Re: Re: Mechanically and Technically Comprimised

[Guest guest]

I totally agree about the very cheap water bottle attachment to the

LOX. The one thing that has to fit properly

every time is plastic!!!! It should be made of a more durable material.

The entire tank is metal!! I have had two serious leaks from the bottle

connection!

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

Potter,

reader,carousel lover and MomMom to

Darah

“I’m gonna

be iron like a lion in Zion” Bob Marley

Bruce Moreland wrote:

I am paranoid about the humidifier bottles. I not only make sure

they

are bubbling. I always did my cannula in water after to make sure its

bubbling. I'm going to get one of those things to measure flow out I

think. As to getting the bottle tight, its just the whole working

upside down thing. Plus here we are on thousands of dollars of

equipment with $5 bottles. Its like buying a Rolls Royce and getting

a $10 drink holder that your drink tips half the time.

Well, I thought I was mechanically compromised and I do fill the

portable early, but I've only had one freeze in my first two weeks

and filled it a total of about 20-24 times. If its freezing

constantly I'd suggest there might be something wrong with one of the

connecting pieces so that even with it on tight some oxygen is

leaking around the fill ports. I'd suggest having the supplier check

it and fill it themselves next time over.

>

>

> Two things:

>

> Humidifier bottles for high flow. These things are almost

impossible to

> get on and get airtight. Until they are airtight, no 02 flow.

These

> have to filled every day now and we start sweating at the thought.

> After the last fiasco where my 02 dropped to 40 and I had

convulsions,

> we hook me up to a tank before we even start.

>

> P. You are on high flow. Do you use the humidifier bottle and

it

> such a chore for you. Are we really comprimised? Seems like they

just

> don't want to threat correctly.....?

>

> Number two on my list is filling the portable. My husband is

especially

> bad at it. The delivery guy told us that the Companion T was Idiot

> Proof to fill. Well, not so. We keep the portable inside. We

wipe all

> the ports. We have had the tutorials. We begin 1/2 hour early. I

hate

> the fill up. It intimidates me and causes my poor husband to morph

into

> a raving lunatic. It freezes onto the mother ship, stops filling

> halfway through or fills, then shoots out the bottom. How did we

ever

> get men onto the moon?

>

> This is going to be a bad day. I get up at 4:30 a.m. and I am

overcome

> with the Grumpies. They multiply at night! Little devils.

>

> Hugs, Joyce D.

> PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

> 2 COR. 12:10 ....when I am weak, then I am strong.

>

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 1/16/2008 9:01 AM

[Guest guest]

Joyce,

I hear ya....the mattresses on those things are horrible. I don't understand it. Why would they provide a piece of junk to a seriously ill person? Do they think because we're sick we're too insensible to notice we're sleeping on a piece of plastic covered cheap foam garbage? Decent foam or latex foam mattresses are not expensive. Is it too much to ask that they provide us with one when we need a hospital bed? I understand the need for it to be covered with plastic but it should also be in good condition..... oh this makes me so mad.

Beth in NC age 48 Fibrotic NSIP 06/06

Re: Mechanically and Technically Comprimised

The stupid cheap water bottle is what nearly killed me. I can not believe how ill made all this equipment is ...... this stuff is for seriously ill patients.

They are coming today to replace the mattress on this torture weapon. I told the guy at Apria that it was no wonder that people die on these beds. He is so disagreeable. ....well, he has met his match. This is war! I have been in hospitals and as bad as the beds are....nothing like this thing.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > >> > > Two things:> > >> > > Humidifier bottles for high flow. These things are almost> > impossible to> > > get on and get airtight. Until they are airtight, no 02 flow.> > These> > > have to filled every day now and we start sweating at the thought.> > > After the last fiasco where my 02 dropped to 40 and I had> > convulsions,> > > we hook me up to a tank

