My first post

[Guest guest]

Arianne,

Welcome to the group, bittersweet as it is.....I have been a member for about a month now and this group is the best. I live in Indianapolis.....59 years old and was diagnosed three years ago.

Patti Indianapolis IPF 2007

[Guest guest]

Ann, Welcome to the "air family".

You have definitely found the right place

to get information and support. I've been here since December of

2006..DX'd 2005.

This is an intelligent, wonderfully supportive group of people from all

over the country and world.

Ask anything, rant , laugh, tell us a joke or share our feelings.

We've " all been there, done that and have the pictures to prove it"

Actually there are really great photo albums to look at to get to know

us.

Add your own when you can.

I'm sorry that you needed to find us,..but you are fortunate to have

done so.

Welcome.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

arianne377 wrote:

Hello everyone. I signed on a week or so ago, have read most of

the files and all of the messages since then.

My name is Ann, I reside in Massachusetts and am 70 years old. I have

had 2 hip replacements, one in August of 2006 and the other in January

of 2007. Other than that I have only had gall bladder surgery and a

radical mastoidectomy.

In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis.

I had never heard of this before my dx.

I really thought I had COPD, but the pulmonary doc said no. It's when

he told me that he has a patient who had had it for five years and is

doing well, that I began to see the seriousness of it all. He also said

there is no cure, but suggested that I try NAC as his long-term patient

uses it and says it works well for her. Needless to say I got it and am

on my first refill.

I saw this pulmonary doc on November 7 and again on December 28. At my

first visit he took me for a walk with an oxometer and I dropped to 75.

In December I dropped to 82. I'm sorry but I don't know all of the

medical terms as of yet, but sure I will learn. At my first visit he

told me I need oxygen when walking. When the Oxygen Company visited my

home, they brought the whole store with them. I panicked. They told me

that the doctor had ordered oxygen 24/7 at level 2. The doctor also

told me that I could get a small container that would fit on my belt.

The company told me there was nothing like that. On my second doctor

visit, I asked him about it and he said that he would find a company

that would supply me with one. That company turned out to be the very

same company that I first dealt with.

This past Monday, a therapist from this company came to my home to test

me for an oxygen system that would only provide oxygen as needed. She

took me for several walks around my house and up and down the stairs,

and I failed on every level. It was only as she was about to leave the

house that she noticed that the doctor had written a script for liquid

oxygen. I don't want, nor will I use it.

My husband and I travel often and the liquid would not work, yet the

other so-called portable tanks only supply 45 minutes of oxygen. The

therapist also told me that the doctor wrote the script for level 2

oxygen at rest, and level 3 with strenuous activity. He mentioned

nothing about this to me.

My oxygen is at 96% at rest and the therapist said that although it

dropped when walking and climbing stairs, I have an immediate recovery

when I sit.

Needless to say I have not been myself since November. The more I find

out about this disease, the more depressed I become. I have to talk

myself out of bed every morning and force myself to do simple chores

around the house.

I am glad I found this group as you all seem so positive, and I need

that. I know I have rambled and perhaps don't make sense, but I just

needed to finally introduce myself and hope some of you can help me

through your experiences. Thanks

[Guest guest]

Arianne,

Welcome to the group. I, too, am 70 and my diagnosis was like a bolt from the blue since I was practically asymptomatic. My most apparent clue was my fingernails...an unlikely part of my anatomy that I attributed little

importance to as a barometer of my health. I considered it only a vanity issue.

It is difficult for me to accept a serious health concern when I have lots of energy and sustained physical strength. However, I am learning that being superwoman is hazardous to my health so I am trying to learn how to cope.

You will learn so much by listening to all these vetrens of this disease. Their resilience is amazing and inspiring. It is good to hear from those whose frustrations and disappointments are expressed here also. It makes us all stronger and humbler. I, too, am just learning to "speak the language" but everyone is patient and kind in that regard.

This support group will raise you up on days when you need it so embrace this wealth of information, good humor and friends. We are all here to help.

Bettye Kline 70,MS dx 06/09

To: Breathe-Support Sent: Thu, January 14, 2010 7:19:22 PMSubject: My first post

Arianne,

Welcome to the group, bittersweet as it is.....I have been a member for about a month now and this group is the best. I live in Indianapolis. ....59 years old and was diagnosed three years ago.

Patti Indianapolis IPF 2007

[Guest guest]

Ann, I would like to add that when you com to this site and read and read and read sometimes you will leave and be very saddened for all of the info that is here. But after I have cried I come back and then there is something new that I have learned. Why am I sad when I leave this site sometimes? Because I have gotten to know some really nice people and as I said to Bruce obviously not personally but I like reading about Peggy and her new mobility and about the excitement of others who love their family and show us through pictures. I still cry but I am learning things that I would not know or would not know to ask the doctor. I guess my only regret right now is not knowing anyone in New York with this disease to hug and tell them it's okay. Here's my hug for

you.!!To: Breathe-Support Sent: Thu, January 14, 2010 11:19:49 PMSubject: Re: Re: My first post

Ditto to what Bruce was telling you. And you are going to be ok just take each day as it comes and get out of bed, I remember when I was diagnosed they called me on the phone and told me, and i went to the internet and looked it up. Yep scared the sHit right out of me and still does But with the help of this group and I trully mean that, there are no other people that I would rather vent to because we all are dealing with the same crappy disease, and everyone here knows how each other feels. Keep on venting. As for the oxygen thing I have a Sequel and I really like. It My batteries last two and half hours on a constant 2. They gave me 2 batteries. Then the ac adapter, and a dc adapter that I can take with me in the car. Will this work for me later on I don't

know but I like it for now.You will be ok Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, January 14, 2010 8:52:40 PMSubject: Re: My first post

Ann

Plain and simply you desperately need to get to a doctor who deals with

Interstitial Lung Diseases all the time. You need one who sees hundreds

of PF patients, not a few. The best place is a teaching hospital that

has an ILD center. I don't know what part of Mass you're in but Yale has

one. I also know patients who go to Brigham and Womens and like it. In

New York, Columbia and Cornell are excellent. Now what many do is go to

an ILD center and then continue to use another pulmonologist for day to

day issues.

How were you diagnosed? On the basis of CT's? PFT's? You need to get

your own oximeter to so you can monitor under different conditions. With

COPD the variations in need aren't normally great but with PF they vary

greatly between rest and activity. If you're maintaining at 96% at rest

you're typical of earlier stages and may not even need oxygen when at

rest. Have you had an overnight oximeter? You're very likely to need

oxygen for sleep. As to activity, different activity may require

different amounts. I was a bit shocked they let you drop to 75% on a 6

minute walk. They should have stopped it and/or gotten you oxygen. As to

the therapist and your immediate recovery when you sit, it's still not

good to drop to those levels. While oxygen will help you with less

shortness of breath and make you feel better, I'm not sure anyone has

explained the more critical reason for it. That is to protect your

organs, especially your right side of your heart. Dropping below 90% or

so does risk damage and Pulmonary Hypertension developing.

As to types of oxygen equipment, I would recommend an appointment with

the manager of the office of the supplier you're using. Talk to him

about your needs and work out a solution together in a face to face

meeting. They are also use to COPD patients and many who don't seek

mobility. Solicit his help. If that fails then it becomes time to search

for different suppliers. There are many equipment oxygens and ultimately

pretty much anything is possible with oxygen.

I'm a bit surprised at your definitive statement that liquid will not

work for travel as I do quite a bit of traveling. Now, that doesn't mean

its right for you. But, on all oxygen there are tanks to provide you

varying lengths of time. On gaseous oxygen they would use conservers to

do so.

I know it doesn't seem like it but life can be good with PF. Feel free

to ask any and all questions.

>

> Hello everyone. I signed on a week or so ago, have read most of the

files and all of the messages since then.

> My name is Ann, I reside in Massachusetts and am 70 years old. I have

had 2 hip replacements, one in August of 2006 and the other in January

of 2007. Other than that I have only had gall bladder surgery and a

radical mastoidectomy.

> In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis.

I had never heard of this before my dx.

> I really thought I had COPD, but the pulmonary doc said no. It's when

he told me that he has a patient who had had it for five years and is

doing well, that I began to see the seriousness of it all. He also said

there is no cure, but suggested that I try NAC as his long-term patient

uses it and says it works well for her. Needless to say I got it and am

on my first refill.

> I saw this pulmonary doc on November 7 and again on December 28. At my

first visit he took me for a walk with an oxometer and I dropped to 75.

