Commonly asked questions
for your heart transplants

Whether you are a transplant recipient or you are someone who wants to learn more about heart transplants, you can find answers to many of your questions by taking a look at the following frequently asked questions.

We encourage you to speak with your doctor for more information.

Before your heart transplant

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Why is a heart transplant necessary?

Heart transplants are necessary when illness or injury leads to organ failure.

What is transplantation?

Heart transplantation is the surgical removal of a healthy organ from one person for placement into another person to replace a sick or injured organ.

Organs that can be transplanted include:

  • Liver
  • Kidney
  • Heart
What diseases or conditions commonly lead to heart transplants?

Common causes that may lead to heart transplantation are cardiomyopathy and coronary artery disease. Other conditions that may lead to heart transplantation include heart failure, unstable heart arrhythmias, and congenital heart defects.

4 types of cardiomyopathy
  • Dilated cardiomyopathy — occurs in men more than women; the left ventricle stretches (dilates) and thins causing the inside of the ventricle to enlarge; the heart muscle can't contract normally and can't pump blood normally leading to heart failure, arrhythmias, blood clots in the heart, or valve problems.
  • Hypertrophic cardiomyopathy — defined by a thickening of the ventricle walls that blocks blood flow out; this increases the blood pressure in the ventricles and the blood vessels of the lungs; may lead to arrhythmias or sudden cardiac arrest after vigorous exercise especially in athletes.
  • Restrictive cardiomyopathy — occurs when scar tissue replaces normal heart tissue leaving the ventricles unable to relax normally; the ventricles fill with blood resulting in decreased blood flow and arrhythmias or heart failure.
  • Arrhythmogenic right ventricular dysplasia (ARVD) — occurs in the right ventricle when normal tissue is replaced with scar tissue leading to arrhythmias; this occurs most often in teens or young adults.
Symptoms of heart disease

The most common symptoms of heart disease are:

  • Shortness of breath
  • Increased heart rate or irregular heartbeat
  • Tiredness, fatigue
  • Lack of appetite, nausea
  • Persistent coughing or wheezing
  • Swelling in different parts of the body
How is heart disease diagnosed?

If you are experiencing any symptoms of heart disease, contact your doctor immediately. Heart disease can only be detected through medical tests. You and your doctor will work together to decide what tests are necessary for you. These tests may include:

  • Blood tests
  • Chest X-rays
  • Cholesterol screening
  • Coronary angiography (heart catheterization)
  • Echocardiogram
  • Electrocardiogram
  • MRI
  • Doppler ultrasounds
  • Ejection fraction
  • Stress test

Once the specific type of heart disease is diagnosed, your doctor will decide which treatment is right for you.

How is heart disease treated?

There are many different types of heart disease. Each disease has a certain type of treatment. In general, most heart diseases can be treated with medications, surgery, and adopting a healthy lifestyle. However, not everyone responds to treatment. If a person develops end-stage heart failure, his or her doctor may recommend a heart transplant.

How will a heart transplant affect my condition?

A heart transplant is a treatment for heart failure, not a cure. Even after surgery, you may still have the condition that caused your heart to fail. For example, if your heart failed because of coronary artery disease, you will need to continue to take medications to reduce cholesterol levels. If you have high blood pressure, you will need to take medications to control your blood pressure. And you will be instructed to take additional medications after transplant as well as follow a healthy, low-fat diet.

What are antibodies and how will they affect my situation as I wait on the list?

Your immune system produces certain kinds of proteins called antibodies that help protect your body from infectious agents such as viruses. After someone is exposed to an infectious agent and creates antibodies against it, the person is "immune" to the specific disease caused by the infectious agent. The antibodies created are then ready and waiting to destroy the infectious agent if it tries to invade the body again.

If you have anti-human antibodies in your blood, they may react with the tissue type of a heart donor, which means that you would not be able to receive a heart from that donor. The antibodies in your blood would attack and damage the heart immediately after transplantation. This is called "hyperacute rejection" which usually results in loss of the transplanted heart.

