Heart
Transplantation
A heart
transplant is an operation performed to replace
a diseased heart with a healthy one from another
person.
A heart
transplant is recommended for children who have
serious heart dysfunction and will not be able
to live without having the heart replaced. Some
of the illnesses that affect the heart in this
way include complex congenital (present at birth)
heart disease and cardiomyopathy (disease of the
heart muscle in which the heart loses its ability
to pump blood effectively).
Visit
the United Network for Organ Sharing (UNOS) Web
site for statistics of patients awaiting a heart
transplant, and the number of patients who underwent
a transplant this year.
Hearts
that are transplanted come from organ donors.
Organ donors are adults or children who have become
critically ill (often due to an accidental injury)
and will not live as a result of their illness
or injury. If the donor is an adult, he/she may
have agreed to be an organ donor before becoming
ill. Parents or spouses can also agree to donate
a relative's organs. Donors can come from any
part of the United States. This type of transplant
is called a cadaveric transplant.
The
United Network for Organ Sharing (UNOS) is responsible
for transplant organ distribution in the United
States. UNOS oversees the allocation of many different
types of transplants, including liver, kidney,
pancreas, heart, lung, and cornea.
UNOS
receives data from hospitals and medical centers
throughout the country regarding adults and children
who need organ transplants. The medical team that
currently follows your child is responsible for
sending the data to UNOS, and updating them as
your child's condition changes.
Criteria
have been developed to ensure that all people
on the waiting list are judged fairly as to the
severity of their illness and the urgency of receiving
a transplant. Once UNOS receives the data from
local hospitals, people waiting for a transplant
are placed on a waiting list and given a "status"
code. The people in most urgent need of a transplant
are placed highest on the status list, and are
given first priority when a donor heart becomes
available.
When
a donor organ becomes available, a computer searches
all the people on the waiting list for a heart
and sets aside those who are not good matches
for the available heart. A new list is made from
the remaining candidates. The person at the top
of the specialized list is considered for the
transplant. If he/she is not a good candidate,
for whatever reason, the next person is considered,
and so forth. Some reasons that people lower on
the list might be considered before a person at
the top include the size of the donor organ and
the geographical distance between the donor and
the recipient.
An extensive
evaluation must be completed before your child
can be placed on the transplant list. Testing
includes:
- blood tests
- diagnostic tests
- psychological and social
evaluation of the child (if old enough) and
the family
Tests
are done to gather information that will help
determine how urgent it is that your child is
placed on the transplant list, as well as ensure
the child receives a donor organ that is a good
match. These tests include those to analyze the
general health of the body, including the child's
heart, lung, and kidney function, the child's
nutritional status, and the presence of infection.
Blood
tests will help improve the chances that the donor
organ will not be rejected. These tests may include:
- your child's blood
type
Each person has a specific blood type: type
A+, A-, B+, B-, AB+, AB-, O+, or O-. When receiving
a transfusion, the blood received must be a
compatible type with your child's own, or an
allergic reaction will occur. The same allergic
reaction will occur if the blood contained within
a donor organ enters your child's body during
a transplant. Allergic reactions can be avoided
by matching the blood types of your child and
the donor.
- kidney, liver, and
other vital organ function tests
- viral studies
These tests determine if your child has antibodies
to viruses that may increase the likelihood
of rejecting the donor organ, such as cytomegalovirus
(CMV).
The
diagnostic tests that are performed are extensive,
but necessary to understand the complete medical
status of your child. The following are some of
the other tests that may be performed, although
many of the tests are decided on an individual
basis:
- blood tests
- urine tests
- echocardiogram -
a procedure that evaluates the structure and
function of the heart by using sound waves recorded
on an electronic sensor that produce a moving
picture of the heart and heart valves.
- 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.
- cardiac catheterization
- a diagnostic procedure in which
a small, thin tube (catheter) is guided through
a vein or artery into the heart in order to
view the heart and blood vessels. An iodine
compound (a colorless, liquid dye) is given
through the catheter and moving x-ray pictures
are made as the dye travels through the heart.
- heart biopsy -
a procedure that takes a small tissue sample
of the heart for examination.
The
transplant team will consider all information
from interviews, your child's medical history,
physical examination, and diagnostic tests in
determining whether your child can be a candidate
for heart transplantation.
After
the evaluation and your child has been accepted
to have a heart transplant, your child will be
placed on the United Network for Organ Sharing
(UNOS) list.
The
group of specialists involved in the care of children
who are undergoing a transplant procedure is often
referred to as the "transplant team." Each individual
works together to provide the best chance for
a successful transplant. The heart transplant
team consists of:
- transplant surgeons
- physicians who specialize in transplantation
and who will be performing the surgery. The
transplant surgeons coordinate all team members.
They follow your child before the transplant
and continue to follow your child after the
transplant and after discharge from the hospital.
- cardiologists -
physicians who specialize in the medical evaluation
and treatment of heart diseases.
- pulmonologists -
physicians who specialize in the function and
disease of the lungs.
- transplant nurse coordinator
- a nurse who organizes all aspects
of care provided to your child before and after
the transplant. The nurse coordinator will provide
patient education and coordinate the diagnostic
testing and follow-up care.
- social workers -
professionals who will provide support to your
family and help your family deal with many issues
that may arise including lodging and transportation,
finances, and legal issues. They can also help
coordinate alternative means for school, so
that your child does not get behind.
- dietitians -
professionals who will help your child meet
his/her nutritional needs before and after the
transplant. They will work closely with you
and your family.
- physical therapists
- professionals who will help your
child become strong and independent with movement
and endurance after the transplantation.
- pastoral care -
chaplains who provide spiritual care and support.