before we even start.> > >> > > P. You are on high flow. Do you use the humidifier bottle and> > it> > > such a chore for you. Are we really comprimised? Seems like they> > just> > > don't want to threat correctly... ..?> > >> > > Number two on my list is filling the portable. My husband is> > especially> > > bad at it. The delivery guy told us that the Companion T was Idiot> > > Proof to fill. Well, not so. We keep the portable inside. We> > wipe all> > > the ports. We have had the tutorials. We begin 1/2 hour early. I> > hate> > > the fill up. It intimidates me and causes my poor husband to morph> > into> > > a raving lunatic. It freezes onto the mother ship, stops filling> > > halfway through or fills, then shoots out the bottom. How

did we> > ever> > > get men onto the moon?> > >> > > This is going to be a bad day. I get up at 4:30 a.m. and I am> > overcome> > > with the Grumpies. They multiply at night! Little devils.> > >> > > Hugs, Joyce D.> > > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA> > > 2 COR. 12:10 ....when I am weak, then I am strong.> > >> >> > > >> >------------ --------- --------- --------- --------- --------- --------- ------> >> >No virus found in this incoming message.> >Checked by AVG Free Edition. > >Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 1/16/2008 9:01 AM> > > >>

[Guest guest]

You go Joyce, give um FITS. if you need help we will e on the way in

a flash..

Love and Prayers, Peggy

ipf 6/04 Florida

" Worry looks around,

Sorry looks back,

Faith looks up. "

The stupid cheap water bottle is what nearly killed me. I can not

believe how ill made all this equipment is ...... this stuff is for

seriously ill patients.

They are coming today to replace the mattress on this torture

weapon. I told the guy at Apria that it was no wonder that people

die on these beds. He is so disagreeable.....well, he has met his

match. This is war! I have been in hospitals and as bad as the beds

are....nothing like this thing.

Hugs, Joyce D.

PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

2 COR. 12:10 ....when I am weak, then I am strong.

> > >

> > >

> > > Two things:

> > >

> > > Humidifier bottles for high flow. These things are almost

> > impossible to

> > > get on and get airtight. Until they are airtight, no 02 flow.

> > These

> > > have to filled every day now and we start sweating at the

thought.

> > > After the last fiasco where my 02 dropped to 40 and I had

> > convulsions,

> > > we hook me up to a tank before we even start.

> > >

> > > P. You are on high flow. Do you use the humidifier bottle

and

> > it

> > > such a chore for you. Are we really comprimised? Seems like they

> > just

> > > don't want to threat correctly.....?

> > >

> > > Number two on my list is filling the portable. My husband is

> > especially

> > > bad at it. The delivery guy told us that the Companion T was

Idiot

> > > Proof to fill. Well, not so. We keep the portable inside. We

> > wipe all

> > > the ports. We have had the tutorials. We begin 1/2 hour early. I

> > hate

> > > the fill up. It intimidates me and causes my poor husband to

morph

> > into

> > > a raving lunatic. It freezes onto the mother ship, stops filling

> > > halfway through or fills, then shoots out the bottom. How did we

> > ever

> > > get men onto the moon?

> > >

> > > This is going to be a bad day. I get up at 4:30 a.m. and I am

> > overcome

> > > with the Grumpies. They multiply at night! Little devils.

> > >

> > > Hugs, Joyce D.

> > > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

> > > 2 COR. 12:10 ....when I am weak, then I am strong.

> > >

> >

> >

> >

>

>----------------------------------------------------------------------

--

> >

> >No virus found in this incoming message.

> >Checked by AVG Free Edition.

> >Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date:

1/16/2008 9:01 AM

> >

> >

>

[Guest guest]

Joyce,

I'm glad they're at least trying to get you something better. It's so intensely frustrating when all you want to do is get a few hours sleep. It doesn't seem like it should be too much to ask....

