----- Forwarded Message ----
From: Dave & Lori Michaelson <[EMAIL PROTECTED]>
To: John S. <[EMAIL PROTECTED]>
Sent: Sunday, August 19, 2007 8:48:50 PM
Subject: From Lori_Getting help anywhere...
John, in response to you and others please forward this to the list...
You are not kidding!!! Living down here by the border... you can be sure that
all the Mexicans are getting easy medical coverage and their gv'mint checks
while receiving free medical treatment usually before all the rest of us... and
most of them are illegal aliens!
When I had my wound in 2004 (that put me six months in bed) it finally took a
hard-working nurse to demand that the wound vac be ordered for me. Medicare
would only pay for one month so that is all I got! Fortunately, it took care
of 50% of my wound overnight but after that it was very slow going.
*****
I'm trying to hire privately everywhere by putting flyers at the community
colleges, the libraries, churches, by word of mouth and calling all kinds of
agencies including those who keep Mexican refugees looking for work! To no
avail! Because I am a long term patient with quadriplegia and my only
insurance is Medicare... it is almost impossible to find an agency to take you
on. We have been fighting for six years and even tried the media to expose
this discrimination without success. I only get a home health aide three
mornings a week for 90 minutes. Whoooooopeeeeeeee!
*****
On Monday, August 13... I had to go to the emergency room for the first time in
a very long time. It was my catheter change day and changing my catheter is
never a problem. I have had my current nurse for eight months and she slips it
in lickety-split and usually is in and out of here in 15 minutes (but probably
gets paid about $65 per visit). Not this time after almost 28 years with no
problems! This began making me very nervous because I have never been able to
go longer than an hour without being catheterized.
I will void (urinate) maybe once or twice without the catheter but after that
it is like my urethra clamps shut and then my bladder begins to slowly fill up
and, as it does, my autonomic dysreflexia (especially the blood pressure with a
pounding headache) gets worse and worse and becomes at stroke level.
Further, I began bleeding from the urethra every time she would just touch me
with the catheter tip. We went through 4 catheters and 4 catheter kits before
we all decided that that was enough and it was time to call my urologist. THANK
GOD my great urologist was not on vacation or in surgery on Monday! We were
able to talk to her directly. The decision was made for me to meet her in the
emergency room at the hospital that is only 2 1/2 miles from my home... exactly
where she was headed that afternoon to go to her office anyway!
I went via the ambulance because we did not want to sit me up and put any more
pressure on my bladder as well as the bleeding issue. Besides, I wasn't
dressed and would just have to go through all that only to get undressed over
there. Lifting me in and out of my wheelchair is also a BIG deal for me with
the way my wheelchair is and the pain from my syringomyelia. Even lifting me
under the shoulders hurts or exacerbates the paing back there.
Sooooooooooooooooo.............
After getting to the emergency room... they put me in a room and I was assigned
an emergency room doctor (DR FIGGIE... I kid you not!) and a nurse. ALL THEY
DID was came in and introduce themselves. My greatest concern was still that I
would begin experiencing very bad AD AT ANYTIME so the doctor came in and
actually began DICTATING to my husband and I that the bladder stretches
normally and one can go 48 hours without urinating AFTER WE EXPLAINED how that
is NOT the way it works with spinal cord injuries!!! And the dangers that go
along with it.
He simply wasn't listening and my husband actually said that "I am going to sue
this hospital if...." It was not long after that that my doctor finally
arrived. We were panicking because she thought she was going to get there a
little earlier (she told us on the phone) but she got held up at her other
office.
But in the two hours that we were waiting for her... they where not even
checking me at all or checking my blood pressure regularly... only every hour
still AFTER we told them of the severe consequences of my situation. All we
got was ignored!
They brought her a "urology cart" in case it was needed. But, it wasn't
needed. The doctor had no problem getting the catheter in and what she did was
put her finger into my vaginal canal and pushed upward a little bit so she
could feel the catheter slide right in. No problem! GEEEEZ. No bleeding,
etc..
*****
Then there was the problem of getting home. I was concerned about this on the
way in the ambulance and told one of the paramedics this. He told me that it
would not be a problem that they could come and escort me back home. But I
guess he did not know what he was talking about or just thought that would
happen.
After everything was OK and my doctor left... my husband had to keep going to
the emergency room station desk having them call the local fire station and
they said it would be $865 to come and get me and drive me home less than 3
miles away! And, no, insurance does not pay for it!!! Medicare will pay FOR
THE TRANSPORT *TO* a medical facility but not the other way around.