- other team members
- several other team members will
evaluate your child before transplantation and
provide follow-up care, as needed. These include,
but are not limited to, the following:
- pharmacists
- anesthesiologists
- urologists
- hematologists
- nephrologists
- infectious disease
specialists
- respiratory therapists
- lab technicians
- psychologists
- child life specialists
There
is no definite answer to this question. Sometimes,
children wait only a few days or weeks before
receiving a donor organ. It may also take months
or years on the waiting list before a suitable
donor organ is available. During this time, your
child will have close follow-up with his/her physician
and the transplant team. Various support groups
are also available to assist you during this waiting
time.
A major
problem affecting the availability of hearts for
transplant is that these organs cannot come from
living donors. Kidney transplants often come from
a living donor; both the person who donated a
kidney and the recipient are able to live with
just one remaining kidney. New techniques are
making it possible for some people in need of
a liver transplant to receive part of an organ
from a living donor; both the recipient and the
donor may be able to live successfully with just
a segment of a liver. However, an entire heart
is needed for a human to live. Neither donor nor
recipient can live with only a segment of a heart.
Therefore, people in need of a heart transplant
must wait for the death of a person who generously
decided to share his/her organs.
Availability
of donors for heart transplantation is also affected
by the size of the child needing the transplant.
For instance, an adult donor heart cannot be transplanted
into an infant because the infant's chest is simply
too small to accommodate the large organ. Children
must wait for an appropriately sized organ to
become available. However, as of May 15, 2000,
new UNOS guidelines were established to give preference
to children under 18 on the waiting list before
adults whenever a heart from an adolescent donor
(ages 11 to 17) becomes available.
Each
transplant team has their own specific guidelines
regarding waiting on the transplant list and being
notified when a donor organ is available. In most
instances, you will notified by phone or pager
that an organ is available. You will be told to
come to the hospital immediately so your child
can be prepared for the transplant.
Once
an organ becomes available to your child, you
and your child will be immediately called to the
hospital. This call can occur at any time, so
you should always be prepared to go to the hospital,
if needed. Once at the hospital, the child will
have some more final blood work and tests to confirm
the match of the organ.
The
child will then go to the operating room. The
transplant surgery may require several hours,
but will vary greatly depending on each individual
case. During the surgery, a member of the transplant
team will keep you informed on the progress of
the transplant.
After
the surgery, your child will go to the intensive
care unit (ICU) to be monitored closely. The length
of time your child will spend in the ICU will
vary based on your child's unique condition. After
your child is stable, he/she will be sent to the
special unit in the hospital that cares for heart
transplant patients. Your child will continue
to be monitored closely. You will be educated
on all aspects of caring for your child during
this time. This will include information about
medications, activity, follow-up, diet, and any
other specific instructions from your child's
transplant team.
Rejection
is a normal reaction of the body to a foreign
object. When a new heart is placed in your child's
body, the body sees the transplanted organ as
a threat and tries to attack it. The immune system
makes antibodies to try to destroy the new organ,
not realizing that the transplanted heart is beneficial.
To allow the organ to successfully live in a new
body, medications must be given to trick the immune
system into accepting the transplant and not thinking
it is a foreign object.
The
following are the most common signs and symptoms
of rejection. However, each child may experience
symptoms differently. Symptoms may include:
- fever
- decreased urine output
or fewer wet diapers than usual
- elevated heart rate
- fast breathing rate
- weight gain
- fatigue
- irritability
- poor appetite
Your
child's transplant team will instruct you on who
to call immediately if any of these symptoms occur.
Medications
must be given for the rest of the child's life
to fight rejection. Each child is unique, and
each transplant team has preferences for different
medications. Some of the anti-rejection medications
most commonly used include the following:
- cyclosporine
- tacrolimus
- mycophenolate mofetil
- prednisone
- azathioprine
Because
anti-rejection medications affect the immune system,
children who receive a transplant will be at higher
risk for infections. A balance must be maintained
between preventing rejection and making your child
very susceptible to infection. Blood tests are
performed periodically to measure the amount of
medication in the body to ensure your child does
not get too much or too little of the medication.
White blood cell counts are also an important
indicator of how much medication your child needs.
This
risk of infection is especially great in the first
few months because higher doses of anti-rejection
medicines are given during this time. Your child
will most likely need to take medications to prevent
other infections from occurring. Some of the infections
your child will be especially susceptible to include
oral yeast infections (thrush), herpes, and respiratory
viruses.
Your
child will have very close follow-up with the
transplant team after leaving the hospital. This
will allow for close monitoring of your child
and the function of the transplanted heart. Follow-up
visits may include the following:
- complete physical examination
- blood work
- echocardiogram
- cardiac catheterization
- continued education
for you and your child
- medication changes
Children
who have received a heart transplant will need
life-long follow-up with physicians who are specialized
in transplant medicine. Keeping appointments with
your child's transplant physician, as well as
maintaining contact with the transplant team when
symptoms of rejection occur is vital. Parents
(and the recipient, when old enough) are the first
line of defense; they must understand and recognize
the signs and symptoms of rejection, and report
them as soon as possible to the transplant team.
Living
with a transplant is a life-long process. Medications
must be given that trick the immune system so
it will not attack the transplanted organ. Other
medications must be given to prevent side effects
of the anti-rejection medications, such as infection.
Frequent visits to and contact with the transplant
team are essential. Knowing the symptoms of organ
rejection (and watching for them on a daily basis)
is critical. When the child becomes old enough,
he/she will need to learn about anti-rejection
medications (what they do and the signs of rejection),
so he/she can eventually care for himself/herself
independently.
Every
child is unique and every transplant is different.
Results continually improve as physicians and
scientists learn more about how the body deals
with transplanted organs and search for ways to
improve transplantation.
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