Differences between a conserver and a pulse dose and can anyone use them?

July 16, 2009

Ok. I am so new at this stuff. I keep thinking I am ahead of the game and then

there is a new wrinkle. I have a concentrator. My family physician ordered it

for me because I could not get in to see a pulmonologist for 2 months. It was

never taken away and no one told me to use any more than the 2 liters a night

that my family physician suggested as a temporary measure. The insurance

company bought it for me but I have never been told what else I might need it

for (including the pulmonologist). 3 years later and National Jewish says I

should have a system that delivers 4 liters for work around the house and

anytime I go out to shop, walk or exercise. For some reason, National Jewish

said the Helios would not be a good idea. They also said I should look at

continuous air as opposed to pulse. I go to my medical supplier and they want

to know if I have a conserver. I have no idea what it is or if I want one. I

have an Ifill system and only a D tank because they are out of C and B (assume

that is the one the size of a wine bottle). I do not like the carry system for

the D tank. The strap cuts into my shoulder and have seen some people with

" duffle " bag carriers that 'look' like they might work better. What do you guys

do with the 7 ft of cannula that is looping all over?

Also, are there some unwritten rules about qualifying for pulmonary rehab? I

have a new pulmo-dude here in Salt Lake and he is telling me he is not

recommending any treatment until I have a VATS done. Does that rule out rehab?

How positive do they have to be about a diagnosis? I have a letter from

National Jewish that says their 'impression' is that I have cellular NSIP. My

original pulmonologist would not go beyond Interstitial Lung Disease. One step

forward, two steps back.

Stefani

ILD 2/2006, NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

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