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Heart Transplant/Heart Failure Program

The organ transplant process can seem overwhelming at times. Your transplant coordinator will offer support, answer questions and guide you through every step. The following common questions offer a general overview of what to expect.

How do they find a matching organ?
Donor organs come from deceased heart donors who participated in an organ donation program. In some instances, a family member donates a spouse’s or child’s organs after a fatal illness or accident.

Once a child is approved for a transplant, the child’s name is shared with the United Network for Organ Sharing (UNOS) database. UNOS oversees organ donation and distribution, prioritizing recipients based on several criteria. These include compatibility measures, such as blood type, body and heart size, your child’s location, severity of illness and other considerations.

How long does it take to find a suitable heart?

Wait times can range from days to years. Although specialists prioritize organ donors from close locations, children can receive a donated heart from anywhere within the United States. Heart transplant doctors at Phoenix Children’s examine the organ to ensure it’s healthy and compatible.  

How do I prepare for an organ transplant?

Your child’s transplant coordinator will tell you how to be ready whenever an organ becomes available. Your transplant coordinator will contact you, so it is essential to provide current contact information and alternate contacts. Also, keep fully charged devices with you.

You will need to have a packed suitcase ready and bring your child’s medications. Your care team will tell you which drugs your child should take or delay before surgery, and where to go when you arrive at Phoenix Children’s Heart Center.

Families should make caregiver arrangements in advance and have reliable transportation options. When you arrive at Phoenix Children’s Heart Center, the transplant coordinator and team will direct your family and prepare your child for surgery. Your child will have blood tests and other testing before the transplant.

What happens during transplant surgery?

After your child receives a general anesthetic, doctors put your child on a heart-lung machine to circulate blood throughout the body. Surgeons open the chest to remove the diseased heart and implant a new heart, attaching major blood vessels. Doctors remove the machine once the new heart is in place and is beating on its own.

Transplant surgery can take four hours or longer, depending on the child’s condition. Our team will visit you in a nearby waiting room to keep you informed throughout the surgery.  

What can I expect after transplant surgery?

Your child will awaken gradually and may feel groggy as the anesthesia wears off. A breathing tube attached to a ventilator provides respiratory support for a day or two after surgery so your child will not be able to talk, but will have medicine to help with rest. Doctors will discuss your child’s condition and the post-surgery healing process.

Specialists in our cardiovascular critical care unit (CVICU) manage post-transplant care, including advanced, 24/7 monitoring. They treat surgical wounds and manage IV pain medication, ventilator care, feeding and fluid-drainage tubes, and medication, including antibiotics and anti-rejection drugs.

After further recovery, doctors determine whether patients are ready to move to another hospital room at Phoenix Children’s Heart Center. Most patients go home within one to three weeks.

What is the recovery process like?

Your care team will go over your child’s discharge plans, including instructions about home care, follow-up appointments, wound care and how to recognize and report potential complications or get help for questions or concerns.

Recovery includes specialized cardiac rehabilitation, including respiratory, physical and occupational therapies to help your child exercise, heal and build strength.

Doctors reduce and adjust medications as your child recovers, but your child will require anti-rejection medication and regular heart monitoring and checkups throughout life. Although it’s a challenging process, with expert care and healthy lifestyle habits, most children enjoy renewed vigor and a good quality of life after a heart transplant.

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