Madonna Rehabilitation Hospital helps Woman fight ALS with Diaphragm Pacer

On January 31, 2013, Kelli Johnsen became the first person with ALS to have a NeuRx DPS™ implanted in Nebraska.

The device, implanted during a minimally invasive surgery, will help Kelli breathe easier by conditioning her diaphragm muscle through electrical stimulation.

As many as 3,400 individuals with ALS, also known as “Lou Gehrig’s Disease,” develop a condition called chronic hypoventilation and require ventilator support every year. On Sept. 28, 2011, the U.S. Food and Drug Administration approved the NeuRx DPS™ to help people with ALS and chronic hypoventilation breathe easier, live longer and delay the use of a ventilator. Eighty-six individuals participated in the DPS™ clinical trial and more than 100 have since received the device.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, eventually weakening all of the major breathing muscles.  Patients in the later stages of the disease may become totally paralyzed and ventilator dependent.

Madonna Rehabilitation Hospital has facilitated all five of the DPS™ implantations in Nebraska since 2009. First approved by the FDA for individuals with high-level spinal cord injuries, the device has been shown to effectively treat other conditions involving central hypoventilation, such as ALS.

Kelli, a 42 year old veterinary assistant from Emporia, Kansas, was diagnosed with ALS in 2008, and has participated in several drug trials hoping for a cure for this devastating disease.  While searching the Internet, Kelli found information on Madonna Rehabilitation Hospital’s website about this ground-breaking technology.

Rebecca Wills MA, BA, CRT-NPS, pulmonary program manager at Madonna, collaborated with colleagues at Saint Elizabeth Regional Medical Center, Dr. Greg Fitzke with Surgical Associates and the University of Kansas Hospital and ALS Clinic to ensure a successful procedure for Kelli.  Dr. April McVey of KU Med Center performed the FDA required diaphragm and pulmonary function testing.

Madonna Rehabilitation Hospital is among a handful of institutions nationwide, and the only Nebraska rehabilitation hospital, that facilitates the DPS™ implantation and provides post-operative rehabilitation when indicated.

"This is a life-changing device for many individuals. We are so pleased to have great local partners who share our commitment to bringing the most advanced options to help our patients," said Wills.

Dr. Fitzke commented, "We are excited to provide this fantastic technology to all patients in need in our service area. Any time we can improve the quality of life for our patients, it is fulfilling and very rewarding."

According to Wills, Kelli is using the diaphragm pacer daily and has not had any complications since returning to Kansas. Kelli will receive follow-up care with KU Medical Center and their ALS clinic.

"I hope the DPS will help me live long enough to see additional advances in the treatment of ALS. I believe it can be beat,” Kelli said. “I’ve decided to live my life living instead of living my life dying.”

For more information about the DPS device and other options for individuals with ALS or SCI, visit www.madonna.org.