Thursday, September 30, 2010

From Vent to Diaphragmatic Pacing System -- Part III

For more on my pursuit of the NeuRx Diaphragm Pacing System (DPS) see Part I and/or Part II.

If you've followed my blog and pursuit of the DPS, you know I wanted to be using it by now.  However, I still don't have a surgery date -- though one could be coming soon.  Allow me to explain...

My pursuit of the DPS is slightly complicated by two things: (1) I take a blood thinner medication to prevent blood clots, and (2) I also wish to have my cardiac pacemaker replaced during the same trip to the operating room.

Neither of those two things are all that complicated, however since I have to come off my blood thinner prior to surgery and get back to a therapeutic level afterward, I only want to have one surgery because having two entirely separate surgeries would essentially double the chance that I could develop a blood clot or get an infection.  I don't believe that my risk for developing a blood clot and/or getting an infection is very high (knock on wood and with the Good Lord's blessing) however, either of which could be fatal for person like me who is quadriplegic, since our immune systems are fairly compromised (and blood clots can be dangerous for people with fantastic immune systems).

I don't have a surgery date yet because my original choice of hospital (Shands at the University of Florida; the hospital affiliated with my alma mater) will not allow me to have both procedures concurrently, and I'm not entirely sure why.  We even asked our state representative to encourage Shands at UF and my insurance company to come to an agreement, but that was to no avail.  I think Shands wants to ensure I'm medically stable on my cardiac pacemaker before doing the DPS, however they did not explicitly state that (plus I believe I'm stable now; my pacemaker battery has been dead for several years, and even when working, it's only designed to kick-in if my heartbeats per minute fall below 60, which I was told almost never happens).

Fortunately, Florida has multiple facilities that are DPS surgery approved, and it appears Orlando Regional Medical Center could be the answer.  I don't want to jinx it, but both surgeons (Dr. Michael Cheatham for the DPS, and Dr. Aurelio Duran for the cardiac pacemaker) are ok with concurrent procedures and recommended that to their pre-registration department.  I'm waiting to hear (hopefully good news) from them soon.  Pending approval, a surgery date may be set soon.

So, like many things in life, this has been lesson in both patience and perseverance -- and I will NOT give up, even if ORMC cannot or will not do the procedures together.  Somehow, we'll get this done -- eventually.  Stay tuned for Part IV...

Bill Miller :-)
C1-2 Quadriplegic with a 221 High Bowling Game
Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
Business website:

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