Active Candidate: A transplant candidate eligible to be considered for organ offers as they become
available. Some transplant candidates are put on hold or listed as “inactive” by their transplant center
because they are not medically stable for transplantation or need to complete other eligibility
requirements.
» Allocation: The process of deciding how organs are distributed.
» Anti-Rejection Drugs (Immunosuppressive Drugs): Medications that are used to prevent and/or treat
rejection of a transplanted organ.
» Antibody: A protein molecule produced by the immune system in response to a foreign body, such as a
transplanted organ. Antibodies are the reason why a recipient must take anti-rejection drugs for the
rest of their life.
» Blood Type: One of four groups (A, B, AB or O) that blood is grouped. Blood types are based on how
your red blood cells are different from someone else’s red blood cells.
» Body Mass Index (BMI): A measure of body size, calculated as weight divided by height.
» Candidate: A person who is on the organ transplant waiting list. When an organ is offered to the
candidate, he or she is then called a Potential Transplant Recipient (PTR).
» Centers for Medicare & Medicaid Services (CMS): Used to be called the Health Care Financing
Administration. CMS is a part of the U.S. Department of Health and Human Services (HHS) responsible
for both Medicare and Medicaid programs, which are health insurance plans that cover America’s older,
disabled, End Stage Renal Disease, and low-income groups.
» Chronic: Develops slowly and lasts for a long time, possibly the rest of the person’s life.
» Creatinine: Found in the blood, it is a waste product of muscle; creatinine level in the blood is one of the
ways kidney function is measured.
» Criteria (Medical Criteria): A set of clinical or biological standards or conditions that must be met.
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Crossmatch: A blood test to determine if donor and recipient match. A positive crossmatch means they
do not match. A negative crossmatch means they do match, and then a transplant may happen.
Department of Health and Human Services (DHHS or HHS): The department of the federal government
responsible for health-related programs and issues.
Dialysis: A process that partially performs some of the kidney function that was lost, like correcting the
balancing fluids and chemicals in the body and removing wastes.
Directed Donation: The donation of an organ to a specific recipient. These instructions are given by a
donor or donor family member.
Donor: Someone who has at least one organ is removed for the purpose of transplantation. A deceased
donor is a person who has been declared dead, who has at least one organ removed for the purpose of
transplantation. A living donor is one who donates an organ for transplantation.
Donor Registry: A confidential computer system of registered organ donors that allows easy and quick
confirmation of a person’s permission to donate an organ. All registries are voluntary.
End-Stage Renal Disease: A disease that leads to permanent failure of the kidneys.
End-Stage Renal Disease Network of New England: Federally funded by CMS, the Network assists with
the quality of care provided by dialysis and transplant facilities to ESRD patients.
Extended Criteria Donor (ECD): A kidney donated for transplantation from a deceased donor that was
declared brain dead and was 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 may change in late 2014.
Geographic Units for Organ Distribution: Donated organs are first offered to transplant candidates
within the Designated Service Area (DSA) of the host Organ Procurement Organization (OPO) (with the
exception of perfectly matched donor kidneys). If the organ(s) are used by the transplant centers in the
host OPO’s DSA, they are offered to transplant centers in the Region, then to all centers nationwide.
(Area→ Region→ Nation)
Immune System: The organs, tissues, cells and cell products in your body that fight against foreign
invaders including bacteria, viruses and even transplanted organs.
Match: The compatibility between the donor and the recipient. The closer the match, the greater the
chance of a successful transplant.
Medicaid: A partnership between the Federal government and the individuals 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 from state to state.
Medicare: A Federal government program 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.
Nephrologist: A doctor who specializes in caring for the kidneys.
Organ Preservation: Methods used to keep organs healthy while they are out of the body, between the
time the organ is removed (procured) from a donor until it is transplanted into a recipient.
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Organ Procurement: The removal or retrieval of organs from a donor for transplant.
Potential Transplant Recipient (PTR): A transplant candidate who has been ranked by the computer
matching system as the person that an organ from a specific deceased organ donor is to be offered.
Recipient: A person who receives a transplant.
Registration Status Categories: The following categories are used to track waiting patients:
o Active: Patients that have met transplant center criteria and whose health is favorable for
transplant surgery. (Also known as being active on the waitlist)
o Inactive: Patients experiencing health problems (e.g., infection) that for the moment rules out
transplant surgery. (Also known as being inactive on the waitlist)
o Removal: Patients who are removed from the Wait List either (a) by personal, voluntary choice;
(b) because they have become too ill to survive surgery or post-transplant immunosuppression;
(c) have received a transplant or; (d) have passed away.
Rejection: When a recipient’s immune system attacks a transplanted organ, tissue, or cell.
Immunosuppressive drugs help prevent or treat rejection.
Standard Criteria Donor (SCD) Kidney: A kidney donated for transplantation by a donor who has
suffered brain death, and who is not an extended criteria kidney donor. *May change late 2014.
Time to Transplant (TT): The amount of time from wait-listing to transplantation. Time to transplant
looks at candidates who are first registered on the waiting list, and measures the time between waiting
list registration and transplant date.
Tissue Typing: A blood test that shows how closely the tissues of the donor match the tissues of the
recipient.
Transferring Waiting Time: Candidates may switch to a different transplant hospital and transfer (bring)
their waiting time to the new hospital. Waiting time from the original (first) center is added to the time
collected at the new hospital.
Transplant Center: A hospital that performs transplants, including determining if patients are eligible for
transplant, registering patients on the national waiting list, performing transplant surgery and providing
care before and after transplant.
Transplant Team: The team of people 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 people:
o Clinical Transplant Coordinators: Responsible for the patient’s evaluation, treatment and
follow-up care.
o Transplant Physicians: The 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 transplant, and in some centers,
provides follow-up care to the recipient.
o Transplant Surgeons: Performs the transplant surgery and may provide the follow-up care for
the recipient. The transplant surgeon has special training to perform transplants.
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Financial Coordinators: The person with information about financial matters and hospital
billing. The financial coordinator works with other members of the transplant team, insurance
companies, and administrative personnel to assist with the financial parts of the patient’s care
before, during, and after the transplant.
o Social Workers: Help patients and their families understand and cope with many issues that
may come about with a patient’s illness and/or the various side-effects of the transplant itself.
In some cases, the social worker may help with some of the financial coordination as well.
Wait List (WL): The list of candidates registered to receive an organ transplant. When a donor organ is
available, matching systems produce a new, more specific list of possible recipients based on the
measures 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 candidates time spent
waiting, etc.).
Wait List Registration: To be registered for a transplant, a patient undergoes a complete assessment
(evaluation) by the transplant team. If a transplant is needed, the center registers that patient on the
wait list. Within 10 days of evaluation of a patient for transplant, the transplant center must send a
letter informing the patient whether he or she has, or has not, been registered on the Wait List and their
registration status category (described above).
Waiting Time: The amount of time a candidate is on the Wait List. Waiting times can be affected by
many factors, including, but not limited to:
o Blood type (some are less common than others)
o Tissue type
o Height and weight of transplant candidate
o Size of donated organ
o Time on wait list
o The distance between the donor’s hospital and the potential donor organ
o How many donors there are in the local area over a period of time
o The transplant center’s criteria for accepting organ offers
Please keep in mind that this resource is meant to provide be a guide for words often used in
the transplant process. If you need more information or have questions, you should talk with
your transplant team. You can also contact the Network’s Toll Free Patient Line at
(866) 286-ESRD (3773).
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