Re: NOT great news!

September 24, 2007

, I am so sorry your in such pain. I do hate this disease so

badly. I am going to be praying for your to have relief right now.

God Bless you. Good Night.

Love and Prayers, Peggy

ipf 6/04 Florida

" Worry looks around,

Sorry looks back,

Faith looks up. "

Joyce,

As par for the course, Apria did not come today as scheduled. Who

knows the reason today! Anyway, here is what you requested.

l. Hudson RCI High Flow Humidifier 3260 (I have an extra one and

will send it for you want me to.

2.Salter High Flow Nasal Cannula and tubing..SAL1600 HF-7-25

I believe that Apria people say anything just so they dont have to

look for something for you. My husband believes that they probably

bill the insurance companies just like they gave it to you, but

didnt. Would be interesting to know.

I have had a very bad day....dont kow if I can take another one. My

husband wanted to call the Dr. But I knew that she would hospitalize

me and I really think that when I go into the hospital, I will not

return. He cried tonight. This is the first time I have seen him

break down. He has always been so strong. I have been having much

pain. Feels like I am in a vice..between my back and front. Just

squeezing tighter. As much as I dont want to, I have had to take the

oxycontin many times today.

Oh well, tomorrow is another day I guess.

L.

Re: NOT great news!

>

> Hi Joyce,

> I use a simple mask to sleep with, I am a mouth breather. Can't

seem to help it when I'm sleeping. The mask is for high concentration

a re breather and it will help you walking and doing things. I get 4

mask a month and of both kinds and 4 cannula. Sometimes the bags one

are a little troublesome. The re breather or non re breather mask

have to be used without a water bottle and I se the water bottle on

the concentrator and because they didn't want to give me more tanks

than the 10 a month and that wasn't enough for me to get around in

and out of the house, so they decided to give me a liquid tank to use

in the house when I exert. I haven't been able to get around on my

own for almost 2 years now. I'm depend on my wonderful husband for

everything. God knew who I needed and I thanks Him regularly for him.

I have to take my concentrator when I go someplace. I have the big

M60 tank that last about 3 hours in the car and we can connect a

water bottle to it and that helps. There is also a cann ease that you

can buy that is good for the nose. THeir number is 1-. I

have also found that using a mask on top of your cannula when your

sats are low helps to bring it up faster. I have a mask sitting

beside me at all time, I cut the cord off and just use the mask part

also used that last winter and it helps to get the cold out so many

uses for the mask.

>

> I don't consider what I have lost but want I have gained, more

time with hubby (love that as we were always close). Time with

God,time to read and crochet and share with others.

> I have my good days and although sometimes that are scarce, I try

to find good in the bad days and don't let that steal my joy, as your

joy is your strength.

>

> God bless

> Donna

>

September 24, 2007

, You are an amazing woman! How in the world are you able to chat with us amidst all the pain? You are truly an inspiration to all of us. I am praying that God takes away your pain today and that you get a good night's rest and a pain free day tomorrow. God bless you- Lentz wrote: Joyce, As par for the course, Apria did not come today as scheduled. Who knows the reason today! Anyway,

here is what you requested. l. Hudson RCI High Flow Humidifier 3260 (I have an extra one and will send it for you want me to. 2.Salter High Flow Nasal Cannula and tubing..SAL1600 HF-7-25 I believe that Apria people say anything just so they dont have to look for something for you. My husband believes that they probably bill the insurance companies just like they gave it to you, but didnt. Would be interesting to know. I have had a very bad day....dont kow if I can take another one. My husband wanted to call the Dr. But I knew that she would hospitalize me and I really think that when I

