Being diagnosed with end-stage cardiac disease can be a confusing and frightening time. We understand that you and your family will have questions. That is why we have a designated transplant team member who is available to talk with you about your disease, various treatment options and which options are best suited to treat your disease. In addition, our team of doctors, nurses, technicians, dietitians, social workers and many others are available to provide you with care and support throughout the transplant process, during your hospital stay and even after you return home.
The following pages will help to explain the transplant process along with the benefits, risks and procedures involved with heart transplantation.
To be considered as a candidate for a heart transplant, you will first undergo a thorough transplant evaluation. The evaluation will help our transplant team learn more about you and your disease. This also will give you the opportunity to learn more about our heart transplant team and transplant program.
During the evaluation, you will go through a series of tests and consultations. The transplant physicians will be looking for medical and/or psychosocial conditions that would affect the chances for a successful transplant. Evaluations are completed as either inpatient or outpatient.
Before you can be put on a waiting list for a heart transplant, the determination has to be made that there is no other treatment option available for your condition. In addition, it must be determined that you are capable of enduring the transplant process.
You will meet with a transplant coordinator, transplant surgeon, transplant cardiologist, psychologist, social worker, transplant financial counselor and psychologist during the transplant evaluation. These visits or appointments will help determine if there are special concerns that you and your family may have regarding the transplant and what type of support is needed for a successful transplant outcome.
You will be asked to sign an Evaluation Consent Form prior to starting the transplant evaluation. A nurse coordinator will review this consent form with you and answer any questions you might have at this time and as the evaluation process moves forward. You might find it convenient to keep a notebook or journal with your questions. So you will not forget any questions you may have, write them down as soon as you think of them.
Depending on your medical history, there may be additional physician visits and tests required. However, most evaluations will include:
- Blood testing
- Blood and tissue typing
- Possible drug or tobacco screen
- Heart studies, which may include any or all of the following:
- Electrocardiogram, also called EKG
- Holter monitor
- Cardiopulmonary stress test
- Pulmonary function tests
- Urinary system evaluation
- Abdominal ultrasound
- Chest x-ray
- Vascular doppler studies
- Dental exam, including x-ray
- Complete physical exam
You may be discharged from the hospital before all the results are available, and some of the testing may be done as an outpatient. If you have outpatient testing scheduled, it is important to arrive on time. Please keep in mind, however, your procedure may not begin immediately at your scheduled time. This could be due to varying lengths of procedures scheduled before you. You will be updated as frequently as possible.
A Financial Counselor will meet with you as a part of your evaluation and is available at all times to answer any questions you might have. You will also meet with a Pharmacy Financial Counselor to discuss your insurance coverage and benefits, inform you of the potential medications and their costs, and answer any questions or concerns you and your family may have.
The Financial Counselor and Pharmacy Financial Counselor will help you understand the financial aspects associated with a transplant.
A meeting with a social worker will be scheduled to help determine that as a potential heart recipient you have an adequate and stable support system.
You will meet with either a psychologist or psychiatrist who will complete an evaluation. This is done to assist in determining whether you will be able to comply with the necessary treatment regimen before and after transplant.
When all evaluation processes are completed, the transplant team will review your case during the transplant selection meeting to determine if transplantation is a treatment option for you. The transplant team will review the results of all tests and carefully consider all factors before a final decision is made. The nurse coordinator or cardiologist will notify you following the selection meeting, and the cardiologist will correspond with your primary care physician.
When the team makes a decision to put you on the transplant list, you will be notified in writing.
Listing on the heart transplant list is based on medical urgency with three main classifications:
- Status 1A: This is the most urgent; these people are often in the hospital with mechanical support and multiple IV medications.
- Status 1B: This is less urgent; these people could also possibly be at home with a Left Ventricular Assist Device or on IV medications.
- Status 2: This is the least urgent; these patients are the healthiest.
Your status can vary based on your health and will be followed closely by the transplant team. For more information on these statuses and the wait list, you can visit www.unos.org or ask your Transplant Coordinator.
The Heart Transplant Operation
When the new, healthy heart is on its way to Nebraska Medicine, the transplant surgeons will begin preparing for the removal of your diseased heart through one incision in your chest. When the new heart arrives, you will be connected to the heart-lung machine and it will take over the function of the heart and lungs for the rest of the procedure.
After the heart is attached, surgeons connect the blood vessels, allowing blood to flow through the heart and lungs. Surgeons check all the connected blood vessels and heart chambers for leaks before removing you from the heart-lung machine. The heart-lung machine is turned off, leaving the new heart to work by itself.
There are always risks and potential complications with any surgery. A patient may bleed more than usual, get an infection, have trouble breathing, get blood clots or the body may reject the heart. Medical personnel will watch you closely and treat these problems.
One of the possible complications that can develop after transplantation is rejection. Rejection is not a disease; it is the normal reaction of the body to a foreign object. Rejection can be acute or chronic.
- Acute Rejection - This rejection occurs in the first weeks to months after transplant. Acute transplant rejection is an expected part of the recovery process and can develop at anytime. To allow the donor organ to successfully live in the body, medications must be given to trick the immune system into accepting the transplant and to not think of it as a foreign object.
- Chronic Rejection - This rejection occurs later after the transplant. It is somewhat common and develops more gradually and can go on for months or years. It often presents like coronary artery disease. Preventing and treating acute rejection may reduce the possibility of chronic rejection.
Since rejection is caused by the immune system, we call methods to prevent it immunosuppression. Many of the medications given to patients are to prevent this antigen-antibody reaction from occurring. All patients have a medication plan uniquely designed for them and may use different immunosuppressive combinations and dosages at various times. The ideal goal of an individual medication plan is to hold back organ rejection while reducing drug toxicity and the risk for infection.
The nurses and pharmacists will explain how to manage your own care. Before you leave the hospital, the team will make sure you are comfortable concerning how to care for yourself. You will receive detailed instructions about your medications that must be taken every day. You will also be given detailed instructions on exercise and diet guidelines. A dietician will help you with any dietary questions and a member of the Cardiac Rehab team will guide you through exercise requirements and goals.
The transplant team will continue to be a resource for you and will remain in contact with you, even after you leave the hospital. With this assurance, you can continue your recovery in the comfort of your own home. Heart transplantation can help patients live longer and have a better quality of life. However, you will need to take an active role to help make your transplant a success.
- Take all medications as instructed
- Have all lab work and testing done as scheduled
- See caregivers regularly
- Eat healthy foods and exercise
- Call the transplant coordinator or doctor if there are any symptoms of rejection, infection or any other problem
Warning Signs/Symptoms to Monitor
Notify your physician if you notice or develop any of the following:
- Any changes in your incisions, such as redness, swelling, drainage, increased tenderness or opening of your incisions
- Temperature higher than 100 degrees F
- Changes in the sensation, movement or circulation in your arms or legs
- Changes in the location, type or severity of pain
- Chest pain, pressure or recurrence of your previous heart pain
- Pain that is unrelieved
- Fast or irregular heart rate