Evaluation Process for Heart Transplantation

Our goal during your visit is to make certain that you receive a thorough evaluation of the problems you are experiencing with the function of your heart. Once we complete our examination and gather the results of any tests we perform, you will be informed of our findings and recommendations.

Although you have been referred to us for a heart transplant, we may discover that additional medications or other procedures might be more appropriate for your particular problem.  We will only recommend a heart transplant if that appears to be the best treatment option for you.

We realize that you have many questions about what will happen to you during the evaluation process.  The following information will give you the answers to some general questions you may have.  You will have an opportunity to discuss specific questions about your particular situation when you meet with the cardiologist during your initial visit to the clinic.

Your doctor has determined that your heart muscle has become weakened.  The reason for the weakness can be from a number of different causes.  The exact reason for the weakness in your heart muscle will be explained by the pre-transplant cardiologist.  Your doctor has decided to have you undergo testing and an examination at Stanford to determine what the best treatment plan is for your particular problem. The plan may be to continue an evaluation for a heart transplant or it may be determined that a different type of treatment would be better for your condition.

You will meet with the following staff when you undergo an evaluation:

Pre-Heart Transplant Cardiologist

This is a physician who has specialized in the area of managing patients who have developed a weakness in their heart muscle, also known as cardiomyopathy.  Sometimes the heart is unable to pump enough blood to keep up with the demands of your physical activity, resulting in a condition referred to as “heart failure”. For this reason these physicians are also called “Heart Failure Specialists”.

This doctor has also had extensive experience in determining which patients will benefit from receiving a heart transplant and will be making their recommendation to the Heart Transplant Selection Committee at Stanford. If you are accepted as a transplant candidate this physician will care for you while you are waiting for a donor.

Heart Failure Nurse Coordinator

This is a nurse who is working with the cardiologist in the clinic and can assist you with your questions in a number of areas including sodium restrictions, understanding your medications and explaining the testing procedures.

Heart Transplant Social Worker

This is someone who will spend extensive time with you and your caregiver to learn more about you and how you are handling the stresses of your illness and the medical recommendations that have already been given to you.  This will include your understanding of your illness, your medications, diet etc. She will also provide you with written information and videos describing the transplant process.  If accepted as a transplant candidate she will assist in providing support through patient groups and community resources.

Pre-Heart Transplant Coordinator

This is an individual who will coordinate the tests and appointments necessary for your evaluation with you and your referring physician.

Heart Transplant Financial Counselor

This is someone who will be working with your insurance company to determine the type of coverage you have to pay for your visits here and the tests we perform for your transplant evaluation.  The financial counselor will make sure that your insurance company gives authorization for your treatment. 

If a transplant is recommended, the counselor will also find out what coverage you have for the operation, medications and any care necessary after the transplant.  Please feel free to contact us to discuss any financial hardship you are experiencing with your current insurance coverage.

You may have one or all of the following three tests described.

1. Initially patients usually have an echocardiogram.  You may have already had one of these tests in the past.  The test uses a special probe that looks like a microphone which is passed over your chest.  Sound waves bounce back from the heart and a picture is generated showing how your heart muscle is moving, how the heart valves are functioning and whether your heart muscle has become enlarged.
   
   
2. A second test is the exercise bike test.  This is a test that will determine how much reserve your heart has when stressed by exercise.
   
   
3. A third test is called a right heart catheterization.  This test determines the pressures in the chambers in your heart.  A catheter is inserted through a large blood vessel at the side of the neck, the pressures are measured and the catheter is removed. If it is likely that you will be a transplant candidate you will also have blood drawn to determine your blood type and whether you have been exposed to certain viruses.

Depending on your age and other medical conditions, it may be necessary to perform tests for cancer screening, vascular disease, pulmonary disease etc.  Each case is different and if you need additional tests, this will be discussed with your pre-transplant cardiologist.

After all of your tests have been completed for your evaluation, your pre-transplant cardiologist will present your case to the heart transplant selection committee.  This is a team that meets weekly and is comprised of surgeons, cardiologists, transplant nurses and a social worker. Your pre-transplant cardiologist will review your case and the group will discuss recommendations for the best course of treatment for you.   In some instances a patient may be “too well” for listing at this time and may continue on medications.  In other cases a patient may benefit from an additional surgical procedure before needing a heart transplant.  Others may need to be listed for transplant immediately. In some cases a patient may be determined not to be a candidate who will likely benefit from a heart transplant because of one of several possible reasons. The recommendation of the committee will be relayed to you and your referring physician.

Once you are accepted as a transplant candidate and have been financially cleared by your insurance company, we will list you on the national computer system known as the United Network for Organ Sharing or UNOS. 

Patients are listed by blood type, height, weight and urgency. 

There are three categories of urgency for patients waiting for a heart transplant. 

At the top of the list are patients listed as 1A.  These are patients who are very ill and are in the hospital with intravenous (IV) medications or mechanical devices helping to keep their blood pressure stable. 

The second group is referred to as 1B.  These are patients who may be in or out of the hospital and have IV medications or a mechanical device keeping their blood pressure stable. 

The last category is status 2.  Most patients are in this category and are out of the hospital and stable.  Your status will be discussed with you by your pre-heart transplant cardiologist.  Your status may change as your condition improves or deteriorates. 

The waiting time for a donor will be dependent on your UNOS status, your blood type and your size.  The range for a waiting time could be as short as a few days or as long as a few years.  Your donor’s body size must be close to your own height and weight. Donor waiting time for those patients who are over 200 lbs. can be particularly long, especially for those patients who are blood type O. 

The possible length of time for your wait for a donor will be discussed with you by the pre-transplant cardiologist. No one can give you an exact estimate of the waiting time or tell you how many people are ahead of you on the list.  The patients listed ahead of you may require larger donors, which in some cases will allow you to receive a donor before another patient who has waited longer than you have.

While waiting for a donor you should keep yourself as healthy as possible.  Continue to take your medications as prescribed, follow the diet recommendations you have received, stay as active as possible by walking or with other exercise that is approved by your cardiologist. Continue your health maintenance by seeing your dentist and your primary care physician when indicated.

You will need to obtain a beeper or cell phone which will allow you to be contacted should a donor be available while you are away from your home. Always inform the pre-heart transplant coordinator about any trips which will take you out of the area and beyond the range of the beeper. 

Above all continue to live your life by seeing family and friends and participating in activities that you enjoy.  You will be invited to join a support group led by our social worker. The group consists of other waiting patients as well as patients who have received a heart transplant. This group can provide valuable information about having a heart transplant and is a source of emotional support to you and your family.

The first effort to locate you when a donor offer is received is generally by calling your home number.  If you are not at home your beeper will be activated and you will need to call back to the page operator at Stanford.  The person contacting you will need to know if you have had a recent fever or any signs of an infection (cold, cough with sputum,  flu-like symptoms, diarrhea etc.).

This is important because you will be receiving medication after the transplant that will not enable you to fight an infection in the same way as you normally would. This means that if you were to have an infection at the time of your transplant you might not be able to fight it and it may not be best for you to receive a transplant at this time. This is why you will be asked this question.

From the time you are called you should not have anything more to drink or eat.  During the time you are traveling to Stanford, a team of surgeons will be going to the hospital where the donor is located.  They will be examining the donor and ensuring that the heart is suitable for you. 

If they discover anything that would not allow them to use the donor heart they will let your surgeon know this and cancel the transplant.  This means that there is always a very small chance that although you have been called in for the surgery, it may not take place. This is a very difficult experience, but it is sometimes necessary in order to provide you with a suitable organ.