Everything You Need to Know About Getting a Heart Transplant

A heart transplant is a major surgery that involves replacing your diseased heart with a healthy donor heart. It is used as a last resort when drugs and other therapies no longer work in treating advanced heart failure.

Heart failure is a chronic problem that prevents your heart from pumping blood through the rest of your body as it should. The problem can occur as left-sided heart failure, right-sided heart failure, or congestive heart failure.

People chosen to have a heart transplant have the most severe types of heart disease. While there are risks, it may be the only chance for someone with advanced heart disease to live a somewhat normal life.

This article includes information about heart transplants, why they are done, and the process of getting one. It also describes risks, signs of problems, and common outcomes.

Why Are Heart Transplants Performed?

A heart transplant is performed to treat people with end-stage heart failure. The procedure is done when symptoms persist despite therapy with optimal medical, surgical, and device treatment.

Heart failure is the primary reason people receive a heart transplant. Some other reasons transplants are performed include the following:

• Dilated cardiomyopathy is enlargement and weakening of your heart's left ventricle so it becomes unable to pump blood normally.
• Coronary artery disease is a form of heart disease in which fatty deposits called plaques narrow your arteries that supply blood to your heart.
• Restrictive cardiomyopathy is a rare condition in which the ventricles (lower chambers of your heart) become stiff over time and cannot flex normally.
• Hypertrophic cardiomyopathy is a genetic disease in which your heart muscle becomes too thick and prevents your heart from pumping normally.
• Valvular heart disease is a condition in which your heart valves form abnormally or stop functioning properly.
• Congenital heart disease is a type of heart disease in which your heart does not function normally as a result of a heart defect from birth.
  

Who Might Get a Heart Transplant?

People regarded as having the most severe types of heart disease are likely to get a heart transplant. When you are approved for a heart transplant, you are placed on the heart transplant waiting list based on the severity of your condition.

The criteria used to determine disease severity are based on guidelines from the United Network for Organ Sharing (UNOS). UNOS is a private nonprofit organization that manages the U.S. organ transplantation system under contract with the federal government.

Based on UNOS criteria, the heart transplant status levels include the following:

• Status 1: Critically ill and on mechanical support
• Status 2: Hospitalized on mechanical support or with severe ventricular arrhythmia
• Status 3: Hospitalized and having complications with a ventricular assist device
  
• Status 4: Stable with a ventricular assist device or serious heart condition
• Status 5: In need of a dual heart transplant (heart-lung, heart-liver, heart-kidney) and do not meet criteria for status levels 1 to 4
• Status 6: Stable without the need for mechanical support or intravenous (IV) medications
• Status 7: Inactive due to issues such as traveling too far from a transplant center, needing further tests, having certain health problems, or not following your treatment plan

You may be ineligible for a heart transplant if you have one of the following conditions, among others:

• Age 70 or older
• Current or recent history of cancer
• Severe pulmonary hypertension
• Severe cerebrovascular disease (disease of the blood vessels in your brain)
• Advanced kidney, liver, or lung disease
• History of noncompliance with medications
  
• Poorly controlled diabetes
• Obesity, which is considered a body mass index (BMI) of 35 or higher
• Current human immunodeficiency virus (HIV), hepatitis C, or other infection
• Use of tobacco, alcohol, and/or drugs within the previous six months
  

What's the Process for Getting a Heart Transplant?

The process for getting a heart transplant begins with a referral from your cardiologist to a heart transplant center. You will typically be assigned a transplant coordinator to help you navigate the heart transplant process.

Before becoming a candidate for a heart transplant, you will undergo evaluations in the following areas:

• Physical
• Mental
• Social
• Financial

After you receive insurance approval for your pretransplant evaluation, you will undergo a series of tests and exams to assess the functions of your heart, lungs, and other bodily systems which can include the following:

• Blood work
• Echocardiogram (ultrasound imaging of your heart)
• Electrocardiogram (EKG or ECG) (evaluation of your heart's electrical system)
• Cardiac catheterization (evaluation of a heart condition using a flexible tube inserted into your arm or groin and guided into your heart's blood vessels)
• MVO2 (exercise stress test)
• Chest X-ray
• Pulmonary function tests
• Bilateral lower extremity Doppler and carotid Doppler
• Ultrasound of the abdomen/pelvis
• Psychological and social evaluations

Your test results and other considerations, such as the extent of your support system after surgery, will be evaluated by the transplant team. If you are approved for heart transplant surgery, you will be placed on the national transplant list and wait for a suitable donor.

