Heart Transplant: What to Expect

At the Washington University and Barnes-Jewish Transplant Center, we provide all the information and care you need to handle the physical, emotional and financial issues involved in transplantation. We are here for you before, during and after the transplant process, offering you guidance every step of the way.

Learn more about:

• Before Heart Transplant: What to Expect
• After Heart Transplant: Follow-Up Care
• Support for Patients and Caregivers

Before Heart Transplant: What to Expect

We understand that preparing to receive a heart transplant can be a stressful and emotional time, involving complex medical decisions. We take the time to thoroughly evaluate each patient and answer your questions and your family’s concerns.

Evaluation and Waitlist

Each patient completes a transplant evaluation to determine if a transplant is the best option available. Patients approved for a transplant then are assigned to the transplant waitlist.

Here is what to expect during the transplant evaluation and waitlist period:

1. The evaluation consists of 2 to 3 days of testing and consultations at our Center for Advanced Medicine. In most cases, the evaluation tests are completed on an outpatient basis, so you will not be hospitalized.
2. After all tests are complete, our transplant team will thoroughly review and discuss your results and condition, as well as the best options for your health.
3. If the transplant team decides that a transplant is your best option, you will be given the opportunity to go on the United Network for Organ Sharing (UNOS) waitlist for a heart transplant. This is a nationwide list of all people in the country who are awaiting transplant. UNOS assists with the matching, transporting and sharing of organs throughout the U.S.
4. Every person on the UNOS heart transplant waiting list is assigned a status. This status is an important factor in determining your priority for receiving a heart transplant. The system lists patients based on heart status, blood type, size match to the donor organ and geographic distance between the transplant candidate and the hospital where the donor’s heart is located.
5. If you are not a candidate for a heart transplant, the team will discuss other options with you. These options may include artificial heart devices.

Transplant Coordinator Services

At the beginning of the transplantation evaluation process, you will be assigned a transplant nurse coordinator. The transplant coordinator will be your “lifeline” point of contact during your care. A transplant coordinator is available to you 24/7 if emergency care is needed.

The transplant coordinator will help you to understand:

• The steps to make a decision about whether to receive a transplant
• The testing and other aspects of the transplant evaluation
• How long the process takes
• How the United Network for Organ Sharing (UNOS) waitlist and organ allocation system works

After a transplant, another nurse coordinator will continue to follow your care for the rest of your life. This specific nurse will stay in touch with you to share lab work, results of follow-up testing and other information you might need.

After Heart Transplant: Follow-Up Care

As you recover from surgery, our heart transplant team will follow you closely. In the first few weeks after transplant, we will see you frequently in our outpatient clinic. If you live outside the St. Louis area, we help you arrange temporary lodging near the hospital during this time.

Over time, we will transition routine care to your primary care physician, whom we communicate with regularly. However, for continuity of care and to ensure the best outcome for you, we will follow you for the life of your transplant, while working closely with your doctor.

Follow-up care after a transplant is individualized, but patients often experience the following:

1. The first 4 weeks: You will have clinic visits once a week for the first 4 weeks after you go home from the hospital.
2. Biopsies during the first month: You will have biopsies every 7-10 days for the first month to check for potential rejection.
3. The next 2 months: We will see you every 2 weeks for the next 2 months for a biopsy and clinic visit.
4. The rest of the first year: We will see you monthly for a clinic visit. You may have a biopsy or AlloMap testing to check for potential rejection.
5. Once per year afterward: We will see you once per year for follow-up after the first year, and we will no longer do regular biopsies, so you can avoid this more invasive procedure. Instead, our annual evaluation will consist of tests including an echocardiogram (EKG) and cardiac catheterization to check for the presence of coronary artery disease (blocked arteries).

If, after 3 to 4 years, you have no evidence of heart disease, you may be offered the option of undergoing a dobutamine or exercise stress test (treadmill test) instead of a cardiac catheterization. Whenever we can, we prefer to offer these less-invasive options to make sure your heart is working correctly.

Medications After Transplant

Our transplant team will help you manage and understand your medications. We also will advise you about taking any over-the-counter medications. As a transplant recipient, you will need to take immunosuppressive medications daily for the rest of your life.

Here is what to know about your post-transplant medications:

• These anti-rejection medications suppress your immune system so your body doesn't reject the transplanted heart.
• Because your immune system is suppressed, you will be more prone to infection, especially during the first 3 to 6 months after transplant.
• While you're taking medications, you need to carefully monitor and report any unusual side effects to your nurse coordinator. Side effects vary by dosage and type of medication. Ask your nurse coordinator or doctor any questions you have about your particular medication.

