The Heart Transplant Process HF#4951



Welcome to University of Wisconsin Hospital and Clinics.  This handout is designed to help you learn more about having a 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.

 

♥ Is a heart transplant right for me?

 

• Why do people need heart transplants?
• How are people referred to the transplant team?

 

A heart transplant is a surgery in which your old, sick heart is removed from your body and replaced with a healthy heart from a 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 (cardiomyopathy)
• An infection of the heart itself (myocarditis)

• Heart defects present at birth (congenital heart disease)

 

You have been referred to the UW Heart Transplant Program because your heart doctor feels you may need a heart transplant.  This process begins with a phone call to the Heart Transplant Program.  The call can be made by you, your family, or your doctor.  A nurse coordinator will ask for your medical records to be sent to our office.

 

Once we receive them, the Heart Failure Team and transplant doctors review them and decide if a heart transplant is right for you.  If the team feels you would be a good candidate, you will be scheduled for a clinic visit.  This begins your evaluation process.

 

♥ Having a 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 physical exam and talking with you about your recovery and the care you will need to do 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 receive an organ.  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 for your first meeting with the transplant coordinator.

 

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.

 

___   Heart catheterization evaluates the arteries and pressures in your heart.  An intravenous (IV) is placed into an artery and vein in your groin.  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 home.

 

___   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 disease.

 

___   A 24-Hour urine for creatinine clearance and total protein shows us how well your kidneys are working.  Some medicines that you will need after transplant may cause some kidney damage.  As a result, we need to find out if your kidney function is normal before transplant.  This test requires you to collect all of your urine for 24 hours in a large jug.  We will provide you with a jug. 

 

___   Skin tests are used to check on past or present exposure to diseases such as tuberculosis. These tests will be done in the clinic by one of the Heart Failure Coordinators.

 

___   Vaccines may be given to prevent illness and keep your body in the best possible health.  This could include the pneumovax, hepatitis, influenza, and tetanus toxoid vaccines.

 

___   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 need.

 

♥ 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.

 

A nurse transplant coordinator: ____________________________________________

This nurse will help to coordinate your care after transplant. 

 

Your UWHC heart doctor (cardiologist): _____________________________________

A medical doctor who is expert in heart care will care for you before, during and after your transplant. 

 

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.

 

Dentist: ________________________________________________________

You must have a dental exam and x-ray to be sure that your mouth and teeth are healthy.  You may prefer to see your own dentist for this exam.  All major 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.

 

Dietitian: ________________________________________________________

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 do follow-up care?
• What type of care is required?
• What things do I need to do?

 

Your care after a heart transplant is for an entire lifetime.  This long-term care includes: 

• Biopsies
• Labs
• Medicines
• MD/clinic visits

 

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 herbals.

 

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 1^st anniversary.
• Every 3 months during the 2^nd year.
• More often if you have a rejection.

 

With each biopsy you will also have labs, a chest x-ray, and sometimes an echocardiogram.  Often, 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:

• prevent rejection.
• prevent infections.
• control blood pressure.
• control cholesterol.
• 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 problems. 

 

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 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 effects. 

 

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.

 

Adjusting to a new heart can also 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 having a new heart.  Talk with someone about your feelings.  The transplant team, your nurse, or social worker can help you cope with these emotions.  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.

 

UNOS:

• Maintains the national list.  Transplant center and Organ Procurement Organization (OPO) staff can check this list 24 hours a day 7 days a week. 
• Creates policies for transplant centers and OPOs such as how organs are matched and distributed.  To be sure it is fair and promotes good clinical practice, UNOS monitors all transplant matches. 
• Helps patients and communities learn more about organ donation and transplantation. This is done through public programs and through the UNOS website, http://www.unos.org.  
• 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 change.

 

Priority is given to patients according to status on the list.  Within each status, priority is given to the patient who has been on the list the longest.

 

The statuses are:

1A: 

1. Patients on a Mechanical Circulatory Device that is having device-related problems. (And any patient who is on a device automatically gets 30 days of 1A time to use at the doctor’s discretion). 
2. Patients on high doses of IV medicines and are in the hospital

1B: 

1. Patients who are at home with either a Mechanical Circulatory Device or low doses of IV medicines.

2:

1. Patients who are being managed at home with oral heart failure medicines

7:

1. Patients who are not candidates for heart transplant at the present time, but will be a candidate soon.

 

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 Procurement Organization (OPO) enters data into UNOS on-line.  This matches heart transplant candidates with possible donors.  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 waited the longest.  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 doctorss 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, or personal or health history.  Guidelines for allocating hearts are set by the United Network for Organ Sharing (UNOS).  The Organ Procurement Organization (OPO) informs the UW Transplant Program when a heart is found and who is number one on the UNOS list to receive the organ.  The OPO 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.

 

“High Risk” Donors

 

You may be offered an organ from a deceased donor that is thought to be high risk for spreading certain infections according to the Center for Disease Control (CDC) guidelines.  Donors are considered “high risk” because of what the CDC deems to be a high risk behavior such as prostitution, intravenous drug use, or 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 donor is a high 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 a high 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 heart transplant

 

• If you have an infection or taking antibiotics.
• If you receive a blood transfusion.
• If you are hospitalized.
• If you plan to travel more than one hour away from home.

 

♥ 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 Madisonfor 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 been covered.

 

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 found helpful.

 

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 lifetime max?

 

 

3.    What would I do if my insurance was changed or dropped?  Call a financial coordinator.

 

 

4.    My health plan referral guidelines:

 

The information provided should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Any duplication or distribution of the information contained herein is strictly prohibited.

Last Updated: 03/10/2010

Copyright © 03/10/2010 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. HF#4951

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