In the meantime, your team will continue to monitor your health to ensure you remain eligible to receive a donor heart when it becomes available.

How Are Donors Found for Heart Transplants?

Donors for heart transplants are people who have been declared dead based on tests that establish brain death. They must be supported on a ventilator to maintain their breathing so their heart can continue beating.

The decision to donate organs is based on consent given by a person before their death or their family members at the time of death. When a heart becomes available, it is entered into the Organ Procurement and Transplantation Network (OPTN), which runs the national database of people waiting for a transplant in the United States.

Typically, a donor heart must meet the following criteria:

• Younger than 65 years old
• Little or no history of heart disease or chest trauma
• No history of exposure to HIV or hepatitis
• Not without blood circulation for more than four hours

When a donor heart is available, it is entered into the OPTN, which matches it to ensure the best possible outcomes. A donor heart is matched to a heart transplant candidate based on factors that include the following:

• Biological factors, such as blood and tissue types, donor height and weight, and organ size
• Urgency of a candidate's need for a transplant
• Length of time a candidate has been waiting for a transplant
• Distance between the donor and transplant hospital

If your transplant team rejects a heart offered to you for transplant, the heart is offered to other candidates in the order that they match to the donor heart.

What Happens During a Heart Transplant?

The process that happens during a heart transplant is carefully planned. When a donor heart becomes available, a retrieval surgeon travels to the hospital where the heart is stored to assess it and transport it to a transplant center. Timing is critical because a retrieved heart only lasts four to six hours after removal from the donor's body.

When a donor heart is found, you will have to go to the hospital immediately to prepare for surgery. Routine heart transplant surgery can be performed in less than four hours while more complex cases can take up to nine hours or longer.

A heart transplant is typically performed using the standard orthotopic approach, which involves the following procedure:

• After you are sedated with general anesthesia, a major incision is made down your chest, followed by splitting your breastbone in half.
• Your major arteries are connected to a heart-lung bypass machine to pump and oxygenate your blood while a ventilator helps you breathe.
• Most of your diseased heart is removed, while the atria (the back half of both upper chambers) is left intact. The front half of your donor heart is attached to the back half of your removed heart.
• After the aorta and pulmonary arteries of the donor heart are connected to yours, you are disconnected from the heart-lung bypass machine so your new heart can begin pumping blood.
• Your incisions are closed.

Rarely, surgeons use an alternative procedure, called the heterotopic approach (also called the piggyback approach), for heart transplant surgery. This involves placing the donor heart on the right side of your chest while your diseased heart remains in place. It is used to maintain circulation when there is a risk of severe acute rejection.

What Are the Risks Associated With a Heart Transplant?

The risks associated with a heart transplant involve all the risks common to other types of surgery. They can include the following:

• Coronary allograft vasculopathy (CAV), a problem in which the coronary arteries (blood vessels that carry blood to the heart muscle) become thick and hard, resulting in serious heart muscle damage
  
• Organ rejection
• Bleeding during or after surgery
• Blood clots that can cause heart attack, lung problems, or stroke
• Breathing problems
• Infection
• Kidney failure
• Primary graft dysfunction (failure of the donor heart to work properly)
• Death

Some of the risks associated with a heart transplant are linked to the medications you must take to prevent or treat your body's rejection of your new heart. Taking these medications can involve the following risks:

• Current or repeated infection that does not improve with treatment
• Poor blood circulation throughout your brain and other parts of your body
• Metastatic cancer (cancer spreads from the organ where it started to one or more other places in your body)
• Severe health problems that can make you unable to tolerate surgery
• Severe health problems that do not improve after the transplant
• Noncompliance with your treatment regimen
• Substance use disorder

What About Organ Rejection?

