Patient education

Preparing for a Heart Transplant

In order to be considered for a heart transplant you must be evaluated by the physicians and other health care providers at the UF Health Shands Transplant Center. Evaluation for transplantation involves taking a series of tests and being examined by a variety of specialists.

The overall goal of this evaluation is to be sure that a heart transplant is the best treatment for your heart problem and to be sure that you don't have any other problems that would prevent you from getting the best results. During the evaluation period we encourage you to ask questions about anything you don't understand.

Generally, the evaluation phase will require you to be hospitalized for three to five days. One reason for the hospitalization is so that we can adjust your medications - if needed - in a safe and monitored environment. Another reason is to have adequate time for all the tests to be performed in a coordinated manner that does not tire you out. In some cases, tests will need to be done early in the morning and others at various times throughout the day.

The tests you undergo during evaluation are listed below. Some of the tests will be conducted in your hospital room while others will take place within various departments of the UF Health Shands Hospital.

Heart Tests

• Electrocardiogram (EKG)
• Echocardiogram
• Cardiac catheterization

Lung (Pulmonary) Function Tests

• Chest X-Ray
• Lung function studies

Kidney and Liver Test

• Complete blood count
• Kidney function tests (from blood samples)
• Lipid or fat profile in your blood
• 24 urine collections
• Blood coagulation profile
• Liver function studies (from blood samples)

Nutritional Status

• Calorie count
• Skin fold measurements
• Weight/diet evaluation
• Body protein evaluation

Immune System

• Blood type and grouping
• Antigen/antibody reactions
• HIV virus test
• Thyroid function
• Viral illness tests (such as hepatitis)

Psychological Profile

• Personality inventory
• Vocabulary test
• Memory tests
• Medical coping questionnaire

Social Support

• Family structure and support
• Coping mechanisms
• Living arrangements for you/family
• Financial resources evaluation

Financial Planning

Early in the evaluation period you will meet with a heart transplant coordinator. The coordinator is a registered nurse who will care for you throughout all phases of the transplantation process. As the name implies, the transplant coordinator "coordinates" the care provided to you and your family to provide information, answer questions and help you solve problems.

During the evaluation period cardiology physicians are in charge of your care. The cardiologists will have your health records from your local physician and will discuss with your personal physician any changes in your condition and medications.

Patient and Family Services and Social Services

Social workers are an integral part of the health care team who work closely with patients and their families to help them solve many kinds of problems. A social worker is assigned to all heart transplant patients and is available throughout the transplant process. Prior to any transplant procedure the social worker will help arrange things such as lodging and transportation for those needing assistance. The social worker is available to assist with financial matters and coordination with hospital financial counselors.

A primary function of the social worker is assistance with emotional issues that may accompany transplantation. Anxiety, fear and frustration are common and normal. You can also expect the social worker to be available after the transplant. Home health home care referrals, follow-up appointments and any additional services will be reviewed to assure you of continued support. Your social worker can address many of your about your transplant recovery process, lifestyle changes and needs.

Complications of Heart Transplantation

A heart transplant is not a "cure" for your sick heart. It is a trade of one set of health needs for another.

Potential "complications" of your heart after transplant include:

• Rejection of your new heart
• Infection
• High blood pressure
• Weight gain
• Increased risk for cancer
• Risk of developing diabetes (insulin or non-insulin dependent) due to medications
• Coronary Allograft Vasculopathy (CAV)
• Osteoporosis (reduced strength of the bones) due to the medications
• Potential need for a permanent pacemaker insertion
• Kidney and liver damage due to the medications

Becoming a Heart Transplant Candidate

After the evaluation is complete, the transplant team will meet to discuss all the information gathered. The purpose of this meeting is to discuss your options and your need for a heart transplant. The team also discusses potential problems that could make transplantation too risky for you. You may need additional tests to confirm your candidacy for transplantation. We will make all the arrangements to complete these additional tests as quickly as possible.