In December I dropped to 82. I'm sorry but I don't know all of the

medical terms as of yet, but sure I will learn. At my first visit he

told me I need oxygen when walking. When the Oxygen Company visited my

home, they brought the whole store with them. I panicked. They told me

that the doctor had ordered oxygen 24/7 at level 2. The doctor also told

me that I could get a small container that would fit on my belt. The

company told me there was nothing like that. On my second doctor visit,

I asked him about it and he said that he would find a company that would

supply me with one. That company turned out to be the very same company

that I first dealt with.

> This past Monday, a therapist from this company came to my home to

test me for an oxygen system that would only provide oxygen as needed.

She took me for several walks around my house and up and down the

stairs, and I failed on every level. It was only as she was about to

leave the house that she noticed that the doctor had written a script

for liquid oxygen. I don't want, nor will I use it.

> My husband and I travel often and the liquid would not work, yet the

other so-called portable tanks only supply 45 minutes of oxygen. The

therapist also told me that the doctor wrote the script for level 2

oxygen at rest, and level 3 with strenuous activity. He mentioned

nothing about this to me.

> My oxygen is at 96% at rest and the therapist said that although it

dropped when walking and climbing stairs, I have an immediate recovery

when I sit.

> Needless to say I have not been myself since November. The more I find

out about this disease, the more depressed I become. I have to talk

myself out of bed every morning and force myself to do simple chores

around the house.

> I am glad I found this group as you all seem so positive, and I need

that. I know I have rambled and perhaps don't make sense, but I just

needed to finally introduce myself and hope some of you can help me

through your experiences. Thanks

>

[Guest guest]

6 to 8 liters per minute - lpm's the amount of oxygen that you are receiveing

i think you said you are still on 2 lpms

the concentrator is a machine that uses electricity, it's used in the house

i have a 50 foot tube attached to mine and can walk into all the rooms in my house

look up oxygen equipment on line so you can see pictures of everything

one day a couple of years ago, i went to a supplier's showroom to see the various options

the e tank is a metal canister of o2 that you can take with you

the metal tanks are different sizes and are labeled with the alphabet

the tanks last various times due to the size of the tank and the liters per minute that you use

whether or not it is continuous or on demand

my liquid portable gets filled every day, if i am very active and going out again, i refill it

sometimes, i carry back up metal tanks just in case the liquid portable runs out

as you use the equipment, you will get used to what your needs are

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: My first postTo: Breathe-Support Date: Thursday, January 14, 2010, 7:58 PM

I don't understand what 6-8 leaders is or what a concentrator and E tank is. Would you please explain? My doctor hasn't ordered an overnight saturation yet, nor has he mentioned it. I ordered an oximeter yesterday through Amazon that should arrive within a few days. When I last saw my Primary doctor in Dec., he said that my lungs are clear. The same was said by the pulmonary doctor when I saw him a week or so later. Is that good news? How long will a portable (carry type) tank last if I should want to use it while on vacation? Thank you for the welcome.

----- "Peggy " <pac1773@centurylink .net> wrote: > > > > Hi Ann, We are always so sad to need to welcome newbies but you are most welcome here to this Air Family. I understand the fear and confusion about this disease.

I also have IPF. I am 67 years old.

I was diagnosed in June 2004 so I am 5 1/2 years now. I know the 02 is scary to begin with but it is just so doable.. I am on 6 to 8 Leaders sitting and 12 to 15 when I am walking around. (which isn't much now days.) I have two concentrators and use the E tanks. I am right now using them to go to church when I can. You will feel

so much better using it. Has your Dr. ordered an overnight saturation with an oximeter that tapes on your finger. Usually we need to sleep with 02 because we breathe

very shallow while sleeping. You should probably ask about it.

>

Be sure to stay in touch and ask any questions you have. We do have a wealth of information here in this group.

God Bless.>

>

Love & Prayers

Peggy, IPF 2004

>

>

> >

> >

[Guest guest]

Ann,

My story is very similar to Joyce......I was diagnosed in my home town and when I did not want to go on Prednisone when my local pulmo dr suggested it, I went to University of Chicago and after 5 hours of tests they think my PF has been caused by a drug I took for years for bladder infections called Macrobid.....they are not 100% sure, but it is a start....I go back in Feb.

I completely agree with Bruce.....get to a learning center that specializes in lung disease.

Patti Indianapolis PF 2007

[Guest guest]

MARY.....WELL SAID!

Patti Indianapolis PF 2007

[Guest guest]

Ariann Your situation is very much like mine. I am 71 had both hips replaced and one shoulder. I now have a knee that is acting up. I became very short of breathe about a year ago and after going through test they diagnosed IPF in June. I had been on a c pap for two years and am now on it with oxygen at night. My situation is a lot like yours. My level is good when I am setting or doing light work but falls during exertion ( 70 and 80's) I have a unit that works well for me and might you too. The machine is capable of filling my oxygen tanks (portable) which I use when shopping, walking, and heavy cleaning. The machine is hooked up to my c pap at night. I have two tanks, one I use at home and one I carry in my car for shopping. I just had a pulmonary function test and a cat scan but dont have the results yet. I am anxious to see if they have changed since

my test in June. My sister has IPF and Copd and goes to the same Dr. He told her that this condition IPF is an inherited disease which is good to know for family. Barb

barbara jean

To: Breathe-Support Sent: Thu, January 14, 2010 5:26:27 PMSubject: My first post

Hello everyone. I signed on a week or so ago, have read most of the files and all of the messages since then.My name is Ann, I reside in Massachusetts and am 70 years old. I have had 2 hip replacements, one in August of 2006 and the other in January of 2007. Other than that I have only had gall bladder surgery and a radical mastoidectomy.In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis. I had never heard of this before my dx.I really thought I had COPD, but the pulmonary doc said no. It's when he told me that he has a patient who had had it for five years and is doing well, that I began to see the seriousness of it all. He also said there is no cure, but suggested that I try NAC as his long-term patient uses it and says it works well for her. Needless to say I got it and am on my first refill.I saw this pulmonary doc on November 7 and again on December 28. At my first visit he took me for a walk with an oxometer

and I dropped to 75. In December I dropped to 82. I'm sorry but I don't know all of the medical terms as of yet, but sure I will learn. At my first visit he told me I need oxygen when walking. When the Oxygen Company visited my home, they brought the whole store with them. I panicked. They told me that the doctor had ordered oxygen 24/7 at level 2. The doctor also told me that I could get a small container that would fit on my belt. The company told me there was nothing like that. On my second doctor visit, I asked him about it and he said that he would find a company that would supply me with one. That company turned out to be the very same company that I first dealt with.This past Monday, a therapist from this company came to my home to test me for an oxygen system that would only provide oxygen as needed. She took me for several walks around my house and up and down the stairs, and I failed on every level. It was only as she was about to leave

the house that she noticed that the doctor had written a script for liquid oxygen. I don't want, nor will I use it. My husband and I travel often and the liquid would not work, yet the other so-called portable tanks only supply 45 minutes of oxygen. The therapist also told me that the doctor wrote the script for level 2 oxygen at rest, and level 3 with strenuous activity. He mentioned nothing about this to me.My oxygen is at 96% at rest and the therapist said that although it dropped when walking and climbing stairs, I have an immediate recovery when I sit. Needless to say I have not been myself since November. The more I find out about this disease, the more depressed I become. I have to talk myself out of bed every morning and force myself to do simple chores around the house.I am glad I found this group as you all seem so positive, and I need that. I know I have rambled and perhaps don't make sense, but I just needed to finally

introduce myself and hope some of you can help me through your experiences. Thanks

[Guest guest]

Barbara and everyone, I cannot relay how much I appreciate the overwhelming welcome you have given me. I thank you from the bottom of my heart. My husband is such a rock but I know that I can get complete understanding here. I am so glad I found you all. In other Yahoo groups I belong to I always posted from the group home page. However, I was informed last night that there is a virus that is only active when posting from the yahoo groups page, so I will reply to posts by way of email for the time being. Be careful if you go on the groups page. I have a Mac so may not be at risk but I don't want to take the chance.----- "barbara carr" wrote:

