Download Donor Hearts and the Waiting List

Pediatric Heart Transplant Surgery:
Education to Support Informed Consent
This document is for pediatric patients who have been accepted
as a heart transplant candidate and for their families. It explains
the waiting list, the risks of a transplant, the care your child
will have before, during and after the transplant, and other
key information about a heart transplant. It is important that you
read and understand this document. Ask questions about
anything you do not understand.
WH AT’ S INSI DE
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Donor Hearts and the Waiting List ......................... 2
Information about the Transplant ............................ 3
Transplant Risks, Your Rights, and Alternatives .... 5
Other General Information ...................................... 7
Acknowledgement Form ......................................... 8
What is the process?

Waiting list: Your child will be put on a waiting list,
explained on page 2.
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Surgery and recovery: If a heart becomes available, your
child will have heart transplant surgery, which involves
various risks. Members of the transplant team (see the list
at right) will care for your child during and after the
surgery. Some patients may also be referred to another
service for consultation. For example, some patients may
need to be seen by a pulmonologist (lung doctor), or a
nephrologist (kidney doctor) to assess other medical
conditions, or a psychiatrist for a more in-depth
evaluation. Learn about transplantation, its risks, and the
care your child will receive during and after surgery on
pages 3 through 6.

Medications: Your child will be on a number of different
medications after their transplant, some of them for the
rest of their lives. Learn more on pages 4 and 6.
Transplant Team Members
 A Transplant Cardiologist is a doctor who treats
heart disease and who specializes in
transplantation and the treatment of heart failure.
This doctor will determine if your child is medically
suitable for a transplant, if further tests are
needed, or if a transplant is not right for your child.
The transplant cardiologist will also discuss
medication your child would need or possible
complications after a transplant.
 A Transplant Surgeon will discuss the transplant
surgery, the risks of the surgery, and the possible
complications during and after your child’s
transplant.
 An Advanced Practice Clinician (APC) is a
Nurse Practitioner or Physician Assistant. The
APC will help the doctor with your child’s care and
may also perform Transplant Coordinator
responsibilities.
 A Transplant Coordinator is a nurse who gives
education about the evaluation and waiting list, and
you and your child’s responsibilities before and after
the transplant.
 A Social Worker will meet with you and your child
to evaluate your ability to cope with the stress of a
heart transplant and follow a rigorous treatment
plan afterward. The social worker will also help to
identify your support network.
 A Financial Coordinator will discuss the costs of
a heart transplant and the medications your child
will need afterward. The Financial Coordinator will
help you understand your child’s insurance
coverage and any costs that are not covered by it.
 A Transplant Pharmacist will be available to
answer your questions and explain the
medications your child will need before and after
the transplant.
 A Dietitian does a nutritional assessment and
gives you nutrition education regarding your child.
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Donor Hearts and the Waiting List
Where do donor hearts come from? Hearts for transplantation come from deceased organ donors who are
age appropriate and who do not have significant health problems. The donor’s cause of death is usually
an accident or sudden illness. Donors are expected to have good heart function. Heart donors are
screened and may be excluded for positive HIV, Hepatitis B & C; heart abnormalities and/or damage,
and high-risk activity. Any high-risk donor characteristics will be discussed with you before the donor
heart is transplanted, if your child is a potential recipient.*
*What is a high risk donor? A high risk donor has a greater risk of having HIV (the virus that causes AIDS), HBV (hepatitis B), or HCV (hepatitis C)
infection. According to the Centers for Disease Control, the following people are at increased risk for these infections:

People who have used illicit drugs (injected or inhaled) or who have had certain sexually transmitted diseases in the past year

People who have had risky sexual behaviors: sex with over 2 partners in the past year, sex with someone suspected of having HIV, HBV, or HCV
infection, or sex with people who are at higher risk for these infections (based on their sexual behaviors or drug use)

