The Heart Transplant Process
Welcome to University of Wisconsin Hospital and Clinics. You have been referred to the UW
Heart Transplant Program because your heart doctor feels you may need a heart transplant. This
handout is designed to help you learn more about heart transplant. Feel free to write in it and use
it as you please. Be sure to ask your nurses and doctors any questions that you may have.
♥ Why do people need heart transplants?
A heart transplant is a surgery in which your sick heart is removed from your body and replaced
with a healthy heart from a deceased donor. People need heart transplants because of a condition
called heart failure. This occurs when the heart becomes damaged and weak. The heart is
unable to pump blood the way it should.
Causes of heart failure
Blockage of blood vessels to the heart (coronary artery disease)
Heart attack (myocardial infarction)
High blood pressure (hypertension)
Chronic heart valve problems (due to past rheumatic fever or infection)
A decrease in the pumping ability of the heart muscle for an unknown reason
An infection of the heart itself (myocarditis)
Heart defects present at birth (congenital heart disease)
♥ The heart transplant evaluation
Why is an evaluation done?
What other aspects, besides my health, are considered?
An evaluation is needed to see if you are physically and mentally able to withstand surgery as
well as the long-term follow-up. This includes a number of tests and visits, talking with you
about your recovery, and the care you will need after transplant. We must be sure you have no
serious health problems such as cancer, chronic illness, and tobacco, alcohol, or drug use. You
also must be mentally able to take care of yourself after transplant. This requires having a
support person who can help you during the early months after transplant. In some cases, it
could be for life. Please bring your support person with you to all of your clinic visits. They do
not need to be present for your tests.
My primary support person is: _______________________________________________
♥ Common tests and procedures
What tests and procedures can I expect?
Why are they needed?
You will have many tests performed. A nurse or doctor will explain which ones you need to
have and why. Feel free to ask questions.
Left Heart catheterization evaluates the arteries in your heart to check for blockages. An
intravenous (IV) catheter is placed into an artery and vein in your groin and contrast dye will
be injected into your arteries. You will be given a mild sedative so you should have no pain.
You will need to lie flat for several hours to prevent any bleeding. An adult must drive you
Echocardiogram (an ultrasound) uses harmless sound waves to produce images of the heart.
The sound waves are bounced off the heart and produce images on a computer screen. This
shows the size of your heart, thickness of the heart muscle, pumping strength, valve
problems, and if there is fluid around the heart.
Right-heart catheterization measures the pressures in the chambers of the heart and in the
blood vessels of the lungs. This is done because when the pumping function of your heart is
decreased, some of the blood backs up into the blood vessels of the lungs and increases the
blood pressure. A catheter will be placed on the right side of the neck. If these pressures are
too high, you may be given medicine to try to decrease them.
The metabolic exercise test (EVO2) tells us how your heart sends oxygen to body tissues
during activity. It also gives us more details about your heart rate, heart rhythm, and whether
you stop walking because of shortness of breath, fatigue, or chest pain. This test requires
walking on a treadmill that increases its speed and incline over time. During this time, you
will be attached to a heart monitor (EKG) and asked to breathe into a mouthpiece. Your
blood pressure will also be checked.
Chest x-rays are used to learn more about the size of your heart and the presence or absence
of lung disease. It will also show if you have fluid in your lungs that can be caused by heart
A Urinalysis to ensure you do not have an infection in your urinary tract or bladder.
A dental exam is needed to ensure your mouth and teeth are healthy. You must have a
dental exam and x-ray to be sure that your mouth and teeth do not pose any risk of infection
after transplant. You should make an appointment to see your own dentist for this exam. All
dental work must be done before you are listed for transplant. Any infection in your mouth
could increase your risk for a major infection after transplant.
An eye exam - your eyes will need to be dilated to check the blood vessels.. You should
make an appointment with your local ophthalmologist for this exam.
Vaccines should be given to prevent illness and keep your body in the best possible health.
This could include the pneumovax, hepatitis, influenza, shingles and tetanus toxoid vaccines.
Please make an appointment with your primary care physician to have these completed.
A gallbladder ultrasound allows us to check for gallstones.
An ultrasound of the arteries uses sound waves to check for blockages in your neck
(carotids) and your legs (lower extremities). If these results are abnormal, an angiogram
may be needed. For this test, dye is injected into the arteries.
A bone density scan looks at the condition of your bones. A substance is injected into your
vein and a special x-ray is taken. The test takes about one hour.
An electrocardiogram (EKG) shows how well parts of your heart conduct electrical
currents. You will need to lie still on a table for a few minutes.
A chest CT with contrast is used to see if there is any existing disease of your lungs and
shows the exact structure of the chest.
Pulmonary function tests measure your lung function, capacity, and condition. You will be
asked to take deep breaths and blow through a mouthpiece.
