By SARA GIBONEY
KEARNEY – Lorissa Roepke spent her freshman year at the University of Nebraska at Kearney consumed by her heart.
It was during her first semester at UNK that the elementary education major experienced shortness of breath, lightheadedness and a rapid heart rate as she walked across campus to her job at the UNK Child Development Center.
“I knew myself well enough to know something was wrong,” she said.
The 19-year old from Kearney had always been active – participating in cheerleading and dance during high school. She even developed an interest in running, participating in three Warrior Dash races, the Midsummer Night’s Trail Run in Hastings and numerous 5Ks.
Roepke went to the UNK Student Health Care clinic to find out what was wrong. A nurse practitioner referred Roepke to a cardiologist.
“The nurse practitioner knew that Lorissa was a cheerleader in high school and that she was in dance, and that she was running 5Ks. She knew she was active, so when Lorissa came in and said, ‘This is what’s happening. This isn’t right,’ she took it very seriously,” said Roepke’s mom, Lana Horn.
Just a few months after her visit to the student health center, in November 2013, she was diagnosed with hypertrophic cardiomyopathy at the Children’s Hospital and Medical Center in Omaha.
Hypertrophic cardiomyopathy is a disease in which the heart muscle becomes abnormally thick, according to American Heart Association. This makes pumping blood much harder for the heart.
The disease affects about one out of every 500 people, affects men and women equally and can affect people of any age. Hypertrophic cardiomyopathy is usually inherited. It’s caused by a mutation in genes in heart muscle proteins.
Roepke initially took medication to help relieve her symptoms, and began reaching out for support on campus.
Disability Services for Students helped Roepke reach out to her professors to let them know about her diagnosis and what they should do in case of an emergency.
“It was kind of cool because I’m a shy person, and I wouldn’t normally go up to professors,” she said. “But now I have a reason why I have to talk to them. I like that I know them one-on-one.”
After completing her first semester at UNK, Roepke’s illness forced her to take a break from classes during the spring semester.
In February, she went back to the hospital for a heart catheterization, a procedure that examines how well the heart is working.
During her visit Roepke’s doctors discovered that she had heart failure. She was hospitalized and received a pacemaker. A pacemaker is a small device that is placed under the skin of the chest or abdomen to help control heart arrhythmias. The device sends electrical pulses to prompt the heart to beat normally.
Just a month later, Roepke was added to the heart transplant list.
There are three classifications on the transplant list – 1A, 1B and 2. Roepke is listed as 1B, which means she is the second-highest priority on the waiting list.
“I never imagined any of this happening,” Roepke said.
Now less than a year after her first symptoms, Roepke and her family finally know why she is experiencing heart failure at such a young age.
Roepke’s doctors discovered that she has familial hypertrophic cardiomyopathy, which means her heart disease was inherited. Her mom and dad, Larry Roepke, recently underwent genetic testing to find out who the carrier of the altered gene was. They discovered that the carrier was Horn. She must now get an echocardiogram so doctors can find out if her heart muscle is thick like Roepke’s.
Roepke’s brother, Logan, 24, will receive genetic testing, and some relatives may also have the testing done.
Despite spending most days fatigued with headaches and stomach aches, and anxiously waiting to hear that a heart is waiting for her, Roepke chooses to see the positive in her journey.
“It’s more of a growing experience for me and for the people around me. It’s a lot to take in, but I know I can handle it. I try to be level headed and just remember that it’s just a moment in my life to grow,” she said.
“Even when you feel like you’re drowning in it all, there’s always going to be something there that you can hold on to, like dreams and goals for the future.”
Her goals for the future include becoming an elementary school teacher. Her love of children was inspired by her mom, who works as the early childhood coordinator at Head Start.
“It’s been difficult, but Lorissa has just been so positive and has such a good outlook on everything. That’s given me the strength to get through it too,” Horn said.
Roepke has enrolled in online classes for the fall semester.
Family friends organized a T-shirt fundraiser to help Roepke’s family with increasing medical bills.
“It’s a fundraiser to help us with our medical bills, but it’s more that I want people to know my story and know that young people can have heart disease too,” Roepke said.
T-shirts can be ordered through July 11 by going to the Team Lorissa Facebook page.
Source: Lana Horn, 308.293.5590
Writer: Sara Giboney, 308.865.8529, firstname.lastname@example.org