“I felt like I was missing out on a lot.”
Growing up, 15-year-old Maria Wilmes couldn’t participate in sports. She couldn’t walk down the school hallway without stopping to catch her breath. Couldn’t plan for the future – until now. In December 2017, Maria became the first patient to receive a heart-lung transplant at Nebraska Medicine, marking the first time a heart-lung transplant has been performed in the state of Nebraska.
“We’re honored that Maria and her family chose Nebraska Medicine for her transplant and excited that she’s doing so well,” says Heather Strah, MD, medical director of lung transplantation at Nebraska Medicine. “Maria’s attitude has been great and that’s playing a big role in her recovery.”
Growing up in Dakota City, Nebraska, Maria was the youngest of seven siblings – all girls. Her parents, Mike and Gina, have owned and operated Wilmes Hardware in South Sioux City, Nebraska, for 30 years. They first noticed something was wrong with Maria at the age of two.
“She had a nose bleed one day,” explains Maria’s dad, Mike. “After taking her to the doctor in Sioux City, Iowa, they found a significant heart murmur.”
On Oct. 1, 2004, Maria was diagnosed with pulmonary hypertension (high blood pressure in the lungs) that was caused by her congenital heart disease known as double inlet left ventricle with transposition of the great vessels. Maria would eventually need a heart-lung transplant so she would have healthy lungs and a structurally normal heart.
“The doctors told us it would be 5 to 10 years,” says Maria’s mom, Gina. “She was busy living life and spending time with family and friends, but in September 2017, Maria’s health started declining. She couldn’t sleep at night – her heart would start racing and her breathing would hurt.”
Maria and her parents sought advice from Scott Fletcher, MD, Maria’s longtime pediatric cardiologist at Children’s Hospital & Medical Center. A cardiac catheterization confirmed the progression of her pulmonary vascular disease was getting worse and she likely only had a few months to live. Because Maria and her family wanted the heart-lung transplant to happen close to home, Dr. Fletcher recommended Nebraska Medicine – Nebraska Medical Center, which has performed more than 300 heart transplants since 2005 and revived its Lung Transplant Program in 2015. Nebraska Medicine is one of a few health care networks nationwide to offer all solid organ transplants under one roof.
“Children’s Hospital & Medical Center has a robust heart transplant program, but we do not transplant lungs – very few pediatric medical centers do,” says Dr. Fletcher. “After much thought, we decided Maria’s age was reasonable to proceed in the adult center. I was comfortable knowing she would receive excellent care and that we would have open communication among the adult and pediatric providers. This is the heart of good transitional medicine.”
“When we decided to go this route, there was an initial, ‘they’ve never done a heart-lung transplant before,’” says Gina. “But at the same time, when we met the team at Nebraska Medicine, we felt very at ease. If we had to go to Texas or California for the transplant, it meant uprooting ourselves from family and friends. This way, we’d only be an hour away from home and Mike could still be involved in Maria’s care while managing the hardware store.”
The week of Thanksgiving, Maria’s name was added to the transplant waiting list. On Monday, Dec. 4, Mike went into the hardware store at 6 a.m. and a line of scripture kept playing in his head – fear is useless; what’s needed is trust. After researching the verse online, Mike discovered it came from a story in the Bible where Jesus brings a 12-year-old girl back to life.
“What’s so significant is that night at 5 p.m., Nebraska Medicine called, saying they had found a donor for Maria,” says Mike. “When we were driving down to Omaha, it was a very anxious moment for all of us, but I told Maria that story and said, ‘fear is useless; what’s needed is trust.’”
“The night before we got the phone call, I found Maria sitting up in bed and it was the first time she said to me, ‘Mom, I can’t do this anymore.’ It was heartbreaking,” adds Gina. “During the day, I kept thinking about the donor. Someone is going to have to die in order for Maria to receive this gift. That day, for whatever reason, it weighed heavily on my heart. I found myself praying for them. So that night when we got the call, it was all very surreal.”
Maria’s transplant started around 1 a.m. on Dec. 5, 2017, and took nearly eight hours. The surgical team consisted of Aleem Siddique, MBBS, surgical director of lung transplantation; Michael Moulton, MD, cardiothoracic surgeon; John Um, MD, surgical director of cardiac transplantation and mechanical circulatory support programs; Marian Urban, MD, PhD, cardiothoracic surgeon; and David Berkheim, MD, thoracic surgeon. A team of anesthesiologists, surgeons, physician assistants, perfusionists, pharmacists, nursing personnel and other staff members were also in the room.
“Maria’s surgery went very well without any major complications,” says Dr. Siddique. “We are very pleased with Maria’s progress so far and proud of the team’s effort.”
Maria spent nearly two weeks at Nebraska Medicine – Nebraska Medical Center following her transplant. She’s now attending pulmonary rehabilitation sessions to regain her physical strength. Maria’s cardiology and pulmonary teams will continue to work together to make sure her heart and lungs stay healthy. Her doctors are hopeful that Maria can return home within the next few months and start living a normal life.
“I feel really good. I can go for a walk without getting tired and even lie down and sleep at night. I’m really excited to be able to think about the future. I want to be on the cheer team at my school and maybe even play a sport or two,” says Maria. “I can’t thank my medical team enough – they saved my life. I know I’ll always have someone to turn to if I have a problem.”
Maria says she’s especially grateful for her organ donor and their family. Without them, Maria isn’t sure where she’d be today. She encourages everyone who is able to become a registered organ donor. Currently, 120,000 Americans are waiting for a life-saving organ transplant. In Nebraska, there are nearly 500 people in need of a donor.
“You should become an organ donor because you can change someone’s life and just mean the world to them,” says Maria.
To register as an organ donor, visit Live On Nebraska or www.donatelife.net.
