In many ways, Gretchen Gregor is a typical teenager. An only child, she lives with her parents, Stacy and Jeff, in their West End home. She loves animals, enjoys a good movie night, and looks forward to frightening the masses at her job in a haunted house every Halloween.
But at seventeen, she has been through a medical odyssey that most of her peers can’t even imagine. It all started when she was just eleven years old, practicing with her tennis coach on a hot summer day.
“It was 90-something degrees outside,” Gretchen says. “I started to feel faint, and then I started to see black dots in my vision, and I just fell right over the net.”
Stacy, her mother, says it was a moment she’ll never forget.
“It was horrifying,” she says. “I was trying to figure out what she was doing, and then her coach is summoning me over and I see her fall on the ground – just completely out. That was kind of the beginning of everything.”
They got to Gretchen’s pediatrician as soon as they could and described what had happened. They also brought up some other issues Gretchen had been dealing with, like joint pain, stomach issues, and dizzy spells.
“And the pediatrician said, ‘This sounds a lot like POTS,’” says Gretchen. “But we had no idea what that was.”
POTS is short for postural orthostatic tachycardia syndrome, a blood circulation disorder in which prolonged standing, or the transition to a standing position, leads to a significantly increased heart rate. This can cause a long list of uncomfortable and potentially dangerous symptoms, like dizziness, fainting, nausea, exhaustion, and anxiety.
“We were very lucky that she recognized it,” says Stacy. “A lot of doctors don’t.”
The pediatrician referred Gretchen to specialists for further investigation of her symptoms, and it was at a cardiology visit that her POTS diagnosis was confirmed.
“But there’s really no cure for POTS,” says Gretchen, “so there wasn’t a lot they could do. It was basically, ‘You have this chronic illness, here are some things you can do to sort of manage it.’”
She learned to balance her water intake with plenty of sodium and to get as much exercise as she could manage, despite her fatigue. Gretchen began to recognize the signs that she might pass out, taking breaks and changing her position to keep it from happening.
“And over time I felt like I was getting better,” she says. “But this year, it started getting worse again, and I started to have new symptoms – like nausea and headaches. And that’s when we heard about Dr. Chelimsky.”
Gisela Chelimsky, MD, is the new chief of pediatric gastroenterology at Children’s Hospital of Richmond at VCU. She’s also board certified in autonomic disorders, including POTS, and has become a leading expert on the topic.
“The autonomic nervous system controls things like breathing, digestion, and blood pressure,” she says. “When the body isn’t able to regulate these functions properly, you see conditions like POTS.”
As a pediatric gastroenterologist, she was seeing a lot of patients who were experiencing digestive symptoms like unexplained nausea, uncontrolled vomiting, and severe abdominal pain. In many of those patients, the digestive issues were just the tip of the iceberg, coming along with migraines, fatigue, joint pain, and more.
“But these patients were dismissed by so many doctors,” she says, “because the blood tests came back normal, the scope was normal, and the CT scan was normal. But a normal test result doesn’t mean there’s nothing wrong.”
Because the physical symptoms are often accompanied by anxiety, Dr. Chelimsky adds, they may be dismissed by some as being “all in a patient’s head.” But the anxiety is a product of their physical symptoms, not a cause.
“If you never know when you might pass out, or have to leave because you feel unwell,” Dr. Chelimsky says, “you are always on alert for that.”
As she saw more of these patients, Dr. Chelimsky began exploring the connection between the gut and brain and its role in their conditions. She didn’t have to look far for the perfect partner in this specialty: Her husband, Thomas Chelimsky, MD, is a neurologist and shares her interest in treating chronic overlapping pain conditions. They came to VCU from Wisconsin last February. After two decades of research and practice in autonomic disorders, they are excited to bring their expertise to Richmond.
“We are very blessed to be in an academic center,” she says. “We can balance patient care with teaching and research to help more clinicians understand what their patients are experiencing and what they need.”
For the pain her patients experience, Dr. Chelimsky uses a biobehavioral approach. This involves the use of physical therapy, cognitive behavioral therapy, exercise, and lifestyle changes to keep pain under control by reaching it at its source.
