The Sentara heart transplant patient experience

The United Network for Organ Sharing (UNOS) is the organization responsible for managing solid organ transplants in the United States. UNOS is responsible for maintaining the national transplant waitlist and matching potential donors with people waiting for a transplant. They create policies that maximize the use of the limited number of donor organs and ensure a fair transplant process.  Additionally, they manage information on every transplant that occurs in the United States and provide education to the public about organ donation and transplantation.  

Most patients with heart failure can be effectively treated with medications.  In some cases, surgery is required to fix blocked arteries or abnormal heart valves. Heart transplantation is an option only after all other available treatments have been tried and failed to improve heart function.  

Heart transplantation has been used to treat many different types of heart failure successfully. Each person’s medical history must be evaluated individually to determine the best possible treatment, and the only way to determine if having a heart transplant is the best treatment for your heart failure is to undergo a heart transplant evaluation.

There are four reasons for the heart transplant evaluation: 

1. To determine the extent of your heart disease.
2. To find out the health of your other body systems (lungs, liver, kidneys, etc.).
3. To allow you and the team to decide if transplantation is right for you.
4. To allow you to meet members of the transplant team.

We want to learn more about you, and we expect you will have questions for us as well. Evaluation consists of several tests, blood work, and interviews with transplant team members. The tests and interviews require several days to complete. If some of the tests have already been performed, please notify the transplant team. You may not need to repeat them. During this time, the test results are gathered, analyzed, and presented at a transplant team meeting.

Heart transplantation is considered for men and women less than 73 years old who, except for heart failure, have no other significant disease or health problems. Individuals considered for heart transplantation have had maximum medical and surgical treatment for their heart disease, but their heart function continues to decline, and recovery of heart function is not expected.  

Individuals who use tobacco products, drink alcohol excessively, or use illicit drugs, and who are unable to change their lifestyle, would not do well after a heart transplant; they will not be accepted into the program. Smoking dramatically increases the chance of infections and heart disease, and substances such as alcohol or street drugs interfere with the function of the medications needed to keep you healthy after transplantation.  

Individuals who lead a healthy lifestyle are more likely to experience a successful recovery after a heart transplant.  

Sentara treats all stages of heart failure. We offer a range of devices, procedures and resources, including our Heart Failure Patient Toolkit, a comprehensive guide for managing heart failure. We employ the most up-to-date drug and device therapies to improve quality of life and survival in patients with advanced heart failure. You may experience some of our other treatments before your heart transplant.

Heart failure treatments at Sentara

The transplant cardiologist, along with the transplant coordinator, will determine the necessary tests based on your medical history and current condition. You may not need all the tests described below, or you may need additional tests not listed here. Your transplant coordinator will discuss the tests that have been ordered with you.

Testing may include:

• Left/Right heart catheterization
• Pulmonary Function Testing (PFT)
• Blood tests
• Echocardiogram
• Abdominal ultrasound
• Carotid ultrasound
• Arterial Brachial index test
• A CAT scan of the chest
• Routine health maintenance testing

As you talk to various members of the transplant team, you will need to think about the impact heart transplantation will have on you and your family. Please write down any questions you may have and plan to discuss them with members of the transplant team during your meetings. You can also contact your coordinator through the transplant office.

When all the test results are available, the transplant team will meet to decide if heart transplantation is the best treatment for you.  A member of the transplant team will discuss your test results with you and give you the team’s recommendations.  If it is determined that a transplant is the best treatment for your heart disease, you will be asked to commit to follow-up care.  You may also be asked to make a written commitment to abstain from smoking or alcohol use.  If it is determined that a transplant is not the best treatment option for you, the transplant team will provide you with recommendations for further treatment. 

Our heart transplant team comprises an experienced and dedicated team that coordinates your care to ensure the best possible outcome. The team includes:

• Cardiologists
• Cardiothoracic surgeons
• Dietitian
• Financial coordinator
• Immunologist
• Infectious disease specialist 
• Nurse practitioner
• Patient navigators
• Pharmacists
• Social workers

Patients, their families, and their referring physicians are also important members of the team. We make every effort to include them in decision-making throughout the heart transplant process. We encourage our patients to continue seeing their primary care physicians for ongoing care, including annual examinations, vaccines and other medical needs.

For people whose hearts are too weak to pump blood effectively, a ventricular assist device (VAD) can offer new strength and stability. This small, implanted mechanical pump helps the heart circulate blood throughout the body. After surgery, many people notice a big improvement in their symptoms and enjoy a better quality of life that can last for years. Often, this is a first step before a heart transplant.

Sentara offers the latest Ventricular Assist Devices (VAD), including the most common VAD, the left ventricular devices (LVAD). Some heart transplant patients may need an LVAD to help their heart while waiting for a heart transplant. The LVAD provides critical support until a donor heart is available. You may hear the LVAD referred to as bridge-to-transplant therapy.

LVAD support for Sentara heart transplant patients

A new heart will mean new responsibilities. If it is determined that a heart transplant is the best treatment for your heart disease, you will be asked to commit to follow-up care. 

The main areas of commitment to consider are: 

• Taking daily medications for the rest of your life
• Keeping clinic appointments
• Living a healthy lifestyle after a heart transplant

We will also expect you to keep in close contact with the transplant team regarding any changes in your health because of the potential impact on your new heart. 