Prison inmates

Infants/toddlers born to a mother infected with HIV, HBV or HCV
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People who have been on hemodialysis in the past 12 months (increases risk for HCV only)
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People who have, in the past year, immigrated from a country where HBV is prevalent (increases risk for HBV only)
How are donor hearts allocated? Hearts from deceased donors are allocated according to the policy of the
United Organ for Network Sharing (UNOS). Factors that contribute to the allocation process include:
ABO blood type, how sick your child is, body size, and time on the waiting list.
How does the waiting list work? Since your child has been accepted as a transplant candidate, your
child’s name has been placed on the UNOS waiting list at Primary Children’s Medical Center. While on
the waiting list, your child will be followed by his or her transplant cardiologist. The heart transplant
waiting list is a list of transplant candidates maintained by the United Network for Organ Sharing
(UNOS). Your child began to accumulate wait time on the day listed.
What is UNOS?
The amount of time your child will wait for a heart transplant depends on
The United Network for Organ Sharing (UNOS)
several different factors:
is a private, non-profit membership organization
that coordinates the nation’s transplant system
 Blood type
through a government contract. UNOS:
 Body size
 Facilitates matching of organs with recipients
 Antibody level
 Collects, manages, and reports data on
transplant outcomes
 Availability of an organ
 Increases donor awareness
 Acuity status (the severity of your child’s condition)
How does a “heart offer” work? When a donor organ becomes available for your child, the transplant
coordinator will contact you by phone or pager. You will always have the option to decline an organ for
your child. If your child’s surgeon decides the organ is unusable, your child will continue to wait for a
suitable heart either at home or in the hospital, depending on his or her condition.
Are there risks from the donor heart itself? Certain conditions in the donor may affect the success of your
child’s heart transplant. These include the donor’s history, the condition of the organ when it is received,
and the potential risk that your child may contract infectious diseases or cancer if the doctor cannot
detect them in the donor.
Pediatric Heart Transplant Surgery: Education to Support Informed Consent, Page 2 of 8: Patient Initials: ______
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Information about the Transplant
Heart transplant is a treatment option for end-stage heart disease, but your transplant team cannot predict
exactly how your child’s body will respond to a heart transplant. The potential benefits do not result from
surgery alone, but also depends on following a rigorous treatment plan prescribed by your transplant
team for your child. As part of the evaluation process, you and your child should have met with a
transplant surgeon. You must be aware of the potential risks and complications outlined in this document.
The transplant surgeon will explain the operation to you and your child. Below is some basic information
about what happens.
THE SURGERY
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Anesthesia: During the transplant surgery, your child will be put under general anesthesia. This
means your child is given medications to put him or her to sleep, block pain, and paralyze parts of the
body. Before your child’s surgery, the anesthesiologist will talk with you and your child in more
detail about the risks of anesthesia.
Breathing: Your child will also be placed on a machine to help him or her breathe.
Catheter and drainage tubes: Your child will have a catheter placed into his or her bladder to empty
urine. Drainage tubes may be put into his or her body to allow fluids to be removed and to help in
healing.
Monitoring and IVs: Cardiac monitoring devices and a temporary pacemaker will be attached to your
child’s heart. IVs will be in your child’s blood vessels for fluid and medication access.
Leg devices: In an effort to prevent blood clots, in older children special mechanical boots or sleeves
may be placed around your child’s legs to keep blood flowing through his or her legs.
The transplant: The transplant surgeon will remove your child’s heart and implant the new heart in his
or her chest. Your child will have an incision (a cut) down the chest with a scar that will remain.
Length of surgery: Your child may be in the operating room for several to many hours, depending on
his or her previous surgery history and need for additional reconstruction.
POST-SURGICAL CARE AND RE COVERY
 Intensive care unit (ICU): After the surgery, your child will be taken to the intensive care unit for close
monitoring. Your child will experience pain that can be controlled by medication.
 Hospital stay: When your child’s medical condition has stabilized, he or she will be transferred to the
Children’s Surgery Unit (CSU). The length of stay after a heart transplant will vary depending on
your child’s condition prior to transplant, surgical history, the rate of recovery and how well the new
heart functions. Your child will remain in the hospital only as long as the doctor feels it is necessary.
FOLLOW-UP
 Appointments: The first follow-up appointment will be scheduled for your child before he or she
leaves the hospital. Your child will be seen by the transplant team twice a week for the first 8 weeks
after leaving the hospital. Depending on how your child is progressing after that, less frequent visits
will be required.
 Heart biopsies: A heart biopsy is a procedure to obtain a tissue sample from the transplanted heart. A
heart biopsy is taken during cardiac catheterization (a procedure in which a narrow, flexible tube is
inserted into a blood vessel and threaded to your child’s heart). By looking at a piece of the heart
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under a microscope, your child’s transplant team will be able to identify whether the heart is in
rejection. With this information, a treatment plan for your child will be made depending on his or her
clinical stability. Biopsies will be every week for the first 4 weeks, every other week for 5 to 12