>

> > > >

Ariann Your situation is very much like mine. I am 71 had both hips replaced and one shoulder. I now have a knee that is acting up. I became very short of breathe about a year ago and after going through test they diagnosed IPF in June. I had been on a c pap for two years and am now on it with oxygen at night. My situation is a lot like yours. My level is good when I am setting or doing light work but falls during exertion ( 70 and 80's) I have a unit that works well for me and might you too. The machine is capable of filling my oxygen tanks (portable) which I use when shopping, walking, and heavy cleaning. The machine is hooked up to my c pap at night. I have two tanks, one I use at home and one I carry in my car for shopping.> I just had a pulmonary function test and a cat scan but dont have the results yet. I am anxious to see if they have changed since

my test in June. My sister has IPF and Copd and goes to the same Dr. He told her that this condition IPF is an inherited disease which is good to know for family. Barb

barbara jean >

> > >

> To: Breathe-Support > Sent: Thu, January 14, 2010 5:26:27 PM> Subject: My first post> > > Hello everyone. I signed on a week or so ago, have read most of the files and all of the messages since then.> My name is Ann, I reside in Massachusetts and am 70 years old. I have had 2 hip replacements, one in August of 2006 and the other in January of 2007. Other than that I have only had gall bladder surgery and a radical mastoidectomy.> In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis. I had never heard of this before my dx.> I really thought I had COPD, but the pulmonary doc said no. It's when he told me that he has a patient who had had it for five years and is doing well, that I began to see the seriousness of it all. He also said there is no cure, but suggested that I try NAC as his long-term patient uses it and says it works well for her. Needless to say I got it and am on my first refill.> I saw this pulmonary doc on November 7 and again on December 28. At my first visit he took me for a walk with an oxometer

and I dropped to 75. In December I dropped to 82. I'm sorry but I don't know all of the medical terms as of yet, but sure I will learn. At my first visit he told me I need oxygen when walking. When the Oxygen Company visited my home, they brought the whole store with them. I panicked. They told me that the doctor had ordered oxygen 24/7 at level 2. The doctor also told me that I could get a small container that would fit on my belt. The company told me there was nothing like that. On my second doctor visit, I asked him about it and he said that he would find a company that would supply me with one. That company turned out to be the very same company that I first dealt with.> This past Monday, a therapist from this company came to my home to test me for an oxygen system that would only provide oxygen as needed. She took me for several walks around my house and up and down the stairs, and I failed on every level. It was only as she was about to leave

the house that she noticed that the doctor had written a script for liquid oxygen. I don't want, nor will I use it. > My husband and I travel often and the liquid would not work, yet the other so-called portable tanks only supply 45 minutes of oxygen. The therapist also told me that the doctor wrote the script for level 2 oxygen at rest, and level 3 with strenuous activity. He mentioned nothing about this to me.> My oxygen is at 96% at rest and the therapist said that although it dropped when walking and climbing stairs, I have an immediate recovery when I sit. > Needless to say I have not been myself since November. The more I find out about this disease, the more depressed I become. I have to talk myself out of bed every morning and force myself to do simple chores around the house.> I am glad I found this group as you all seem so positive, and I need that. I know I have rambled and perhaps don't make sense, but I just needed to finally

introduce myself and hope some of you can help me through your experiences. Thanks> >

>

>

[Guest guest]

Arianne

I do not know where you were given such information but while someone

may have somehow forwarded and snuck a virus into some group postings or

emails somewhere, it would be the same if it existed whether or not you

used the group postings or emails. Ultimately yahoo group postings are

all email system based. The most recent ones reported were actually

coming from people who set up groups and were moderators just for the

purpose of trying to spoof and the viruses were sent by those people out

as zip files.

All files that are sent to yahoo groups and all posts are taken through

yahoo's security programs which historically have been very good. The

only other thing I would say is the everyone should have virus software

on their email.

Now, there have been groups where links were posted to take you to a

dangerous site. This is groups that don't screen their members well and

allow spammers and spoofers in. This group hasn't had that issue. We

only have had one spammer of significance that I can recall and she was

quickly deleted. If you do get email directly from a member ever that

you don't expect and it has links or file attachments, I'd advise as

always not to open. But, in general, yahoo groups such as this one are

very safe and I wouldn't want anyone to be scared to post her. You're

welcome certainly to post by email but I'm just saying this more for

others as I am not aware of any risk that currently exists here. Many

times we are informed of viruses that may or may not exist or may have

been received in much different ways. If you were going to get a virus

however, it's not going to come in posting, but rather in receiving or

in opening links.

> >

> >

> >

> >

>

>

> >

>

> Ariann Your situation is very much like mine. I am 71 had both hips

replaced and one shoulder. I now have a knee that is acting up. I became

very short of breathe about a year ago and after going through test they

diagnosed IPF in June. I had been on a c pap for two years and am now on

it with oxygen at night. My situation is a lot like yours. My level is

good when I am setting or doing light work but falls during exertion (

70 and 80's) I have a unit that works well for me and might you too. The

machine is capable of filling my oxygen tanks (portable) which I use

when shopping, walking, and heavy cleaning. The machine is hooked up to

my c pap at night. I have two tanks, one I use at home and one I carry

in my car for shopping.

> > I just had a pulmonary function test and a cat scan but dont have

the results yet. I am anxious to see if they have changed since my test

in June. My sister has IPF and Copd and goes to the same Dr. He told her

that this condition IPF is an inherited disease which is good to know

for family. Barb

> barbara jean

>

> >

> >

> >

> >

> From: arianne377 Arianne377@...

> > To: Breathe-Support

> > Sent: Thu, January 14, 2010 5:26:27 PM

> > Subject: My first post

> >

> >

> >

>

> Hello everyone. I signed on a week or so ago, have read most of the

files and all of the messages since then.

> > My name is Ann, I reside in Massachusetts and am 70 years old. I

have had 2 hip replacements, one in August of 2006 and the other in

January of 2007. Other than that I have only had gall bladder surgery

and a radical mastoidectomy.

> > In November of 2009 I was diagnosed with Idiopathic Pulmonary

Fibrsis. I had never heard of this before my dx.

> > I really thought I had COPD, but the pulmonary doc said no. It's

when he told me that he has a patient who had had it for five years and

is doing well, that I began to see the seriousness of it all. He also

said there is no cure, but suggested that I try NAC as his long-term

patient uses it and says it works well for her. Needless to say I got it

and am on my first refill.

> > I saw this pulmonary doc on November 7 and again on December 28. At

my first visit he took me for a walk with an oxometer and I dropped to

75. In December I dropped to 82. I'm sorry but I don't know all of the

medical terms as of yet, but sure I will learn. At my first visit he

told me I need oxygen when walking. When the Oxygen Company visited my

home, they brought the whole store with them. I panicked. They told me

that the doctor had ordered oxygen 24/7 at level 2. The doctor also told

me that I could get a small container that would fit on my belt. The

company told me there was nothing like that. On my second doctor visit,

I asked him about it and he said that he would find a company that would

supply me with one. That company turned out to be the very same company

that I first dealt with.

> > This past Monday, a therapist from this company came to my home to

test me for an oxygen system that would only provide oxygen as needed.

She took me for several walks around my house and up and down the

stairs, and I failed on every level. It was only as she was about to

leave the house that she noticed that the doctor had written a script

for liquid oxygen. I don't want, nor will I use it.

> > My husband and I travel often and the liquid would not work, yet the

other so-called portable tanks only supply 45 minutes of oxygen. The

therapist also told me that the doctor wrote the script for level 2

oxygen at rest, and level 3 with strenuous activity. He mentioned

nothing about this to me.

> > My oxygen is at 96% at rest and the therapist said that although it

dropped when walking and climbing stairs, I have an immediate recovery

when I sit.

> > Needless to say I have not been myself since November. The more I

find out about this disease, the more depressed I become. I have to talk

myself out of bed every morning and force myself to do simple chores

around the house.

> > I am glad I found this group as you all seem so positive, and I need

that. I know I have rambled and perhaps don't make sense, but I just

needed to finally introduce myself and hope some of you can help me

through your experiences. Thanks

> >

> >

>

>

> >

> >

>

[Guest guest]

Patti,

I do hope that my memory is correct that your diagnosis is drug induced (Macrobid) PF. I promised to get back to you in Jan as I have questions. Please let me know if I am correct or mistaken.

Bettye Kline

To: Breathe-Support Sent: Fri, January 15, 2010 7:47:11 AMSubject: Re: Re: My first post

MARY.....WELL SAID!

