Re: New soon-to-be vent user
CloudSing (CloudSing(AT)aol.com)
Wed, 6 May 1998 22:03:29 EDT
Greetings, all. I have been reading all of your postings over the last several
days trying to assemble the courage to offer a submission. I initially found
y'all when I did a search engine search on the web, looking for info about
negative pressure & noninvasive ventilation. The good news is that I found
you, & lots of info - the bad news is that I was intimidated as heck at the
prospect that every posting winds up being publicly accessible to anyone who
happens to stumble upon it while doing a web search! Ah, well, perhaps that's
the price of fame. You have helped me & maybe eventually I'll post something
that will help someone else... Through reading the archives of this list I
have found Dr. John R. Bach, a pulmonologist who seems to have a truly
progressive view & approach to dealing with restrictive lung disease &
ventilatory failure. My husband is a devastatingly handsome, very smart & much
nicer than I am 34 year old guy who has been a C6 incomplete quad since birth.
(He was Breech, they didn't turn him & they didn't do a C-section. He came out
a floppy quad.) He has been off work on disability from his job as a systems
programmer for the last several years due to his progressive restrictive lung
disease, complicated by several shoulder surgeries, lots of urinary tract
infections & pressure sores, & a general loss of stamina & physical energy.
It has recently become apparent that he needs to do something to provide
ventilatory assistance at night due to hypopnia & obstructive sleep apnea. He
is on 3 L. of O2 around the clock, but I am beginning to suspect that he
really just needs night time ventilation, & might even be able to get rid of
the O2 if we could get his CO2 down into a civilized range. We have a
pulmonologist whose attitude has pretty much been that respiratory failure &
eventual trach ventilation and/or death is an inevitable mid-term consequence.
I read some of Dr. Bach's stuff from the Internet, & then had a great chat
with him on the phone the other day. What a mind blower to find out that Mark
might actually have a fairly normal life expectancy & might be able to get off
O2 & return to work! Dr. Bach is referring us to a former colleague in the
Miami area. (We live near Tampa.) I will let you all know what happens after
we visit the guy in Miami. I hope that he will have suggestions that will
allow Mark to get strong enough to make the trip up to New Jersey to see Dr.
Bach in 3-6 months. In any event, I thank you all for being here & hope to
share lots with you in the near future. Nancy