Waiting for a Heart Transplant

If you are approved in the Medical Review Board as a transplant candidate and the final approval from your insurance company has been received, your transplant coordinator will contact you for your permission to add your name to the United Network for Organ Sharing (UNOS) waiting list. This means that your name, address, phone number, cell phone number, status, blood type, and body size will be placed in the national computer with UNOS.

Categories for patient priority status

Heart transplant patients are listed under one of four status categories:

  • Status 1A patients are critically ill. These patients are usually in the ICU on several IV medications or several pumps.
  • Status 1B patients require something besides oral medications to control their heart failure, such as a Left Ventricular Assist Device (LVAD) or IV medications.
  • Status 2 patients are able to control their heart failure on oral medications. These patients usually wait at home.
  • Status 7 is a temporary hold status used in the case of a severe infection or when traveling out of town. When you are on hold, you retain the seniority on the list that you have accrued but you do not gain anymore time.

Your donor

Your heart donor will be chosen according to heart size, blood type, and severity of your disease. The heart must fit into your body about the same as the original organ.

You will not receive personal details about your donor. If you and your family wish to express your thanks after your transplant, you may write a letter to the donor’s family. Do not include your last name or other personal details. Your nurse coordinator will forward your letter to the donor’s family through Lifelink, Inc, our local agency that handles organ donation.

Personal Care While Waiting for Your Heart Transplant

It may be some time before you have your transplant surgery. While you wait, it is important to follow these steps:

See your transplant doctor regularly
You will see your transplant cardiologist every 1-4 weeks while you wait for your transplant. He or she will assess your health, order lab tests, adjust your medicines and tell you how often to have check-ups.

You will also need to see your primary cardiologist and family doctor regularly. Your doctors will write to each other to share the results of your exams and note any changes in your health.

Maintain your physical health
While it may not be possible to improve muscle strength because of your heart condition, it is important to try to maintain your current physical condition and stamina. This can be done by following a regular exercise routine. Activities such as walking, biking, swimming, dancing, etc. are all good activities. We do not recommend work against gravity, such as heavy lifting, pushing (push-ups) or pulling (sit-ups) as this puts extra strain on the heart.

Eat the right foods
A healthy diet is vital to maintaining your health while you wait. It also contributes to the success of your transplant after surgery. Pay special attention to controlling your sodium intake, following low cholesterol guidelines, and achieving weight loss goals if necessary.

If you do not meet the required weight, your dietitian and doctors will help you design a meal plan. You need to be at a healthy weight to stay on the waiting list.

Maintain a nicotine- and chemical-free lifestyle
We may test you for nicotine at any time. If we find nicotine in your body, you will be taken off the waiting list and will be required to complete a formal quit-smoking program. Regular attendance in groups such as Alcohol Anonymous or Narcotics Anonymous are encouraged to help you maintain your sobriety.

Call us if your insurance changes
If there is any change in your insurance, call your nurse coordinator right away. We may need to re-apply to your new insurance agency for permission to do a transplant.

Frequently Asked Questions While Waiting for a Heart Transplant

How will I know when there is a donor?
You will need to carry a cell phone so we can contact you quickly when a donor becomes available. Once a donor is available, we’ll call your home telephone first. If there is no answer, your cell phone will be called next. Make sure you carry your cell phone anytime you are out of your house. If your home computer connects to your only phone line, be sure to keep your cell phone on while someone is using the computer.

You must call the transplant office any time you go into the hospital or on vacation, are admitted to an outside hospital, or are in an area where cell phone service is unavailable.

What if I get sick while I am waiting?
It is important for you to keep the transplant team up-to-date about your health after you have been accepted as a transplant candidate. Please notify the transplant team of all illnesses and infections such as pneumonia, dental abscesses or major skin infections. Any infection must be treated before your transplant. If your overall health worsens, notify your transplant coordinator, as we may need to change your status with UNOS.