Re: Adventures in Hollywood
CloudSing (CloudSing(AT)aol.com)
Fri, 22 May 1998 01:03:03 EDT
I thought y'all might find our present experience entertaining. I am sending
this posting from Vencor Hospital in beautiful Hollywood FL. My husband Mark
was admitted on Tuesday upon referral to Dr. Tolchin here by Dr. Bach in New
Jersey. It turns out our timing was priceless because the pulmonologist here,
Dr. Benazir, had just returned from a visit with Dr. Bach, & is just starting
a new program offering non-invasive ventilation for folks with neuromuscular
disorders. (!!) Mark is the first patient. I figure this is a blessing & a
curse. When we walked in on Tuesday, we were met & escorted by two
administrators who said, "Well, here's our VIP patient." He's gotten lots of
attention & evaluation. People have been very nice to us & extremely helpful
in dealing with insurance. I'm not certain, however, how successful the whole
deal will ultimately be. Dr. Benazir thinks we're on second rounding toward
home, but we have lots of problems. I had hoped that Mark could tolerate night
time ventilation & that it would reduce his CO2's & decrease need for daytime
oxygen. It's not so simple. He is probably going to go home on 3-4 daytime
treatments with volume ventilator & Coffilator (spelling?), &same oxygen usage
as before (3-4 liters continuous). Hopefully he will eventually develop
tolerance for volume ventilator & be able to use it at night. His CO2's are
still around 60. I would like to be seeing more concrete solutions, but this
is still better than the gloom & doom prognosis that we were being given if he
didn't do something. In any event, I'd be interested to know of others'
experiences in getting used to volume ventilation when one is facially
defensive, has claustrophobia, & feels that he has a "choice". It's tough for
him to do this when he doesn't feel that he absolutely has to do it RIGHT NOW
in order do stay alive, you know? The volume ventilator is very uncomfortable
to him. Thanks for any ideas, & I'll keep you all tuned. Nancy