It’s not every day that Lane Veach feels like a typical 7-year-old boy. Diagnosed at the age of 3 with pulmonary hypertension—a rare disorder that took his mother’s life when he was an infant—Lane needs a continuous flow of intravenous medications to keep the incurable disease from stressing his heart and lungs.
So when doctors at Riley Hospital for Children at Indiana University Health upgraded Lane’s bulky backpack IV pump to a lightweight one he can wear at his waist, he was ecstatic.
“I’m like a normal kid now!” Lane beamed, an emotional declaration that moved his dad and doctors. “I’ll never forget that moment,” Lane’s dad Alan Veach says. “You never really know what kids perceive and how different they feel, but this was a big thing for Lane.”
The Bloomington first-grader was among the first children treated as part of Riley’s new Pediatric Pulmonary Hypertension program—one of only a few of its kind in the country—co-led by Riley Pediatric Pulmonologist Greg Montgomery, M.D., and Riley Pediatric Cardiologist Michael Johansen, D.O.
Oftentimes, children diagnosed with pulmonary hypertension bounce back and forth between cardiology and pulmonology because the disease affects both the heart and lungs. Longtime Riley pulmonary nurse Tisha Kivett pushed for a way to bridge that divide, and she now coordinates the new program, a position funded in part by Riley Children’s Foundation.
“To organize a team, you need an organizer and someone who keeps everything in place and knows all the patients. To help fund her position on an ongoing basis is something that we really need and appreciate,” Montgomery says. “We can make a difference for these patients. We’re doing things now that people weren’t doing before.”
For Lane’s family, that means essentially having a specialized pulmonary hypertension team on call to monitor his quality of life and collaborate on cutting-edge treatments. “The key thing for us about Riley is knowing that we’re going to a place where a team of experts is ready and prepared to provide the best treatment for him,” Alan says.
The ultimate goal is for Riley to become a regional referral center for children with pulmonary hypertension from across the Midwest and to take part in research aimed at improving therapies for children.
Lane now visits Riley every three months to check in with the pulmonary hypertension team and to visit with the doctors he calls his friends. Lane also has a message for those who give so generously to Riley: “I guess I would say ‘thank you,’” he says, smiling, before running off to play with his sister, just like a “normal kid.”