go into the hospital, I will not return. He cried tonight. This is the first time I have seen him break down. He has always been so strong. I have been having much pain. Feels like I am in a vice..between my back and front. Just squeezing tighter. As much as I dont want to, I have had to take the oxycontin many times today. Oh well, tomorrow is another day I guess. L. Re: NOT great news!> > > Hi Joyce,> I use a simple mask to sleep with, I am a mouth breather. Can't seem to help it when I'm sleeping. The mask is for high concentration a re breather and it will help you walking and doing things. I get 4 mask a month and of both kinds and 4 cannula. Sometimes the bags one are a little troublesome. The re breather or non re breather mask have to be used without a water bottle and I se the water bottle on the concentrator and because they didn't want to give me more tanks than the 10 a month and that wasn't enough for me to get around in and out of the house, so they decided to give me a liquid tank to use in the house when I exert. I haven't been able to get around on my own for almost 2 years now. I'm depend on my wonderful husband for everything. God knew who I needed and I thanks Him

regularly for him. I have to take my concentrator when I go someplace. I have the big M60 tank that last about 3 hours in the car and we can connect a water bottle to it and that helps. There is also a cann ease that you can buy that is good for the nose. THeir number is 1-. I have also found that using a mask on top of your cannula when your sats are low helps to bring it up faster. I have a mask sitting beside me at all time, I cut the cord off and just use the mask part also used that last winter and it helps to get the cold out so many uses for the mask.> > I don't consider what I have lost but want I have gained, more time with hubby (love that as we were always close). Time with God,time to read and crochet and share with others.> I have my good days and although sometimes that are scarce, I try to find good in the bad days and don't let that steal my joy, as your joy is your strength. >

> God bless> Donna> Sarcoid/PF 3/2006

Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.

September 24, 2007

, You are an amazing woman! How in the world are you able to chat with us amidst all the pain? You are truly an inspiration to all of us. I am praying that God takes away your pain today and that you get a good night's rest and a pain free day tomorrow. God bless you- Lentz wrote: Joyce, As par for the course, Apria did not come today as scheduled. Who knows the reason today! Anyway,

here is what you requested. l. Hudson RCI High Flow Humidifier 3260 (I have an extra one and will send it for you want me to. 2.Salter High Flow Nasal Cannula and tubing..SAL1600 HF-7-25 I believe that Apria people say anything just so they dont have to look for something for you. My husband believes that they probably bill the insurance companies just like they gave it to you, but didnt. Would be interesting to know. I have had a very bad day....dont kow if I can take another one. My husband wanted to call the Dr. But I knew that she would hospitalize me and I really think that when I

go into the hospital, I will not return. He cried tonight. This is the first time I have seen him break down. He has always been so strong. I have been having much pain. Feels like I am in a vice..between my back and front. Just squeezing tighter. As much as I dont want to, I have had to take the oxycontin many times today. Oh well, tomorrow is another day I guess. L. Re: NOT great news!> > > Hi Joyce,> I use a simple mask to sleep with, I am a mouth breather. Can't seem to help it when I'm sleeping. The mask is for high concentration a re breather and it will help you walking and doing things. I get 4 mask a month and of both kinds and 4 cannula. Sometimes the bags one are a little troublesome. The re breather or non re breather mask have to be used without a water bottle and I se the water bottle on the concentrator and because they didn't want to give me more tanks than the 10 a month and that wasn't enough for me to get around in and out of the house, so they decided to give me a liquid tank to use in the house when I exert. I haven't been able to get around on my own for almost 2 years now. I'm depend on my wonderful husband for everything. God knew who I needed and I thanks Him

regularly for him. I have to take my concentrator when I go someplace. I have the big M60 tank that last about 3 hours in the car and we can connect a water bottle to it and that helps. There is also a cann ease that you can buy that is good for the nose. THeir number is 1-. I have also found that using a mask on top of your cannula when your sats are low helps to bring it up faster. I have a mask sitting beside me at all time, I cut the cord off and just use the mask part also used that last winter and it helps to get the cold out so many uses for the mask.> > I don't consider what I have lost but want I have gained, more time with hubby (love that as we were always close). Time with God,time to read and crochet and share with others.> I have my good days and although sometimes that are scarce, I try to find good in the bad days and don't let that steal my joy, as your joy is your strength. >

> God bless> Donna> Sarcoid/PF 3/2006

Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.

