Preparing for your Visit
If you or someone you care about has been referred for a heart transplant evaluation, you may have a lot of questions about how the process works and what to expect along the way. The Advanced Heart Failure and Transplant Center has a supportive staff to help guide you through the process — from initial evaluation to transplantation and postoperative care.
If you are just getting started, read this page carefully for a high-level overview of what to expect as a patient.
Initial Heart Evaluation, Testing & Review
Step 1: Initial Evaluation
An evaluation is done to determine if you need a new heart and, if you do, to determine if you are medically, surgically, emotionally and mentally well enough to tolerate receiving a new heart.
In order for you to decide whether or not you wish to consent to the evaluation for heart transplant, you need to fully understand the risks and benefits of the evaluation process, surgical procedure and post-transplant care so that you can make an informed decision. The transplant team will discuss all of these details with you, and you will need to sign a consent form if you wish to proceed with the evaluation for heart transplantation.
You will be asked to set up an appointment to review the consent for evaluation with a Heart Transplant Coordinator (a nurse who serves as your point of contact throughout the process) and a Transplant Social Worker (a professional who evaluates your readiness for transplantation and helps support your psychosocial needs). Plan to spend at least 2 to 3 hours at this appointment. It is important that you AND your support team (any person or persons who would help you through this process) come for this appointment. You will then meet with:
- A transplant cardiologist
- A transplant surgeon
- A financial coordinator (who helps in navigating and negotiating insurance and other payment issues)
- A transplant nutritionist (a licensed nutritionist who will assess any nutritional need that may need to be addressed)
- A transplant pharmacist (a licensed pharmacist who specializes in heart transplant)
- You may need to meet with other specialty doctors as deemed necessary
Finally, you will receive a list of the tests (also known as studies) that you will need to complete in order to be evaluated. Examples of these tests include but are not limited to: blood work, chest X-ray, electrocardiogram, heart catheterization, stress test and echocardiogram. Depending on your age and gender, you may also need a colonoscopy, digital rectal exam, mammogram and/or pap smear for cancer screening.
Each test will be explained to you before it is done. Depending upon your past medical history or at the request of the physician, you may need to have more tests performed and you may be referred to other physicians for consultation.
Step 2: Testing & Review
Your transplant coordinator will assist you in scheduling your testing. Depending on your insurance coverage, you may be able to complete some of these studies at Jefferson. In some cases, certain outpatient tests may need to be done at centers dictated by your insurance. How quickly you undergo the tests will determine how quickly the Heart Transplant team is able to review the results and determine whether or not you are a suitable candidate for a heart transplant.
Getting Listed & Waiting for Heart Transplant
Step 3: Being Listed
If it is determined that you need a heart transplant and you are a suitable candidate, placement on the waitlist will be offered to you. If you agree to be listed for heart transplant, you will also receive a letter in the mail confirming that you have been placed on the United Network for Organ Sharing (UNOS) transplant list. Your listing status will be explained to you by the Transplant Team. Status on the waitlist is determined by your medical need and can change as your medical need changes.
Step 4: Staying Ready
The waiting time for a heart transplant is unpredictable and the wait can be long. Each time an organ becomes available, UNET (an online database of patients waiting for transplant, managed by UNOS) searches the entire pool of patients who are a match for the organ; a list is made from those who match. The patients on the match list are ranked depending on several factors: blood type, size, medical urgency/listing status, distance from the donor's hospital, immune system match, age and waiting time.
Depending on the nature and severity of your illness and transplant status, you may be able to wait at home for transplant or you may need to wait in the hospital until an organ becomes available. While you are waiting, it is critically important that you:
- Provide blood samples on a monthly basis for the Jefferson tissue-typing lab (some patients only need to provide samples every three months).
- Keep all of your studies up to date, as instructed by the Transplant Team.
- Keep us informed of any changes to your health; these changes (such as recently diagnosed conditions or other surgeries) can affect your ability to receive a transplant.
- Ensure that we always have your latest insurance information so that we can stay on top of any changes to your financial situation.
- Contact us any time your phone numbers and/or address change.
- Be sure to leave your phone on around the clock so that we can reach you when a potential organ becomes available.
- Come in to Jefferson for re-evaluations at the frequency determined by our Program to continue to assess your suitability for transplantation.
If we can't reach you, if your tests or blood work aren't up to date or if your insurance coverage has changed, it could mean the difference between receiving an organ – and continuing to wait.
Once a suitable heart is identified, you will undergo the actual transplant surgery. You will be contacted by a heart transplant coordinator who will notify you of the pending transplant. If you are waiting at home, you will be given instructions about coming into the hospital.
You will be prepared for surgery at Jefferson while members of the Heart Transplant Team simultaneously go to the donor's hospital to evaluate the donor's heart. If the donor's heart is deemed acceptable, the transplant surgery will proceed. You will be in the operating room for several hours, typically 6 to 10 hours. More details of what to expect in your post-surgical course will be explained to you when you meet with members of the Transplant Team during the evaluation.
The work isn't over after you receive your transplant. We will provide you with detailed instructions about the antirejection and other medications you will need to take and lifestyle changes you will need to make to preserve your heart function.
In addition, your follow-up care will include having heart biopsies to see how your heart is doing and to monitor for rejection. A heart biopsy is performed in the catheterization laboratory that is located within the Hospital. In most cases, you will need to be at the Hospital the morning of your scheduled biopsy around 7 a.m. The procedure and the risks associated with the procedure will be explained to you, and you will need to sign a consent form.
After you recover from the heart biopsy, you will need a support person to accompany you to the Heart Transplant Clinic (located in a separate building from the Hospital), where you will be seen by a transplant physician and coordinator. Your support person will be present during this appointment. You will usually be able to go home by about 4 p.m.
You will need heart biopsies routinely following your heart transplant according to this schedule:
- Weekly for six biopsies, then
- Every other week for three biopsies (until three months post-transplant) then
- Every month for three biopsies (until six months post-transplant) then
- Every other month for three biopsies (until one year post transplant) then
- Every three months for two biopsies (until 18 months post-transplant) then
- Every six months for three biopsies (until three years post-transplant)
Rejection diagnosed with a biopsy usually requires treatment. Treatment for rejection can include changes to your immunosuppression pills, intravenous immunosuppression at home or in the Hospital, or other treatments. If you have rejection, then your biopsy schedule will be more frequent than indicated above. Rejection is always a possibility, but you are at the greatest risk within the first year after transplantation. Rejection is usually treatable, and treatment may be provided at home or may require hospitalization. Your body will never develop a tolerance to your new heart, so immunosuppression is a lifelong treatment and commitment.
Other post-transplant requirements include:
- Blood Work — this is done with every biopsy and more often if necessary; used to dose your immunosuppressive medications; never less than every three months
- Echocardiograms (ultrasound of the heart) — this is done every six months or more often as necessary
- EKGs — done every six months or more often as necessary
- Stress Tests — every six to 12 months
- Heart Catheterizations (to look for blockages) — done yearly or every other year if kidney function is acceptable
- Other tests including chest X-rays, pulmonary function tests and bone scans
Important Point to Remember
The members of the Advanced Heart Failure and Transplant Center understand that going through the heart transplant evaluation process can be overwhelming and frightening. We are here for you and your support team to answer any questions or concerns and help guide you through the process.