weeks, then monthly, quarterly, semi-annually, and annually, becoming less and less frequent over
time. On occasion, biopsies may be done outside this general schedule as determined by the physician
or transplant cardiologist. Generally, children 8 years and older will follow the above guideline.
Infants will have a baseline biopsy at around 4 months post-transplant and then at one year posttransplant unless there is suspicion of rejection.
Monitoring: The first six months after transplant is the time of greatest risk of rejection and infection.
The frequent clinic visits are needed in order to monitor your child for rejection and to adjust
medication doses. Following this period your child will still have blood tests, biopsies, and echos,
and will be seen in clinic on a regular basis. Longterm, the transplant team will continue to follow
your child’s lab test results, biopsies, echos and clinical examinations at a minimum of three times
per year.
MEDIC ATIONS AFTER TR ANSPL ANT
Your child will be on a number of different medications after the transplant. The doses of these
medications are generally higher during the first three months and will decrease over time. Your child will
be on immunosuppressive medications for the rest of his or her life. Not taking all medications at the correct
dose and time could cause serious complications, including failure of your child’s heart transplant and
death. Your child will also be on anti-infection medications to prevent infections and on other
medications as needed.
Pediatric Heart Transplant Surgery: Education to Support Informed Consent, Page 4 of 8: Patient Initials: ______
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Transplant Risks, Your Rights, and Alternatives
Heart transplant is a treatment option for end-stage heart disease, but the transplant team cannot predict
exactly how your child’s body will respond to a heart transplant. The potential benefits do not result from
surgery alone, but also depend on following a rigorous treatment plan prescribed by your child’s
transplant team. As part of the evaluation process, your child will see a surgeon.
There are inherent risks in all surgeries, especially surgeries conducted under general anesthesia. Many
complications are minor and get better on their own. In some cases, the complications are serious enough
to require another surgery or medical procedure. You and your child must be aware of the potential risks
and complications outlined in this document, including those that result in serious injury and death.
POTENTI AL SURGIC AL R ISKS
The problems listed below are not common. If they do occur, they are often treatable. Please ask a member
of your child’s transplant team if you have any questions about these risks.
 Bleeding during or after surgery may require blood transfusions or blood products.
 Blood products or the donated organ could possibly contain bacteria and viruses that can cause infection.
Although rare, these infections include, but are not limited to, the human immunodeficiency virus
(HIV), hepatitis B virus (HBV), hepatitis C virus (HCV), and cytomegalovirus (CMV).
 There may be a delay in the function of your child’s transplanted heart. Such a delay may increase the
length of your child’s hospital stay and increase the risk of other complications.
 There is a possibility that the transplanted heart may not function. In this instance, a temporary ventricular
assist device may be placed. This will keep the heart working until another heart is located.
 There is an increased risk of certain kinds of cancer (including skin cancer and post-transplant
lymphoproliferative diseases or lymphoma) because of the immune-suppressing medications.
 Despite the use of compression boots, in older children blood clots may occasionally develop in the
legs and can break free. Occasionally they may move through the heart to the lungs or brain. This can
cause serious interference with breathing or brain function, which can lead to death. Blood clots are
treated with blood-thinning drugs that may need to be taken for an extended period of time.
 Damage to nerves may occur. This can happen from pressure or positioning of the arms, legs, or back
during the surgery. Nerve damage can cause numbness, weakness, paralysis and/or pain. In most
cases these symptoms are temporary, but in rare cases they can last for extended periods or even
become permanent.
 Depression, anxiety, dependence on others, or guilt: Older children may feel sad or depressed after
cardiac surgery or after a prolonged hospitalization. These emotions may be the result of not knowing
what to expect, not being able to do simple tasks without becoming overly tired, or from feeling
dependent on others, which may cause feelings of guilt. Temporary feelings of sadness are normal,
and should gradually go away within a few weeks as your child gets back to a routine of normal
activities. Sometimes, however, a depressed mood can prevent your child from leading a normal life.
When a depressed mood is severe and accompanied by other symptoms that happen every day for
two or more weeks, treatment is necessary to help your child cope and recover.
 Other risks and possible complications associated with heart transplants include: infections from bacteria,
viruses, or fungi; chronic or acute rejection; injury to structures in the chest; pressure sores on the
skin due to positioning; burns caused by the use of electrical equipment during surgery; damage to
arteries and veins; pneumonia; heart attack; stroke; and permanent scarring at the site of the incision.
Pediatric Heart Transplant Surgery: Education to Support Informed Consent, Page 5 of 8: Patient Initials: ______
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RISKS FROM IMMUNOSUP PRESSIVE MEDIC ATION
Immunosuppressive medication keeps your child’s body from rejecting the transplanted heart. The table
below describes some of the immunosuppressive medications your child may be on and some of their
potential side effects, which may be manageable.
Medication
cyclosporine (Neoral®, Gengraf®)
Potential side effects
Headaches, tremor, abnormal kidney function, high
blood pressure, high blood sugar, high cholesterol,
infection, increased potassium levels, excessive hair
