Frequently asked questions about heart transplantation
Whether you are a transplant recipient or someone who wants to learn more about transplantation, you can find answers to many of your questions by taking a look at the following Frequently Asked Questions (FAQs).
We encourage you to speak with your doctor for more information.
- Why is transplantation necessary?
- What is transplantation?
- What diseases or conditions commonly lead to heart transplantation?
- How is heart disease diagnosed?
- How is heart disease treated?
- How will a transplant affect my condition?
- What is the United Network for Organ Sharing (UNOS)?
- How is waiting list status determined?
- What are antibodies and how will they affect my situation as I wait on the list?
- How is heart transplantation done?
- Does the size of the donated heart matter?
- What are the potential complications of heart transplantation?
- What can I expect to experience during post-transplant recovery?
- What can I expect my physical activity level to be post-transplant?
- Will my new heart act the same way as my old one?
- Will I need to weigh myself, take my temperature, or take my blood pressure after surgery?
- What medications will I have to take post-transplant?
- What is Prograf® (tacrolimus capsules)? Prograf® is approved for the prevention of organ rejection in patients who have received a liver, kidney, or heart transplant. Please see Important Safety Information and full prescribing information.
Why is transplantation necessary?
Transplantation is necessary when illness or injury leads to organ failure.
What is transplantation?
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
- Pancreas
- Heart
- Lung
- Intestine
What diseases or conditions commonly lead to heart transplantation?
The most common heart diseases that lead to heart transplantation are ischemic cardiomyopathy and nonischemic cardiomyopathy.
Ischemic cardiomyopathy is when the muscle of the heart wall deteriorates or weakens due to coronary artery disease. As a result, the heart is less able to pump blood efficiently, leading to heart failure.
Nonischemic cardiomyopathy is when the muscle of the heart deteriorates or weakens, but is not due to coronary artery disease. As a result, the ability of the heart to pump efficiently is diminished, leading to heart failure, arrhythmia, and sudden cardiac death.
The possible causes of nonischemic cardiomyopathy are drug and alcohol toxicity, certain infections, and various other unknown causes.
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
- Confusion and/or impaired thinking
- Sweating
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 and heart catheterization
- Echocardiogram
- Electrocardiogram
- MRI
- Doppler ultrasounds
- Ejection fraction
- Nuclear stress test
- Coronary calcium scans
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 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 is the United Network for Organ Sharing (UNOS)?
UNOS is a private, nonprofit organization that matches available organ donors with those awaiting 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 a perfect match are identified, and the organ is offered to the patient 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 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.
The body can also create antibodies against the tissues of other human beings such as that from blood transfusions, pregnancy, or an organ transplant. The antibodies that the body can create after these "sensitizing" events are called anti-human antibodies, or "alloantibodies".
If you have anti-human antibodies in your blood, they may react with the tissue type of the donor, which means that you will 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. Therefore, you may have to wait longer for a more compatible heart.
In order to prevent hyperacute rejection, 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.
In certain situations, plasmapheresis may be used to remove antibodies from the blood. Like hemodialysis, plasmapheresis involves circulating part of the patient's blood through a machine. The blood is removed from the body and is centrifuged so that the formed elements of the blood (red blood cells, white blood cells, and platelets) are separated from the liquid part of the blood (the plasma, which contains the antihuman antibodies and other plasma proteins). The plasma is then replaced with another suitable fluid, such as fresh frozen plasma or albumin solution. The formed elements are then re-suspended in the new fluid and returned to the patient. Immunoadsorption is another technique that can remove antibodies.
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 put into a special solution for preservation until the recipient arrives at the hospital.
Following arrival at the hospital and necessary surgical preparations, the transplant team performs one of two surgeries—orthotopic transplantation or heterotopic 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
- 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 recipient’s heart and the donor heart are joined (the recipient’s diseased heart is not removed)
- The donor heart should start beating once blood flow to the heart is restored
- Following surgery, the recipient will be taken to the intensive care unit and carefully monitored by the transplant team.
Heterotopic transplantation—“piggyback” transplantation
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 heart transplantation?
It is important to remember that transplantation 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, as complications following any type of surgical procedure are common. They usually occur within 6 months of transplantation and will be recognized by your doctors. One of the more common complications of transplantation is rejection. However, thanks to anti-rejection drugs, rejection episodes are less common and can be controlled.
Although such medications help prevent rejection, suppression of the immune system also makes transplant recipients more likely to get infections.
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
What can I expect to experience during post-transplant recovery?
You will 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 for about 3 months. During the first few months, you will be very immunosuppressed, which increases your risk of infection. Therefore, it is often recommended that you wear a mask when out in public. If possible, you may even want to avoid large crowds altogether. You can expect to return to a healthy, active life within 3 to 6 months after your surgery, depending on your doctor’s instructions.
What can I expect my physical activity level to be post-transplant?
