Heart Transplant Frequently Asked Questions
If your question isn't answered here, please give our Heart Transplant Center a call at 858-939-3831. We are here to help.
What are the different wait-list statuses for heart transplantation?
For patients who are at the top of the waiting list. This usually includes patients in the intensive care unit, on life support or on high-dose intravenous (IV) medications to support heart function or patients with a ventricular assist device (VAD) or extracorporeal membrane oxygenation (ECMO).
For patients who have end-stage heart failure and are at home on a VAD or continuous IV heart medications (inotrope medication) that makes the heart beat stronger.
For patients who do not meet the criteria for status 1A or 1B. Most often, these patients are waiting at home for a donor heart and are taking oral heart-failure medication.
For patients who are temporarily inactive on the heart transplant waiting list. This might include patients who develop an infection and cannot undergo transplant surgery until the infection has cleared, patients who have left the area and cannot return within two hours or patients whose insurance has changed and a new authorization or loss of insurance coverage is needed.
Can I be on more than one waiting list?
Yes, this is called a multiple listing and is permitted by the United Network for Organ Sharing (UNOS). You may increase your chances of getting a heart sooner if you are listed at another heart transplant center in another location. To do so, you will need to be evaluated, accepted by that center and provide verification that your insurance company will pay for another evaluation at another center.
What if I want to have my transplant at another center?
Changes can occur, be it your insurance changes, you need to move or you want to receive your transplant elsewhere. Your "time on the list" can be transferred to another center. Your transplant coordinator can explain the process if this becomes necessary.
How long will I have to wait for a donor heart?
It is not possible to predict how long you will have to wait for a donor heart. Some patients wait days while others wait weeks, months or years. Organ offers are made on the basis of:
- Blood type (the donor heart must come from a donor with the same or compatible blood type as you)
- Heart size
- UNOS status (1A, 1B or 2)
- Waiting time (how long you've been on the waiting list)
While you are waiting for your donor heart, it is important to stay healthy so that when a donor heart does become available, you are in the best possible condition to undergo transplant surgery.
What are my responsibilities once I am placed on the waiting list?
As a transplant candidate, you must notify your transplant team if:
- There are any changes in your medical condition (for example, you start to feel worse)
- You become sick with an illness (common cold, etc.)
- You leave the county for any reason
- Your automatic implantable cardioverter defibrillator (AICD) generator has been changed (if you have one)
- Your contact information changes
- You receive a blood transfusion at another hospital
- Your insurance changes
Why do I have to let you know if my insurance changes?
If your health insurance changes while you are on the list, approval for heart transplantation must be obtained from your new insurance provider.
How does UNOS find donors?
Once a physician identifies a hospitalized patient with a devastating brain injury, the patient will undergo extensive neurological testing. If the result of this testing is irreversible brain death with no chance of recovery, the local organ procurement organization (OPO) will be called. An OPO professional trained in discussing organ donation will speak to the family about possible organ donation. Procurement coordinators also work for the OPO and are well-trained individuals who work in hospitals with the donor patient to ensure the patient is in good condition for organ donation. The procurement coordinator also ensures the fair and equitable distribution of acceptable donor organs to transplant candidates.
San Diego's local OPO is Lifesharing. Most donors come from the local and regional OPOs located in Northern California, Arizona, Washington, Oregon, Nevada and New Mexico.
What do I do if my transplant beeper goes off?
When a donor heart becomes available, you will called at home and/or paged on a beeper provided by the heart transplant team. Sharp's heart transplant program phone number will be displayed so you can quickly and easily return the phone call.
Are there any donor-related factors that could affect the success of the transplant surgery or my health following surgery?
Yes. These factors could include, but are not limited to:
- Infection in the donor that is not detected by the pretransplant screening (e.g., HIV, hepatitis or other infectious disease)
- The condition of the donor heart
- The donor's health history
What medicines will I have to take after transplant?
You will need to take medications for the rest of your life to prevent your body from rejecting your new heart. In addition to looking for rejection, your blood work will be evaluated to determine if the medications are too strong for you and need to be adjusted.
How will I know if I'm having a rejection?
We will teach you the symptoms of rejection so you will know when to call us. We will schedule you for biopsies and echocardiograms after you receive your new heart. The biopsy can tell us about rejection when it is in your cells. The echocardiogram will show any decrease in heart function. If the biopsy or echocardiogram shows you are having a rejection, your medication doses may be increased or new medications may be given.
Are there any other risk factors after I have a heart transplant?
The medications to decrease the risk of rejection also increase the risk of infection. Your body knows that the new heart does not have your special identification marks — it thinks the new heart is an invader. Therefore, we have to suppress the body's urge to reject the new heart, which can also suppress its reaction to bacteria, viruses and other sources of infection.
Organ transplantation can also impact your psychological well-being. You should be aware that this impact can cause depression, anxiety, posttraumatic stress disorder, sleep disorders and guilt.
Whom should I call when I have a problem or concern?
The transplant coordinators and doctors are on call 24 hours a day, 7 days a week. You may call the heart transplant program office at 858-939-3831, 7 am to 3 pm, or after hours at 858-939-3400 and ask for the on-call heart transplant coordinator.
Can I return to work after a heart transplant?
Many heart recipients return to work within several months after their transplant. When you return to work depends on how you feel and the type of work you will be doing. Our transplant team of doctors, nurses and social workers can help you with deciding when you can return to work.
What if I decide not to have a heart transplant?
Transplant is not for everyone, and everyone who is referred for a transplant may not need one. If you do not think you want to have a transplant, we will respect that decision and assist you with other options.
Even if you are listed for a transplant, you may not get one if you become too sick. We would like for you and your family to consider what you would like to do, or have done, if that happens. It is important that your family and caregivers know your wishes.
Where can I find additional heart transplant information?
You can learn more about the heart transplant process by visiting the Organ Procurement and Transplantation Network (OPTN).