Results of My Surgeries: Healthy but No DPS

For more on my surgeries, see this this blog entry.

Ultimately our trip for my surgeries was successful, though not as successful as hoped.

The primary successes from my surgeries were: replacing my cardiac pacemaker, getting x-rays of my chest and neck (that I was given to view on CD) and having actual outpatient surgery for my procedures (no overnight stay required, which limited my chances for infection; I just had my three-weeks post-surgery follow-up appointments, and I've healed well with no infections -- thank you God!).

Missing from that success list is implementation of the Diaphragm Pacing System (DPS).  Even when inside my chest, with the electrodes placed on my diaphragm, my diaphragm wouldn't fire when stimulated by the DPS.  My surgeon, Dr. Michael Cheatham, tried everything -- even calling DPS inventor Dr. Raymond Onders (who trained Dr. Cheatham to do the DPS) for additional suggestions.  It wasn't meant to be.

No worries.

Though I could have received several benefits from the DPS, I stand by my statement that I already have a high quality of life and I'm not limited by the vent in the most important ways: speech quality and infections.

For a quadriplegic like me, my ability to talk well is of extreme importance.  And if you've heard me talk in person or via phone, I think you'll agree that I speak well and typically clearly, at an appropriate volume (when well hydrated) and with little pause between breaths (thanks to a speaking valve, and due to the ability to initiate another breath sooner than programmed and also receiving fairly large breaths).  With the DPS, I was concerned about matching that quality because breaths cannot be initiated with the DPS and the size of breath is smaller than what I receive via vent (quite possibly 30% smaller for me).  That could have been mitigated by increasing my breath rate on the DPS, but only doing it could answer that question.

Also, my lack of significant respiratory infections for a vent user is fairly uncommon, and is represented by zero respiratory-related hospitalizations in the 13.5 years since I was discharged from my initial hospitalizations and rehab (knock on wood and thank you God).  I'm certainly not saying that my number of infections would have increased on the DPS (it could have, because I'm breathing through 3 filters on the vent, and would have one filter at most on the DPS) but it's hard to beat zero in 13.5 years.

I'm not trying to disparage the DPS; I have two friends in particular who are benefiting significantly from the DPS, and I wanted to try it and potentially benefit from it.  But I don't want anyone reading this to think that life with a ventilator is a necessarily bad.

If my diaphragm would have fired when stimulated by the DPS, I would've continued to embrace the challenge of becoming a successful DPS user.  But that is/was a very significant challenge (especially when considering everything altogether) that included learning and teaching my caregivers different ways of providing for my needs (for example, it would've placed a port on my stomach where the DPS connected that would've required care, and careful bathing around, etc).  Point being, I think that we (as a team) are already good at life with a ventilator, and largely see it as not that big of a deal.

If interested, I could expand on a lot of these points and others.

No worries and God bless!

Bill Miller :-)
C1-2 Quadriplegic with a 221 High Bowling Game
Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
My blog: http://powerwheelchairusers.blogspot.com
Business website: http://www.ikanbowler.com
Personal website: http://www.lookmomnohands.net

Finally a Surgery Date!

Barring something unfortunate, I should have my two outpatient surgeries on February 2nd, 2011, at Orlando Regional Medical Center.  In one trip to the operating room (for me) I'll have my cardiac pacemaker replaced and also the Diaphragm Pacing System (DPS) installed.

For more on my DPS pursuit and surgeries, see this blog entry:

http://powerwheelchairusers.blogspot.com/2010/11/from-vent-to-diaphragmatic-pacing.html

I plan to write a comprehensive post-surgery evaluation of the DPS and my experiences probably in late March, after I've had some adjustment time.

Thanks and God bless!

Bill Miller :-)

C1-2 Quadriplegic with a 221 High Bowling Game

Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT

My blog: http://powerwheelchairusers.blogspot.com

Business website: http://www.ikanbowler.com

Personal website: http://www.lookmomnohands.net

From Vent to Diaphragmatic Pacing System -- Part IV

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

I've been approved for concurrent surgeries (i.e. one trip to the operating room for me) -- and met the two doctors who will perform them!  I also learned more about what the surgeons will actually do.

First, Dr. Duran will replace my cardiac pacemaker.  Second, Dr. Cheatham will install the DPS.  Then Dr. Duran will return, and they will ensure there's no interference between the two devices (no previous patient has had interference).  Both doctors will try to set the respective devices optimally for me (they can adjust the stimulus strength, frequency, etc).

Also, we're going to try doing it as true outpatient, i.e. have surgery early in the morning, and (hopefully) be discharged that afternoon.  That's BIG, because it should help limit my chance of acquiring an infection, and the schedules for my caregivers and me will require little altering.  My home health agency will help get my blood back to a therapeutic level.

We're trying to setup surgery for January or February (2011) -- stay tuned!

