Patient advocacy is at the core of Atrium Health care. This is especially important when patients have disabilities and require creative solutions to health challenges.
Connie Bowling, a 75-year-old deaf patient from Forsyth County, received a left ventricular assist device (LVAD) in March 2024. He became the first Atrium Health patient – and one of only a handful of hearing-impaired patients in the U.S. – to receive an LVAD.
Since the LVAD has not been approved by the FDA for use with deaf patients, only a few individuals in this population have received one. The mechanical heart pump uses loud audio alarms to notify patients of dangers, such as low batteries, low flow or pumping problems. In its standard configuration, a patient who could not hear would miss these important notifications and soon have a health crisis.
Connie’s Advanced Heart Failure and Transplant team at Atrium Health Wake Forest Baptist worked with the hospital’s risk management and legal departments to get permission to implant the LVAD in a deaf patient. Jeffrey Motes, nurse manager for cardiology and vascular services with Wake Forest Baptist, worked tirelessly with a Canadian company to acquire an audio-to-tactile converter that allows Connie to feel the alarms instead of hearing them.
“The LVAD saved my life,” says Connie. “I’m grateful I get to live an extra life – at least five to 10 years. If not for that surgery, I absolutely wouldn’t be here today.”
Follow Connie’s harrowing health journey as he relies on unparalleled support from his medical team and loving family.
Declining health
Connie had his first heart attack more than 20 years ago. For several years, Wake Forest Baptist’s advanced heart failure team provided medical management of his heart condition.
In February 2023, Connie had coronary artery bypass grafting, which was a quadruple bypass procedure. He felt better for several months after the surgery; however, his symptoms gradually returned.
One year after Connie’s quadruple bypass, he entered cardiogenic shock, meaning his whole body was going into organ failure due to the severity of his heart failure. His heart was working so poorly that it caused the rest of his body to start shutting down.
Gabrielle Bowling, Connie’s 24-year-old daughter, explains, “We honestly thought we were going to lose our dad. He was falling frequently and had to be on multiple medical drips (IV infusions). He could barely eat or sleep and had no interest in socializing. His lowest weight was 110 pounds. It was so difficult to watch my dad decline.”
“We told his doctors to do whatever they could to save my dad,” Gabrielle recalls.
In March 2024, Connie was admitted to the hospital for mechanical support to help his heart pump better. Dr. Bartlomiej (Bart) Imielski, cardiothoracic surgeon and professor of surgical sciences at Wake Forest Baptist,implanted a temporary Impella® 5.5 heart pump to stabilize his condition. This pump allows the heart to rest by providing temporary pumping support. This helped Connie for a while but didn’t allow him the freedom to leave the hospital and return home. He needed a long-term solution.
LVAD technology
Dr. Swethika Sundaravel, cardiologist with Wake Forest Baptist, along with Imielski and the heart failure team, encouraged Connie to get an LVAD.
“Dr. Sundaravel supported me all the way,” Connie explains. “She provided several resources to educate us about the procedure. She wanted to ensure we felt comfortable and understood what was involved.”
When patients with heart failure have worsening symptoms, including shortness of breath and fatigue, doctors may recommend implanting a device to assist with heart pumping. These devices help patients enjoy a better quality of life and are sometimes used as a bridge to a heart transplant.
The LVAD is one such implant. This mechanical pump connects to the left ventricle, the heart’s main pumping chamber, and circulates blood and oxygen throughout the body. The LVAD must always be plugged into an external power supply – either two specialized batteries or a wall adapter. The LVAD controller’s audio alarms must be responded to quickly to keep the pump working properly and protect the patient’s health.
Tenacity and persistence
Motes contacted staff at a New York hospital who successfully installed an LVAD device in a deaf patient. They discussed ordering an audio-to-tactile converter from Audiologix (located in Quebec, Canada), an importer and distributor of hearing wellness products. The device is approved to alert deaf patients about events like a baby crying or a doorbell ringing. However, it’s not approved for use with a medical device. The company agreed to sell the device for an off-label application but left it to Motes and his team to figure out how to make it work with the LVAD.
Motes met with Sundaravel, Imielski and Dr. Barbara Pisani, program director of the Advanced Heart Failure and Transplant Program at Wake Forest Baptist,
to develop a treatment plan. This team contacted Atrium Health’s risk management department and explained the proposed procedure for Connie. Once the risk management team approved the plan, Motes brought Imielski to meet with Atrium Health’s legal department. It took approximately two days for the legal experts to approve Connie’s treatment plan.
Motes ordered the audio-to-tactile converter from Canada and had it shipped to Memphis, Tennessee. When customs processed the package, the FDA flagged the device and contacted Motes about its intended use.
“I explained how we received approval from Atrium Health’s risk management and legal teams,” says Motes. “I made it clear that we wanted to take care of our patient and that this is his best option for regaining some independence and returning home to his family.”
It took customs about three weeks to release the device and ship it to Atrium Health. From the day Motes ordered the converter, it took 11 weeks to arrive.
“It took a lot of tenacity and persistence, but we got it done,” Motes says.