Panel reactive antibody (PRA) tests or crossmatching is performed before the transplant. If you have a high PRA, you have to wait longer for a more compatible heart. A "positive" crossmatch means that the transplant should not be done because of the high risk for hyperacute rejection. A "negative" crossmatch indicates that it is okay to proceed with the heart transplant.

What is the United Network for Organ Sharing (UNOS)?

UNOS is a private, nonprofit organization that matches available heart donors with those awaiting a heart transplant through the national Organ Procurement and Transplantation Network (OPTN). UNOS administers this program under contract with the US Department of Health and Human Services. Members of UNOS include all transplant programs, organizations that find organs, and tissue typing laboratories in the United States.

UNOS guarantees that all persons who need a transplant have an equal opportunity to receive their organs, regardless of age, sex, race, social status, etc. Who gets an available organ is determined by a number of factors, including the length of time a person has been on the waiting list, blood type (A/B/O typing), body size, and health status as determined by UNOS criteria. If you would like to learn more, contact UNOS at 1-888-894-6361.

How is waiting list status determined?

The status of a person awaiting a transplant organ is determined by such factors as severity of disease and time on the waiting list. When a donor organ becomes available, the people for whom that organ is the most appropriate match are identified, and the organ is offered to the recipient who has the most urgent need for the organ, based on his or her current health status. Therefore, the sickest people receive organs before those whose health status will allow them to wait longer for their transplants.

What questions should I ask concerning finances?

Here are some important questions to ask before your surgery. Be sure to bring these with you to your meeting with your transplant financial coordinator.

  • What is the average cost for a transplant, including care required before and after the transplant?
  • Is treatment for my medical diagnosis covered?
  • Is there a pre-existing clause for my plan? If so, what are the terms?
  • Will my illness be considered a pre-existing condition?
  • Will I have to pay for a portion of the costs? If so, about how much?
  • What financial coverage does the hospital accept (Medicare, Medicaid, private insurance, etc.)?
  • What can I do if my financial coverage runs out?
  • Are there deductible and co-payment amounts? If yes, what are they?
  • Does my plan cover expenses such as travel, food, and lodging while I am at the transplant center? Will it cover these expenses for my family?
  • If my plan covers travel, food, and lodging costs, how much will it pay? Will it cover the cost of a person to come with me?
  • Will my insurance require pre-approval for any of my treatment?

During your heart transplant

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How is heart transplantation done?

The healthy heart is obtained from a donor who is brain-dead but has been kept on life support. The heart is then preserved until the recipient arrives at the hospital.

Following arrival at the hospital and necessary surgical preparations, the transplant team performs an orthotopic transplantation.

Orthotopic transplantation
  • The recipient will first receive general anesthesia.
  • A bypass machine will be hooked to the arteries and veins of the patient so oxygenated blood can keep flowing throughout the body.
  • The surgeon will open the chest cavity of the recipient.
  • The diseased heart will be removed and the donor heart will be put into place.
  • The new heart should start beating after blood flow is restored — an electric shock may be needed.
Does the size of the donated heart matter?

Organ size (which can be affected by gender and weight of donor) is critical in matching a donor heart with a recipient. It is important that the surgeon ensure that your new heart will fit into your chest without pressing against or interfering with other organs and structures in the area.

What are the potential complications of a heart transplant for the recipient?

It is important to remember that a heart transplant is a serious surgery and risks still remain. Talk to your transplant team about what you can expect and make sure your concerns are addressed. You should not be surprised if there are some complications following your procedure. Complications following any type of surgical procedure are common.

One of the more common complications of transplantation is rejection. However, thanks to anti-rejection medication, rejection episodes are less common and can usually be managed.

