Once you have been accepted for transplantation, an active search for a donor heart begins. Your time on the waiting list will be determined by four things:
- Your blood type
- Your body size
- How sick you are
- Antibodies in your blood that could make organ rejection a concern
The heart you receive will be matched to you according to your blood type. The following diagram shows which blood types can give to and receive from one another.
Patients who are type O tend to wait longer on the heart transplant wait list. This happens because more patients on the list are type O, and because type O patients can receive only type O hearts.
The size of your body also determines how long you will wait on the list. The donor has to be close to your body size. Most people in the general population are of average size. If you are especially tall or small, you will wait longer than someone who is of average body size.
STATUS ON THE WAITING LIST
You will be placed on the transplant waiting list according to the following criteria:
Status 1: For patients who are waiting at home.
Status 2: For patients who are admitted to hospital because their heart failure is not under good control.
Status 3: For patients who require an intravenous medication to support their hearts. For patients who need a mechanical device to support their hearts.
Status 3.5: For patients who need to be in the intensive care unit and are on two intravenous medications for their hearts.
Status 4S: For patients with lots of antibodies in their blood.
Status 4: For patients who are in the intensive care unit on life support. Also for patients who have mechanical support devices that have become infected. The higher you are on the list, the less time you will wait. If you are a status 1 patient waiting at home, you will be on the list longer than someone who is a status 4 patient in a critical care setting. It is hard to predict how long you will wait. Some heart transplant patients wait a few hours while some wait many years.
You will have blood tests during your workup to determine whether you have antibodies in your blood. Your body forms antibodies when it is exposed to foreign invaders or material including viruses, blood transfusions, previous transplants and, for women, past pregnancies. When there is a heart offer for you, your antibodies are compared to the donor antigens. If the donor heart has any antigens that match your antibodies, the donor heart cannot be accepted for you. This can cause your wait to be longer.
While You Wait
Most individuals stay at home while they wait. If you live a long distance from the hospital, you may need to stay in the Ottawa area while you wait. It is important that you be immediately available—within hours—when a donor heart is found. A social worker will help you with planning a temporary location for you and your family.
You will be asked to leave a list of telephone numbers with the transplant advanced practice nurse (APN) so that you can be reached at any time. It is very important that members of the transplant team be able to reach you at any time.
When you are going to be away from home or change your phone number, please inform the transplant APN. Be sure to give the nurse the following information when you know you are leaving home:
- The date you are going away
- The date you will return
- The phone number where you can be reached
You cannot leave the country, go to remote areas or travel long distances if you are on the waiting list. Discuss your travel plans with the transplant APN if you have any questions.
While you are on the list, you may become ill now and then. You should call the transplant APN if you experience any of the following:
- Cold, flu or fever
- Infection that requires antibiotics
- Blood transfusion
- Increasing signs and symptoms of heart failure:
- Increase in your weight (2 pounds in one day or 5 pounds in one week)
- Decrease in your activity level
- Increased shortness of breath
- Swelling in your ankles and legs
- Decreased urination
If you are hospitalized, let the doctors or nurses know that you are on the waiting list for a heart and ask them to call the Transplant Office or transplant APN. It is important for you to keep the transplant team up to date on your status. This will ensure that you are in the best condition possible for your transplant. Changes in your health may affect your status on the list.
The wait time can be stressful for both you and your family. Waiting for a transplant has been described by both patients and families as if they are putting their lives on hold. Other common feelings include:
- That life is unpredictable
- Difficulty coping at times
- Concern about finances
- Anxiety about what the future holds
- Uncertainty about being able to accomplish life goals
- That life is fragile
- Fear of the transplant process, while knowing it is the only alternative
- For spouses, awareness of the possibility of losing their loved one
These are natural feelings and ones you should talk about with your spouse, a friend or a health care worker. The social worker and transplant APN are there to help you work through these feelings.
Relocation and a Drug Plan
If you live far away, you may be asked to move closer to the Heart Institute before your transplant. When you are called to receive a donor heart, you will need to arrive at the hospital within four hours.
If you live more than one hour away from the hospital, you will be asked to move closer to Ottawa for at least two months following your transplant. This is necessary because of the frequent tests needed after the surgery.
The Ontario government has created a fund to help Ontario residents cover some of the cost of relocating to Ottawa. To receive this benefit, you will need to provide proof of your relocation (receipts) to the transplant APN. The APN will submit the information to Trillium Gift of Life. Trillium will cover $650 per month of your costs during your stay in the Ottawa area. Ask the APN for an information package.
If you have been paying for your medications because you do not have a drug plan, it is recommended that you obtain one. Some of the medications you will take following the transplant are very expensive.
Two social workers at the Heart Institute are assigned to work with heart transplant patients and their families. You will be referred to a social worker during your evaluation. This professional will monitor you after your transplant and can help you with information about:
- Temporary accommodations in Ottawa for you and/or your family
- Disability pensions and financial information, if needed
- Community resources and services to support lifestyle changes
- A drug benefit plan
- Monthly parking passes