Patti Indianapolis PF 2007

[Guest guest]

Thanks Bruce. I was only relaying what was sent to me last night from my music group. ----- "Bruce" wrote:

>

> > > Arianne> > I do not know where you were given such information but while someone> may have somehow forwarded and snuck a virus into some group postings or> emails somewhere, it would be the same if it existed whether or not you> used the group postings or emails. Ultimately yahoo group postings are> all email system based. The most recent ones reported were actually> coming from people who set up groups and were moderators just for the> purpose of trying to spoof and the viruses were sent by those people out> as zip files.> > All files that are sent to yahoo groups and all posts are taken through> yahoo's security programs which historically have been very good. The> only other thing I would say is the everyone should have virus software> on their email.> > Now, there have been groups where links were posted to take you to a> dangerous site. This is groups that don't screen their members well and> allow spammers and spoofers in. This group hasn't had that issue. We> only have had one spammer of significance that I can recall and she was> quickly deleted. If you do get email directly from a member ever that> you don't expect and it has links or file attachments, I'd advise as> always not to open. But, in general, yahoo groups such as this one are> very safe and I wouldn't want anyone to be scared to post her. You're> welcome certainly to post by email but I'm just saying this more for> others as I am not aware of any risk that currently exists here. Many> times we are informed of viruses that may or may not exist or may have> been received in much different ways. If you were going to get a virus> however, it's not going to come in posting, but rather in receiving or> in opening links.> > > > >> > >> > >> > >> >> >> > >> >> > Ariann Your situation is very much like mine. I am 71 had both hips> replaced and one shoulder. I now have a knee that is acting up. I became> very short of breathe about a year ago and after going through test they> diagnosed IPF in June. I had been on a c pap for two years and am now on> it with oxygen at night. My situation is a lot like yours. My level is> good when I am setting or doing light work but falls during exertion (> 70 and 80's) I have a unit that works well for me and might you too. The> machine is capable of filling my oxygen tanks (portable) which I use> when shopping, walking, and heavy cleaning. The machine is hooked up to> my c pap at night. I have two tanks, one I use at home and one I carry> in my car for shopping.> > > I just had a pulmonary function test and a cat scan but dont have> the results yet. I am anxious to see if they have changed since my test> in June. My sister has IPF and Copd and goes to the same Dr. He told her> that this condition IPF is an inherited disease which is good to know> for family. Barb> > barbara jean> >> > >> > >> > >> > >> > > > To: Breathe-Support > > > Sent: Thu, January 14, 2010 5:26:27 PM> > > Subject: My first post> > >> > >> > >> >> > Hello everyone. I signed on a week or so ago, have read most of the> files and all of the messages since then.> > > My name is Ann, I reside in Massachusetts and am 70 years old. I> have had 2 hip replacements, one in August of 2006 and the other in> January of 2007. Other than that I have only had gall bladder surgery> and a radical mastoidectomy.> > > In November of 2009 I was diagnosed with Idiopathic Pulmonary> Fibrsis. I had never heard of this before my dx.> > > I really thought I had COPD, but the pulmonary doc said no. It's> when he told me that he has a patient who had had it for five years and> is doing well, that I began to see the seriousness of it all. He also> said there is no cure, but suggested that I try NAC as his long-term> patient uses it and says it works well for her. Needless to say I got it> and am on my first refill.> > > I saw this pulmonary doc on November 7 and again on December 28. At> my first visit he took me for a walk with an oxometer and I dropped to> 75. In December I dropped to 82. I'm sorry but I don't know all of the> medical terms as of yet, but sure I will learn. At my first visit he> told me I need oxygen when walking. When the Oxygen Company visited my> home, they brought the whole store with them. I panicked. They told me> that the doctor had ordered oxygen 24/7 at level 2. The doctor also told> me that I could get a small container that would fit on my belt. The> company told me there was nothing like that. On my second doctor visit,> I asked him about it and he said that he would find a company that would> supply me with one. That company turned out to be the very same company> that I first dealt with.> > > This past Monday, a therapist from this company came to my home to> test me for an oxygen system that would only provide oxygen as needed.> She took me for several walks around my house and up and down the> stairs, and I failed on every level. It was only as she was about to> leave the house that she noticed that the doctor had written a script> for liquid oxygen. I don't want, nor will I use it.> > > My husband and I travel often and the liquid would not work, yet the> other so-called portable tanks only supply 45 minutes of oxygen. The> therapist also told me that the doctor wrote the script for level 2> oxygen at rest, and level 3 with strenuous activity. He mentioned> nothing about this to me.> > > My oxygen is at 96% at rest and the therapist said that although it> dropped when walking and climbing stairs, I have an immediate recovery> when I sit.> > > Needless to say I have not been myself since November. The more I> find out about this disease, the more depressed I become. I have to talk> myself out of bed every morning and force myself to do simple chores> around the house.> > > I am glad I found this group as you all seem so positive, and I need> that. I know I have rambled and perhaps don't make sense, but I just> needed to finally introduce myself and hope some of you can help me> through your experiences. Thanks> > >> > >> >> >> > >> > >> >> >

>

>

[Guest guest]

I could not agree more. Carroll IPF 3/09Bruce, I don't know you personally ( obviously) but you are always saying that life is good with PF. I just want to say that you are good. That's all.!!!From: Bruce <brucemoreland (AT) gmail (DOT) com>To: Breathe-Support Sent: Thu, January 14, 2010 9:52:40 PMSubject: Re: My first post AnnPlain and simply you desperately need to get to a doctor who deals withInterstitial Lung Diseases all the time. You need one who sees hundredsof PF patients, not a few. The best place is a teaching hospital thathas an ILD center. I don't know what part of Mass you're in but Yale hasone. I also know patients who go to Brigham and Womens and like it. InNew York, Columbia and Cornell are excellent. Now what many do is go toan ILD center and then continue to use another pulmonologist for day today issues.How were you diagnosed? On the basis of CT's? PFT's? You need to getyour own oximeter to so you can monitor under different conditions. WithCOPD the variations in need aren't normally great but with PF they varygreatly between rest and activity. If you're maintaining at 96% at restyou're typical of earlier stages and may not even need oxygen when atrest. Have you had an overnight oximeter? You're very likely to needoxygen for sleep. As to activity, different activity may requiredifferent amounts. I was a bit shocked they let you drop to 75% on a 6minute walk. They should have stopped it and/or gotten you oxygen. As tothe therapist and your immediate recovery when you sit, it's still notgood to drop to those levels. While oxygen will help you with lessshortness of breath and make you feel better, I'm not sure anyone hasexplained the more critical reason for it. That is to protect yourorgans, especially your right side of your heart. Dropping below 90% orso does risk damage and Pulmonary Hypertension developing.As to types of oxygen equipment, I would recommend an appointment withthe manager of the office of the supplier you're using. Talk to himabout your needs and work out a solution together in a face to facemeeting. They are also use to COPD patients and many who don't seekmobility. Solicit his help. If that fails then it becomes time to searchfor different suppliers. There are many equipment oxygens and ultimatelypretty much anything is possible with oxygen.I'm a bit surprised at your definitive statement that liquid will notwork for travel as I do quite a bit of traveling. Now, that doesn't meanits right for you. But, on all oxygen there are tanks to provide youvarying lengths of time. On gaseous oxygen they would use conservers todo so.I know it doesn't seem like it but life can be good with PF. Feel freeto ask any and all questions.>> Hello everyone. I signed on a week or so ago, have read most of thefiles and all of the messages since then.> My name is Ann, I reside in Massachusetts and am 70 years old. I havehad 2 hip replacements, one in August of 2006 and the other in Januaryof 2007. Other than that I have only had gall bladder surgery and aradical mastoidectomy.> In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis.I had never heard of this before my dx.> I really thought I had COPD, but the pulmonary doc said no. It's whenhe told me that he has a patient who had had it for five years and isdoing well, that I began to see the seriousness of it all. He also saidthere is no cure, but suggested that I try NAC as his long-term patientuses it and says it works well for her. Needless to say I got it and amon my first refill.> I saw this pulmonary doc on November 7 and again on December 28. At myfirst visit he took me for a walk with an oxometer and I dropped to 75.In December I dropped to 82. I'm sorry but I don't know all of themedical terms as of yet, but sure I will learn. At my first visit hetold me I need oxygen when walking. When the Oxygen Company visited myhome, they brought the whole store with them. I panicked. They told methat the doctor had ordered oxygen 24/7 at level 2. The doctor also toldme that I could get a small container that would fit on my belt. Thecompany told me there was nothing like that. On my second doctor visit,I asked him about it and he said that he would find a company that wouldsupply me with one. That company turned out to be the very same companythat I first dealt with.> This past Monday, a therapist from this company came to my home totest me for an oxygen system that would only provide oxygen as needed.She took me for several walks around my house and up and down thestairs, and I failed on every level. It was only as she was about toleave the house that she noticed that the doctor had written a scriptfor liquid oxygen. I don't want, nor will I use it.> My husband and I travel often and the liquid would not work, yet theother so-called portable tanks only supply 45 minutes of oxygen. Thetherapist also told me that the doctor wrote the script for level 2oxygen at rest, and level 3 with strenuous activity. He mentionednothing about this to me.> My oxygen is at 96% at rest and the therapist said that although itdropped when walking and climbing stairs, I have an immediate recoverywhen I sit.> Needless to say I have not been myself since November. The more I findout about this disease, the more depressed I become. I have to talkmyself out of bed every morning and force myself to do simple choresaround the house.> I am glad I found this group as you all seem so positive, and I needthat. I know I have rambled and perhaps don't make sense, but I justneeded to finally introduce myself and hope some of you can help methrough your experiences. Thanks>

[Guest guest]

Patti,

So, if your PF was caused by the medication and you've stopped taking it does that mean the scar tissue will stop growing?

