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On the verge of hopelessness, Arthur Williams finds the remedy

Patient Spotlight July 08, 2021 By Main Line Health

Arthur Williams was exhausted all the time. He could barely catch his breath. And it seemed to be worsening by the day. At age 66, the retired SEPTA bus driver and Air Force veteran, who still worked several part-time jobs and had always been active, could barely lift himself out of his chair. He was on the verge of hopelessness.

“I was so tired, and still, I just couldn’t sleep,” recalls Williams. “I tried everything. It got to the point where I didn’t even want to try to sleep, because I was afraid I might not wake up. I started getting things in order, like having my will prepared, in case I didn’t make it.”

Williams had been diagnosed with congestive heart failure in 2018, and a few years prior to that, with sleep apnea―a potentially serious sleep disorder. What Williams did not yet know was the treatment he had originally been prescribed for his sleep apnea―a bedside CPAP (continuous positive airway pressure) machine―could not possibly provide relief in his case.

He spent five months searching for the cause of, and a solution for, his exhaustion. He saw cardiologists, pulmonologists and even allergists at other health systems. His search ultimately brought him to Sheetal Chandhok, MD, a cardiologist and electrophysiologist at Bryn Mawr Hospital, part of Main Line Health’s Lankenau Heart Institute. Dr. Chandhok recommended that Williams’ sleep study―the test used to diagnosis sleep apnea―be repeated. And then came the breakthrough.

The new sleep study showed that while yes, Williams had sleep apnea, he did not have the more common form known as obstructive sleep apnea (OSA). Instead, he had central sleep apnea (CSA). Both forms cause a person to stop breathing involuntarily for brief periods of time during sleep, resulting in fragmented sleep and a disturbed balance of oxygen in the body. But the reasons why are vastly different.

For individuals with OSA, there is a blockage in the back of the throat that prevents air from flowing smoothly during sleep. OSA is treated with a CPAP machine that includes a mask or other device that fits over the nose or the nose and mouth, and connects through a long tube to a small machine that sends a continuous flow of air to keep the airway open.

With central sleep apnea (CSA), the issue is not a blocked airway. Pauses in breathing occur because the brain fails to send appropriate signals to the breathing muscles to stimulate a regular breathing pattern. In other words, this disorder is controlled by the brain as opposed to the throat. An estimated 15 to 20 percent of individuals with sleep apnea have CSA.

“CSA is typically caused by either congestive heart failure or neurological injuries such as stroke,” explains Dr. Chandhok. “Many people with heart failure, like Arthur, also have CSA. Arthur’s symptoms―fatigue, dizziness, lack of energy, fogginess, feeling short-winded―were all a direct result of his CSA, which was preventing him from ever getting a solid night’s sleep. A person cannot function without sleep.”

Until recently, treatment options for CSA simply did not exist. Fortunately for Williams, a breakthrough treatment was recently approved by the FDA for moderate to severe CSA, and Dr. Chandhok was the first in Pennsylvania to implant the device at Bryn Mawr Hospital.

The remedē® System (pronounced “remedy”) is an implantable device that monitors and stabilizes an individual’s breathing pattern throughout the night to eliminate apnea and restore sleep. It works by stimulating a nerve in the chest―the phrenic nerve—to send signals to the diaphragm, the large muscle that controls breathing. These signals stimulate breathing in the same way the brain would.

The device is implanted under the skin below the right shoulder. It contains two small thin wires―one to stimulate the nerve and one to sense breathing. The procedure is performed by a cardiologist using a minimally invasive approach, similar to the approach used to implant a pacemaker, but on the opposite side of the chest. It typically requires an overnight stay in the hospital.

Once the chest heals from the procedure and the wires are stable―approximately a four-week process―the patient returns to the cardiologist’s office for the device to be activated. Magnets enable the cardiologist to finetune the device for each patient.

Clinical studies show that patients receiving the remedē System experienced a 91 percent reduction in the number of sleep apnea events per hour. Eighty-two percent of patients reported an improved quality of life.

“I had talked to so many doctors who said they couldn’t help,” says Williams. “I finally found the one who said, ‘yes, we can fix that.’ Dr. Chandhok gave me hope. I told him, let’s get this done as soon as possible.”

Dr. Chandhok performed Williams’ procedure on September 14, 2020. It was a resounding success.

“This device is truly remarkable,” says Matthew B. Hillis, MD, an electrophysiologist at Bryn Mawr Hospital who is also trained in the remedē System. Main Line Health is among only four health systems across Pennsylvania currently offering this breakthrough treatment.

“Sleep apnea is a common disorder, especially in patients with heart disease,” explains Dr. Hillis. “Unfortunately, it often goes unrecognized, particularly in the case of central sleep apnea. We now have a safe and effective solution, but it’s still new, and many physicians and patients are not yet aware it exists. We want patients struggling with this debilitating condition to know that help is here.”

For patients receiving this treatment, the change can be felt almost immediately following device activation.

“My, my, my, what a tremendous difference,” says Williams, who is elated to once again enjoy work, his many hobbies, and time with his wife and two sons. “Everything changed. I am actually able to go to sleep. When I sleep, I sleep good. If I stop breathing in my sleep, the device kicks in and allows me to breathe. My energy is back. I feel like a brand-new person.”

Williams is now followed by his sleep doctor. Data from his remedē System is retrieved regularly to ensure the device is working well, and to determine when the battery will need to be replaced―typically in five-year intervals. Dr. Chandhok calls him now and then just to check in.

“My report is always the same,” says Williams. “I tell him, I’ve never felt better. I’m doing great!”

To learn if you are a candidate for the remedē System for moderate to severe CSA, schedule a consultation with an electrophysiologist at Bryn Mawr Hospital by visiting mainlinehealth.org/heart.