Audio-to-tactile converter
The audio-to-tactile device consists of three components – a microphone, a converter and a pager. When the microphone senses an LVAD alarm, the converter sends a signal to the pager, causing it to vibrate. The vibration lets the patient know that the LVAD needs attention. At night, there's a charging base for Connie’s nightstand that the pager clips into. He can plug a small headphone cord into the charging station, which attaches to an iPad on his bed mattress. If an LVAD alarm goes off at night, it will cause Connie’s bed to vibrate.
“It took some ingenuity to get the LVAD and converter to work together,” Motes says. “I had to teach myself how to use the converter before I could teach Connie how to use it.”
Motes has made several adjustments to the device to set the converter to the most accurate auditory sensitivity and octave settings.
“You don’t want it to vibrate when your phone goes off,” explains Motes. “Finding the right octave setting to match the LVAD alarms took lots of trial and error. Even since Connie went home, I’ve been tweaking it and telling his family how to adjust it.”
Connie was anxious to receive the converter and LVAD since this equipment allowed him to go home. Motes kept Connie updated throughout the ordering process. Motes was very proactive in working with the converter distributor and customs to get the device shipped as soon as possible.
Expert collaboration and communication
Atrium Health’s efforts to get the LVAD and audio-to-tactile converter approved for Connie will benefit other deaf patients with heart failure. Motes estimates he could now obtain an audio-to-tactile converter within a week or two.
To help educate other providers, Connie’s care team has shared the information about his treatment on a national message board for ventricular assist device doctors, nurses and advanced practice professionals. The auditory sensitivity and octave settings that Motes has set for Connie’s converter will provide a helpful baseline for other deaf patients in need of the device.
“It took a lot of collaboration and communication to get the treatment Connie needed,” Motes says. “Our team – including doctors, nurses, social workers and financial experts – collaborates seamlessly to provide the best care. Everyone puts the needs of the patient first.”
Ongoing medical support
Connie’s care team provided compassionate support to him and his family. His doctors checked on Connie every day he was in the hospital.
Sundaravel was very encouraging to Connie’s family after his LVAD surgery.
“I broke down in tears,” recalls Gabrielle. “Dr. Sundaravel hugged me and reassured me, making sure I was OK. It was a scary time for me.”
Imielski was also very supportive of the Bowling family, from performing Connie’s first bypass operation to subsequently inserting his Impella and later performing his second open-heart operation for LVAD implantation. He called Gabrielle after the surgery to let her know how her father was doing. At the time, Connie was on multiple IV infusions and required a right ventricular assist device to provide temporary support to the right side of his heart. He worked hard to make a full recovery.
“It’s been a journey, but we’re getting through it,” Gabrielle says. “We can call Atrium Health’s 24/7 Physician's Access Line (PAL®) for help. We’re always kept in the loop no matter what.”
Dedicated family support
Connie’s family has provided unwavering support throughout his health journey.
“Connie’s wife, his three daughters and their families came to the hospital and surprised him with special T-shirts they had made to honor his return home,” says Motes. “Seeing that support reminds you why you worked so hard to help this amazing family. Connie deserves every opportunity for a long, healthy life.”
Connie can no longer drive, so his wife, who is also deaf, drives him to his appointments and the store when needed. Gabrielle lives with her parents full time to help with Connie’s heart equipment and their overall care.
Reuniting with family and adjusting to change
Returning home from the hospital after four months was exciting and overwhelming for Connie. He was thrilled to be reunited with his wife, daughter and their three dogs. Several months after his LVAD surgery, Connie is still getting used to the feeling of the LVAD constantly pumping blood through his body. He compares it to having a washing machine running inside his body.
“I feel pretty good,” Connie says. “But I’ve had to get used to some changes. For example, with the LVAD, I can no longer swim since the device can’t get wet.”
Motes is particularly impressed with Connie’s progress.
“He’s thriving as a patient,” explains Motes. “He can now walk longer distances and enjoy more activities with his wife and children. Whenever the converter vibrates and you see him or his wife light up, it’s like they’re connecting with us. It’s exciting!”
Connie’s family is looking into getting a generator to provide backup LVAD power. They also met with the local fire department to explain Connie’s health status and power needs to keep the LVAD and audio-to-tactile converter operating. The fire department assured them that they would be the first household to get power restored in the event of an outage.
Connie is expecting to start cardiac rehabilitation soon.
From heartbreak to something beautiful
Connie’s health journey led the Bowling family to become part of the Atrium Health family.
“They’re really good people – I think so highly of the whole family,” Motes says. “Working with them has taught me that each patient is a human being first, regardless of their disability. We should treat them as individuals worthy of the highest level of care.”
Reflecting on her dad’s journey makes Gabrielle appreciate how a heartbreaking health crisis can “lead to something beautiful.” Inspired by her experience caring for her dad, she plans to attend nursing school and specialize in cardiac ICU care.
“I want to help people who were sick just like my dad,” Gabrielle explains. “I was really scared during the experience. I’m confident that, with the right support, I can help others overcome anything. I would love to work for Atrium Health someday.”
Connie says, “I wanted to tell my story to encourage deaf patients in the final stages of heart failure not to give up. The LVAD could give them a chance to fight and get through this. I think the surgery is well worth it.”
Learn more about the Advanced Heart Failure and Transplant Program at Atrium Health Wake Forest Baptist.
