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From: wblalok on 1 Apr 2008 20:35
I am a long long time lurker and post once in a while when something
strikes at what I know about or have a question etc.

I am going to ask the questions first then tell the lond story of the
>7 years and 4 events which make me wonder what is broken and what can
be done to fix it.

My goal is to start a discussion among adults.

This news group isnt as much a magnet for children masquerading as
adults as other news groups I follow, but if you cant act your age,
please do all of us a favor and take your immaturity elsewhere.

*********
My questions:

1) Are "we" so confused by "all that medical mumbo jumbo" that we
allow insurance companies and/or DMEs to get away with providing us
(x) when (y) was prescribed?

2) Are the insurance companies and/or DME's afraid of of something for
good reason? I.E. do they know something we dont, and they arent
telling?

3) Is it the sleep centers/clinics/etc. putting pressure on
insurance/dme?

4) Why do techs in ANY field feel the need to "know the one truth"
despite evidence to the contrary?

5) Why does our medical system go to such lengths to keep people from
getting proper treatment?

6) Is it possible that we have handed part of our medical treatment to
people who are little more than the "customer service" workers one
gets when calling a large corporation? (quotes are ment as a dig
against the companies who choose to answer their phones with scripts
rather than knowlege NOT to the employees of those corporations, I
have been one and may yet be one again)

********
The 4 stories:

1) My first prescription (May 2001) was written for an auto-pap, by
the sleep center owned by my insurance company, and of course when I
went to pick up the machine from the same company (Intermountain
Health Care / IHC if it matters any, and that rant is for another
venue and time) they provided a factory refurbished CPAP machine which
I had to rent from them for an amount which would have paid a new
machine off in four months. "most people are not compliant so we wont
buy a new machine until your first follow up when the data is read and
you are compliant..."

That makes sense so I go along and am fully compliant at my 6 month
follow up, they did promise to credit my rent toward the new machine
etc.

Instead of providing a new machine they simply stop charging me rent
on my refurbished machine, write me a reimbersement check for the
amount they would have paid for a new machine, a refund check for 2
months rent, and send me on my way.

not quite enough to wrinkle my forehead yet...

2) I change health care providers due to a change in employment (July
2001), I am still with the same insurance company, but instead of
"open clinic" I now get to pick my Drs which I gladly do. I do
however choose the same PCP because he takes both IHC plans.

The machine suddenly starts making noise like a freight train running
through tin outhouses in December 2001 (literally days after my 6
month follow up).

I call my new sleep Dr next morning, he gets me a loaner which despite
being used as a loaner for some time once again provides sound sleep.
He has me do another sleep study and provides a prescription for the
auto-pap again.

IHC (still my insurance company) tells me that I can not get durable
goods from anyone but them... and they hand me the same deal as above.
EXACTLY the same deal, rent for 6 months and all!

I tell them to jump in a very cold lake and purchase the prescribed
machine out of pocket.

I figure it is just IHC broken at this point in time. (You gotta love
the company who is insurance, doctor, clinic, lab, and DME)

....
years have passed, no trouble, I take the new sleep dr a data dump
from the APAP every 6 months and take the machine in "every couple of
years" to make sure it is working correctly etc. Both office visits as
far as billing goes. If he sees anything in the data that concerns
him I am scheduled for a sleep test.

I have had one sleep study in 7 years.

3) I became self employed January 2008, and changed insurance all
together... (and that rant doesnt really belong here)

Last month MArch 2008) I started noticing some issues sleeping well. I
also started to get fatigued and loopy as originally and scheduled an
appointment with the local private sleep center recommended by my PCP
(yes the same one still, though he is moving and I have been moved to
one of his friends and school mates... I love the guy, but I gotta say
his friend is even better.

My Dr calls the sleep Dr, everything is explained "he has the software
to do the dump, he is compliant, he has been taking his results to his
previous sleep Dr, etc."

The sleep Dr tells me to bring my printouts and the machine to my
appointment.

Understandably it astonished the staff that I had the software to read
the data from the machine but they got over it rapidly since even they
sell the software though their sales are LOW on a good day.

What they didnt get over is the fact that the APAP adjusts to meet my
needs, they to a person claimed to have never heard of anything like
that and had no idea how to test it (its a respironics REMstar-auto
and the data exchange is exactly the same smart card as the visually
identical machine they had sitting on the shelf minus one word in the
silver lettering "auto")

I leave my machine in their hands while I visit with the dr so they
can test it (its been a couple of years almost to the day)... I have
no idea if they did anything but test the pressure display since that
is the only thing they reported back to us in the exam room. The Dr
is a little confused that he doesnt have his usual reports for my
machine, but they were in the middle of changing from daytime staff to
the sleep study staff... we both figured that was the reason for the
abreviated report.

The Dr decides I need a different interface so I go into the sleep lab
section of the building (down the same hall as the exam rooms but
opposite side of the hall all along... where the staff is just coming
in).

The tech in the sleep lab has not only never heard of APAP but flatly
denied such a thing would be possible, AS THE DR. COMES OUT OF AN EXAM
ROOM and hears most of our conversation, he comes over "APAP is about
60% of what I prescribe! what do you mean it isnt possible?".

The tech gets "that look" on his face gathers up another tech "go up
to the booth" (<pause> I like her voice over the intercom... she
should be getting paid for her voice not for watching people sleep
</pause>)...

The tech decides that even though the software reads my smart-card
that the "study interface" may be different so even though he prefers
to fit a mask with "my machine" we will use "his machine"

<sub rant>
The software he used to read my smart card is EXACTLY the same version
I run.

