FAQs: My Diaphragm Pacer

When I was in my car accident, I broke my neck at the second cervical vertebrae, so the break was very close to the top of my spinal column. This meant that I lost control of all of the muscles from my neck down, including the diaphragm muscle in the abdomen that is used to breathe. So after my accident I was put on a ventilator—a machine that is hooked up to a person's tracheostomy tube (trach) and pumps a breath of air into the person's lungs a certain number of times a minute (approximately 12 to 14).

I was on a ventilator for the first three years after my accident, and I actually never thought I would ever get off of the ventilator. After my accident I heard about Christopher Reeve getting a diaphragm pacer and I knew that I'd like to get one, although I didn't think it would ever be a real possibility for me since they seemed so few and far between. However, I decided to ask my doctor about it anyway to see what she knew about them. She didn't know much, but she did manage to track down the name of the doctor who performs the surgery to implant the diaphragm pacer electrodes on the diaphragm. She called him to inquire about the diaphragm pacer on my behalf.

[A little background history on the diaphragm pacer: The technology of diaphragm pacing has actually been around since the 1970's, but at that time electrodes were placed on the frenic nerve. In 2000, Dr. Raymond Onders developed a method of laparoscopically implanting the electrodes used for pacing on the diaphragm itself, instead placing them on the frenic nerve. Dr. Onders' laparoscopic method of implanting on the actual diaphragm was much less invasive, and had other benefits, too, but don't ask me to explain them, because I'm no doctor!]

When I first inquired about the diaphragm pacer back in 2006, Dr. Onders was the only doctor in the world who performed the surgery. He practices medicine in Cleveland, Ohio, so after finding out that he was so far away from me (near St. Louis, MO), I pretty much gave up any hope of ever having this procedure myself since I really wasn't in any position to travel hundreds of miles to Cleveland.

About a week or so after I asked my doctor about the diaphragm pacer, my mom got a phone call from Dr. Onders. I thought it was impressive that Dr. Onders took time out of his busy schedule to answer all of my mom's questions—like what the diaphragm pacer was, how it worked and if I might be a candidate for one—and talk to her for over an hour. Everything sounded so promising, so we didn't have to think about it too long before deciding that we were going to do it! I knew it would involve a long road trip to Cleveland (10 hours one way), which was daunting since at that time we'd never attempted taking a road trip since my accident. However, getting a diaphragm pacer was too good of an opportunity to pass up, so we started formulating a game plan of how to make all of the logistics of travel and staying in hotels work. Just two months later we set off on our way to Cleveland. (My mom went with me, of course, as well as my youngest sister, Chandra. We knew that we would need another adult to go with us, so we called my older sister, Annette. She didn't have any children at that time, so she was able to come with us without having to leave a bunch of young kids behind, like my other older sisters.) 

I had the surgery to implant the electrodes on my diaphragm on November 17, 2006—the third anniversary of my accident. (I thought it was really cool that I was able to have the surgery done on the anniversary of my accident—what a wonderful way to celebrate my anniversary!) My mom, sisters and I were taught about the pacer and how I had to slowly condition my diaphragm muscle to be able to withstand pacing for long periods of time. (The diaphragm is a muscle, so it needed to be strengthened and gotten back into "shape" since I hadn't used it in three years.) The training process is kind of difficult to explain, so to make this long story shorter, I'll just say that everything was extremely successful, and I went from being 100% dependent on the ventilator, to transferring over to the diaphragm pacer 100% of the time in eight days. That was a record for the female patients at the time. I'm not sure if that record still stands, though.

People often ask if I have to go back on a ventilator at night, and the answer is no. I'm on the pacer 100% of the time and have been ever since I transitioned over to the pacer. (With the exception of one time when I was hospitalized due to complications that I experienced after having surgery to remove kidney stones, but that was just for a week while I regained my strength.) People have also asked if I can breathe without my diaphragm pacer (or ventilator) and the answer to that is also no. I am unable to breathe on my own, and am completely dependent on either a ventilator or the diaphragm pacer to breathe for me.

I've become much more adventurous since getting the diaphragm pacer. I wasn't very motivated to leave the house after my accident. I was happy and content to stay at home, since that was the place I felt the most comfortable. I didn't like going out in public unless it was absolutely necessary because I felt awkward out in public. I went to church every week and to doctor's appointments and occasionally to the store, but I really just preferred to stay at home.

After my accident I vowed that I would never go to Wal-Mart or the mall again. To me, that would've been the epitome of torture! I hated having all eyes on me, feeling like I was in the way of others as I tried to maneuver around tight, overcrowded aisles, all in addition to the thought that I might run into someone I knew before my accident. But over time I slowly started to venture out again and try new things. I was especially nervous the first few times I actually ate in restaurants or rolled through the mall and things like that. However, things got better as I went out more. I'm sure I would've gotten to the place of being more adventurous eventually, but getting off of the ventilator was definitely the catalyst. I just felt more normal-looking and confident, since there were no longer tubes going across my body that attached to the trach in the center of my throat, and no more ventilator to lug around, either. I know that I will obviously never look physically normal again, but ditching the noisy, conspicuous vent/tubes really did do wonders for my confidence, and it opened doors that I'd chosen to close.

I mentioned earlier that Christopher Reeve had a diaphragm pacer and that's where I first heard about it. Christopher was the third patient that Dr. Onders did this laparoscopic electrode implantation procedure on, and I was the 42nd. It was not FDA approved at the time I got it done, and I was actually part of the FDA study. Back in 2006, Dr. Onders was the only surgeon in the world who performed this surgery. After the diaphragm pacer became FDA approved more and more surgeons started doing this procedure, and now there are lots of surgeons that perform this procedure in dozens and dozens of hospitals/facilities all across the world. I'm happy that word of the diaphragm pacer is spreading so that more people like me can benefit from it and have a healthier, better quality of life.

The diaphragm pacer is made by Synapse Biomedical; visit their website to find out more information.