Bill Miller :-)

C1-2 Quadriplegic with a 221 High Bowling Game

Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT

My blog: http://powerwheelchairusers.blogspot.com

Business website: http://www.ikanbowler.com

Personal website: http://www.lookmomnohands.net

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

My blog: http://powerwheelchairusers.blogspot.com

Business website: http://www.ikanbowler.com

Personal website: http://www.lookmomnohands.net

From Vent to Diaphragmatic Pacing System -- Part II

In Part I, I explained why I changed my mind about becoming a Diaphragm Pacing System (DPS) user. Link to Part I . . .

After deciding that I want to become a DPS user, I took the next steps of contacting and meeting the surgeon to discuss my candidacy, obtaining necessary medical evaluations, and gaining insurance approval.

I met with Lawrence Lottenberg, MD, FACS, who performs surgery at Shands Hospital at the University of Florida in Gainesville. He thinks I'm a good candidate since I'm relatively young, healthy, and quite motivated. Because I'm on a blood thinner, Dr. Lottenberg said I'll need to be hospitalized for at least two nights: one night preceding surgery to thicken my blood, and one night after surgery to thin my blood back to a “therapeutic” level to prevent blood clots.

I needed to have my heart pacemaker and my phrenic nerve evaluated. My heart pacemaker has a dead battery and will be replaced with a completely new pacemaker. It's a demand pacemaker that only kicks-in if my heart rate falls below 60 beats per minute, which almost never happens. Consequently, there was some debate about whether I need the pacemaker, but since there’s no interaction between the DPS and the pacemaker, why not have it as backup? 

So I will have the pacemaker replaced by a cardiologist when I have the DPS surgery. The cardiologists said that it may take three days following surgery to get my blood back to therapeutic, so I'll probably spend three to five days in the hospital.

The phrenic nerve is the body’s natural way of stimulating the diaphragm for breathing.  A successful phrenic nerve test helps secure insurance approval for the DPS surgery.  But Dr. Lottenberg confirmed that the diaphragm’s ability to be stimulated cannot truly be assessed until the surgeon gets inside, and that the phrenic nerve test often yields false negatives. It can yield a positive, which indicates that my diaphragm is capable of being stimulated, but a negative test doesn’t eliminate the possibility for success with the DPS.

I had an appointment with a neurologist to test my phrenic nerve, but when he found out I had a heart pacemaker, he was not comfortable doing the test. Even though my pacemaker's battery is dead, he said, I still have leads going to my heart and he was concerned about stimulating my phrenic nerve under those circumstances.

After reporting that to Dr. Lottenberg and Dr. Raymond Onders, who pioneered the DPS, Dr. Onders said the neurologist could try stimulating my phrenic nerve only on my right side, to avoid possible interaction with the pacemaker. But that became a moot point when I learned that my insurance company "has now passed protocol for the DPS, thus no prior authorization is needed." That statement was told to Dr. Lottenberg's assistant by the hospital's financial group, and I’m waiting to get written clarification. My understanding is that the surgery will cost more than $20,000, and I don't want the hospital coming after me if my insurance doesn't pay for some reason.

Another insurance issue was trying to get my insurance company to state in writing that my level of nursing coverage would not be decreased when I become a DPS user. Currently I receive 44 hours per week of nursing coverage, and my family covers the remaining 124 hours. For them to cover more would be quite difficult.

I wrote to my insurance company to explain that even as a full-time DPS user, I would still be dependent on a mechanical device to help me breathe, and the rest of my care would essentially remain unchanged. However, the insurance company replied that a "clinical review" would be necessary to determine the level of care I need after I get the DPS.

I wasn't pleased with that reply until I spoke with a Florida friend who has the same insurance company and has been a DPS user for over five years. He told me that he receives 16 hours per day, 7 days per week, of nursing coverage, for a total of 112 hours. He also knows another DPS user with the same level of care and same insurance. Now I'm not concerned about a clinical review and we might even be able to increase my nursing coverage. (For anyone who might have the same concern, Dr. Onders said that no DPS user has had his/her level of insurance coverage decreased, and it shouldn't be an issue for anyone.)

I don't have a surgery date yet, and due to some caregiver circumstances, it now appears my surgery will have to wait until September, or even October.  No worries -- it will happen when it's meant to be.  Stay tuned for Part III about the surgery.

A PDF file of IVUN's newsletter is below; I'm on page 4 with a nearly identical version of what's written above (except for my probable surgery date / time frame; above is more accurate):

http://www.lookmomnohands.net/objects/IVUN-val2010-v24-3NpAll.pdf
 
God bless!

 
Bill Miller :-)

C1-2 Quadriplegic with a 221 High Bowling Game

Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT

My blog: http://powerwheelchairusers.blogspot.com

Business website: http://www.ikanbowler.com

Personal website: http://www.lookmomnohands.net

From Vent to Diaphragmatic Pacing System -- Part 1

I, Bill Miller, am paralyzed from the neck down and ventilator dependent due to a high-level spinal cord injury (SCI) that I incurred in August of 1997.  Though I learned of Synapse Biomedical's NeuRx Diaphragm Pacing System (DPS) several years ago, I didn't feel like it could do much to improve my quality of life.  I actually thought it would decrease my quality of life, primarily because the DPS doesn't allow the user to initiate breaths.  Why is that important?