Watching for Signs of Rejection

Because a transplanted heart is considered a "foreign object" to your body, your immune system may try to reject the organ. It is very common for this to occur within the first few months of transplant.

The risk of rejection decreases over time, but can occur at any time. It's important to follow all medication regimens and physician orders to prevent rejection, and to recognize the early signs of rejection.

Here is how we help identify and manage possible organ rejection:

• Your transplant team will discuss the signs and symptoms of rejection with you.
• In addition, you will have frequent testing and routine clinic appointments to monitor you for rejection.
• Rejection must be treated as soon as possible to avoid complications.
• If you experience rejection, you will take additional medication to suppress your immune system so the rejection resolves and to protect the transplanted heart.

In many cases, rejection does not cause any signs or symptoms. If you experience any symptoms of rejection, call your transplant nurse coordinator immediately.

Symptoms of rejection may include:

• Fatigue/weakness
• Low-grade fever
• Shortness of breath
• Fast heartbeat or skipping some beats
• Swelling of hands or feet
• Sudden weight gain
• Drop of blood pressure
• Not feeling "quite right" or flu-type aches and pains
• Nausea

Minimizing Infection Risk After Transplant

The same medications that help prevent rejection also increase your risk for infection. For the first 6 months after surgery, the likelihood of rejection is highest, so you will be taking higher doses of these medications. This makes you even more vulnerable to infection.

You must take caution to protect yourself from infection. You will be asked to follow these recommended guidelines:

• Take and record your temperature daily.
• Wash your hands frequently and avoid contact with people who are ill.
• Wear a mask in any crowd. It is especially important to wear a mask when you come in for clinic visits for the first 3 months after transplant.
• Practice good dental hygiene.
• Avoid contact with dust and dirt, which may carry a fungus that is dangerous to people taking immunosuppressive medications. Do not work in or visit any form of a construction site. Avoid gardening for the first 6 months after your transplant, and afterward, wear garden gloves when gardening.
• Do not use pepper for the first 3 months after transplant. After this time, you may use pepper, but replace your pepper supply every 3 months. Old pepper may contain a fungus that is dangerous to people taking immunosuppressive medications.
• You may have pets, but have other family members or friends clean the litter box, cage or yard. Do not add new pets to your home, especially birds.
• Undergo recommended immunizations (e.g., influenza, pneumococcal).

You should call your transplant coordinator anytime if you have symptoms including:

• Fever over 99°F
• Signs of illness (cold, flu or extreme tiredness, or a cough that lasts more than 2 days)
• Sudden weight gain
• High blood pressure
• White patches on your tongue or mouth
• Cloudy or foul-smelling urine

Support for Patients and Caregivers

Your caregivers are one of the most important parts of your transplant. We work to make your stay in St. Louis as convenient as possible, and to help you adjust to life awaiting transplant or post-transplant.

Lodging Before and After Heart Transplant

We help patients find convenient lodging options before or after transplant such as:

• Both on-campus and off-campus accommodations are available.
• Some off-campus hotels offer special rates for Barnes-Jewish Hospital patients.
• In addition, some lodging expenses related to the transplant are covered by insurance. Call your insurance company to find out more or talk to one of our experienced financial counselors.

For off-campus lodging assistance and to receive special rates, call Concierge Services at 314.362.5301 or toll-free 800.551.3492, Monday through Friday, 8 a.m. to 5 p.m.

Heart Transplant Support Group and Mentors

Because a heart transplant is a major procedure with lifelong implications, we sponsor several peer-to-peer networking opportunities, including the Heart Transplant Support Group and our mentor network.

These support opportunities include:

• The Heart Transplant Support Group: Support and education for Barnes-Jewish Hospital heart transplant recipients, candidates and their families. Members, who are in various stages of the transplant process, and guest speakers discuss topics related to any aspect of transplant.
• The Mentor Program: Patients who are beginning the transplant process meet with patients who have successfully completed transplant. Program participants share information, guidance and emotional support with those involved in the transplant process.
• The St. Louis Heart Transplant Association: This nonprofit organization works closely with Barnes-Jewish Hospital social workers. The HTA provides emotional, educational and financial support to pre- and post-transplant patients and their families. The group supports all patients, including those who may ultimately receive LVADs rather than a heart transplant.

Contact Us

For more information about the heart transplant program at the Washington University and Barnes-Jewish Transplant Center, call 888.998.3757.