“Pain is really generated in the brain,” she says. “Your brain gets a signal and responds to tell you what [the pain] is and how to react. But when your brain is in constant fight-or-flight mode, it perceives every bodily signal as a threat, and that is felt as pain. So it’s helpful to teach the brain how to respond in a different way.”
According to Dr. Chelimsky, it’s an approach that is well supported by decades of research, but it requires commitment and work from the patient to be effective. For patients, working with a therapist on their pain response can be a long and complex process. And a major key to feeling better is getting regular exercise – “the less you do, the more you’ll hurt,” says Dr. Chelimsky – but that can be a hard sell to a patient who is battling fatigue and dizziness.
“There is no magic pill,” she says. “The patient must take an active role in their healing. They will have to do the work and cooperate with a team if they want to feel better.”
Gretchen says her first visit with Dr. Chelimsky felt like a big step in the right direction. The two had a long talk about her symptoms, her worries, and the ways in which POTS and its complications had limited her young life.
“She spent two hours talking with me about my condition,” she recalls. “I just felt very respected and like someone actually understood me and listened to me.”
Some bloodwork indicated that Gretchen wasn’t getting enough iron, vitamin D, or B12, so she began supplements for those right away. But just as Dr. Chelimsky says, the real progress has come through Gretchen’s commitment to feeling better. She practices breathing techniques to keep the pain at bay, works with a cognitive behavioral therapist to better understand her brain’s pain response, and takes more walks to check exercise off her to-do list.
“It’s not easy, with the fatigue and just being short of breath all the time,” she says. “But I just got a rowing machine, and that will help because it keeps me in a horizontal position, so my blood isn’t pooling in my feet.”
It hasn’t been immediate or constant relief, according to Gretchen, but she’s feeling stronger and better than she did before meeting Dr. Chelimsky. Earlier this year, she even felt well enough for a trip to Arizona with her parents.
“It was my first time traveling across the country,” she says. “I was really anxious because I’d never done something like that, and I was worried that my POTS would flare up. But I was able to take breaks when I needed to, and I had a really good time.”
With her physical symptoms under much better control, Gretchen says she still deals with the social isolation that comes along with POTS.
“I have just felt isolated at times because sometimes I feel like I can’t do normal things,” she says. “People don’t always understand that you’re going to have to take breaks, or you might have to cancel because you feel really lousy.”
Attending school virtually has contributed to some of that isolation, she says, but it has also helped her get through her studies at Deep Run High School with less anxiety and exhaustion.
“And her guidance counselor is incredible,” says Stacy. “She always puts Gretchen’s health and physical and mental well-being over academics. The school overall has been very supportive, so that’s another area where we’ve been lucky.”
One thing Gretchen always looks forward to is her seasonal job at Red Vein Haunt in Ashland. For two autumns now, she has portrayed a clown named Tiny, Jr. and has enjoyed scaring thrill seekers. When she’s working, she brings with her what she calls her POTS bag, a backpack filled with salty snacks, water, sports drinks, a portable fan – all things that can help revive her if she’s feeling ill during her shift.
Stacy says the Red Vein Haunt team has been like a second family to Gretchen.
“They all kind of look out for her when she’s feeling poorly and allow her to take breaks when she needs to. And she has so much fun with it.”
Now Gretchen has college on her mind, perhaps with a virtual start so she can make the transition gradually.
“I think I might like to major in psychology,” she says, “or biology. Something to do with animals or the mind – those are big areas of interest for me.”
Even as her symptoms improve, with adulthood right around the corner, she is pragmatic about the days ahead.
“I think it’s important to know that with a chronic condition, even with a great doctor you are still going to have bad days,” she says. “There will be days when you just won’t feel good. But I also think it’s important to know that there are good days as well. You can’t just focus on the bad days.”
And when she has those good days, it is easier to count her blessings – even the ones that came with POTS.
“I do think having this chronic illness has made me stronger in a way,” she says. “Obviously it’s not fun to deal with, but it’s made me more resilient. And I’m slowly getting better and stronger with each day.”
Photography: Jeff Gregor