Waiting for Your New Heart

Waiting for a suitable heart to become available may be the toughest part of the transplantation process. It is natural to wonder whether you will get your heart in time. Our team will do everything possible to help you get your new heart quickly. However, the average wait at home can be one to two years. If you are sick enough to be hospitalized while you wait for your transplant, the wait may still be one to three months.

Some tips to lower your anxiety while waiting:

• Talk about your feelings with your family and friends
• Keep the transplant team informed of your condition
• Be accessible by phone or pager
• See your doctor(s) regularly
• Maintain good eating habits and watch your weight
• Let your transplant coordinator, social worker and others help you adjust

If you are at home during the waiting period it is a good idea to plan for the day you are called to come to the hospital for the transplant. We suggest that you keep a packed suitcase ready in preparation for the day (or night) of your surgery. When preparing your bag, think about what clothes and personal articles you would like to have with you in the hospital (reading material, music, photographs, etc.).

If your local physician hospitalizes you during the waiting period, please contact your coordinator and keep them informed of how you are doing. If you will be on vacation please notify your coordinator of when you may be unavailable.

Living with a Heart Transplant

Patients routinely stay in the surgical cardiac intensive care unit (CICU) for five to seven days after surgery. Then they are transferred to another floor within the hospital for 10 to 14 days until discharge.

Patients are usually discharged home four weeks after the heart transplant. Patients who live more than one hour's travel time from UF Health Shands Hospital may stay locally in transplant housing.

Biopsies are done according to schedule:

• Weekly for the first four weeks
• Biweekly for the next four weeks
• Monthly for the next two months
• Every two to four months thereafter to complete the first year

Six months after the transplant, cardiologists perform a left heart catheterization with selective coronary angiography and a right heart catheterization for an endomyocardial biopsy. These catherizations are repeated annually until the patient is five years post-transplant. All annual studies include laboratory work, chest X-ray and an EKG.

Biopsy results, physical exam findings, vital signs, laboratory studies and medications are communicated to the primary care physician by the medical director using a database-driven summary employed by the coordinators. The clinic visit and laboratory schedules outlined above are minimum and may vary. All follow-up care, including clinic visits and laboratory tests, may vary.

Long-Term Care

Heart transplant recipients are followed throughout their lives by a team of health care providers. Patients are followed more intensely during the first six post-transplant months because most serious complications occur during this period. In time the frequency of laboratory tests and doses of immunosuppressive agents are tapered. Some complications that more commonly present later.

Patients vary in need for after care and in the side effects they experience from the immunosuppressive agents (cyclosporine, prednisone and azathioprine.) An attempt is made to reduce or discontinue steroids by six months following transplant while maintain adequate cyclosporine or prograf levels. Clinical complications such as frequent rejection episodes, bone disease, severe cushingoid features or infections may lead to a delay or a more rapid tapering of the steroid dose as dictated by the particular complication.

Rejection is diagnosed by an endomyocardial biopsy procedure in the cath lab. Treatment usually involves a short-term course of high dose steroids.

Lymphoproliferative disease can sometimes be associated with the donor/recipient Epstein Barr virus status and the amount of immunosuppression used. Polyclonal expansions of lymphocytes, diagnosed histologically, by flow cytometry and by cell typing, usually respond to reductions in immunosuppression.

True monoclonal lymphomas are treated by drastic reductions in immunosuppression (for example stopping cyclosporine, decreasing azathioprine and steroids) and the addition of antiviral agents such as intravenous acyclovir. There is little evidence for the use of interferon or standard lymphoma chemotherapeutic regimens to treat post-transplant lymphomas.

Malignancies are another danger for heart transplant patients. They are at an increased risk for skin and cervical cancers. Female patients are advised to have annual Pap smears to screen for cervical cancer. A careful skin exam is performed during clinic visits. Patients are referred to dermatologists for any suspicious lesions. Patients are also advised to minimize their exposure to the sun by wearing sunscreen.