The Waiting Period

Waiting can be difficult for you and your child.

Your child has been activated to receive a heart or heart-lung transplant and his name is listed in a regional and national computer network.  Children awaiting transplants are prioritized according to medical urgency, accrued time on the waiting list and distance between the recipient and donor hospitals.  A new heart or heart-lung for your child must come from a child of similar size and the same blood type.

If your child requires hospital care, he may be admitted to your local hospital.  You must be ready to come to the hospital at any time, and to be here within three to four hours.  We will arrange for you to carry a beeper to maintain constant contact with us.

Meanwhile, we strongly encourage you to keep your child current on his immunizations.  We also emphasize the importance of good nutrition before transplant surgery and immunosuppression.  If your child’s medical status changes, please call us.

The waiting period can range from days to months to years.  Emotions, too, can vary.  You and your family may experience:

Hope: Help is available for my child.

Fear: Will my child die before a donor organ is found?

Anticipation: Is that the hospital on the phone:  Did my beeper go off?

Frustration: Why is it taking so long?

Guilt: Another child must die before mine has a chance to live.

Family members and friends may experience these feelings at different times and with different intensity.  There is no “right” way to feel.

The waiting period is a good time to make important preparations:

• Arrange where you will stay, i.e., an apartment, the Ronald McDonald House, friends.
• Coordinate care for other family members.
• Obtain a beeper.

Plan to bring:

• Money to cover living costs.
• Money or prescription card for discharge medications.