They called a couple of other ambulances but the story was not much different
and THEY would not be able to come and get me until 6 p.m. and it was only 2
p.m.! I had not eaten anything that day yet and had medications to take. We
just wanted to get the hell out of that scary place so my husband brought my
wheelchair over in my van.
We asked them if they could bring down a hoyer lift from the rehab department
and they did but with the response "here it is but we do not know how to use
it." And they only brought the lift and a sling... no straps and chains to
lift me! A real bunch of NON-CONCERNED, INCOMPETENT MORONS!!! We finally
asked for some orderlies or some other manpower to just lift me over into my
chair... pain or no pain. All that came in was a short pudgy fellow and my
frail little nurse. I was lugged over into my wheelchair but very sloppily and
the short guy in the back head to tug upward to get me back far enough to even
be able to drive it. My husband would have taken the back part of me but his
back had completely gone out two months ago and it was a nightmare at home
since he is my primary caregiver.
Anyway, I got home but since I was undressed I just went directly to bed for
the rest of the day to relax.
*****
Only for the next day to be another disaster. My power chair began "acting up"
by hesitating and acting like the batteries were going even though it had a
full charge the night before! It has been about three years or more since I
have had the batteries changed but this is all we needed! With a PerMobil
wheelchair it is not easy to get to the batteries unless you have the "up and
down" feature which I do not.
It took me most all day Tuesday to arrange with one, out of the three vendors
here, to "look" at the chair. Apria could not send a technician out for an
entire week just for the evaluation let alone any work or ordering batteries!
I finally got Dependable and they had an opening the following morning. So I
stayed in bed while my husband took it down (45 minute trip each way). The guy
had told me it would take two hours to check each battery= four hours total.
But it took them all day long! Only to find out it was not my batteries or my
battery charger and that it was just a fluke. Thank goodness because he did
not have the batteries in stock and it would take at least a week for them to
get here! The other good news is that, after Medicare paid their 80%, our fee
was only $33. Another vendor in the area that we have used before has charged
us much much much more! Isn't it grand???
*****
The final blow was when my home health agency nurse (who told us she was going
to call later to find out how we made out) called the next morning while I was
still in bed and did not have access to a phone. My husband got the phone in
the office and she told him what the doctor did with success and not a single
problem and her response was "I/We don't do that procedure." Now, WHY WOULDN'T
a nurse be open to a procedure that would be useful and helpful and works if
there is any more trouble with myself OR for another patient?
I knew this was just "an excuse" because beyond her getting my catheters in
great and being the assistant clinical coordinator there at the agency... she
is a jerk and has treated me disrespectfully but we have put up with it. But I
was not going to buy this malarkey so I made a phone call to my urologist and
asked if she would kindly call the Director of the home health agency (who is
very very nice) to explain what happened and to see if the story told to us by
the nurse was, in fact, true.
The director told my urologist that their nurses have absolutely no problems
with such procedures. I suspected this but I needed my doctor advocate instead
of trying to tackle this alone. The last time I went above a nurse to this
director... the nurse got all bent out of shape and acted worse toward me and
we had to request another case manager nurse. I am sure that my nurse is going
to deny that she ever said that they did not do that procedure but TOUGH! It
is my body and my well-being and they get paid very well by Medicare to come
out and help me!!!
I will find out more tomorrow as my doctor did not talk to the director until
later Friday afternoon and the director was going to call my doctor back after
talking to my nurse. Not just about the procedure but because my next catheter
change falls on Labor Day and this particular nurse is not good at calling me
to arrange my regularly scheduled appointments (I know that sounds strange but
that is what she does and that is what I meant by disrespectful) so I knew that
THAT was going to be a problem as well.
I have had an about enough of other people not doing their job and so on and so
forth. It seems like it is a never ending battle with one thing or another!
Lori
C4/5 complete quad, almost 28 years post
Tucson, AZ
-------Original Message-------
From: John S.
Date: 8/18/2007 9:08:42 PM
To: [email protected]
Subject: Re: [QUAD-L] mattresses
I swear, in the almost 32 years I've been a quad, it has never been so hard to
get help and it has never cost me so much out of pocket since I worked. I
watched Bush say children have always been able to go to the ER for treatment
and there shouldn't be federal funding to guarentee health care for children.
Along with his budget cuts in health care, he has been removing the safety nets
put in place under Johnson and Nixon. America now ranks 41 in health care among
industrialized nations. Yet America spends more healthcare dollars than the top
20 nations combined. Ohyea, I forgot we have those people selling health
insurance that need to be supported. The CEO of blue cross still doesn't have
enough private jets to get his dog to the vet for breakfast.
john
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