Re: Free Back-Up Vents

Gail A. Anderson (beadgander(AT)juno.com)
Fri, 1 May 1998 19:51:55 -0400

As of Dec. 97 [or near to] Medicare is no longer paying for back-up
vents. It seems to me that in the past if you were on a vent for at
least 20 hours a day, you qualified for a backup. I feel fortunate that
my O2 provider, Apria, is still providing the backup vent. That second
vent does not just sit there waiting for an emergency. That is the one I
use [without the cascade] on a wheeled walker adapted with a shelf for
the vent, battery, and O2 pack. It was featured in INTERNATIONAL
VENTILATOR NETWORK NEWS publication this spring. I use it whenever I am
walking about away from my bed where the other vent sits. It would be a
real pain [and a lot of work] to keep transferring just one vent from one
place to another.
While I was in the hospital recently, using my own vent, I had my backup
brought in on the walker so I could walk to the gym for OT and PT for
exercise. I was able to walk laps in the hall in the evening which helped
keep up my endurance.

I am considering joining an HMO [perhaps First Seniority --- Tufts, or
Harvard Secure Horizons]. Does anyone have any experience with either of
them in Mass. while on a vent?

Also during my recent hospitalization for pseudomonas and serratia, I was
given Tobi, a newly approved antibiotic for aerosol tobramycin. It is
meant for cystic fibrosis [ which I don't have] and approved by the FDA
in Dec.97. It worked so well that I went from being short of breath
walking only a few steps to walking laps in the hall in only 3 days. My
vent pressures went down 15 points too. Unfortunately it is so
expensive. It is used 28 days on and 28 days off to maintain. At the
hospital it was $125. a dose twice a day. Now I am trying to find some
way to pay for this at home with no prescription coverage. I don't
qualify for Medicaid, but even if I gave up my apartment and lived on a
park bench [with a plug for the vent] I still could not afford it. It
was thought that Medicare might pay it but then the FDA has approved it
for cystic fibrosis. Any suggestions??????? We have contacted our local
congressman for his help in getting through the FDA red tape.
Thanks for listening and any suggestions you can come up with, Gail