Organ rejection occurs when your immune system mounts an immune response against the transplanted heart. This occurs because your immune system recognizes your new heart as a foreign body. Organ rejection is part of your immune system's normal defense systems.

After a heart transplant, you must take immunosuppressant drugs to counter the natural response of your immune system against your new heart. However, organ rejection can occur immediately after surgery or months or years later.

Having organ rejection does not mean that your organ transplant was a failure. Between 50% and 80% of heart transplant recipients have at least one rejection episode.

Make sure to keep all regular follow-up appointments after your transplantation. Contact your healthcare provider immediately if you have any of the following symptoms of organ rejection:

• Feeling weak or tired
• Dyspnea (shortness of breath)
• Tachycardia (fast or irregular heartbeat)
• Drop in blood pressure
• Edema (swelling) in your hands, feet, legs, or abdomen
  
• Flu-like aches and pains
• Sudden weight gain
• Reduced amounts of urine
• Dizziness or fainting
• Nausea or loss of appetite

Warning Signs of Infection After a Heart Transplant

Warning signs of infection after a heart transplant require immediate care. The main sign of infection is typically a fever higher than 100.4 degrees F. Contact your healthcare provider if you have any of the following signs of infection after a heart transplant:

• Excessive fatigue
• Unexpected bleeding
• Black stools
• Abdominal pain and cramping
• Vomiting, especially if vomit contains blood
  
• Diarrhea that persists for more than two loose stools
• Dyspnea (shortness of breath)
• Chest pain
• Severe headache
• Confusion, light-headedness or loss of consciousness
• Edema in your hands, feet, legs, or abdomen

Signs of infection at the surgical incision can include the following:

• Redness
• Drainage
• Warmth
• Pain

Can You Lead a Normal Life After a Heart Transplant?

For many people, it is possible to lead a normal life after a heart transplant. There are no specific activity restrictions for people who have heart transplants. However, your outlook and limitations may vary based on many factors, including your age and other medical conditions, so it is difficult to predict how long your heart transplant will last.

Generally, the heart transplant survival rate is excellent. In the United States, the average survival rate after heart transplantation is 91%. Research indicates that about half the people who received heart transplants between 1990 and 2007 in the United States were alive at 10 years after their heart transplant.

A heart transplant enables most people with previous end-stage heart failure to resume a normal life. At three years post surgery, about 75% of people with heart transplants have no or minimal symptoms and live without limitations to daily activities. At five years after a heart transplant, about 45% of patients work at least part-time.

The median survival rate for people with heart transplants is longer than 12.5 years and it improves every decade. If you outlive your donor heart, you may have the possibility of a re-transplantation (a second transplant) based on your condition at the time your new heart fails.

Are Heart Transplants Covered By Insurance?

Heart transplants are typically covered by both private and public insurance, including Medicare and Medicaid. However, the degree of coverage you receive varies widely.

Factors include the type of plan you have, the medical facility used, and the type of procedures you require. Even with health insurance, you should expect to pay out-of-pocket costs for coinsurance and deductibles.

According to a 2020 report by Milliman Research, the total costs billed for a heart transplant in the United States before insurance is over $1.6 million. The charges include the following:

• Pre-transplant services, such as testings and evaluations for the 30 days before surgery
• Retrieval and costs involved in acquiring of the donated organ
• Hospital facility and surgery charges
• Physician services
• Post-transplant medical care
• Prescription medication, including immunosuppressant drugs

Your medical facility may require proof that you can meet your financial responsibilities. If you need a heart transplant, your facility may assign a financial adviser to help you understand payment options like secondary insurance and grants that may help pay your portion of the procedure's costs.

Summary

A heart transplant is done when there are no other options for treating your diseased heart. When faced with severe end-stage heart disease, a heart transplant may be your only option to survive.

The process of getting a heart transplant is lengthy and stressful. However, the outcome of a heart transplant can give you the chance to live a somewhat normal life compared to living with heart disease.

While a heart transplant is risky, the survival rates are very good. A strong support system, adherence to follow-up care, and a medication schedule can support optimal results.