It wasn’t that long ago when the very concept of transferring a heart from one person to another was considered pure science fiction. Of course, today heart transplants are successfully performed on a regular basis. This doesn’t mean that heart transplant surgery and the challenges faced during recovery are considered routine—far from it. A family with a child that needs a heart transplant rides a rollercoaster of emotions, experiencing feelings of hope and determination offset by times of anger, sadness, confusion, and frustration that can be overwhelming.
The Heart Center at Primary Children’s Hospital has a deep understanding of both the physical and emotional challenges of heart transplant surgery. That’s why we created a transplant program separate from the general cardiology team; a program with physicians and nurses, including a transplant coordinator, who are dedicated to heart transplants. The program began more than 25 years ago, giving us the valuable experience of performing over 100 heart transplant surgeries on patients ranging in age from newborns to 18-year-olds. We’ve gathered much information along the way and gained valuable insights that have guided the development of our comprehensive program, which addresses both the physical conditions and the emotional issues involved with end-stage heart disease and heart transplant surgeries.
The Heart Center also has the benefit of a unique collaboration with the Utah Transplantation Affiliated Hospitals (U.T.A.H.) Cardiac Transplant Program, a program that unites four Utah hospital systems and that has collectively performed over 1,000 heart transplant surgeries. Through this collaboration, our program has access to wide-ranging resources and information about the latest surgical procedures and recovery treatments. The knowledge that we have gained has led to innovative new treatment protocols and a continually improving program that boasts one-year survival rates of over 90%.
Living Your Best Life
Successful heart transplant operations are, of course, essential, but a recovery program that helps patients to become strong and independent is equally important. That’s why, following the surgery, when the patient is ready and is at least 10-years-old, our transition program kicks in. The focus of the program completely flips the old thinking that transplant patients are fragile and must remain under the care of parents or family members for the rest of their lives. Instead, the transition program uses a multi-disciplinary approach that empowers patients to manage their own care. For example, pharmacists teach patients about the medicines they need to take, financial counselors go over patients’ ongoing insurance needs, and social workers discuss with patients their educational goals and career possibilities.
The Heart Center’s transition program even helps patients with the shift to their adult medical providers by bringing in the new providers to meet with the patients in their comfort zone at Primary Children’s Hospital. Likewise, the transplant coordinator will accompany the patient to their first appointment with their new adult medical provider to ensure that the transition of care goes smoothly and that each patient’s adult provider has a thorough knowledge of the patient’s case history and understands any special preferences and needs.
Heart transplant patients can go on to become active members of their families and communities. This isn’t science fiction. This is today’s reality. We know, because we’ve seen it happen time and time again, as heart transplant recipients graduate from our transitions program and move on to lead healthy, happy, and productive lives.