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Fri, January 15, 2010 5:15:59 PMSubject: Re: Re: My first post

Bettye,

Yes they think my PF may have been caused from Macrobid.... .a medication I have taken all my life for bladder infections.

Patti

[Guest guest]

My children are at risk of inheriting this terrible disease. They are still researching for the gene mutation that might cause familial IPF.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Fri, January 15, 2010 8:02:15 AMSubject: Re: My first post

Ariann Your situation is very much like mine. I am 71 had both hips replaced and one shoulder. I now have a knee that is acting up. I became very short of breathe about a year ago and after going through test they diagnosed IPF in June. I had been on a c pap for two years and am now on it with oxygen at night. My situation is a lot like yours. My level is good when I am setting or doing light work but falls during exertion ( 70 and 80's) I have a unit that works well for me and might you too. The machine is capable of filling my oxygen tanks (portable) which I use when shopping, walking, and heavy cleaning. The machine is hooked up to my c pap at night. I have two tanks, one I use at home and one I carry in my car for shopping. I just had a pulmonary function test and a cat scan but dont have the results yet. I am anxious to see if they have changed since

my test in June. My sister has IPF and Copd and goes to the same Dr. He told her that this condition IPF is an inherited disease which is good to know for family. Barb

barbara jean

From: arianne377 <Arianne377 (AT) comcast (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Thu, January 14, 2010 5:26:27 PMSubject: My first post

Hello everyone. I signed on a week or so ago, have read most of the files and all of the messages since then.My name is Ann, I reside in Massachusetts and am 70 years old. I have had 2 hip replacements, one in August of 2006 and the other in January of 2007. Other than that I have only had gall bladder surgery and a radical mastoidectomy.In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis. I had never heard of this before my dx.I really thought I had COPD, but the pulmonary doc said no. It's when he told me that he has a patient who had had it for five years and is doing well, that I began to see the seriousness of it all. He also said there is no cure, but suggested that I try NAC as his long-term patient uses it and says it works well for her. Needless to say I got it and am on my first refill.I saw this pulmonary doc on November 7 and again on December 28. At my first visit he took me for a walk with an oxometer

and I dropped to 75. In December I dropped to 82. I'm sorry but I don't know all of the medical terms as of yet, but sure I will learn. At my first visit he told me I need oxygen when walking. When the Oxygen Company visited my home, they brought the whole store with them. I panicked. They told me that the doctor had ordered oxygen 24/7 at level 2. The doctor also told me that I could get a small container that would fit on my belt. The company told me there was nothing like that. On my second doctor visit, I asked him about it and he said that he would find a company that would supply me with one. That company turned out to be the very same company that I first dealt with.This past Monday, a therapist from this company came to my home to test me for an oxygen system that would only provide oxygen as needed. She took me for several walks around my house and up and down the stairs, and I failed on every level. It was only as she was about to leave

the house that she noticed that the doctor had written a script for liquid oxygen. I don't want, nor will I use it. My husband and I travel often and the liquid would not work, yet the other so-called portable tanks only supply 45 minutes of oxygen. The therapist also told me that the doctor wrote the script for level 2 oxygen at rest, and level 3 with strenuous activity. He mentioned nothing about this to me.My oxygen is at 96% at rest and the therapist said that although it dropped when walking and climbing stairs, I have an immediate recovery when I sit. Needless to say I have not been myself since November. The more I find out about this disease, the more depressed I become. I have to talk myself out of bed every morning and force myself to do simple chores around the house.I am glad I found this group as you all seem so positive, and I need that. I know I have rambled and perhaps don't make sense, but I just needed to finally

introduce myself and hope some of you can help me through your experiences.. Thanks

[Guest guest]

,

I am not sure.....When I was there Dec 16th for my consultation I had just had a bladder infection and had been on Macrobid just a few days before (I didn't know about the danger until that day) and Dr. Strek said to never take another one ever again. She wants me to return next month and have all the tests done again to see if my PFT shows an improvement. The damage that is done will not get better but I am not sure if the progression will stop or not. I guess I will know next month.

Patti Indianapolis PF 2007

[Guest guest]

What is a c pap? Also, are any of you able to do housework, change beds, vacuum, dust, etc still?----- "barbara carr" wrote:

>

> > > >

Ariann Your situation is very much like mine. I am 71 had both hips replaced and one shoulder. I now have a knee that is acting up. I became very short of breathe about a year ago and after going through test they diagnosed IPF in June. I had been on a c pap for two years and am now on it with oxygen at night. My situation is a lot like yours. My level is good when I am setting or doing light work but falls during exertion ( 70 and 80's) I have a unit that works well for me and might you too. The machine is capable of filling my oxygen tanks (portable) which I use when shopping, walking, and heavy cleaning. The machine is hooked up to my c pap at night. I have two tanks, one I use at home and one I carry in my car for shopping.> I just had a pulmonary function test and a cat scan but dont have the results yet. I am anxious to see if they have changed since

my test in June. My sister has IPF and Copd and goes to the same Dr. He told her that this condition IPF is an inherited disease which is good to know for family. Barb

barbara jean >

> > >

> To: Breathe-Support > Sent: Thu, January 14, 2010 5:26:27 PM> Subject: My first post> > > Hello everyone. I signed on a week or so ago, have read most of the files and all of the messages since then.> My name is Ann, I reside in Massachusetts and am 70 years old. I have had 2 hip replacements, one in August of 2006 and the other in January of 2007. Other than that I have only had gall bladder surgery and a radical mastoidectomy.> In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis. I had never heard of this before my dx.> I really thought I had COPD, but the pulmonary doc said no. It's when he told me that he has a patient who had had it for five years and is doing well, that I began to see the seriousness of it all. He also said there is no cure, but suggested that I try NAC as his long-term patient uses it and says it works well for her. Needless to say I got it and am on my first refill.> I saw this pulmonary doc on November 7 and again on December 28. At my first visit he took me for a walk with an oxometer

and I dropped to 75. In December I dropped to 82. I'm sorry but I don't know all of the medical terms as of yet, but sure I will learn. At my first visit he told me I need oxygen when walking. When the Oxygen Company visited my home, they brought the whole store with them. I panicked. They told me that the doctor had ordered oxygen 24/7 at level 2. The doctor also told me that I could get a small container that would fit on my belt. The company told me there was nothing like that. On my second doctor visit, I asked him about it and he said that he would find a company that would supply me with one. That company turned out to be the very same company that I first dealt with.> This past Monday, a therapist from this company came to my home to test me for an oxygen system that would only provide oxygen as needed. She took me for several walks around my house and up and down the stairs, and I failed on every level. It was only as she was about to leave

the house that she noticed that the doctor had written a script for liquid oxygen. I don't want, nor will I use it. > My husband and I travel often and the liquid would not work, yet the other so-called portable tanks only supply 45 minutes of oxygen. The therapist also told me that the doctor wrote the script for level 2 oxygen at rest, and level 3 with strenuous activity. He mentioned nothing about this to me.> My oxygen is at 96% at rest and the therapist said that although it dropped when walking and climbing stairs, I have an immediate recovery when I sit. > Needless to say I have not been myself since November. The more I find out about this disease, the more depressed I become. I have to talk myself out of bed every morning and force myself to do simple chores around the house.> I am glad I found this group as you all seem so positive, and I need that. I know I have rambled and perhaps don't make sense, but I just needed to finally

introduce myself and hope some of you can help me through your experiences. Thanks> >

>

>

[Guest guest]

Arianne

A CPAP is a piece of equipment used to provide air to persons suffering

from sleep apnea.