September 24, 2007

, You are an amazing woman! How in the world are you able to chat with us amidst all the pain? You are truly an inspiration to all of us. I am praying that God takes away your pain today and that you get a good night's rest and a pain free day tomorrow. God bless you- Lentz wrote: Joyce, As par for the course, Apria did not come today as scheduled. Who knows the reason today! Anyway,

here is what you requested. l. Hudson RCI High Flow Humidifier 3260 (I have an extra one and will send it for you want me to. 2.Salter High Flow Nasal Cannula and tubing..SAL1600 HF-7-25 I believe that Apria people say anything just so they dont have to look for something for you. My husband believes that they probably bill the insurance companies just like they gave it to you, but didnt. Would be interesting to know. I have had a very bad day....dont kow if I can take another one. My husband wanted to call the Dr. But I knew that she would hospitalize me and I really think that when I

go into the hospital, I will not return. He cried tonight. This is the first time I have seen him break down. He has always been so strong. I have been having much pain. Feels like I am in a vice..between my back and front. Just squeezing tighter. As much as I dont want to, I have had to take the oxycontin many times today. Oh well, tomorrow is another day I guess. L. Re: NOT great news!> > > Hi Joyce,> I use a simple mask to sleep with, I am a mouth breather. Can't seem to help it when I'm sleeping. The mask is for high concentration a re breather and it will help you walking and doing things. I get 4 mask a month and of both kinds and 4 cannula. Sometimes the bags one are a little troublesome. The re breather or non re breather mask have to be used without a water bottle and I se the water bottle on the concentrator and because they didn't want to give me more tanks than the 10 a month and that wasn't enough for me to get around in and out of the house, so they decided to give me a liquid tank to use in the house when I exert. I haven't been able to get around on my own for almost 2 years now. I'm depend on my wonderful husband for everything. God knew who I needed and I thanks Him

regularly for him. I have to take my concentrator when I go someplace. I have the big M60 tank that last about 3 hours in the car and we can connect a water bottle to it and that helps. There is also a cann ease that you can buy that is good for the nose. THeir number is 1-. I have also found that using a mask on top of your cannula when your sats are low helps to bring it up faster. I have a mask sitting beside me at all time, I cut the cord off and just use the mask part also used that last winter and it helps to get the cold out so many uses for the mask.> > I don't consider what I have lost but want I have gained, more time with hubby (love that as we were always close). Time with God,time to read and crochet and share with others.> I have my good days and although sometimes that are scarce, I try to find good in the bad days and don't let that steal my joy, as your joy is your strength. >

> God bless> Donna> Sarcoid/PF 3/2006

Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.

September 25, 2007

Hi Joyce,

It was Apria's choice when I changed to liquid to bring two Caire

Liberator 45 liter units ... each unit only goes to 6 liter flow ...

at the time this was NOT a problem ... I was at 5 liter flow ... when

I got to 5 1/2 the Apria driver showed how to use the Y connector and

7 foot tubing to join the two so one tank is at 2 while the other is

at 2 1/2 ... I kinda forgot as my liter flow has been creeping up to 6

then 6 1/2 and now 7 (7 1/2 for shower) that they only each go to 6

liter flow ...

Last night I was researching the Caire Liberator Patient

Operating Manual ... I must have old ones as the new ones go to 15

liter flow ... I was checking the manuals to see how you are going to

get by on only one liquid tank ... the manual indicated one 45 liter

tank at 6.0 liter flow as 4 days 10 hours duration time ... while one

45 liter tank at 8.0 liter flow as 3 days 7 hours ... somehow I'm

making it weekly with the two 45 liter tanks at 7 liter flow ... with

extra to spare if Apria was late a day or two ...

The only way for you to survive on one tank is for Apria to come

to your house twice a week to fill the tank ... besides an

inconvenience to you I don't see that as cost effective to Apria ...

I've always wondered why they did NOT give me three 45 liter tanks and

come every other week ... but then again I'm NOT the bean counter so

what do I know ...

As for the oxygen supplies I just call the local number and speak

with a customer service representative ... recently they are much

politer and helpful ... seems they are upgrading their services ... I

read my list ... one by one ... make sure the rep understands before I

give the next item ... most are in a hurry ... I've learned to say

there is more ... and just continue ... in a few days I receive the

supplies by UPS ... that's NOT how it used to be ... I've been told

Apria is upgrading their image and service ... I hope it continues ...

the last few months it has been nice to receive what you order and NOT

have to continually follow up ...

