At 4 years old, I was a typical little girl doing what little girls love doing — having play dates, dancing around, dressing up in big girl outfits and enjoying the security of my loving family. Then I sustained a C3-4 spinal cord injury in an automobile accident and was unable to breathe without ventilator support.
When I was old enough to go to school, the noisy, cumbersome ventilator made it difficult for me to concentrate, which affected my grades, and I was always tired. I also had multiple bouts of pneumonia and, at age 11, one of these pneumonia incidences landed me in the emergency room. That’s when the on-call pulmonologist asked my family why I wasn’t on a diaphragm pacemaker. We looked at her like she had 100 heads because we, like so many people, had no idea what that was.
When my parents looked into this device and the benefits it could provide, they insisted it would change my life. But I’d already had plenty of surgeries after the car accident and was hesitant to have another one. I finally agreed to have the procedure, and they were right — it has changed my life immensely.
How Diaphragm Pacemakers Work
To understand how the diaphragm pacemaker works, you must know the role of the phrenic nerve. It starts in the neck at C3 through C5 and runs down between the lung and heart to the diaphragm, where it serves as a neurological pathway between the brain and the diaphragm. It is composed of motor, sensory and sympathetic nerve fibers, which allow it to send motor information to the diaphragm and receive sensory information back.
There are several components to a diaphragm pacemaker system: surgical implants, an external battery-operated transmitter and antennas that work on the skin.
The transmitter sends a series of electrical pulses to the antennas, which convert them into radio waves and transmit them to an implanted receiver. The receiver sends the pulses on to the phrenic nerve through a small electrode implanted close to the nerve that causes the diaphragm to contract. The contraction expands the space around the lung, which, in turn, results in inhalation. When the pulses stop, the diaphragm relaxes and exhalation occurs. The repeating of this process is what happens in normal breathing.
Because of the word “pacemaker,” many people think the device affects the heart. It does not. There is also the fear that it might burn out the phrenic nerve or wear out the diaphragm. It does neither. Many will ask if you can pace 24/7, and the answer is yes. I only come off the device when I shower. And many others are concerned with the surgery itself. The minimally-invasive surgical procedure usually involves a one or two-day hospital stay and some even undergo the procedure on an outpatient basis.
It’s important to know that not everyone who uses a ventilator qualifies for a diaphragm pacemaker. The most important criteria are that the candidate has functional lungs and a diaphragm muscle, and an intact or repaired phrenic nerve. There is a qualifying phrenic nerve study conducted by neurologist. During this study, the phrenic nerve is stimulated as it would be by a diaphragm pacemaker, and the response of the diaphragm muscle is observed and recorded. For some prospective users, a fluoroscopy test is performed to check how the diaphragm is moving.
After I got my diaphragm pacer, a whole new world opened up for me. I could now breathe on my own and talk more clearly without running out of breath. At first, I only paced at night. But when I started pacing 24/7, I was better able to focus on my school lessons, and my grades improved. Also, as my oxygen saturation improved, so did my appetite. As my speaking voice became clearer, I was able to communicate better, which improved my social life. I was no longer getting as many respiratory infections and, overall, felt much healthier.
The most important change for me, however, was the independence I gained by not being on the ventilator. All of a sudden, I was able to do many of the things my peers were doing. Yes, I still used a wheelchair, but I no longer worried that I would get tired, my ventilator would lose power or its noise would be disruptive.
I graduated from high school, and then went on to earn an associate’s degree in liberal arts and a bachelor’s degree in advertising. After college, I went on a cruise with my friends and no parents — a testament to my new freedom. We toured the Bahamas and, because I now had a diaphragm pacer, I was able to swim with the dolphins! That’s something I would never have been able to do before the pacer.
Today, I am living a great life. I relocated from the east coast to the west coast, regularly attend shows and concerts, and lead an active social life. I share my experience with others so they, too, can have a better life. I represent Avery, the manufacturer of the pacemaker I use, at medical conferences and speak to doctors and other medical professionals, trying to raise awareness of diaphragm pacemakers and the potential these devices have for so many people.
Thanks to a strong record of safety, with over 2,000 users in 40 countries and proven savings of up to $20,000 per year, according to a study published in Spinal Cord, a peer-reviewed journal, reimbursement is offered by Medicare and most private and government insurance. It has full market approval from the U.S. Food and Drug Administration.
If there was one thing I’d say to anyone with a spinal cord injury regarding diaphragm pacemakers, it’s this: Go for it. This device could change your life for the better. It may help you be more independent, healthier and happier.
Nicole Ficarra is the communications coordinator for Avery Biomedical Devices.