Not that I mind not doing those items especially, but no, I could not do

housework, change beds, vacuum etc. One technique many use here is the

15 minute rule where they limit themselves to 15 minutes at a time. For

me any lifting, pushing and pulling drops my saturations significantly

and is very difficult for me to do. Could I vacuum a spot or something?

Sure. But the house? No Way. On the bed, getting the fitted sheet on

would be something I can't do. It's just that pulling motion. Laundry is

probably the most difficult thing I do, especially moving the wash from

the washer to the dryer and then getting it out of the dryer. I turn my

oxygen up and do it very slowly. I will pause after each handful (and

take smaller handfuls than I would have) of clothing I move. So, its

lift from washer, put in dryer, pause and pursed lip breathing.

Now, each of us is at a different point and what we can do varies

greatly. But, part of my current living arrangement was that we would be

able to have a weekly housekeeper. She comes once a week for 4 hours. I

actually found her through care.com and she's quite reasonable. If not

for the cats, once every other week would be fine as the two adults here

aren't too messy, but the monstous puffs of fur scampering around do

create a more frequent need.

> >

> >

> >

> >

>

>

> >

>

> Ariann Your situation is very much like mine. I am 71 had both hips

replaced and one shoulder. I now have a knee that is acting up. I became

very short of breathe about a year ago and after going through test they

diagnosed IPF in June. I had been on a c pap for two years and am now on

it with oxygen at night. My situation is a lot like yours. My level is

good when I am setting or doing light work but falls during exertion (

70 and 80's) I have a unit that works well for me and might you too. The

machine is capable of filling my oxygen tanks (portable) which I use

when shopping, walking, and heavy cleaning. The machine is hooked up to

my c pap at night. I have two tanks, one I use at home and one I carry

in my car for shopping.

> > I just had a pulmonary function test and a cat scan but dont have

the results yet. I am anxious to see if they have changed since my test

in June. My sister has IPF and Copd and goes to the same Dr. He told her

that this condition IPF is an inherited disease which is good to know

for family. Barb

> barbara jean

>

> >

> >

> >

> >

> From: arianne377 Arianne377@...

> > To: Breathe-Support

> > Sent: Thu, January 14, 2010 5:26:27 PM

> > Subject: My first post

> >

> >

> >

>

> Hello everyone. I signed on a week or so ago, have read most of the

files and all of the messages since then.

> > My name is Ann, I reside in Massachusetts and am 70 years old. I

have had 2 hip replacements, one in August of 2006 and the other in

January of 2007. Other than that I have only had gall bladder surgery

and a radical mastoidectomy.

> > In November of 2009 I was diagnosed with Idiopathic Pulmonary

Fibrsis. I had never heard of this before my dx.

> > I really thought I had COPD, but the pulmonary doc said no. It's

when he told me that he has a patient who had had it for five years and

is doing well, that I began to see the seriousness of it all. He also

said there is no cure, but suggested that I try NAC as his long-term

patient uses it and says it works well for her. Needless to say I got it

and am on my first refill.

> > I saw this pulmonary doc on November 7 and again on December 28. At

my first visit he took me for a walk with an oxometer and I dropped to

75. In December I dropped to 82. I'm sorry but I don't know all of the

medical terms as of yet, but sure I will learn. At my first visit he

told me I need oxygen when walking. When the Oxygen Company visited my

home, they brought the whole store with them. I panicked. They told me

that the doctor had ordered oxygen 24/7 at level 2. The doctor also told

me that I could get a small container that would fit on my belt. The

company told me there was nothing like that. On my second doctor visit,

I asked him about it and he said that he would find a company that would

supply me with one. That company turned out to be the very same company

that I first dealt with.

> > This past Monday, a therapist from this company came to my home to

test me for an oxygen system that would only provide oxygen as needed.

She took me for several walks around my house and up and down the

stairs, and I failed on every level. It was only as she was about to

leave the house that she noticed that the doctor had written a script

for liquid oxygen. I don't want, nor will I use it.

> > My husband and I travel often and the liquid would not work, yet the

other so-called portable tanks only supply 45 minutes of oxygen. The

therapist also told me that the doctor wrote the script for level 2

oxygen at rest, and level 3 with strenuous activity. He mentioned

nothing about this to me.

> > My oxygen is at 96% at rest and the therapist said that although it

dropped when walking and climbing stairs, I have an immediate recovery

when I sit.

> > Needless to say I have not been myself since November. The more I

find out about this disease, the more depressed I become. I have to talk

myself out of bed every morning and force myself to do simple chores

around the house.

> > I am glad I found this group as you all seem so positive, and I need

that. I know I have rambled and perhaps don't make sense, but I just

needed to finally introduce myself and hope some of you can help me

through your experiences. Thanks

> >

> >

>

>

> >

> >

>

[Guest guest]

arianne

i need to use oxygen when doing housework

bending makes me cough

laundry -- to get the stuff out of the dryer, i sit on the floor and reach in, i also use a 12 inch ruler to pull stuff from the back of the dryer to the front of the dryer where i can reach it

vacuum-- can be done with o2, but o2 tube and vacuum cord get tangled, so Jerry does vacuuming

kitchen floor -- i use a stand up mop or i sit down on floor for hand wipe ups

dust with a damp cloth -- usually windex or non aerasol spray to pick up dust -- limit the bending

jerry helps me change the bed -- i can strip it easily, making it is the tough part

as Bruce said, remember the 15 minute rule , rest after 15 minutes

if bending makes you cough, limit the bending, find other ways to do stuff

you might even have to change cleaning products to stuff that doesn't bother you

depends on what your condition is at the time

recently suggested to someone that she wear her portable while vacuuming -- eliminates the tangle of the tube and the cord

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: My first postTo: Breathe-Support Date: Saturday, January 16, 2010, 11:33 AM

ArianneA CPAP is a piece of equipment used to provide air to persons sufferingfrom sleep apnea.Not that I mind not doing those items especially, but no, I could not dohousework, change beds, vacuum etc. One technique many use here is the15 minute rule where they limit themselves to 15 minutes at a time. Forme any lifting, pushing and pulling drops my saturations significantlyand is very difficult for me to do. Could I vacuum a spot or something?Sure. But the house? No Way. On the bed, getting the fitted sheet onwould be something I can't do. It's just that pulling motion. Laundry isprobably the most difficult thing I do, especially moving the wash fromthe washer to the dryer and then getting it out of the dryer. I turn myoxygen up and do it very slowly. I will pause after each handful (andtake smaller handfuls than I would have) of clothing I move. So, itslift from washer, put in dryer,

pause and pursed lip breathing.Now, each of us is at a different point and what we can do variesgreatly. But, part of my current living arrangement was that we would beable to have a weekly housekeeper. She comes once a week for 4 hours. Iactually found her through care.com and she's quite reasonable. If notfor the cats, once every other week would be fine as the two adults herearen't too messy, but the monstous puffs of fur scampering around docreate a more frequent need.> >> >> >> >>>> >>> Ariann Your situation is very much like mine. I am 71 had both hipsreplaced and one shoulder. I now have a knee that is acting up. I becamevery short of breathe about a year ago and after going through test theydiagnosed IPF in June. I had been on a c pap for two years and am now onit with oxygen at night. My situation is a lot like yours. My level isgood when I am setting or doing light work but falls during exertion (70 and 80's) I have a unit that works well for me and might you too. Themachine is capable of filling my oxygen tanks (portable) which I usewhen shopping, walking, and heavy cleaning. The machine is hooked up tomy c pap at night. I have two tanks, one I use at home and one I carryin my car for shopping.> > I just had a pulmonary function test and a cat scan but dont

havethe results yet. I am anxious to see if they have changed since my testin June. My sister has IPF and Copd and goes to the same Dr. He told herthat this condition IPF is an inherited disease which is good to knowfor family. Barb> barbara jean>> >> >> >> >> From: arianne377 Arianne377@. ..> > To: Breathe-Support@ yahoogroups. com> > Sent: Thu, January 14, 2010 5:26:27 PM> > Subject: My first post> >> >> >>> Hello everyone. I signed on a week or so ago, have read most of thefiles and all of the messages since then.> > My name is Ann, I reside in Massachusetts and am 70 years old. Ihave had 2 hip

