Double Lung Transplant Restores the Joy of Music

Katie Hoskins, a 15-year-old from Iowa, has music in her soul. At the age of 5, she began picking out tunes on a piano and playing them by ear. She also learned how to play the ukulele and used music and singing to express her emotions.

Everything changed in October 2022 when Katie experienced a frightening medical event at home. After a six-month period of increasing fatigue and panic attacks, her symptoms took an alarming turn. “One day, she came in the kitchen, walked to the pantry and then had to rest,” her mother said. “Then she walked to the counter and had to rest again.” Moments later, Katie looked like she was about to pass out. Her mother grabbed her shoulders and saw that her face was completely white and her pupils were dilated. Her parents rushed her to the emergency room, but doctors couldn’t determine what caused the event. 

Diagnosis: Pulmonary veno-occlusive disease

Katie was transported to another hospital, and physicians there suspected pulmonary veno-occlusive disease (PVOD), a rare condition characterized by blockage of the pulmonary veins that carry oxygenated blood from the lungs to the heart. Physicians at her local hospital consulted several hospitals around the country, including Texas Children’s Hospital. Her parents remained strong and optimistic but knew something was seriously wrong. 

When experts from the Texas Children’s Pulmonary Hypertension Center were consulted by Katie's physicians in Omaha, they were instantly concerned about PVOD and recommended that Katie be transferred without delay to Texas Children's for PH and Lung Transplant team evaluations. Katie and her mother were transported by plane a few days later, while her father made a 15-hour drive to meet them. 

Texas Children’s leads the nation in transplants

A whirlwind of tests and procedures followed over a very short time. The team at Texas Children’s renowned Lung Transplant Program knew that Katie’s condition was critical and that they needed to move forward quickly to save her life. All the required evaluations were performed in two days — a process that usually takes weeks. Her transplant was approved in an emergency meeting, and Katie was put on extracorporeal membrane oxygenation (ECMO) until donor lungs became available. ECMO allows blood to be pumped outside the body to a heart-lung machine, which then removes carbon dioxide and sends oxygen-filled blood back to tissues in the body. This process causes blood to “bypass” the heart and lungs, taking stress off the organs. 

Ten days after being placed on the transplant list, Katie received her new lungs—and a second chance at life.

Dr. Tina Melicoff, Medical Director of the Lung Transplant Program, was a key player in Katie’s treatment and recovery. Together with a group of specialized clinicians and nurses, she takes care of children with respiratory failure who need or have received a lung transplant. She is also heavily involved in research studies across the United States and has made important contributions to measuring lung transplant recipients’ quality of life.

The magic of music

“Katie’s progress has happened because of her determination and positivity,” said Dr. Melicoff. “Every patient has their own way of coping with the ups and downs of lung disease and transplant; Katie’s singing not only helped her morale and courage, it was also a very effective way of opening her lungs and strengthening her respiratory muscles.” While she expected Katie to battle pain and fatigue, instead she saw her quickly begin singing and starting to recover.

Texas Children’s Music Therapy team played a significant role in Katie’s pre-surgery treatment and post-transplant recovery. “I probably would have just given up if the therapists hadn’t worked with me and encouraged me before the transplant,” she said. “Music kept me going. When I wasn’t feeling well, I would listen to music to find a calm oasis. I was very discouraged because I couldn’t sing, but the music brought me peace.” 

Before her transplant, the music therapists brought instruments to Katie’s room, and hospital staff and patients often stopped by to enjoy her instrumental performances. Her therapy continued post-surgery to strengthen her lungs and her resolve to heal, with singing and recording sessions in Texas Children’s music therapy studio in Texas Children’s West Tower.

“As a music therapist, my role is to use music to help children heal, both physically and emotionally,” said Hillary Gómez, music therapist at Texas Children’s Hospital. “It was so special to watch Katie learn that her new lungs enabled to her to still do the thing she loves most: singing.”

Now Katie is starting to think about what she wants to do with her talent. She loves sharing her singing voice and thinks that performing for others is a wonderful way to honor the gift of lungs from her donor family and to recognize the care she’s received at Texas Children’s. She’s also considering becoming a Child Life specialist or music therapist because these caregivers made such a significant difference in supporting her and boosting her morale during this very challenging time in her life.

Katie is grateful for the friendships she made at Texas Children’s and the outstanding support she received. When asked what advice she would give to a patient facing a transplant, she stressed the value of being confident and seeing hope. “Try to stay positive,” she said. “There was a point in my recovery after the transplant when I didn’t think things would get better. But now my pain is almost completely gone, and I can breathe more normally and walk faster and longer. It just takes time. It was devastating to not be able to breathe, or to be able to sing — it feels like a miracle to be able to do that again.” 

Most of all, Katie is thankful to her donor and their family. “They gave me a second chance at life, and I am not going to take it for granted. I grateful to be able to sing again, and I am going to use my new lungs to the best of their ability to honor this wonderful gift.”