ROCKINGHAM — On the outside, Trista Hanselman appears to be a healthy 14-year-old student — but inside she is waging war with a rare medical condition known as postural orthostatic tachycardia syndrome.
According to the National Institute of Neurological Disorders and Stroke, POTS involves another condition in which “…an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising” which is “relieved by lying down again.”
Trista’s mother, Lisa McLendon, describes the process that led to the diagnosis as having been “an absolute nightmare.”
“That saying that it takes a village? Well, it absolutely does,” McLendon said. “And I hope the community will come together and help. It took us a while to get her to (UNC Medical Center in) Chapel Hill. It all started with this: ‘Mama, it feels like there’s glass in my stomach.’ From there, it was just emergency room after emergency room, and because her blood work kept coming back normal, they just thought she was depressed.”
She described her daughter suffering from agonizing abdominal pain, chronic fatigue and digestive disorders — and that her doctors were not quick to connect the dots. McLendon remembers times when her daughter’s feet would turn purple, or she would faint, but by the time she got Trista to medical facilities, the episodes would pass.
“It was like they didn’t believe me,” McLendon said. They would say, ‘That can’t happen,’ or ‘You’re imagining it.’ So it occurred to me to take pictures of her feet when they turn purple, take pictures of the bruising that comes from nowhere.”
The teen’s primary care physician, McLendon said, is the one who ultimately referred the family to Chapel Hill.
“He was the one who finally said, ‘I believe you. I know there’s something here. I don’t know the answer, but I’m going to get you to someone who does,’” she said.
She explained that her daughter has had two positive antinuclear antibodies tests at Chapel Hill.
“It means you have an autoimmune condition,” McLendon said. “Autonomic disregulation, where she cannot regulate her body temperature. Just because you look at someone and they look perfectly normal doesn’t mean there’s not something terribly wrong, and you should not be so judgmental and quick to judge.”
At Chapel Hill, the head of pediatric cardiology was assigned to her daughter’s care.
“They found out the cause of her abdominal pain, the splenic flexure, where her insides keep twisting,” McLendon said. “That’s where the majority of the pain was coming from. And I asked them about the ‘glass in your stomach’ description (Trista) had given me. I asked if they could give me an example of what she meant when she said that, of something I could understand that could cause that kind of feeling. And they said it would feel like your appendix was rupturing.”
Trista takes several medications and has to consume two liters of fluid a day.
“She has to have six grams of processed sodium a day, not table salt,” McLendon said. “And her adrenal glands don’t function. She cannot get a good nights’ sleep. She’s so tired, but it’s like her body is running a marathon every day with her heart racing like that.”
She also added that the Richmond County Ninth-Grade Academy has been helpful in supporting her daughter through her illness.
“I cannot praise them enough,” she said. “The only thing I would say to Richmond County Schools is, I was told it is policy that if she brings water to school it has to be in a sealed container or a clear container. She has to have Gatorade or Pedialyte, and we had to get a note from her doctor saying to let her bring whatever color she will drink. But as far as helping her, they have been amazing.”
McLendon said Trista relies on a variety of foods to meet her daily sodium requirement.
“Campbell’s Soup is slam full of sodium,” she said. “Or soy sauce. So now, I marinate what I’m going to cook for her in soy sauce. Ramen noodles, those are good. Sodium content actually helps her. And fatback — I actually cooked that into the collard greens for Thanksgiving. Country ham is good. Another thing I bet people don’t know is Worcestershire sauce has the primary ingredient of anchovies, and they brine that.”
She added that she often makes fried rice and flavors it with lots of soy sauce.
“The main thing she carries to school is peanuts, pistachios and cashews,” McLendon said. “With Gatorade, that works well. And pretzel sticks. Pretzels are slam full of sodium.”
Recently, Trista has also had to consult an oral surgeon due to issues with her jaw. She has even had a ruptured vessel in her eye, and battles skin problems. Her mother said it is important for parents to be watchful of groups of symptoms that appear to have no connection. She also said that when something occurs repeatedly and emergency medical providers routinely write it off as panic attacks or depression, parents should be persistent in getting to the root of the problem.
“I really needed people to understand that just because you can’t see something, it doesn’t mean it doesn’t exist,” McLendon said. “When your child comes home from school every day and is exhausted, that’s normal for a teenager. But on the weekends, if your child is still exhausted and the pulse is extremely high or low, pay attention. Document everything. Had I not started taking the pictures, taking the pictures made the difference in everything.”
She said that since Trista began taking medications prescribed at Chapel Hill, her fainting episodes have decreased and her blood oxygenation has improved.
Randy Stubbs, president of Richmond County Band Boosters and drum instructor for the Richmond Senior High School Marching Band has organized a gospel concert benefit — with help from the Rev. Joe Wilkes and Steel Wheels of Rockingham’s Joey Bostick. — for Trista, scheduled to take place Saturday, Dec. 3 at Abundant Life Church.
“Like I was telling (Wilkes and Bostick,) if you didn’t know her, you wouldn’t think anything was wrong with her,” Stubbs said. “She’s a fighter. I’m with her every day in the summer for marching band, and every Friday night and every Saturday from September to November. Trista’s a hard worker and a go-getter.
“She’s a joy to be around and to talk to, and she’s willing to learn all the time,” he continued. “She went from knowing nothing about percussion and drums to being one of the best players in what we call the front ensemble, which is called the pit. She’s very smart, a great kid and a pleasure to be around.”
Stubbs booked performances by 2nd Chance Ministries, Singing Revelations, Heart’s Song, The Mount Carmel Youth Band and soloists Bob Smith and Wanda Wooten.
Bostick has called on his fellow bikers to turn out for a benefit ride that will begin in the Dunham’s Sports parking lot, with registration beginning at 11:30 a.m. Kickstands will got up at noon, and the ride will end at Abundant Life Church shortly before 3 p.m., where it will be followed by a hot dog plate sale. The gospel concert inside the church sanctuary starts at 6 p.m.
Wilkes said his church is happy to host the event.
“She can be anything,” he said. “If you’ve got good people around you, pushing you and helping you, you can do anything. I don’t know her, but I am honored that Randy chose us. Anything that we can do to help, we will.”
Bostick said he can’t predict how many riders will show up, but that even though he made the call at the “last minute,” there could be a lot of bikes.
“I’ll pick three different routes and depending on the crowd, we could have any number of people,” he said. “The last big one was for Dan McInnis. We had 169 motorcycles.”
McLendon said she is overwhelmed by the community’s support.
“And even if people don’t come to donate anything, just show her that you’re behind her,” she said. “Understand she is trying her best at everything. She wants to be trauma nurse, a flight nurse. But like her doctor and I have told her, she might have to take a slower course.”
For more information about the bike ride, call Bostick at 910-417-9537. For information about the gospel singing, call 910-995-8544. Abundant Life Church is located at 139 School Street, Rockingham.
Reach reporter Melonie McLaurin at 910-817-2783 and follow her on Twitter @meloniemclaurin.