replacements, one in August of 2006 and the other inJanuary of 2007. Other than that I have only had gall bladder surgeryand a radical mastoidectomy.> > In November of 2009 I was diagnosed with Idiopathic PulmonaryFibrsis. I had never heard of this before my dx.> > I really thought I had COPD, but the pulmonary doc said no. It'swhen he told me that he has a patient who had had it for five years andis doing well, that I began to see the seriousness of it all. He alsosaid there is no cure, but suggested that I try NAC as his long-termpatient uses it and says it works well for her. Needless to say I got itand am on my first refill.> > I saw this pulmonary doc on November 7 and again on December 28. Atmy first visit he took me for a walk with an oxometer and I dropped to75. In December I dropped to 82. I'm sorry but I don't know all of themedical terms as of yet, but sure I will

learn. At my first visit hetold me I need oxygen when walking. When the Oxygen Company visited myhome, they brought the whole store with them. I panicked. They told methat the doctor had ordered oxygen 24/7 at level 2. The doctor also toldme that I could get a small container that would fit on my belt. Thecompany told me there was nothing like that. On my second doctor visit,I asked him about it and he said that he would find a company that wouldsupply me with one. That company turned out to be the very same companythat I first dealt with.> > This past Monday, a therapist from this company came to my home totest me for an oxygen system that would only provide oxygen as needed.She took me for several walks around my house and up and down thestairs, and I failed on every level. It was only as she was about toleave the house that she noticed that the doctor had written a scriptfor liquid oxygen.

I don't want, nor will I use it.> > My husband and I travel often and the liquid would not work, yet theother so-called portable tanks only supply 45 minutes of oxygen. Thetherapist also told me that the doctor wrote the script for level 2oxygen at rest, and level 3 with strenuous activity. He mentionednothing about this to me.> > My oxygen is at 96% at rest and the therapist said that although itdropped when walking and climbing stairs, I have an immediate recoverywhen I sit.> > Needless to say I have not been myself since November. The more Ifind out about this disease, the more depressed I become. I have to talkmyself out of bed every morning and force myself to do simple choresaround the house.> > I am glad I found this group as you all seem so positive, and I needthat. I know I have rambled and perhaps don't make sense, but I justneeded to finally introduce myself

and hope some of you can help methrough your experiences. Thanks> >> >>>> >> >>

[Guest guest]

Pink/Arianne

Also consider new ways of doing things and trying some energy saving

methods. For instance, I got a Shark steam mop and it does a great job.

Far easier than traditional mopping and hand scubbing and I can use it

when we make a mess and some spot mopping is necessary. If I was the one

having to vacuum, I'd have to change vacuums. I have a great vacuum for

allergic people, but its heavy. Replace your current laundry baskets

with light mesh ones or even something on wheels. Just saying there are

sometimes less physical ways than the way we've always done things.

> > >

> > >

> > >

> > >

> >

> >

> > >

> >

> > Ariann Your situation is very much like mine. I am 71 had both hips

> replaced and one shoulder. I now have a knee that is acting up. I

became

> very short of breathe about a year ago and after going through test

they

> diagnosed IPF in June. I had been on a c pap for two years and am now

on

> it with oxygen at night. My situation is a lot like yours. My level is

> good when I am setting or doing light work but falls during exertion (

> 70 and 80's) I have a unit that works well for me and might you too.

The

> machine is capable of filling my oxygen tanks (portable) which I use

> when shopping, walking, and heavy cleaning. The machine is hooked up

to

> my c pap at night. I have two tanks, one I use at home and one I carry

> in my car for shopping.

> > > I just had a pulmonary function test and a cat scan but dont have

> the results yet. I am anxious to see if they have changed since my

test

> in June. My sister has IPF and Copd and goes to the same Dr. He told

her

> that this condition IPF is an inherited disease which is good to know

> for family. Barb

> > barbara jean

> >

> > >

> > >

> > >

> > >

> > From: arianne377 Arianne377@ ..

> > > To: Breathe-Support@ yahoogroups. com

> > > Sent: Thu, January 14, 2010 5:26:27 PM

> > > Subject: My first post

> > >

> > >

> > >

> >

> > Hello everyone. I signed on a week or so ago, have read most of the

> files and all of the messages since then.

> > > My name is Ann, I reside in Massachusetts and am 70 years old. I

> have had 2 hip replacements, one in August of 2006 and the other in

> January of 2007. Other than that I have only had gall bladder surgery

> and a radical mastoidectomy.

> > > In November of 2009 I was diagnosed with Idiopathic Pulmonary

> Fibrsis. I had never heard of this before my dx.

> > > I really thought I had COPD, but the pulmonary doc said no. It's

> when he told me that he has a patient who had had it for five years

and

> is doing well, that I began to see the seriousness of it all. He also

> said there is no cure, but suggested that I try NAC as his long-term

> patient uses it and says it works well for her. Needless to say I got

it

> and am on my first refill.

> > > I saw this pulmonary doc on November 7 and again on December 28.

At

> my first visit he took me for a walk with an oxometer and I dropped to

> 75. In December I dropped to 82. I'm sorry but I don't know all of the

> medical terms as of yet, but sure I will learn. At my first visit he

> told me I need oxygen when walking. When the Oxygen Company visited my

> home, they brought the whole store with them. I panicked. They told me

> that the doctor had ordered oxygen 24/7 at level 2. The doctor also

told

> me that I could get a small container that would fit on my belt. The

> company told me there was nothing like that. On my second doctor

visit,

> I asked him about it and he said that he would find a company that

would

> supply me with one. That company turned out to be the very same

company

> that I first dealt with.

> > > This past Monday, a therapist from this company came to my home to

> test me for an oxygen system that would only provide oxygen as needed.

> She took me for several walks around my house and up and down the

> stairs, and I failed on every level. It was only as she was about to

> leave the house that she noticed that the doctor had written a script

> for liquid oxygen. I don't want, nor will I use it.

> > > My husband and I travel often and the liquid would not work, yet

the

> other so-called portable tanks only supply 45 minutes of oxygen. The

> therapist also told me that the doctor wrote the script for level 2

> oxygen at rest, and level 3 with strenuous activity. He mentioned

> nothing about this to me.

> > > My oxygen is at 96% at rest and the therapist said that although

it

> dropped when walking and climbing stairs, I have an immediate recovery

> when I sit.

> > > Needless to say I have not been myself since November. The more I

> find out about this disease, the more depressed I become. I have to

talk

> myself out of bed every morning and force myself to do simple chores

> around the house.

> > > I am glad I found this group as you all seem so positive, and I

need

> that. I know I have rambled and perhaps don't make sense, but I just

> needed to finally introduce myself and hope some of you can help me

> through your experiences. Thanks

> > >

> > >

> >

> >

> > >

> > >

> >

>

[Guest guest]

Thank you. I have a reacher from when I had my hip replacements, so that will work for me. Woody (my husband), took over the laundry before I had the replacements and still does it. I think I will take that job back as it is easier to do than other things. Once my meter arrives I will be able to see what my stats are. Then I can go from there. I stripped my bed this morning but Woody made it. He is very helpful even under normal circumstances. Bending doesn't make me cough so right now that isn't a problem for me. Also, when my meter arrives I will be able to assess what I can do oxygen-wise with purchasing something else.Woody put my big unit out in the family room this morning. That now gives me full access to the complete downstairs. He said that all he has to do is carry it upstairs and centrally situate it for it to give me full access to the upstairs. I have a 50 foot tube. So far, so good.----- "Joyce T Rosenberg" wrote:

>

> > > arianne

i need to use oxygen when doing housework

bending makes me cough

laundry -- to get the stuff out of the dryer, i sit on the floor and reach in, i also use a 12 inch ruler to pull stuff from the back of the dryer to the front of the dryer where i can reach it

vacuum-- can be done with o2, but o2 tube and vacuum cord get tangled, so Jerry does vacuuming

kitchen floor -- i use a stand up mop or i sit down on floor for hand wipe ups

dust with a damp cloth -- usually windex or non aerasol spray to pick up dust -- limit the bending

jerry helps me change the bed -- i can strip it easily, making it is the tough part

as Bruce said, remember the 15 minute rule , rest after 15 minutes

if bending makes you cough, limit the bending, find other ways to do stuff

you might even have to change cleaning products to stuff that doesn't bother you

depends on what your condition is at the time

recently suggested to someone that she wear her portable while vacuuming -- eliminates the tangle of the tube and the cord> >

