You’ve completed the evaluation process and are finally a formal candidate for a heart transplant. You’re on the United Network for Organ Sharing (UNOS) heart transplant waiting list. You’re ready to receive a donor heart when one becomes available.
Now, you may be wondering what to expect while you wait for a donor heart match. You may be nervous and excited. You may want to sit at home waiting for the phone to ring with good news.
Thankfully, there’s much more you can do while you wait on the transplant list. Staying healthy in mind, body, and spirit is a big part of it.
Here’s what you need to know.
What Happens After You’re Added to the Heart Transplant Waiting List?
Once you are activated on the transplant list, your transplant coordinator will contact you.
This person will be your touch point for all communications about your transplant. They’ll explain how to keep in touch with your transplant team. They’ll also let you know what information to relay back to them, including:
- Any change in your health status or condition.
- Contact information so they can get in touch when a heart becomes available.
- Medical needs.
- Questions or concerns.
- Travel plans or other upcoming plans that could interfere with receiving a transplant.
Your transplant coordinator will encourage you to continue living your life as you were, focusing on a fulfilling life while waiting for a call. Donor heart availability is difficult to predict, so wait times for heart transplants vary.
Factors that may affect your wait time include:
- Blood type.
- Geographic area where you live.
- Height and weight.
- Placement status on the waiting list.
When you are placed on the heart transplant waiting list, you will be given an indication in accordance with specific criteria for status levels 1 through 6. Status levels 1 and 2 receive top priority in heart transplants.
You can also expect to meet with your transplant team while you wait for your donor heart. This may include meeting with your transplant:
- Cardiologist for follow-up appointments based on your personal needs.
- Surgeon to discuss health status and answer any questions.
- Team for access to ongoing education about heart transplant surgery and what to expect.
How Can I Best Prepare for Heart Transplant Surgery?
Focus on your physical, mental, emotional, and spiritual health while you wait for a donor heart. This time can be emotionally difficult and uncertain. Setting up and maintaining healthy habits will make a big difference as you wait.
Some things to keep in mind include:
Staying close to the hospital
Most hospitals require patients on an organ transplant list to be within four travel hours of the hospital at which they will undergo the operation. This proximity ensures that when a donor heart is ready, you’ll be able to get to the hospital in time to receive adequate preoperative care before surgery.
Notify your transplant coordinator if you need to travel beyond this four-hour radius while on the transplant waitlist. Your status will be marked as “inactive” while you are away from the hospital boundaries. This ensures the recipient is in the area ready to receive a heart if one becomes available.
Maintaining your health
Maintaining a healthy lifestyle is important at all stages of life, but it’s especially crucial when you are expecting an organ transplant. You’ll want your body to be as healthy as possible before this life-changing surgery.
If you are overweight or obese, your transplant team may discuss a weight-loss plan with you. Losing weight can help boost your chances of a successful transplant.
Here are some other healthy lifestyle tips to follow while you’re on the waitlist:
- Avoid alcohol, cigarettes, and recreational drugs — Use of these substances can disqualify you from the heart transplant list.
- Avoid pregnancy — If you’re of child-bearing age and ability, talk with your transplant team immediately if you think you may be pregnant. You cannot undergo a heart transplant if you’re pregnant.
- Eat well — Your transplant team will provide you with helpful nutritional information. This includes what foods to avoid, what foods to consume, and how much water to drink daily. These metrics are important for ensuring a positive transplant experience.
- Exercise — You’ll want to continue physical activity as much as possible before your transplant. Even short, gentle exercises can help your body prepare for this major surgery. Talk with your transplant team about appropriate exercises.
- Manage your heart condition — If you’re on the heart transplant list, it means you have heart failure or another heart disease that needs to be actively managed. Keep up with your heart team about managing your heart condition while you wait for a donor heart.
- Practice mindfulness — Waiting on the transplant list can cause depression, anxiety, and other mental health issues. Finding time for mindfulness practices, talking with a trusted loved one or mental health professional, and devoting time to calming hobbies can help positively pass the time.
- Reach out for support — Being on an organ transplant list can be emotionally tough. Talk with your transplant team about support groups and online resources for you and your family.
- Sleep well — Practicing healthy sleep routines is helpful for maintaining a healthy lifestyle in general.
- Take your medications — You may be on heart medications for the lead-up to transplant. Be sure to keep up with your medications. Take everything exactly as prescribed to ensure a positive transplant experience.
What Happens When a Heart Becomes Available?
When an appropriate match is found and you’re assigned a donor heart, your transplant coordinator will contact you right away. They will guide you through the next steps, including finding your way to the hospital.
It’s important to pack your medications, ventricular assist device (VAD) equipment if you have one, cell phone, and charger. Do not eat or drink anything in anticipation of immediate surgery.
While you are traveling to the hospital, your transplant team will continue to assess the donor heart. They’ll confirm it is a healthy heart that meets all the match criteria for transplant.
If the heart:
- Is a good match — Your team will prep you for heart transplant surgery as soon as you arrive. This includes undergoing blood work and x-rays and completing a medical history and physical examination.
- Is not a good match — Your team will send you home, and you’ll remain on the waitlist.
Depending on your health status and if you have a VAD, heart transplant surgery can take anywhere from six to twelve hours.
Being sent home from a possible heart transplant can bring up big emotions. It is normal to feel discouraged, angry, or devastated. Be sure to talk with your transplant team for support group resources. You can also talk to a trusted loved one or mental health professional to process these feelings.
Keep maintaining your health and thinking positively to prepare yourself for when the right donor heart does come along.
The UPMC Heart Transplant Program is one of the most experienced programs in the world. Our surgeons have performed more than 1,700 adult transplants, with excellent outcomes. For more information, visit our website.