My voice is my primary tool to the world, so the better my speech, the better my quality of life.  Using a Passy-Muir (Speaking) Valve (PMV), I have nearly continuous speech while receiving 13 breaths per minute (BPM) at a volume of 900 cc (just less than half of a two liter soda bottle).  However, sometimes I do "run out" of air to speak with, before I finish my thought.  Fortunately, there are a couple of ventilator settings that enable me to initiate another breath, with just a slight "shrug" of my shoulders (I use my neck muscles to pull my chin down and chest up a little; that’s also how I can breathe when disconnected from the ventilator).

Initiating a breath enables me to shorten the pause in between "scheduled" breaths and continue speaking.  The DPS doesn't allow users to initiate breaths, hence my initial thought that it would decrease my speaking ability and thus my quality of life.  But there's a simple fix: just increase the breath rate.

I'm told that my volume when stimulated to breathe by the DPS should be around 800 cc, so with 14 or maybe 15 BPM, my guess is I won't need to initiate any breaths.  That's what I suspect I'll want during the day when I'm speaking, and I can decrease the BPM for sleeping.

I was also leery about only having battery power for the DPS.  It's comforting to know I have unlimited vent time when plugged-in to a standard outlet, but to also know I have batteries for my vent that give me roughly 12-14 hours on a full charge, and charge simply by being plugged-in.  But I have a friend who has used the DPS essentially 24/7 for over five years, and he hasn't had any issues with the batteries.

With those issues "solved" in my mind, I began to think how I could benefit from the DPS. 

* * * * *

I've heard DPS users' senses of smell and taste both improve, though I cannot imagine certain foods tasting any better than they do now (I enjoy eating:).  And I can smell fairly well when I actively try to take air in through my nose (and selective smelling can be a good thing!:).  So those are minimal benefits for me personally, but here are several that are not.

The biggest benefit I hope to gain from the DPS is being comfortable enough with it to remove the ventilator and vent tray from my wheelchair.  Actually, I'm in need of a new chair (this is my original chair, which is over 12 years old) and I would like to get a chair that can stand me up, so that I can both view the world from my natural height, and bear my weight much more frequently than I do now.  Bearing weight is highly beneficial for one's bones and entire body, I'm told.  Plus, I do speaking engagements, and plan to teach at the community college level upon completing my master's degree -- and how cool would it be for a quadriplegic to be able to stand up when speaking?

Not having a ventilator on my chair would also enable me to maneuver in tight spaces more easily.  And I could drive my wheelchair while standing -- I'd love to roll upright across the stage when I graduate (I rolled seated across the stage for my bachelor's degree, which can be seen on my website HERE).

The DPS would definitely improve my speech quality in bed, because it would be like using a speaking valve all the time.  (The PMV is a fantastic little one-way valve that enables one to take in air easily through one's trach, but seals off in the exhale direction, thus enabling the user to have air around his/her vocal cords even when the vent isn't giving a breath, which allows for more continuous speech.)  I don't currently use a speaking valve in bed because the valve tends to dry out my airway, so in bed, I re-humidify my airway.

Another benefit would be that the DPS should allow me to either cap my trach or use a small speaking valve, either of which would make getting dressed a bit easier, and also would make wearing certain clothes MUCH easier.  Right now, with the vent circuit attached to my trach, it protrudes about 1.5 to 2 inches, which makes wearing some dress shirts or a tie quite difficult.

I could also potentially wear a turtleneck or mock-turtleneck, which I cannot currently do (because they put pressure on my trach and stoma), and they could hide my trach altogether.  I'm not self-conscious about my trach or general appearance, but that would obscure a sign of my disability, which would be good because I try to not let my disability define what I can do -- despite being paralyzed from my neck down, I still feel like I have the ability to accomplish quite a bit (I thank the Good Lord for blessing me with good support systems).

Some DPS users have even had their trachs removed entirely.  Even if I'm able to build up to 24/7 DPS use, it would take me a while to even consider having my trach removed.  That's a big step -- that maybe I'll get to consider in six months or a year.  That said, my on-vent quality of life is high (many thanks to a CoughAssist machine, which you can read about on my website HERE) so I won't be too disappointed if I'm not able to use the DPS.  No worries!

This is the first of (hopefully) five entries I've been asked to submit for the International Ventilator User's Network (IVUN).  If all goes well with my efforts to become a DPS user, then here are the proposed entries: Column 1 (April 2010) Why I'm seeking a DPS; Column 2 (June 2010) Candidate screening / pre-surgery requirements; Column 3 (August 2010) DPS surgery; Column 4 (October 2010) Post surgery use; Column 5 (in 2011) Extended use.  IVUN's website is www.ventusers.org.

A PDF file of IVUN's newsletter is below; I'm on page 5 with a nicely edited version of what I wrote above:

http://www.lookmomnohands.net/objects/IVUN-val2010-24-2Nsec.pdf

Bill Miller :-)
C1-2 Quadriplegic with a 221 High Bowling Game
Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
My blog: http://powerwheelchairusers.blogspot.com
Business website: http://www.ikanbowler.com
Personal website: http://www.lookmomnohands.net