You will also need someone to drive you to your clinic appointments after your heart surgery until you are well enough to drive yourself, usually about 6 weeks.  Be prepared to talk about your plans with the coordinator and the social worker. 

Once you’re approved and placed on the national waiting list for a heart transplant, the next step is waiting for the right donor match. Sentara partners with the United Network for Organ Sharing (UNOS), which manages the national transplant database. When a donor heart becomes available, it’s matched based on several medical and logistical factors, including:

• Blood type compatibility (A, B, AB, O)
• Body size and heart size
• Medical urgency and priority level
• Geographic location and how quickly the heart can reach the recipient safely
• Antibody levels and other lab test results that indicate compatibility

Because every match must be unique and safe, the waiting time can vary greatly, from a few weeks to several months or longer, depending on your medical condition and donor availability.

There’s no exact timeline for when a heart will become available. Factors such as your blood type, height, weight, urgency, and overall health can influence your wait time.

While you wait, your Sentara transplant team stays in close contact. You’ll have regular check-ups, lab work, and testing to ensure you remain healthy and ready for surgery when a donor heart becomes available.

If your heart failure worsens while you wait, your care team may adjust your medications, recommend a ventricular assist device (VAD) for temporary support, or coordinate other treatments to help you stay strong.

The waiting period can be both physically and emotionally challenging, but you are not alone. The wait for a heart transplant ranges from several days to more than several years.  The transplant team will talk to you about how long you can expect to wait for a heart transplant and which status matches your situation.

The Sentara transplant program provides comprehensive support to help you and your loved ones through this time:

• Transplant coordinators guide you through next steps, testing, and ongoing readiness.
• Nurse navigators and social workers provide resources for financial, emotional, and practical needs (like housing, transportation, and insurance questions).
• Dietitians help you maintain heart-healthy eating habits that support your body’s readiness for surgery.
• Support groups connect you with others who have gone through the transplant journey.
• 24/7 on-call coverage ensures the team can reach you at any time if a donor heart becomes available.

Your transplant coordinator will also advise you on preparing a “go bag” and checklist for when you receive the call so that you can head to the hospital quickly and confidently. You will need to be on your way to Sentara within in 30 minutes of notification by the transplant coordinator. 

Sometimes patients must wait in the hospital for their new heart so they can receive extra medical support for their heart failure. 

Support from your family and friends will be very important during your wait. 

After you receive a call that we have a donor heart for you, you must not eat or drink anything, or stop for any reason except refueling or restroom breaks, unless there is a true emergency. 

You should bring your medication list with you, an extra bag of medicine if you are on an IV infusion or extra batteries if you have a VAD. The transplant coordinator will inform you of the location for your arrival. Where you go depends on the time of day and the day of the week. 

During surgery, you will have an incision made down the length of your breastbone (sternum). Your diseased heart is removed when the donor heart arrives in the operating room. Your new heart is then sewn into place. 

Each person recovers at their own rate, but patients who were active before surgery are usually ready to go home seven to ten days after the transplant procedure. When they are ready to leave the hospital, most patients can walk several laps around the hospital floor without difficulty. Patients who were bedridden and very weak before surgery may take longer to recover.

For the first four to six weeks after surgery, you will have some restrictions on your activity while your incision heals on both the inside and the outside. The team will review everything you need to know before you leave the hospital.

Your transplant team will monitor you closely for any complications that may come up after surgery.

Complications after surgery may include:

• Failure of the heart to pump
• Stroke
• Bleeding
• Blood clots
• Infection
• Rejection
• Damage to nerves
• Increased risk of cancer
• Renal failure
• Blocked coronary arteries in your new heart
• Side effects from the anti-rejection medications

There are treatments available for these complications; however, some may be fatal. The transplant coordinator will discuss these potential complications with you in greater detail.

Recovery doesn’t end when you leave the hospital. It’s the start of a lifelong partnership between you and your transplant team. In the first months after surgery, you’ll visit frequently for lab work, imaging and heart biopsies to monitor how your new heart is functioning and to detect any early signs of rejection. 

Your care team will also help you adjust to your new medications, which prevent rejection and infection while supporting long-term heart health.

As time passes, your visits become less frequent, but ongoing care remains crucial. Regular follow-ups help manage your medications, monitor changes in blood pressure and cholesterol levels and support your emotional and physical well-being. Sentara’s transplant team partners with you for the rest of your life to help you stay healthy, active, and confident in your recovery.

Follow-up care is an important part of ensuring your heart is functioning correctly.

Your long-term success also depends on caring for your whole self. This means following a heart-healthy diet, staying physically active as recommended by your care team and avoiding tobacco and excessive alcohol consumption. Sentara offers resources to help you return to everyday activities, manage stress and stay connected with others who’ve been through the transplant journey. With the right balance of medical care, healthy habits, and emotional support, most transplant recipients enjoy many active, fulfilling years with their new heart.

Sentara Clinical Nutrition services

Cardiac rehabilitation (rehab) helps strengthen the heart and body after a cardiac event, such as a heart attack, heart surgery or heart transplant. Our specialists work with you, one-on-one, inpatient and outpatient, to help you regain endurance and stamina and return to the activities you love.

Cardiac rehab at Sentara