Many blood tests will be drawn during your transplant evaluation. Some of the tests include
blood typing (done twice as required by UNOS), tissue-typing, liver function, kidney
function, electrolytes, and human immunodeficiency virus (HIV).
Mammograms are required for all females over 40. This x-ray of the breasts will show any
abnormalities in the breast tissue.
A colonoscopy is required for all patients 50 and over. This involves placing a thin, flexible
tube (scope) into your intestines to be sure there is no sign of colon cancer or diseases. You
will be given a mild sedative.
More consults and testing may be required as your heart failure team decides what tests you
♥ The people you may meet
During your transplant evaluation, you will meet with many people. As you meet them, you may
wish to jot down their names in the spaces below.
Heart failure nurse coordinator: ___________________________________________
This nurse will help to coordinate your care before transplant. If you have concerns about your
heart failure symptoms continue to contact your heart failure coordinator to address these
A nurse transplant coordinator: ____________________________________________
This nurse will organize your transplant evaluation and help to coordinate your care after
Your UWHC heart doctor (cardiologist):_____________________________________
A medical doctor who is expert in heart care will care for you before, during and after your
transplant. After transplant, you will no longer have one cardiologist assigned to your care but
rather one of a number of highly trained transplant cardiologists all sharing their expertise in
determining your treatment plan. Requests for specific providers are unable to be honored due to
the importance of adhering to the schedule for follow up provided to you at the time of
transplant. This schedule will be developed to evaluate you for rejection at regular scheduled
intervals when the risk of rejection is highest.
Your UWHC transplant surgeon: __________________________________________
These doctors are trained to perform transplant surgeries.
Social worker: ___________________________________________________________
A social worker will talk with you about financial and insurance issues, your living situation, and
support system you have to help you after transplant. The social worker may help you to
complete a Power of Attorney for Healthcare.
Financial coordinator: ____________________________________________________
You will meet with a coordinator to discuss your insurance coverage. You need to know and
understand what is covered and to be sure that you can handle the long-term costs after
transplant. Your medicine costs for life can be very expensive.
Health psychologist: _________________________________________
This person will talk with you about your coping skills and how you might handle living with a
transplanted organ. This includes discussing depression and anxiety, which are common in
people who have had transplants.
Infectious disease: ________________________________________________________
These doctors look to see if you have any infections or any prior diseases that may need to be
treated before or after you have a transplant.
A dietitian will meet with you to talk about your nutritional needs and to discuss healthy food
choices to maintain proper health before and after transplant.
♥ Commitment to follow-up care
How long will I need to follow-up with the heart transplant team?
What type of care is required?
What do I need to do?
Your care after a heart transplant is for an entire lifetime. This long-term care includes:
Keeping the commitment
For a transplant to be a success, you need to commit to:
Follow the treatment plan prescribed by your doctors.
Call your nurse transplant coordinator about any problems and/or symptoms.
Take all prescription drugs as prescribed.
Follow the diet and exercise plan advised by your doctor.
Keep your appointments, clinic visits, lab draws, and biopsies.
Do not abuse your body by smoking, drinking, or using non-prescribed medicines and
The follow-up schedule is fairly intense for the first few months. Biopsies are done to test your
new heart for rejection. This can occur when your body’s immune system attacks your new
heart. During a biopsy, pieces of tissue are taken from the inside of your heart and studied under
a microscope. Biopsies are done:
Weekly for 4 weeks
Every 2 weeks for 8 weeks
Monthly for 3 months
Every 6 weeks until your 1st anniversary
Every 3 to 12 months depending on whether or not you have had rejection during your
More often if you have a rejection
With each biopsy you will also have labs, a chest x-ray, and sometimes an echocardiogram.
These biopsy visits may be as early as 6:45 AM. There are times when we need labs in between
biopsies. We will arrange for you to have these done at a local lab if you live outside of the
Madison area. Lab results tell us how your body is responding to your medicines. You will not
be able to drive for about 8 –12 weeks after your transplant, so be sure that someone can bring
you to your visits during that time.
After your transplant, you will be on many medicines. You will be on some of them for the rest
of your life. This includes drugs which:
Control blood pressure
Prevent bone loss
Provide you with extra vitamins and minerals
Control blood sugars
You will need to know what medicines you are taking, why you are taking them, and the dose
that is prescribed for you. Not taking your drugs correctly can lead to rejection and other health
You must have a local doctor to follow your care. Plan to see your local doctor shortly after your
transplant. We rely on the local doctor to address routine health issues such as diabetes and
minor infections. We will work closely with your doctor to give you the best care. The
Transplant Team will manage your transplant medicines and address any issues about your heart.
You will need to follow the advice of your local doctor and the transplant team in regards to diet,
exercise, and other health needs. We want you to live a normal, healthy life after transplant.
