MACEDONIA, Ohio — Imagine being told you had a chronic illness, only to find out years later that it was never the problem.
Dan Yung's symptoms all pointed to a common chronic ailment, but turns out it was anything but common, and it took 40 years to solve.
"Well, it started way back when I was probably 29, 30," Yung recalls. "I was just constantly coughing and my lungs would fill with fluid, kind of like if you had bronchitis."
The symptoms would become worse when he laid down, and bad enough that he sought help.
"I went to a to a a pulmonologist way back then, and they just told me I had allergy induced asthma," Dan said.
The doctor prescribed an inhaler, and despite using it, the problems persisted. Then came the chronic pneumonia.
What followed was an odyssey of doctors appointments, more medications, and another diagnosis: acid reflux. But despite medications, still no relief.
" I couldn't sleep," Dan remembered. "I'd wake up in the middle of the night and just get up and go walk the neighborhood, settle everything down,."
He suffered four decades of misery, but then things were getting even worse. Dan could barely keep food down. He had to sleep upright, and then an x-ray showed worrisome spots on his lungs.
That's when he found himself at University Hospitals Cleveland Medical Center with an appointment with pulmonologist Dr. Shine Raju.
"He looked at the scans and said he didn't think it was cancer," Dan told us.
But then Raju asked something no other doctor had asked before.
"'Tell me your story,'" Dan says he told him. "'What's going on?'"
Dan ran through his 40-year health history, including trying to explain how his lungs always felt like they were being squeezed at the bottom.
"I think most medical mysteries are truly mysterious when the symptom is common, but the disease is not so common," Raju says.
Dan went through a battery of tests to rule out several diseases, but they all came back with no new answers. Raju had one more: a 24-hour impedance test that measures the amount and type of gastrogastroesophageal reflux in Dan's esophagus.
Finally, an answer.
"It's very difficult to tell someone who has been told for 40 years that he has asthma to tell him now he doesn't have asthma," Raju said.
The diagnosis is even more bizarre. Remember years ago how doctors also diagnosed Dan with acid reflux? Actually Dan has what's known as non-acid reflux. It's an underdiagnosed condition that may be the problem for 30% of people who think they have acid reflux, but the over-the-counter medications never work.
"Acid wasn't his problem; what his problem was the mechanical issue where fluid was being allowed to come up in his esophagus," said Dr. Leena Khaitan, who is the Director of both the Esophageal and Swallowing Center, Digestive Health Institute, University Hospitals and the Metabolic and Bariatric Nutrition Center, UH Cleveland Medical Center. "So you could give him all the medicine you want all day and it wouldn't be effective."
Dan's esophagus didn't have a sphincter at the bottom, so there was nothing blocking anything in his stomach from coming back up. That's what was causing the coughing, the fluid in his lungs, and what led to all the other issues Dan was having.
While they couldn't tell why the sphincter was missing, Raju knew Dan needed surgery, so he sent him to Khaitan. The surgery was done laparoscopically, but when Khaitan got in, she could see why Dan said his lungs felt the way he described — as if they were being held by hands at the bottom.
"We could see a pretty impressive hiatal hernia and more of his stomach was up in his chest," Khaitan said.
Dan's stomach was coming up into his chest and pressing on his lungs because there was a hole in his diaphragm, known as a hiatal hernia. Khaitan fixed the hernia and then used his stomach tissue to build a new sphincter for the esophagus. She was able to close it 75%, which for Dan made a huge difference.
"I feel like a different person; it's been so life-changing for me," Yung says. "I'm not coughing constantly, my lungs aren't all full of fluid all the time, I breathe easier, I can eat whatever I want. I mean, life is just a whole different ballgame for me."
There's a moral to Dan's medical mystery: If your doctor says you have acid reflux or asthma and medications have never worked for at least a year, it's time to see a specialist and ask for a more thorough evaluation.
No one should have to wait four decades for an accurate diagnosis.