In transplanted hearts, the sensory nerves are no longer intact, so there are usually no obvious symptoms that you can feel when there is a problem. This is why people with heart transplants must see their doctor regularly to have their heart biopsied. Often, this is the only way to be certain that rejection or infection is occurring. The following may signal a potential problem:

  • Fever over 100°F (38°C)
  • Flu-like symptoms such as chills, nausea, vomiting, diarrhea, tiredness, headache, dizziness, or body aches and pains
  • Coughing up yellow or green mucus
  • A dry cough that lasts for more than 1 week
  • Severe diarrhea
  • A burning feeling when you urinate
  • Vaginal discharge or itching
  • A wound that oozes fluid, does not heal, or feels warm
  • Swelling, warmth, redness, pain, or tenderness of an arm or leg
  • Pain or tenderness over your transplant site
  • Retaining fluids or having sudden weight gain
  • Shortness of breath
  • Sudden rise in blood pressure
  • Change in pulse rate
  • Tiredness
  • Lower amount of urine

After your heart transplant

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What can I expect to experience post-heart transplant?

You will typically stay in the hospital for 1 to 2 weeks following surgery. Your doctor will perform frequent biopsies to make sure your body is not rejecting your heart. You will be given a new medication regimen that may include immunosuppressant, anti-bacterial, anti-viral, and anti-fungal medications.

After you are released from the hospital, you will be closely monitored. During the first few months, you will be very immunosuppressed, which increases your risk of infection. Therefore, it is often recommended that you avoid large crowds for the first few months. Several months after your surgery depending on your doctor's instructions you can generally expect to return to a healthy, active lifestyle.

Will my new heart act the same way as my old one?

Your heart will react differently to physical activity after transplant. This is because the nerves that connected your original heart to your nervous system were cut during the transplant surgery (denervated). Because these nerves will not heal, your heart cannot respond immediately to exercise, sudden movement, or emotional stress like fear. It does react, but not nearly as fast. It may take some time to get used to how your new heart responds.

Will I need to weigh myself, take my temperature, or take my blood pressure after surgery?

As part of your post-transplant care, you will have to weigh yourself daily. Rapid weight gain can be a sign that your heart is not pumping efficiently. If you have unexpected weight gain, call your transplant coordinator or cardiologist.

Your transplant team will also instruct you to take your temperature a few times a day. A fever can be one of the first signs of infection. You may also be asked to measure your blood pressure to ensure that your heart is pumping blood through your body efficiently.

When preparing for your surgery, make certain that you have a scale, thermometer, and blood pressure cuff at home. These items may be given to you by your transplant coordinator.

What can I expect my physical activity to be post-transplant?

In the days immediately following your heart transplant, you can expect to be tired. Transplantation is major surgery. However, you will begin to feel better and stronger each day — and you may be encouraged to resume physical activity, including work.

Exercise according to your transplant team's instructions, generally at least 5 days a week. Start with something simple, like walking. Increase your time and pace slowly to reach a minimum of 30 minutes a day. Pace yourself so you don't feel rushed or overtired. Your transplant team will help you plan a proper exercise program.

What medications will I have to take post-heart transplant?

To help ensure your heart transplant is a success, your doctor will prescribe several different medications to slow down your body's immune system and make your body less likely to reject your transplant heart. This process is called immunosuppression.

Although your doctor will work to prevent rejection, it can still occur. If you experience a rejection episode, your doctor may decide to treat it with different or additional medications, or simply with a dose adjustment of the medication or medications that you are already taking.

Sometimes medications such as anti-infective (used to prevent or treat infections) or anti-ulcer (used to treat digestive problems) medications may be necessary. Many others may also be used but are not discussed here.

Always ask your transplant team any questions you might have about the medications your doctor has prescribed for you.

Your biggest responsibility after a heart transplant is keeping your organ, and yourself, healthy. Proper adherence to your regimen is critical to your health.

Medications commonly used in heart transplantation include:

Because some medications may produce unwanted side effects, it is important that you ask questions and talk freely with your transplant team about how you are feeling.