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Christamae
08-30-2004, 04:39 PM
Our vendors for breathing equipment have decided to change ventilators on us It would take pages to describe my frustration but here is just a little. The internal battery is only 10 minutes compared to my current vents 7 hours. I like my ventilator. I recently tried this awful machine and found it worthless. I had to turn the volume (how big the breath is) way up in order to breathe. Even then the way the vent gives a breath does not move junk in my chest. Not good. Every time I cough the breath gets smaller. When there's mucus the vent labors to push air and barely gives any breath. Lovely, huh? Already having trouble breathing and you get less breath. My current vent is very good with coughs and mucus in the tube and will compensate and give a slightly bigger breath. Not to mention the other vent is loud and squeals and emits tons of heat. This is the best part, this ventilator they want me to use STOPS WORKING AKA NO BREATHING IF IT GETS TOO HOT OR IS BUMPED !!!! Hello, a bump in the road could stop it and uhI live in a hot area. My current vent has been dropped from 10 ft and kept running! All because my insurance does not have my current vent on the "approved " list and has not been paying. And we just found out that even if they could get payed they will not change because "they don't want to supply another vent or train personell. What happened to "first do no harm"? I will do everything in my power to keep my current vent from being taken.

My favorite things about my vent (Newport HT50):

The internal battery lasts up to ten hours. We actually did a battery test while I was on it and stopped at 7 hrs with about 10% power left. vs. there vent (LTV 800 or 850)- > or = to 10 minute internal battery with huge bulky 6 hr batteries

Volume delivery- It delivers volumes beautifully. It compensates for back pressure, breathes slightly bigger/maintains volumes when I cough, and breathes past mucus while alarming to let my parents know I need suctioned vs. there vent I had to turn the volume (how big the breath is) way up in order to breathe- I never truly felt like I could breathe- got a CO2 headache and SATs went down. Even then the way the vent gives a breath does not move junk in my chest. Not good. Every time I cough the breath gets smaller. When there's mucus the vent labors to push air and barely gives any breath.

Emits no heat and is very quiet vs. squealing loud practically personal heater

Internal peep vs. no peep have to attach outer device that doesn't feel right

Portabilty- small light weight vs. bulky batteries

Durability- This thing does not fail. It will take a beating and keep running-literally. It has been dropped from 10 ft and kept running. Mine fell of the back of my chair and kept running-not even missing a breath. vs. If you bump the fan it stops, if I hit a big bump it stops, if it gets too hot it stops AKA NO AIR

Very simple to run-no code needed to change settings. vs. strange settings example you can only change the volumes by increments of 5

I cannot believe this is happening. I am an active 18 yr old who is preparing to go to college. Iam not completely vent dependant- use it when sleeping or when sick. But I keep getting sleepy in the day which causes my O2 t drop as low as mid 50s and cannot be woken up. Plus I keep getting pneumonias and then I cannot breathe on my own at all- not even to go to the bathroom. We are talking rapidly dropping O2, burning lungs, instant headache, mouthing desperately for the bag can't breathe. Plus I cough up gobs of goo. And this other vent can't even bring up junk or breathe past mucus. My disease is a severe degenerative muscle wasting (severe Muscular Dystrophy) and really effects my brething. I know it will not be long until I will be completely vent dependant especially considering my 16% vital capacity, permanently collapsed left lower lung, and all these pneumonias! I should not have to worry about whether or not I will be able to breathe.

My only other option is to switch to Apria. But my current DMV has been very good about delivering my many supplies that are often unique and expensive. For example, my trach airway gets infected easily and needs a Bivona specialized trach (about $2000). I currently am getting 2 trachs a month (I know almost unheard of) because I can only reuse a trach once maybe twice without getting sick. Our current dmv has previously been very responsive and helpful. When we worked with Apria before, they were not very helpful. Has anyone had experience with Apria especially in the Modesto CA area?
Can I file an appeal through my insurance (CCS/Medical)? By law can they take my vent, with another vent in the house- even if I can't breathe on it? What kind of results/trouble would the media cause? Are there any deaths/injuries/negative experiences/ recalls on the LTV 800 or 850? Any organizations to help? Please, please advice/ help!!

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