I was excited when I found out that I was getting the diaphragm pacer, but I didn’t think it was going to change my life. I was wrong! It has given me back some of the peace of mind and confidence that I lost in my car accident.
When I’m out in public, I feel that I look more normal without the ventilator hooked up to me, or hanging off the back of my wheelchair. I also used to fear popping off in public because of the attention that the loud ventilator alarm would attract. It’s so much easier to go out now, too, since we don’t have bulky ventilator batteries to carry along. The pacer has allowed me to do many things that I never thought I would be able to do again.
I’ve taken several road trips, and have even started taking college classes again – things I wouldn’t have felt comfortable doing while I was on the ventilator. It’s true that the diaphragm pacer doesn’t change the fact that I’m paralyzed, but it really has enhanced my life.
UPDATE AS OF 2025:
My name is Heather, and I was in a car accident in 2003 when I was 19 years old. I broke my neck at the C2 vertebrae, and I was left paralyzed from the neck down and unable to breathe on my own. I relied on a mechanical ventilator to breathe for me for the first three years after my accident. At the end of 2006, I traveled to Cleveland where Dr. Raymond Onders performed the laparoscopic surgery to implant the electrodes on my diaphragm so I could use the diaphragmatic pacer. The surgery went great, and the conditioning process to train my diaphragm muscles was very easy. I was able to work up to full-time pacing in just eight days, and I’ve been using the diaphragm pacer 24/7 ever since.
To say this was a “game-changer” would be an understatement. It’s one of the best things I’ve done for my physical and emotional health since my accident. The ventilator was loud, cumbersome, and required daily maintenance, which was time-consuming for my caregivers. Activities of daily living, like dressing and bathing, became easier without having to work around the vent and the tubing.
Another positive of the diaphragm pacer is that there is no tubing that can become disconnected, which was a fairly frequent occurrence with the ventilator tubing. Tubes becoming disconnected is not an issue with the diaphragm pacer. Yes, the cable to plug in the diaphragm pacer could potentially become disconnected, but it rarely happens. Breathing with the diaphragm pacer feels more natural, it is completely quiet, and it makes going out in public much easier since you don’t have to take a portable ventilator with you. After receiving the diaphragm pacer, I felt more comfortable going out in public since I felt less conspicuous without the noisy ventilator and all the tubes.
In the years since I first received the diaphragm pacer, it has become FDA approved and there are doctors all over the United States and even the world that have been trained to implant the electrodes, making it more accessible to people. I would strongly encourage anyone that uses a ventilator to look into getting the diaphragm pacer. It won’t cure your physical infirmity, but it will make your life easier!
