The Diaphragmatic Pacemaker: Deserve a Better Quality of Life
Alana Spence

Faster than a speeding bullet!  More powerful than a locomotive!  Able to leap tall buildings with a single bound!  Look, up in the sky!  It’s a bird, it’s a plane -- No, it’s... a man in a wheelchair, with a ventilator?  Even Superman has his kryptonite.

“Christopher Reeve said he had been hoping for years to be able to breathe without the aid of a ventilator. He demonstrated for Barbara Walters how he was then able to breathe without his ventilator for hours at a time.” Christopher Reeve is the third person to receive a diaphragmatic pacemaker.  There are only an estimated 500 people, worldwide, who have ever received this device, but what is more important is how many thousands of people need it, but do not yet know about it.

The recently FDA approved diaphragmatic pacemaker provides the best alternative for ventilatory support to people who have little to no function of their lungs, diaphragm, and phrenic nerve. These cases are usually caused by quadriplegia, Multiple Sclerosis, Lou Gehrig’s disease, and Transverse Myelitis, as well as a number of other chronic conditions. This device will allow people to have more freedom, safety, and emotional relief.

I am one of the few people in the world to have a diaphragmatic pacemaker, and it has dramatically changed my life in more ways than I could have ever imagined.  From only being able to go four hours outside of my house with a ventilator; I now have the freedom to be on my pacer all day, every day.

Based on my own experience, I would like to talk to you about a new medical device called the diaphragmatic pacemaker.  I will speak about how and why it works, how it benefits its users, and offer a personal perspective on the significance of this device.

Before we learn about the diaphragmatic pacemaker, you should first understand how the respiratory system works.  Many of you may not know how or why you are breathing, just so long as you’re breathing.  Without breathing, you are dead.  Simple enough, right?  But what exactly is going on in that body of yours that is making you inhale and exhale?   There are three main parts of your respiratory system: the phrenic nerve, the diaphragm, and the lungs.  The phrenic nerve is, in simple terms, a nerve that gives an electric signal from the brain to the diaphragm. It is equivalent to a mailman: if you don’t have a mailman, the letter from grandma will never be delivered to your house.  This electric signal is what allows the diaphragm to contract, and pull air into your lungs.  It is an automatic process, in which you don’t have to tell the brain that you want to breathe.  It simply happens without you knowing it. For those like myself, who cannot breathe by themselves, there is new medical technology that can do that for us -- the diaphragmatic pacemaker.

Diaphragm pacing was developed in Cleveland, Ohio by Dr. Raymond Onders, who surgically implanted my pacer, along with a team of biomedical engineers at Case Western Reserve University Hospital.  According to Dr. Onders, the process involves the placement of tiny electrodes onto the diaphragm through laparoscopic surgery.  The electrodes are then threaded to a small external battery pack (the size of a TV remote control) that signals the diaphragm to contract, pulling air into the lungs.  After a period of conditioning, the diaphragm is strengthened to a point where a person can remain ventilator free 24/7.

According to the article, “History Making Research Technology,” Dr. Jeremy Road, the principle investigator of the research trial, explain that “Mechanically ventilated patients almost always have severe impairments for smell, taste, and speech. With diaphragm pacing, they are able to regain their sense of taste and smell, improve speech and live life with a much higher level of independence.”
 
In an interview with Barbara Walters, Christopher Reeve, who underwent surgery in 2003, stated, “While the experimental surgery hasn’t given me any more privacy, the ‘emotional relief’ it has given me is tremendous.”  Reeve promoted this device when it was unknown to the public and still in the early stages of a clinical trial.

I know first-hand the benefits of having a diaphragmatic pacemaker.  When I was on my ventilator, my freedom was limited.  While I was in my wheelchair, the batteries of the vent only allowed me to leave the house for a maximum of six hours.  The machine was attached to the back of my chair, while the tube was visibly hanging from my neck, drawing attention from the public everywhere that I went. 

When I had the surgery in August 2007, when it was still a clinical trial, my life dramatically changed.  Now I am able to breathe without the aid of my ventilator, and I am able to breathe with my pacemaker for as long as 24 hours a day, while creating minimal distraction to the public.  My parents are much more comfortable leaving the room without having to worry about the ventilator disconnecting.  I find it hard to describe to you exactly how this incredible device has given my family and me emotional relief. 

The average person doesn’t even notice or acknowledge that they’re breathing because it comes so naturally.  To me, not being able to do something as small as taking a breath; it’s devastating.  Having a ventilator pump 12 breaths per minute into my lungs was both uncomfortable and unnatural.  The diaphragmatic pacemaker has given me a life that the ventilator never did.  The insecurities of wearing a ventilator are long past, and I now have a small taste of normalcy.

The pacemaker, while being extremely successful, and becoming FDA approved in May 2008, has very few drawbacks.  For instance, I recently overcame a skin infection from irritation of the wires.  Out of the 500+ patients who have had the surgery, less than a handful of cases have gotten an infection. It is not available for those who have more than 50% control of their diaphragm.  The surgery can only be given to people who have an active phrenic nerve.  Otherwise, the pacemaker will not work.  It is an outpatient surgery, and takes about 30 minutes to implant. However there are a few exceptions.  For instance, people who have sleep apnea, or who are at extreme risk of soon becoming ventilator independent, should contact their doctors to see if they are viable candidates for the surgery.

Take a deep breath.  Now imagine if that was your very last.  It happens to thousands of people every year, and they are put on ventilators to keep them alive.  One day down the road, you might know someone who knows someone that is put in this situation, and you can tell them about a life-changing medical technology called the diaphragmatic pacemaker.  It is an extremely successful practice and the public needs to be made more aware of the technology.  This pacer is the only one of its kind.  Many potential candidates for this operation do not have the privilege of traveling, so with more exposure, more hospitals will practice this surgery, and give more people the opportunity to have this device implanted.  The diaphragmatic pacemaker not only saves lives, it gives people the opportunity for a better quality of life.