♥ What to expect
What new health concerns will I have after surgery?
What will my activity level be?
How am I going to cope with a new organ and all that is required?
When will I be able to go back to work?
After transplant, people can live a normal, healthy life. The main issues are the increased risks
of infection and rejection. To prevent infections, you will need to take extra care, wash your
hands often, and wear a mask at times. Sometimes, it is best to avoid crowded places, areas with
poor ventilation, or people who may be contagious. The infectious disease clinic visit will go
over your specific hobbies to give you recommendations specific to your life.
The risk of rejection is greatest the first 6 – 12 months after transplant. It is common to have a
rejection. This is the body’s normal immune response to “foreign” tissue. When rejection
occurs, we need to adjust your medicines to suppress your immune system further. These drugs
have side effects that can cause new health concerns. High blood pressure, high cholesterol,
diabetes, and osteoporosis can occur. Most of these side effects can be treated. Diet, exercise,
and how well you follow your treatment plan all affect how you will be able to manage the side
Over time, most patients are able to resume their normal activity with minor adjustments. After
transplant, the cardiac rehab staff will monitor you while you walk and help you develop an
exercise plan that works for you. Please note that it will take some time to gain strength and
endurance. Keeping up with an exercise routine once you’ve finished cardiac rehab is the best
way to manage your weight and improve your well-being.
The evaluation, waiting for a transplant and recovering from surgery can be tough for the patient
and loved ones. It is common to feel anxious, depressed, or frustrated. This may be due to your
medicines as well as the stress of this process. Talk with someone about your feelings. The
transplant team, your nurse, or social worker can help you cope with these emotions. The
transplant team can even help identify a mental health provider locally to help you during this
stressful time. Having this in place can be very beneficial. Sharing your feelings with your loved
ones and others may also be helpful. Most areas have support group meetings for heart
transplant recipients and loved ones to attend.
We encourage patients to return to work after having a heart transplant. You may not be able to
do the same duties as before your transplant. It depends on the type of work you do, but that
doesn’t mean you can’t work at any job. The social worker will meet with you about three
months after transplant to start talking about your return to work and to help you with any
paperwork or questions you may have.
♥ UNOS: Getting on the list
What is UNOS?
What is the process for being placed on the list?
UNOS is a not-for-profit organization mandated by the United States government to ensure the
fair distribution of donor organs that become available for transplant.
Maintains the national list. Transplant center and Organ and Tissue Donation (OTD)
organization staff can check this list 24 hours a day 7 days a week.
Creates policies for transplant centers and OTDs such as how organs are matched and
distributed. To be sure it is fair and promotes good clinical practice, UNOS monitors all
Helps patients and communities learn more about organ donation and transplantation.
This is done through public programs and through the UNOS website,
Tracks data about organ donors and transplant recipients.
UNOS manages the waiting list, matching donor organs to recipients, 24 hours a day, 365 days a
year. You will be listed by blood type, body weight, and how sick you are (or your health
“status”). Your transplant coordinator will explain your status and keep you apprised if it should
Priority is given to patients according to status on the list. Within each status, priority is given to
the patient who has the most high priority time. This ensures the sickest patients are transplanted
The statuses are:
ξ Patients on a Mechanical Circulatory Device and are experiencing device-related
problems. (In addition, any patient who has a device, implanted automatically gets 30
days of 1A time to use at the doctor’s discretion.
ξ Patients on high doses of IV medicines and are in the hospital for management of their
ξ Patients who are at home with either a Mechanical Circulatory Device or on low doses of
IV medicines to manage their heart failure.
ξ Patients who are being managed at home with oral heart failure medicines.
ξ Patients who are not candidates for heart transplant at the present time, but will be a
candidate soon. This is an inactive status.
Your transplant team will review all the findings from your evaluation. The surgeons, heart
doctors, nurses, and all other team members meet and will decide if you meet the criteria to be
placed on the transplant list. Once you are determined to be a candidate, and if you agree, you
will be placed on the UNOS list for heart transplant.
♥ Organ allocation
How does UNOS match organ donors with recipients?
Why might a transplant team turn down an organ offer?
When an organ becomes available, the Organ and Tissue Donation (OTD) organization enters
data into UNOS on-line. This matches a donor with possible heart transplant candidates.
Matches are based on blood type, patient size, and other clinical data. A list of acceptable
patients is then produced by the computer. The person at the top of the list would be considered
first. The first person will be the patient with the highest status that has the most high priority
wait time. This patient must be available and healthy enough for transplant. If, for any reason,
that person is not suitable; the next patient on the list will be contacted.
An organ may be refused by the doctors based on poor medical condition of the donor, poor
organ condition, or candidate unavailability.