In the days immediately following your transplant, you can expect to be tired. Heart transplantation is major surgery. However, you will begin to feel better and stronger each day.
Exercise according to your transplant team’s instructions, generally at least 5 days a week. Increase your time and pace slowly to reach a minimum of 30 minutes a day. Pace yourself because your transplanted heart won’t react as quickly to physical activity as a normal heart does.
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 gain more than 2 to 3 pounds in one day or more than 3 to 5 pounds in one week, call your transplant coordinator or cardiologist.
Your transplant team will also instruct you to take your temperature 3 times a day (morning, afternoon, and evening). 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 medications will I have to take post-transplant?
To help ensure your transplant is a success, your doctor will intend for you to take several different medications to slow down your body's immune system and make your body less likely to reject your transplanted organ. 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 medications (used to prevent or treat infections) or anti-ulcer medications (used to treat digestive problems) may be necessary. Many other medications may also be used but are not discussed here. Always ask your transplant team any questions you might have about the medications your doctor intends for you to take.
Your biggest responsibility post-transplant is keeping your organ, and yourself, healthy. Proper adherence to your regimen is critical to your long-term health.
Medications commonly used in 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.
What is Prograf® (tacrolimus capsules)?
Prograf (tacrolimus capsules) is an immunosuppressant approved for the prevention of rejection in people who have received a liver, kidney, or heart transplant. Anti-rejection medications like Prograf are essential to the success of transplantation. In fact, since approval for rejection prevention for liver transplantation in 1994, for kidney transplantation in 1997, and for heart transplantation in 2006, Prograf has helped more than 100,000 people.
Click here for full prescribing information (PDF - 262 KB)
What is Prograf?
PROGRAF is a prescription medicine used with other medicines to help prevent organ rejection in people who have had a kidney, liver, or heart transplant. PROGRAF is not for use with medicines called cyclosporines (Gengraf®, Neoral®, and Sandimmune®) and is not for use with a medicine called sirolimus (Rapamune®) in people who have had a liver or heart transplant. It is not known if PROGRAF is safe and effective when used with sirolimus in people who have had kidney transplants. It is not known if PROGRAF is safe and effective in children who have had kidney or heart transplants.
Important Safety Information
What is the most important information I should know about Prograf?
Prograf can cause serious side effects, including:
1. Increased risk of cancer. People who take Prograf have an increased risk of getting some kinds of cancer, including skin and lymph gland cancer (lymphoma).
2. Increased risk of infection. Prograf is a medicine that affects your immune system. Prograf can lower the ability of your immune system to fight infections. Serious infections can happen in people receiving Prograf that can cause death. Call your doctor right away if you have symptoms of an infection such as fever, sweats or chills, cough or flu-like symptoms, muscle aches, and/or warm, red, or painful areas on your skin.
Do not take PROGRAF if you are allergic to tacrolimus or any of the ingredients in PROGRAF.
Before you take PROGRAF, tell your doctor if you: plan to receive any live vaccines, have or have had liver, kidney or heart problems, are pregnant or plan to become pregnant. PROGRAF may harm your unborn baby and can pass into your breast milk. You and your doctor should decide if you will take PROGRAF or breastfeed. You should not do both.
Tell your doctor about all the medicines you take, including prescription and non-prescription medicines, vitamins, and herbal supplements. PROGRAF may affect the way other medicines work, and other medicines may affect how PROGRAF works. Know the medicines you take. Keep a list of your medicines and show it to your doctor and pharmacist when you get a new medicine.
How Should I Take PROGRAF?
Do not eat grapefruit or drink grapefruit juice while taking PROGRAF. Take PROGRAF exactly as your doctor tells you to take it. Take PROGRAF with or without food and the same way and time every day. If you take too much PROGRAF, call your doctor or go to the nearest hospital emergency room right away.
PROGRAF may cause serious side effects, including:
high blood sugar (diabetes), kidney problems, nervous system problems, high levels of potassium in your blood, high blood pressure, or heart problems (myocardial hypertrophy). Call your doctor right away if you have any of these symptoms: frequent urination, increased thirst or hunger, blurred vision, confusion, drowsiness, loss of appetite, fruity smell on your breath, nausea, vomiting, stomach pain, muscle tremors, numbness and tingling, headache, seizures, vision changes, shortness of breath, chest pain, feel lightheaded, or feel faint.
The most common side effects of PROGRAF are: tremors (shaking of the body); high blood pressure; kidney problems; diarrhea; headache; stomach pain; trouble sleeping; nausea; pain; weakness or low red blood cell count (anemia); infection; constipation; low levels of phosphate in your blood; swelling of the hands, ankles, or legs; high levels of fat or potassium in your blood; numbness or tingling in your hands or feet; fever; or low levels of magnesium in the blood.
Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of PROGRAF. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Please see the Patient Prescribing Information and Full Prescribing Information for additional safety information.
Read the full prescribing information (PDF - 311 KB)
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