Wednesday, June 30, 2010

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):

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


Manny_Moo said...

If you are already able to breathe unassisted for periods of time then why the need for a DPS?

Bill Miller said...

I wrote about the benefits I hope to gain from the DPS in Part 1:

Manny_Moo said...

What is your VC when you are off your ventilator?
I ask these questions because I have an ex-pt now a friend who is able to go 40mins now without his ventilator, he can get his VC up to 3.2L! He increses his time off the vent by 5 mins a day under the supervison of his physiotherapist.
Just wondering if this is an option for him in the future....

Bill Miller said...

Does your friend have an SCI? If so, at what level? If he can breathe already for 40 minutes and is increasing his time, he might be able to get off the vent without needing the DPS. If he's a C3 or lower SCI, then he should have access to his diaphragm which will allow him to have spontaneous breathing, which is "normal" breathing. If he's C1 or C2 incomplete, he could also have access to his diaphragm, though if he's C1 or C2 complete, he might need the DPS like me.

Sorry for the delay replying. I don't know what you mean by VC, but maybe Vital Capacity? If so, I don't know what mine is off the vent, but 3.2L is a huge capacity. I receive 13 breaths per minute on the vent at a volume of 0.9L, so 3.2L is quite large -- especially if he's doing it on his own. God bless.

Inspiratii said...

My daughter, D. (7 years old now, C1-C2, vent dependent since the MVA, 3 years ago) had a DPS surgery last year here, in Vancouver, BC. She is now only 2-5 hrs/day on the pacer because she is fighting every time we need to exercise- kids don’t like changes and it seems that the feeling of the air moving in-out is different, maybe not comfortable for her. Truth is, I can’t even imagine what and how she feels :(

What we noticed since the surgery was an improvement in her secretions. I also hope for all improvements that you already mentioned in your previous post. Dr Onders said that people on DPS have less respiratory infections in time. Plus, when in the future we’ll need to travel on the airplane, I imagine it will be easier for D. to do that without the big ventilator.

I have a few questions about the possible trach removal you wrote in part 1, if you don’t mind. Do you happen to know how is possible for a C1-C2 injured person to cough without having a trach to insert the suction catheters? I would be also interested how would it be possible to take baths or showers without a trach (we where told that we cannot use the pacer then)? I was told that during strong colds, even a full time paced person may require to go back for a short time on the ventilator… this means that we'll probably not be able to remove D.'s trach in the near future, but I'm still curios if the other two issues I see can be solved.

I will check your blog for updates about your surgery and other information regarding the pacer.
Best wishes,

Bill Miller said...

Hi Laura,

I don't mind, you can ask any questions. Regarding showers/baths, Synapse Biomedical said they hope to develop some type of safe extension where DPS users can bathe while still pacing. But Dr. Onders probably has the best info on that possibility.

Regarding secretion removal, I haven't been suctioned since I left rehab 3 months after my injury in August 1997. We use a CoughAssist machine exclusively, which I believe is far more comfortable and effective than suctioning, however it is different, and your daughter would likely require an adjustment period. The CoughAssist has a mask attachment which allows "suctioning" to be done over one's mouth and nose, however we CoughAssist via my trach currently. I wrote extensively about the CoughAssist on my website's "Life with an SCI" page here:

I agree with you about air travel, that it will be significantly easier with a DPS and not a vent.

Sorry for the delay replying. God bless!

- Bill :-)

shelley colquitt said...

HEy, my daughter has been paced with the phrenic nerve stimulator since she was 3 she is now 11 and we love love it