I've often toyed with the idea of those adjustable beds but they are hugely expensive and just not in my budget. Right now I have a regular double bed with a latex foam mattress and a mattress genie. It's working for me now and I love the mattress. If/when the time comes when I need a hosptal bed again, I've already made up my mind to buy a latex foam mattress for it. I know what works for me and I'm determined to set myself up the best I can.

It's so hard to figure out what works and what doesn't especially when we're just so flippin tired, brain and bone weary.

Beth in NC age 48 Fibrotic NSIP 06/06

Re: Mechanically and Technically Comprimised

Beth,

My regular 02 delivery guy brought me a much better one. It is an Invacare Deluxe. Tonight will tell the tale. Last night was horrible. I finally got up at 3 a.m. I will give it a couple of nights, then I am going to order the foam mattress.

He told me to keep the APP pad on the highest setting and that would also give it some extra firmness. We will see. I am acting like the Princess and the pea....

I thought of the adjustable bed, but as things progress, I may need a hospital bed that can be raised up high from the floor. It is ugly, but may be necessary one day soon.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > > >> > > >> > > > Two things:> > > >> > > > Humidifier bottles for high flow. These things are almost> > > impossible to> > > > get on and get airtight. Until they are airtight, no 02 flow.> > > These> > > > have to filled every day now and we start sweating at the thought.> > > > After the last fiasco where my 02 dropped to 40 and I had> > > convulsions,> > > > we hook me up to a tank before we even

start.> > > >> > > > P. You are on high flow. Do you use the humidifier bottle and> > > it> > > > such a chore for you. Are we really comprimised? Seems like they> > > just> > > > don't want to threat correctly... ..?> > > >> > > > Number two on my list is filling the portable. My husband is> > > especially> > > > bad at it. The delivery guy told us that the Companion T was Idiot> > > > Proof to fill. Well, not so. We keep the portable inside. We> > > wipe all> > > > the ports. We have had the tutorials. We begin 1/2 hour early. I> > > hate> > > > the fill up. It intimidates me and causes my poor husband to morph> > > into> > > > a raving lunatic. It freezes onto the mother ship, stops

filling> > > > halfway through or fills, then shoots out the bottom. How did we> > > ever> > > > get men onto the moon?> > > >> > > > This is going to be a bad day. I get up at 4:30 a.m. and I am> > > overcome> > > > with the Grumpies. They multiply at night! Little devils.> > > >> > > > Hugs, Joyce D.> > > > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA> > > > 2 COR. 12:10 ....when I am weak, then I am strong.> > > >> > >> > > > > >> > >------------ --------- --------- --------- --------- --------- --------- ------> > >> > >No virus found in this incoming message.> > >Checked by AVG Free Edition. > > >Version: 7.5.516 / Virus Database: 269.19.5/1228 -

Release Date: 1/16/2008 9:01 AM> > > > > >> >>

[Guest guest]

Joyce, I think you are "care and comfort compromised." I always thought they made hospital beds so uncomfortable so that people would want to get out of the hospital as soon as possible! How terrible that you home one feels worse. Wouldn't it be great if someone came up with a line of medical necessities for the chronically ill that were comfortable, easy to use, and made life easier not harder? It is so unreal that computers, and everything electrical has so advanced in the past few years and our medical equipment seems to be at a standstill. Anyway, I will be praying for you-wish I could come over for a cup of coffee and give you a foot rub ( or a new mattress) and do something to make life a little easier- Sarcoid/PF 3/2006 California Re: Mechanically and Technically Comprimised

The stupid cheap water bottle is what nearly killed me. I can not believe how ill made all this equipment is ...... this stuff is for seriously ill patients.