It is the same exact software the booth tech then selects a different
option from to run the test.

I am not sure why this annoys me so much but I keep coming back to:
"anyone who has gone through the amount of training my very first tech
went through (she was essentially an EMT and said that she was the
least educated of the night staff) would be smart enough to see the
options on the software and know that the stomping was unneeded on
their part".
</sub rant>

I dig my adams circuit out of my case, he has seen pillows but never
anything "that simple" as he digs out things even cyber-punks would
avoid and a few I have seen and avoided for one reason or another..

I have the adams circuit specifically because any interface that goes
outside of my nose closes my nostrils frequently adding to the apnea.
This was established during my first sleep test, and the adams circuit
is all that anyone I delt with had heard of at the time.

He who was just chastized by the Dr once again tells me that is
impossible [sigh].

After we verify that my mask is leaking around 25% nearly continually
(the Dr. thought 30% with peaks to 70% after looking over my
printouts) We try every color of pillow made for the adams circuit, no
joy.

He digs out his first choice which reminds me of my respironics
"backup" only newer and obviously with some of the annoyances fixed.

My nose not being keen on being told it didnt exist or was incorrectly
doing so wasted less than 30 seconds flapping closed, the woman in the
booth calls out to me to breathe which I had to do through my mouth...
he didnt believe me when I said I couldnt.

So he gets right down in my face and we try again, this time it takes
a little longer but he was watching as the impossible happened.

We try every mask in his box with preference for the prong type
interface. My adams circuit (which has brand new pillows for my
birthday March 10 every year) ends up being the best thing in the
building :-(

He goes off again about how my nose cant be closing up, its cartlige,
and we try playing with positioning of the interface, and find that if
I could get a slightly more obtuse angle of plumbing adapter (another
suggestion from Joe at cpapman, and has worked for a long time) and
apply pressure at a different angle we can get it down to about 15%
continual leak instead of 25%

He asks if I have had plastic surgery on my nose with the implication
that I am telling stories when I say the only thing that has changed
since I was 13 was my age (and size for the first few of those years),
and that as one can obviously see I didnt even get my nose fixed when
I had an argument with a horse and lost as a small child.

Suddenly that explains the flapping closed, even though I had
explained that in the first place.

He goes on about how nothing has changed the position of my nose,
therefore my mask has always leaked, and I have never gotten good
sleep etc. He can do nothing for me and I should just pack it in and
claim disability. (not exactly his words but all I took out was the
nastyness).

We end with a stalemate.

<note>
I use the cpapman's custom headgear to hold this mess together.

I am looking at other options including building my own attachment
hardware.

Maybe some day I will rant about the phone calls I made to several
DMEs and xPAP makers etc. suffice it to say that I am casting my own
pillows from medical silicone or latex before I work on the headgear.

The main thing I learned during our mask trying session is that none
of the pillows are ball-park close to the design of my nostrils.

The adams pillows are the closest and they are 1/3 the size of my
nostrils. Many of the insertion interfaces were swallowed whole by my
nostrils.
</note>

The check-out clerk wants me to come in every 6 months for a sleep
study. I stomp and hold my breath until she calls the Dr. and he
insures her that as long as nothing is going wrong I can email him a
data dump every 6 months and he doesnt even need to see me :-) I like
him better than Dr. #2...

As I am leaving the building (last regular appointment of the day to
leave) side by side with the Dr another clerk comes running after me
"you forgot your sleep study appointment for 6 months" [sigh] she
stomps and holds her breath even after the Dr explains our deal... "it
is policy, all patients have to have a sleep study every six months"
an argument follows, and the Dr wins... turns out he is the director
of the sleep center!

4) After all of this I did a non-scientific survey of the people I
interract with who I know are hose-heads including in the end one of
the clerks from the sleep center (FOAF) who was astounded at the
thought of APAP.

Of the 11 people who checked their actual sleep study prescription two
of us have everything that was prescribed.

Myself and my father-in-law (who I had to go to the DME with and force
them to give him the prescribed Bi-PAP machine instead of the CPAP
they sent him home with, and he then fought to get the heated
humidifier prescribed instead of the pass-over supplied)

Both of us who have exactly what was prescribed had to stomp and hold
our breath to get what was prescribed instead of what was delivered.

The clerk lost her job when she announced that she was going to get
what was prescribed instead of what was delivered. (force reduction
was the excuse, but funny to me that it happened the day following her
announcement, and she was the only one reduced).

Apparently it is heracy to speak of anything except what is delivered.
Fortunately the director of the clinic is her prescribing Dr and he
has begun looking into the whole mess, and he now has all of my story
with names and addresses to contact us. He is still a bit confused at
how so many of his prescriptions can be "misread".

A week after my appointment, I received a reminder to schedule my 6
month sleep study [sigh].

Of the suppliers and manufacturers I called many of them had heard my
exact complaints, some as recently as several hours previous.

None even bothered to listen to me. (yeah definately another rant on
that subject someday).

None asked for my contact information, though respironics did ask my
name when I mentioned that I use their machine. Later he asked if I
was satisfied with my recalled humidifier base replacement.

His computer knows me at least.

<note>
This just in...
I stand partly corrected. MY wife just came in from work with the
mail.

Respironics has sent me a pile of survey paperwork.

Interesting that they havent sent me anything else except one recall
notice over a year ago in those almost 8 years...

MAYBE someone did listen after all :-)
</note>
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