Despite losing her leg and having a double lung transplant, Lindsey Roy is the picture of strength as she inspires others and gives back out of gratitude.
When Lindsey Roy lost her leg and suffered multiple serious injuries in a boating accident in 2013, she courageously overcame enormous hurdles in her recovery. Unfortunately, she wasn’t done yet.
Less than 10 years later—in 2021—she was diagnosed with pulmonary hypertension, caused by systemic scleroderma, a rare autoimmune condition, that led to a double lung transplant at Barnes-Jewish Hospital in 2022.
COURAGE UNDER FIRE
While Lindsey has faced more challenges than most people do in a lifetime, you won’t hear her complaining or feeling sorry for herself. This 46-year-old Hallmark executive from Kansas City personifies resilience.
Instead of curling up in her bed after her traumatic health crises, she got busy writing a book and giving motivational presentations around the country. She also has been featured in numerous publications, including O, The Oprah Magazine; Fast Company; and Forbes.
Before the boating accident, Lindsey’s life was busy but peaceful. “I was healthy and normal until I wasn’t,” she says. “After I lost my leg, I went through a grieving process. But for the sake of my two kids, I came to accept it. Now I’m positive, honest, and motivated. Resilience is gained through hard times, and over time, you build your resilience muscles.”
As she recovered from her injuries, Lindsey resumed her active life with two children, her husband, and a rewarding career. She learned to walk again and has traveled all over the world with her prosthetic leg.
“I don’t feel like I have a disability,” she says. “My situation just became part of me.”
In 2017, Lindsey shared her strength with others in a TedX talk called “What Trauma Taught Me About Happiness.”
“I created that talk because it’s helpful to have a purpose in pain,” she says. “After the accident, I decided to become a motivational speaker to help others, and I wanted to write a book. I believe sharing our stories is a key part of life, to help each other learn from our unique paths walked, to add to our collective wisdom.” But new chapters were about to be added to her life story.
ANOTHER MOUNTAIN TO CLIMB
Lindsey’s next hurdle started in November 2021. While in Colorado with her husband, she began experiencing extreme shortness of breath. In the weeks prior, she hadn’t been feeling well and was increasingly out of breath. At times, her heart would race just walking from her bedroom to the kitchen. The seriousness of her latest episode sent her scrambling for answers.
After consulting multiple doctors, Lindsey finally received the devastating diagnosis of pulmonary hypertension caused by systemic scleroderma. Lindsey had been aware of the underlying condition for many years. She was originally diagnosed with a milder version of the disease, known as CREST syndrome or limited scleroderma. Her condition was seemingly stable and quiet, causing manageable symptoms like cold hands (Raynaud’s phenomenon) and telangiectasias (widened blood vessels in the skin). In more extreme cases, the disease process will result in an attack on the lungs or heart, leading to pulmonary hypertension.
“I have a rare condition of a rare condition,” Lindsey explains.
The disease was damaging her lungs and straining her heart, which had enlarged to three times its normal size.
Although she received temporary relief from treatment at another hospital, her condition continued to deteriorate. Finally, Lindsey was told she needed a double lung transplant. Since no hospitals in Kansas City perform lung transplants, Lindsey began a quest to find the right transplant center, traveling to Mayo Clinic, Johns Hopkins Hospital, and other prestigious hospitals— including Barnes-Jewish Hospital just four hours from home.
“Barnes-Jewish Hospital was our number one choice because of its great reputation and proximity to home,” Lindsey says. “It was a smooth process with great people. The team went above and beyond all expectations. They do such a high volume of lung transplants—80 to 100 a year—and their expertise was evident.”
The lung transplant program at Washington University and Barnes-Jewish Transplant Center is one of the oldest and most experienced in the world. Outcomes and survival rates are consistently above national averages.
By June 2022, Lindsey was on the lung transplant list. Three weeks later, she got the call, and her life changed dramatically once again. She received a double lung transplant at Barnes-Jewish Hospital July 7, 2022.
Lindsey says she “won the lottery” with Ruben Nava Bahena, MD, her Washington University transplant surgeon at Barnes-Jewish. “He is a pioneer in lung transplant and is so brilliant,” she says. “Transplant is a team sport, and Barnes-Jewish has an incredibly strong team including the pulmonologists, nurses, coordinators, respiratory therapists, pharmacists, dieticians, and many others. They helped me understand what was going to happen before, during, and after surgery. People were upbeat and supportive and made me feel special.”
WHY NOT ME?
With all Lindsey has dealt with over the past 10 years, it would seem natural for her to ask “why me?” But she refuses to take that path. “Asking ‘why me’ is a road to nowhere,” she says. “There’s no wisdom in that, and I don’t keep score of problems. Why not me? You don’t know how strong you are until you have to be. Now I take everything day by day, moment by moment.”
Rather than being sidelined by her personal tragedies, Lindsey draws on them for strength and perspective and shares them to inspire others. Her national speaking engagements are her passion and her hobby, and her book, “The Gift of Perspective,” is being published in the fall.
“I have faith that there’s a reason these things happened to me, and I’m very driven to use this experience so something good can come from it and it can help others,” she says.
“My faith got me through this, and I’m so grateful to be where I am today versus a year ago at this time,” she says. Lindsey continues to receive ongoing post-transplant care at Barnes-Jewish, like other transplant patients.
While Lindsey inspires everyone she meets, she feels the most important audience to inspire is her children, who are now 12 and 14. “I lost my leg when they were ages 2 and 4, so it has just been part of their lives,” Lindsey says. “They’ve seen me adapt to life’s challenges. I hope my experience has given them seeds of empathy, resilience, and faith.”
With strength and grace, Lindsey is determined to live each day with purpose. Two powerful quotes motivate her on difficult days. One is by Robert Frost: “The only way out is through.” The other is from tennis legend Arthur Ashe: “Start where you are, use what you have, and do what you can.”
GRATITUDE INSPIRES GIVING BACK
Lindsey’s journey has inspired her to give back. She and her husband, Aaron, recently made a gift to The Foundation for Barnes-Jewish Hospital to help other transplant patients by funding innovation in lung transplant research through the Cizek Lung Transplant Research Fund.
“When you almost die, you have such gratitude and perspective,” Lindsey says. “I’m incredibly grateful to my organ donor and family for their selfless act and to the smart people who have spent their lives training to care for patients like me. When you can’t breathe, there’s not much else you can do. Now, being a small part of impacting outcomes for me and for others drives my desire to give. It’s a blessing to be able to give to help others.” She continues: “We all have something unique to give to the world. The question is what can you do in this moment?"
Written by Joyce Romine
Photography by Erin Jones - BJC HealthCare
Photos courtesy of Lindsey Roy
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