♥ Things to consider before being listed on the UNOS list for heart transplant
Obtain a cell phone in order to be contacted 24 hours a day
Plan for travel arrangements to the hospital at the time of transplant
♥ What will I be told about my donor?
Patient confidentiality laws limit how much we can tell you about your donor. We cannot tell
you the donor’s age, gender, location, or personal or health history. Guidelines for allocating
hearts are set by the United Network for Organ Sharing (UNOS). The Organ Tissue Donation
(ODT) organization informs the UW Transplant Program when a heart is found and who is
number one on the UNOS list to receive the organ. The ODT has a thorough screening for all
would-be donors to attempt to find any illness that could affect the transplant organ or the patient
who receives it. Screening for such an illness can be limited by time constraints between the
time that the donor was injured and the organ obtained. We use our best knowledge and
judgment to attempt to ensure every organ we transplant will work and will in no way harm the
patient who receives it.
Increased Risk Donors
You may be offered an organ from a deceased donor that is thought to be an increased risk for
spreading certain infections, such as HIV, Hepatitis B, and Hepatitis C, per Public Health Service
2013 Guidelines. Donors are considered increased risk because of what the Public Health
Department deems to be an increased risk behavior such as prostitution, intravenous drug use,
spending time in prison or male homosexuality. Blood tests are done on potential donors to look
for viruses such as HIV, Hepatitis B, and Hepatitis C. While no test is perfect, false negative
results rarely occur. Using data from organ, tissue, and blood donors we know there is a small
chance (between 1 in 60,000 to 1 in 2,000,000) that an infectious agent could be passed on. We
believe that the risks of accepting the organ are very small or we would not suggest that you
accept it. The transplant coordinator will inform you whether or not the organ offer is from an
increased risk donor at the time you receive the heart offer. You would then decide whether to
accept this type of heart. If you choose not to accept the heart, you will not lose your place on
the waiting list. However, we cannot predict when another organ may be available for you. If
you do decide to accept an organ from an increased risk donor, more blood testing will be
completed before going to the OR for the transplant and again after transplant.
♥ When to call the transplant coordinator while on the UNOS wait list for
ξ If you have an infection or taking antibiotics
ξ If you receive a blood transfusion
ξ If you are hospitalized
ξ If you plan to travel more than one hour away from home
ξ If your insurance changes
♥ Financial planning for transplant
What do I need from my insurance company to plan for a transplant?
What questions about finances do I need to have answered?
As you get ready for transplant, you will need to learn more about your insurance plan.
Transplant patients must take medicines for the rest of their life. In fact, you may need
over 15 different transplant drugs. As a result, you must learn now about your drug co-
pays or deductibles.
You may need to stay in Madison for some time after your transplant. Since most
insurance plans require patients to only fill prescriptions in certain drugstores, know
where you can get them filled both in your hometown and in Madison. Plan ahead for
monthly bills as well.
Many plans have a yearly maximum for co-pays or deductibles. Once you have
reached the limit, your insurance may pay 100%. To know your plan, refer to your
insurance booklet and keep track of your healthcare expenses.
Contact your insurance agent to find out how much you have left before you reach your
lifetime and transplant maximums. This helps you to plan for secondary coverage or
other options to cover any further expense. Once you reach the limit, insurance will not
cover any further expense. Transplant patients often reach their limits.
Know your co-pays and deductibles for clinic visits and procedures. Transplant
patients receive lifelong follow-up care. Knowing your co-pays and deductibles will
ensure that you are prepared to budget for this expense.
Know the referral guidelines of your health plan. UWHC is a hospital-based clinic.
You will get separate bills from the hospital and the doctors for their services. If you fail
to follow the guidelines, you may need to pay for the cost of a service which may have
Once you have received your benefit summary from the financial coordinator, you may have
even further questions. Below are some common questions which other transplant patients have
1. What would be my monthly total co-pay if I were prescribed 15 medicines? What are the co-
pays and deductibles for clinic visits and procedures that I need to pay out of pocket? How
would this expense fit into my budget?
15 X $_____ (the co-pay amount per prescription) = $_____
Monthly clinic and procedure co-pays: $________________
2. My lifetime insurance maximum is: ______. How will I obtain coverage if I reach my
3. What would I do if my insurance was changed or dropped? Call a financial coordinator.
4. My health plan referral guidelines:
Your health care team may have given you this information as part of your care. If so, please use it and call if you
have any questions. If this information was not given to you as part of your care, please check with your doctor. This
is not medical advice. This is not to be used for diagnosis or treatment of any medical condition. Because each
person’s health needs are different, you should talk with your doctor or others on your health care team when using
this information. If you have an emergency, please call 911. Copyright 8/2016. University of Wisconsin Hospitals
and Clinics Authority. All rights reserved. Produced by the Department of Nursing HF#4951