GOOD LUCK ... let me know how it goes with your order ...

Take Care,

Janine

California

Oxygen 24/7 dx Feb 02

NonSpecific Interstitial Pneumonia dx Oct 03

Breast Cancer dx Nov 04

Transplant Evaluation terminated Dec 04

(must be cancer free five years)

Pulmonary Hypertension dx Apr 07

THIS IS YOUR LIFE ... GETTING TO BREATHE ...

From: " Joyce "

X-Yahoo-Profile: janne5303

Date: Mon, 24 Sep 2007 23:56:16 -0000

Subject: Re: NOT great news!

Reply-To:

Breathe-Support

Janine,

Yes,

it probably is the one that I need. I just hope that I get it in

my lifetime.

Why

do you have two 5L concentrator instead of one ten? Was that

your choice?

Thanks, Hugs, Joyce D.

PULMONARY FIBROSIS/LUPUS

1997 BRONCHIECTASIS 2004

INDIANA

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

I am strong.

> >>

> >> Donna,

> >> I read your letter to Joyce and have some questions. I

use the

> >>mask also at night. One reason is because it gives my

nose a rest

> >>and also I am a mouth breather at night but I did not

know that you

> >>were not supposed to use a water bottle. I always make

sure that

> >>mine is full.

> >> Please tell me the reasoning for this. I also will use

the mask if

> >>I am needing to walk around the house etc. It is also

good if there

> >>is a strong smell in the house. Sometimes dishwasher

detergent will

> >>cause me to lose my breath. Lots of reasons for th mask.

My dog

> >>will try to take it off of me , guess he thinks sometime

is wrong

> >>wh en I wear it. I use a high flow cannula and tubing

which cuts

> >>down on the noise in my ears/nose. Cannulas are the one

thing that

> >>Apria never minds giving me.but I always have to ask for

the

> >>hi-flow ones. Just curious..what setting do you have to

use? I use

> >>10L when exerting but able to only use 8L when I sit and

dont talk.

> >>Talking is alot of exertion sometimes.

> >> Thanks for your letter to Joyce. You helped me.

> >> L

> >> Re: NOT great news!

> >>

> >> Hi Joyce,

> >> I use a simple mask to sleep with, I am a mouth

breather. Can't

> >>seem to help it when I'm sleeping. The mask is for

high

> >>concentration a re breather and it will help you walking

and doing

> >>things. I get 4 mask a month and of both kinds and 4

cannula.

> >>Sometimes the bags one are a little troublesome. The re

breather or

> >>non re breather mask have to be used without a water

bottle and I

> >>se the water bottle on the concentrator and because they

didn't

> >>want to give me more tanks than the 10 a month and that

wasn't

> >>enough for me to get around in and out of the house, so

they

> >>decided to give me a liquid tank to use in the house when

I exert.

> >>I haven't been able to get around on my own for almost 2

years now.

> >>I'm depend on my wonderful husband for everything. God

knew who I

> >>needed and I thanks Him regularly for him. I have to take

my

> >>concentrator when I go someplace. I have the big M60 tank

that last

> >>about 3 hours in the car and we can connect a water

bottle to it

> >>and that helps. There is also a cann ease that you can

buy that is

> >>good for the nose. THeir number is 1-. I have

also

> >>found that using a mask on top of your cannula when your

sats are

> >>low helps to bring it up faster. I have a mask sitting

beside me at

> >>all time, I cut the cord off and just use the mask part

also used

> >>that last winter and it helps to get the cold out so many

uses for

> >>the mask.

> > >

> >> I don't consider what I have lost but want I have

gained, more

> >>time with hubby (love that as we were always close). Time

with

> >>God,time to read and crochet and share with others.

> >> I have my good days and although sometimes that are

scarce, I try

> >>to fin d good in the bad

days and don't let that steal my joy, as

> >>your joy is your strength.

> >>

> >> God bless

> > > Donna

> >>

> >

>

September 25, 2007