The Waiting List

Families often want to know the age of the donor and how the donor died. Information about the donor is not shared.If you, your child and the transplant team decide that a heart transplant is the best option, the next step is to place your child on the waiting list for a donor heart. UNOS is the national agency that oversees organ transplant. This agency works with LifeShare of the Carolinas, the federally designated Organ Procurement Organization (OPO) for the Charlotte region, to recover organs. UNOS also maintains the national computerized list of people waiting for heart transplants.

Once your child's evaluation is done and a decision has been made to move forward, the heart transplant coordinator will place your child on the waiting list through the UNOS secure Web site.

Your child will be listed as a Status 1A, Status 1B or a Status 2 on the heart transplant waiting list.

• Status 1A patients are the most critical. They are in a hospital with breathing support or on high-dose intravenous medicines to help their hearts work better.
• Children younger than 6 months old with certain heart conditions are also Status 1A.
• Children younger than 6 months old that do not meet the criteria for a Status 1A will be listed as a Status 1B.
• Status 1B patients need low doses of intravenous inotropic drugs (heart medicines that temporarily improve heart function) or they will have growth failure due to their heart disease.
• Status 2 patients are on the active list for heart transplant, but do not meet the standards for Status 1A or 1B.
• Status 7 patients who have been 1A, 1B or 2 who are temporarily inactivated. Patients can be temporarily inactivated from the transplant list for several reasons, for example they can be too well or too sick for transplant.

How Does the UNOS Donor Matching Process Work?

1. A heart is donated from a person who has just died.

2. The donor's medical information is put into the UNOS database.

3. UNOS notifies the transplant team that a heart is available.

• A donor heart will be offered to regional Status 1A and 1B candidates at North Carolina transplant centers first. The heart goes to the highest priority group who has waited the longest.
• If there are no matching candidates in North Carolina, the donor heart is offered to Status 1A and 1B candidates in the region.
• If there are no matching candidates, the donor heart will be offered to Status 2 candidates at North Carolina transplant centers. The heart will go to the patient who has waited the longest on the transplant list.

4. The transplant surgeon and team review whether to accept or decline the organ. This is based on whether the heart is a good match for your child.

5. The transplant coordinator calls you when a heart that is a good match for your child is available.

6. To understand how patients are matched on the national waiting list:

• Think of the list as a "pool" of patients.
• When an organ is available, UNOS searches the entire "pool" for a match.
• Other factors include:
  • Location of the heart and the child.
  • Amount of time the child has been on the waiting list.
  • Size of the child.
  • Blood type: your child can receive a heart from a person with the same or with a compatible blood type. The four most common blood types are O, A, B and AB.

About the Donor

Families often want to know the age of the donor and how the donor died. Information about the donor is not shared and remains confidential. Typically the organ procurement organization will send a letter to the donor's family with a brief update about the recipient(s) but will not include patient identifiers. For example, the letter to the donor family might say "The recipient is a 5 year old girl in North Carolina who needed a new haert due to an infection. She is doing very well and enjoys playing the piano and spending time with her friends on the playground" If you would like to write a letter thanking the donor family, a transplant coordinator will forward it to Lifeshare who will then send it to the donor family.

Steps for Heart Transplant :The Transplant Surgery :Caring For Your Child After Transplant :When to Call : Back to Heart Transplant Home