When patients are diagnosed with rare or unusual health conditions, understanding what to do next or where to find care can be daunting. For Diane Wein, a globe-trotting married mother of one, it took a team of doctors at National Jewish Health to get her back on her feet.
In June 2019, Wein found herself feeling more drained than usual from her travels for work. “I had a heaviness of breath. I wasn’t able to finish sentences by the end of the day, my voice would just run out,” she explained.
After months of weariness, heart pain and misdiagnoses for allergies and pneumonia, Wein got an MRI. The MRI revealed that she had a rare condition called sarcoidosis.
Sarcoidosis is an inflammatory disease that can affect any organ in the body, but most commonly affects the lungs. People with sarcoidosis have abnormal masses called granulomas that can cause the organ to change or stop working right. Though it can be treated, there is no known cure.
“I was researching how to address sarcoidosis when a friend recommended, I go to National Jewish Health,” she explained. National Jewish Health is one of a few facilities in the world named a Sarcoidosis Center of Excellence by the World Association for Sarcoidosis and Other Granulomatous Diseases (WASOG). The hospital’s comprehensive sarcoidosis program has a team of specialists that treats thousands of patients each year. As a nationally respected research organization, too, patients have access to the latest sarcoidosis clinical trials and most effective treatments.
At her first appointment at National Jewish Health, Wein met with Shu-Yi Liao, MD, a pulmonologist who specializes in sarcoidosis. A PET Scan and MRI confirmed that Wein had sarcoidosis of the lungs, but also revealed she had sarcoidosis of the heart. “Diane was on medications for her lungs, but she needed further treatment for her heart,” Dr. Liao explained. So, Dr. Liao called upon Cardiologist Howard Weinberger, MD, and Electrophysiologist Raphael Sung, MD, FAAC, FHRS, to evaluate Wein’s need for her cardiac sarcoidosis.
A Close Look at the Heart
Dr. Sung recommended Wein undergo an electrophysiological (EP) study to look at the electrical activity in her heart. The results found evidence of inflammation, which can be a precursor to other problems. So, Dr. Sung implanted a cardiac monitor into Wein’s chest to allow her doctors to monitor heart functions.
Medications helped manage her symptoms, but results from the heart monitor showed there were other factors playing into her symptoms of fatigue, chest pains and breathlessness.
The Connection Between Systems
Patients with cardiac sarcoidosis often have other underlying conditions that contribute to the disease. In Wein’s case, she also had gastroesophageal reflux disease (GERD) and sleep apnea. To help control these two conditions, a combination of treatments was added to her therapy plan.
Today, Wein’s symptoms are under control thanks to the coordinated care she received from her National Jewish Health care givers.
“The providers at National Jewish Health are problem solvers, not symptom solvers,” she stated. “They’re not willing to stop after fixing one problem, they look at the whole patient.”