If the heart transplant team decides that transplant is the best option and patients agree, patients are then "listed for transplant." This involves being placed on the national waiting list maintained by the United Network of Organ Sharing (UNOS).
Information such as blood type, body size and clinical status is entered into the waiting list database. Donor hearts are allocated by UNOS and the regional organ procurement organization, Gift of Life Donor Program. Suitable donors have a compatible blood type and are approximately the same size. Blood type groups are A, B, A/B and O.
For those awaiting a donor heart, there are four UNOS status classifications based on condition:
- Status 1A or urgent need: Requires intensive care hospitalization, life-support measures, certain cardiac supporting intravenous medications with a Swan-Ganz catheter, or mechanical-assist device(s).
- Status 1B: Dependent on intravenous medications or a mechanical-assist device – in the hospital or at home.
- Status 2: Stable on oral medications and able to wait at home.
- Status 7 or inactive list: Inactive due to a change in condition – patients do not lose time they have already accrued.
Further information about being a donor, transplant and the waiting system can be found on the United Network for Organ Sharing: Organ Donation and Transplantation website.
The time patients spend on the heart transplant waiting list can last anywhere from days to months, and in some cases years, depending on listing status. The availability of a donor with matching blood type and body size also affects the wait time.
During this wait, patients must notify the team if they are planning an extended trip away from their home. Patients are encouraged to give current contact phone numbers, including cell phone numbers.
It is important for patients who are listed and waiting for a transplant to arrange in advance for transportation to the hospital once they receive the call. Usually, patients have two to three hours to get to the hospital. In very rare circumstances, time constraints may require travel by ambulance or helicopter.
Communicating with Physicians
Most heart transplant patients are referred to Penn Medicine by their cardiologist or primary care physician. The Penn Transplant Institute team values the relationships patients have with their physicians. When patients are listed for transplant, information is sent to their physicians about the transplant process and ongoing communication is maintained with the referring physicians as patients receive their care at Penn.
There are many things patients can and should do while waiting for a heart transplant, including:
- Carry a current medication list at all times so it is available to all care providers, such as doctors, nurses, pharmacists and dentists.
- Continue to exercise regularly to promote endurance and speed up recovery after transplant.
- Follow dietary guidelines.
- Carry a cell phone when not at home. The Penn transplant team needs to be able to contact patients on the waiting list at any time.
- Contact the transplant team immediately with changes in contact information, address, insurance plan, prescription plan or work/retirement/disability status.
- Carry the transplant program phone number at all times in case of emergency or in the event that another care provider has a question for the transplant program.
- Find ways to manage the stress of waiting and coping with chronic illness in order to maintain a positive outlook.
- Notify the transplant program when not feeling well, if seen by another doctor and have medication changes or procedures, or within eight hours if admitted to the hospital.
- Set up an advanced directive.
- Set up a support group of family and friends to help post-surgery.
- Make arrangements for transportation to the hospital for transplant.
- Pack bags in advance, including a 24- to 48-hour supply of medication. If on intravenous medication, bring an extra IV bag of medicine.
- Become familiar with post-transplant care.
Heart Donor Becomes Available
When a suitable donor becomes available, the on-call coordinator calls the patient, who is told to refrain from eating or drinking and to come directly to the hospital admissions office at the Hospital of the University of Pennsylvania.
After getting the call that a donor organ is available, the patient should bring the following items with them to the hospital:
- Cell phone to be available for calls from the heart transplant program while in transit
- Medications and extra IV bag of medicine (if on IV medication)
- Medication list
- Insurance card
- Toiletries/slippers/robe (optional)
Upon arrival, the patient is admitted to the hospital room and the transplant team begins preparing for surgery. They complete paperwork, review medications, check vital signs and draw blood. Patients wait in their hospital room until it is time to go to the operating room.