growth, trouble sleeping, and swelling of your child’s
gums that may require need for gum surgery
tacrolimus (Prograf®)
Headaches, high blood pressure, nausea, diarrhea, high
blood sugar, tremors, hair loss, trouble sleeping,
infection, numbness and tingling of your child’s hands
or feet, increased potassium levels, and abnormal
kidney function
mycophenolate sodium (Myfortic®)
or
mycophenolate mofetil (CellCept®)
Heartburn, stomach discomfort, infection, nausea,
vomiting, and diarrhea
sirolimus (Rapamune®)
Infection, swelling of the extremities, high blood
pressure, abnormal kidney function, high cholesterol
levels, diarrhea, nausea, tremors, headache,
indigestion, and heartburn
azathioprine (Imuran®)
Nausea, vomiting, and infection
prednisone
High blood sugar, weight gain, hunger, puffy cheeks
and a round face, infections, pimples on the back or
face, bruising easily, osteoporosis, high cholesterol,
mood swings, night sweats, anxiety, stomach irritation
that could lead to ulcers, blurry vision, slowed growth,
and high blood pressure
YOUR RIGHTS
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You have the right to refuse a transplant for your child. If you choose for your child to not have a
transplant, please discuss your child’s treatment options with the cardiologist.
If your child is on the waiting list for a heart transplant, you have the right to transfer your child’s
waiting time from one center to another, and your child can be listed at multiple centers.
You have the right to file a grievance with UNOS on your child’s behalf. Call 1-888-894-6361.
ALTERN ATI VES TO HE AR T TR ANSPL ANT
Alternate treatment options include surgical palliation (surgery to reduce symptoms), mechanical assist
devices, or medical management. Please discuss your child’s condition and these alternative therapies
with your child’s transplant team.
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Other General Information
National outcomes and transplant center outcomes: Statistics from the Scientific Registry of Transplant
Recipients (SRTR) have been provided to you. We will explain our program’s 1-year patient survival
and graft survival and how our program compares to national averages and Medicare outcome
requirements. Please see attached document for this data. Please let us know if you have any further
questions. You may also find this information on the internet at www.srtr.org and www.optn.org.
Notification of Medicare outcome requirements: Specific outcome requirements need to be met by
transplant centers and we are required to notify you if we do not meet those requirements. Transplant
centers must also be approved by Medicare for patients to receive Medicare Benefits such as Part A and
Part B. Currently, the Primary Children’s Medical Center Heart Transplant Program meets all Medicare
outcome requirements for heart transplant centers.
Transplantation by a transplant center not approved by Medicare: If you have your transplant at a facility
that is not approved by Medicare for transplantation, Medicare Part B may not pay for the anti-rejection
medication that you must take.
Privacy Information: Intermountain complies with the patient privacy guidelines required by HIPAA (the
Health Insurance Portability and Accountability Act). To safeguard patient safety during the organ
transplant process, we must verify that your child’s blood type is compatible with your donor’s blood
type. To do this, we need to include your child’s medical record number/UNOS ID number on an ABO
& Vital Information Form that may be kept in the donor’s medical record. The donor’s medical record
number/UNOS ID number may be kept on the same form in your child’s medical record.
Health and Life Insurance: After your child turns 18, if they lose insurance coverage or have a break in
insurance coverage health insurance companies may consider your child to have a pre-existing condition
and may refuse payment for medical care, treatments or procedures. After the surgery, health insurance
and life insurance premiums may increase and remain higher. In the future, insurance companies could
refuse to insure your child for medical, disability, or life insurance. If you have any questions, please
contact your Transplant Financial Coordinator.
Program Coverage Plan: A transplant surgeon and/or a transplant cardiologist is available 365 days a
year, 24 hours a day, 7 days a week to provide coverage at all times. The assigned covering physician
and/or surgeon are available in a timely manner to address patient and donor concerns and to facilitate
organ acceptance, procurement of organs, and transplantation of organs.
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Acknowledgement Form for
Pediatric Heart Transplant Surgery:
Education to Support Informed Consent
I have received a copy of Pediatric Heart Transplant Surgery: Education to Support Informed Consent
along with the educational items listed below on behalf of my child. I have been provided the
opportunity to read the information and ask questions.
 Heart Transplant Program Coverage
 Current SRTR results for Primary Children’s Medical Center Heart
Transplant Program; Version date: ____________________
Patient’s Signature: _____________________________
Date: _________________ Time: _______
Printed Name: ______________________________________
OR
Patient’s Authorized Agent or Legal Representative: ____________________________________
Printed Name: ________________________________
Date: ________________ Time: _________
Relationship to Patient: ______________________________________
Specify reason for Representative/Agent signing document: _______________________________
_____________________________________________________________________________
I have reviewed the information in Pediatric Heart Transplant Surgery: Education to Support Informed
Consent and the educational materials listed above with the patient (or patient’s representative) and have
provided opportunities for questions and clarification.
Transplant Team Member Signature: ________________________________
Printed Name: ________________________________ Date: ____________Time:_______
Pediatric Heart Transplant Surgery: Education to Support Informed Consent, Page 8 of 8
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