They are coming today to replace the mattress on this torture weapon. I told the guy at Apria that it was no wonder that people die on these beds. He is so disagreeable. ....well, he has met his match. This is war! I have been in hospitals and as bad as the beds are....nothing like this thing.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > >> > > Two things:> > >> > > Humidifier bottles for high flow. These things are almost> > impossible to> > > get on and get airtight. Until they are airtight, no 02 flow.> > These> > > have to filled every day now and we start sweating at the thought.> > > After the last fiasco where my 02 dropped to 40 and I had> > convulsions,> > > we

hook me up to a tank before we even start.> > >> > > P. You are on high flow. Do you use the humidifier bottle and> > it> > > such a chore for you. Are we really comprimised? Seems like they> > just> > > don't want to threat correctly... ..?> > >> > > Number two on my list is filling the portable. My husband is> > especially> > > bad at it. The delivery guy told us that the Companion T was Idiot> > > Proof to fill. Well, not so. We keep the portable inside. We> > wipe all> > > the ports. We have had the tutorials. We begin 1/2 hour early. I> > hate> > > the fill up. It intimidates me and causes my poor husband to morph> > into> > > a raving lunatic. It freezes onto the mother ship, stops filling> > > halfway through or fills, then

shoots out the bottom. How did we> > ever> > > get men onto the moon?> > >> > > This is going to be a bad day. I get up at 4:30 a.m. and I am> > overcome> > > with the Grumpies. They multiply at night! Little devils.> > >> > > Hugs, Joyce D.> > > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA> > > 2 COR. 12:10 ....when I am weak, then I am strong.> > >> >> > > >> >------------ --------- --------- --------- --------- --------- --------- ------> >> >No virus found in this incoming message.> >Checked by AVG Free Edition. > >Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 1/16/2008 9:01 AM> > > >>

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Yes Joyce... give 'em hell! I was lucky, I had an option to leave Apria and I did so quickly all you could see was a mini-whirlwind!

Apria sucks!

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

Re: Re: Mechanically and Technically Comprimised

You go Joyce, give um FITS. if you need help we will e on the way in a flash..Love and Prayers, Peggyipf 6/04 Florida"Worry looks around,Sorry looks back,Faith looks up."The stupid cheap water bottle is what nearly killed me. I can not believe how ill made all this equipment is ...... this stuff is for seriously ill patients.They are coming today to replace the mattress on this torture weapon. I told the guy at Apria that it was no wonder that people die on these beds. He is so disagreeable.....well, he has met his match. This is war! I have been in hospitals and as bad as the beds are....nothing like this thing.Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA2 COR. 12:10 ....when I am weak, then I am strong.> > >> > >> > > Two things:> > >> > > Humidifier bottles for high flow. These things are almost> > impossible to> > > get on and get airtight. Until they are airtight, no 02 flow.> > These> > > have to filled every day now and we start sweating at the thought.> > > After the last fiasco where my 02 dropped to 40 and I had> > convulsions,> > > we hook me up to a tank before we even start.> > >> > > P. You are on high flow. Do you use the humidifier bottle and> > it> > > such a chore for you. Are we really comprimised? Seems like they> > just> > > don't want to threat correctly.....?> > >> > > Number two on my list is filling the portable. My husband is> > especially> > > bad at it. The delivery guy told us that the Companion T was Idiot> > > Proof to fill. Well, not so. We keep the portable inside. We> > wipe all> > > the ports. We have had the tutorials. We begin 1/2 hour early. I> > hate> > > the fill up. It intimidates me and causes my poor husband to morph> > into> > > a raving lunatic. It freezes onto the mother ship, stops filling> > > halfway through or fills, then shoots out the bottom. How did we> > ever> > > get men onto the moon?> > >> > > This is going to be a bad day. I get up at 4:30 a.m. and I am> > overcome> > > with the Grumpies. They multiply at night! Little devils.> > >> > > Hugs, Joyce D.> > > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA> > > 2 COR. 12:10 ....when I am weak, then I am strong.> > >> >> >> >> >---------------------------------------------------------- --> >> >No virus found in this incoming message.> >Checked by AVG Free Edition.> >Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 1/16/2008 9:01 AM> >> >>