Re: Non invasive Ventilation
annette (nete1(AT)midwest.net)
Fri, 19 Sep 1997 21:29:21 -0500
At 07:42 PM 9/19/97 -0500, you wrote:
>Jim,
>To answer your question about non-invasive ventilation. I am not entirely
>100% sure if someone can be totally ventilated non-invasively but I do
>believe so. There are devices like the pneumo-wrap and chest shells that
>do the breathing for you. They wrap around the upper body. When I was
>little, after contracting polio, I ate in the lung. You learn to do
>things between the breaths. Ed Roberts, the former director of Calif. VR
>and Bill Tainter, his successor, both used non-invasive ventilation. They
>sucked air through the hose and Ed slept in the iron-lung. I must admit,
>I am terrified of being trached even though I know many people who are
>and think it's no big deal. The problem is, the majority of
>pulmonologists, respiratory doctors, respiratory therapists, etc. are
>simply ignorant of non-invasive techniques. Their only solution is to
>trach. The respiratory doctor I had in Southern Illinois didn't have a
>clue about non-invasive techniques. He was totally uninterested in
>learning. Once when I had pneumonia, I was hospitalized in C'dale. The
>doctor refused to let me bring in my vent. He said, "So are you going to
>intubate yourself too?" It is difficult for Polio survivors to get
>competent doctors. For those of us who have respiratory problems we
>cannot be given oxygen. If we are given oxygen, then our brain sends a
>signal to the few muscles that are still working to shut down. I am
>appalled by the number of respiratory doctors who are not aware of this
>fact. It's scary. My husband knows if I go into respiratory failure, he
>is to get me to St. Louis or Chicago to specific doctors who are
>knowledgeable. I hope I have answered your question. If you want more
>specific info, let me know and I will try to get you connected with the
>doctors who can answer your question much more thoroughly than I just
>did.
>Valerie
>
>
Val..
I understand your feelings about non invasive ventilation, but having a
trach isn't that bad. To me the use of a mask would be totally "invasive"
in another sort of way. I realize that each of us on this list have our
own ways of using a ventilator and our thoughts on a particular method.
But I must totally DISAGREE with you or your thoughts on physicians in
Southern IL...that being Dr. Sanjabi.
In my opinion he is very knowledgable in the methods used for ventilation
and what PPS actually is. In the 3 and a half years that I have had him,
(and I know Mark has had him also) he is one of the few physicians I have
had that listens to what I have to say and takes it into total
consideration regarding my maintainance of "health". I was the one who
suggested the trach while being hospitalized in 1994 with respiratory
failure. If it wasn't for his knowledge and persistance I would have died.
When entering the emergency room my sats were so low, they didn't even
register on the oximeter, but he managed to save my live. During my stay
he wanted to try many different ways of assisting me with non-invasive
ventilation. Again as I stated, it was my idea to be trached.
During my stays in the hospital since then, (which has been few), he has
let me bring both my own vent and suction cathethers to ICU. Saying, "what
ever made me more comfortable was ok with him".
Since you left Southern IL, the hospital services have grown quite a bit
along with the knowledge of PPS, vent patients, and people with
disabilities. This in part being the high population of people with
disabilites and the university's medical school. Over the past 5 years I
have worked with the medical school in doing patient doctor relation
seminars. This helps doctor to be, to become more comfortable with people
with disabilites.
Again, I respect your opinion, but just had to let mine be known also.
Annette Hanna
nete1(AT)midwest.net