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org> > > > > Subject: Re: My first post> To: Breathe-Support > Date: Saturday, January 16, 2010, 11:33 AM> > > > Arianne> > A CPAP is a piece of equipment used to provide air to persons suffering> from sleep apnea.> > Not that I mind not doing those items especially, but no, I could not do> housework, change beds, vacuum etc. One technique many use here is the> 15 minute rule where they limit themselves to 15 minutes at a time. For> me any lifting, pushing and pulling drops my saturations significantly> and is very difficult for me to do. Could I vacuum a spot or something?> Sure. But the house? No Way. On the bed, getting the fitted sheet on> would be something I can't do. It's just that pulling motion. Laundry is> probably the most difficult thing I do, especially moving the wash from> the washer to the dryer and then getting it out of the dryer. I turn my> oxygen up and do it very slowly. I will pause after each handful (and> take smaller handfuls than I would have) of clothing I move. So, its> lift from washer, put in dryer,

pause and pursed lip breathing.> > Now, each of us is at a different point and what we can do varies> greatly. But, part of my current living arrangement was that we would be> able to have a weekly housekeeper. She comes once a week for 4 hours. I> actually found her through care.com and she's quite reasonable. If not> for the cats, once every other week would be fine as the two adults here> aren't too messy, but the monstous puffs of fur scampering around do> create a more frequent need.> > > > >> > >> > >> > >> >> >> > >> >> > Ariann Your situation is very much like mine. I am 71 had both hips> replaced and one shoulder. I now have a knee that is acting up. I became> very short of breathe about a year ago and after going through test they> diagnosed IPF in June. I had been on a c pap for two years and am now on> it with oxygen at night. My situation is a lot like yours. My level is> good when I am setting or doing light work but falls during exertion (> 70 and 80's) I have a unit that works well for me and might you too. The> machine is capable of filling my oxygen tanks (portable) which I use> when shopping, walking, and heavy cleaning. The machine is hooked up to> my c pap at night. I have two tanks, one I use at home and one I carry> in my car for shopping.> > > I just had a pulmonary function test and a cat scan but dont

have> the results yet. I am anxious to see if they have changed since my test> in June. My sister has IPF and Copd and goes to the same Dr. He told her> that this condition IPF is an inherited disease which is good to know> for family. Barb> > barbara jean> >> > >> > >> > >> > >> > From: arianne377 Arianne377@. ..> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Thu, January 14, 2010 5:26:27 PM> > > Subject: My first post> > >> > >> > >> >> > Hello everyone. I signed on a week or so ago, have read most of the> files and all of the messages since then.> > > My name is Ann, I reside in Massachusetts and am 70 years old. I> have had 2 hip

replacements, one in August of 2006 and the other in> January of 2007. Other than that I have only had gall bladder surgery> and a radical mastoidectomy.> > > In November of 2009 I was diagnosed with Idiopathic Pulmonary> Fibrsis. I had never heard of this before my dx.> > > I really thought I had COPD, but the pulmonary doc said no. It's> when he told me that he has a patient who had had it for five years and> is doing well, that I began to see the seriousness of it all. He also> said there is no cure, but suggested that I try NAC as his long-term> patient uses it and says it works well for her. Needless to say I got it> and am on my first refill.> > > I saw this pulmonary doc on November 7 and again on December 28. At> my first visit he took me for a walk with an oxometer and I dropped to> 75. In December I dropped to 82. I'm sorry but I don't know all of the> medical terms as of yet, but sure I will

learn. At my first visit he> told me I need oxygen when walking. When the Oxygen Company visited my> home, they brought the whole store with them. I panicked. They told me> that the doctor had ordered oxygen 24/7 at level 2. The doctor also told> me that I could get a small container that would fit on my belt. The> company told me there was nothing like that. On my second doctor visit,> I asked him about it and he said that he would find a company that would> supply me with one. That company turned out to be the very same company> that I first dealt with.> > > This past Monday, a therapist from this company came to my home to> test me for an oxygen system that would only provide oxygen as needed.> She took me for several walks around my house and up and down the> stairs, and I failed on every level. It was only as she was about to> leave the house that she noticed that the doctor had written a script> for liquid oxygen.

I don't want, nor will I use it.> > > My husband and I travel often and the liquid would not work, yet the> other so-called portable tanks only supply 45 minutes of oxygen. The> therapist also told me that the doctor wrote the script for level 2> oxygen at rest, and level 3 with strenuous activity. He mentioned> nothing about this to me.> > > My oxygen is at 96% at rest and the therapist said that although it> dropped when walking and climbing stairs, I have an immediate recovery> when I sit.> > > Needless to say I have not been myself since November. The more I> find out about this disease, the more depressed I become. I have to talk> myself out of bed every morning and force myself to do simple chores> around the house.> > > I am glad I found this group as you all seem so positive, and I need> that. I know I have rambled and perhaps don't make sense, but I just> needed to finally introduce myself

and hope some of you can help me> through your experiences. Thanks> > >> > >> >> >> > >> > >> >> > >

>

>

[Guest guest]

I have been using the swiffer mop since I had my hips done. No more hands & knees. I also have a very light weight vacuum but was very winded using it yesterday without air. I won't do that anymore.Thank goodness I have had practice in learning new ways of doing things. I was nearly useless for years before my hip replacements so constantly had to keep applying new techniques.----- "Bruce" wrote:

>

> > > Pink/Arianne> > Also consider new ways of doing things and trying some energy saving> methods. For instance, I got a Shark steam mop and it does a great job.> Far easier than traditional mopping and hand scubbing and I can use it> when we make a mess and some spot mopping is necessary. If I was the one> having to vacuum, I'd have to change vacuums. I have a great vacuum for> allergic people, but its heavy. Replace your current laundry baskets> with light mesh ones or even something on wheels. Just saying there are> sometimes less physical ways than the way we've always done things.> > > > > >> > > >> > > >> > > >> > >> > >> > > >> > >> > > Ariann Your situation is very much like mine. I am 71 had both hips> > replaced and one shoulder. I now have a knee that is acting up. I> became> > very short of breathe about a year ago and after going through test> they> > diagnosed IPF in June. I had been on a c pap for two years and am now> on> > it with oxygen at night. My situation is a lot like yours. My level is> > good when I am setting or doing light work but falls during exertion (> > 70 and 80's) I have a unit that works well for me and might you too.> The> > machine is capable of filling my oxygen tanks (portable) which I use> > when shopping, walking, and heavy cleaning. The machine is hooked up> to> > my c pap at night. I have two tanks, one I use at home and one I carry> > in my car for shopping.> > > > I just had a pulmonary function test and a cat scan but dont have> > the results yet. I am anxious to see if they have changed since my> test> > in June. My sister has IPF and Copd and goes to the same Dr. He told> her> > that this condition IPF is an inherited disease which is good to know> > for family. Barb> > > barbara jean> > >> > > >> > > >> > > >> > > >> > > From: arianne377 Arianne377@ ..> > > > To: Breathe-Support@ yahoogroups. com> > > > Sent: Thu, January 14, 2010 5:26:27 PM> > > > Subject: My first post> > > >> > > >> > > >> > >> > > Hello everyone. I signed on a week or so ago, have read most of the> > files and all of the messages since then.> > > > My name is Ann, I reside in Massachusetts and am 70 years old. I> > have had 2 hip replacements, one in August of 2006 and the other in> > January of 2007. Other than that I have only had gall bladder surgery> > and a radical mastoidectomy.> > > > In November of 2009 I was diagnosed with Idiopathic Pulmonary> > Fibrsis. I had never heard of this before my dx.> > > > I really thought I had COPD, but the pulmonary doc said no. It's> > when he told me that he has a patient who had had it for five years> and> > is doing well, that I began to see the seriousness of it all. He also> > said there is no cure, but suggested that I try NAC as his long-term> > patient uses it and says it works well for her. Needless to say I got> it> > and am on my first refill.> > > > I saw this pulmonary doc on November 7 and again on December 28.> At> > my first visit he took me for a walk with an oxometer and I dropped to> > 75. In December I dropped to 82. I'm sorry but I don't know all of the> > medical terms as of yet, but sure I will learn. At my first visit he> > told me I need oxygen when walking. When the Oxygen Company visited my> > home, they brought the whole store with them. I panicked. They told me> > that the doctor had ordered oxygen 24/7 at level 2. The doctor also> told> > me that I could get a small container that would fit on my belt. The> > company told me there was nothing like that. On my second doctor> visit,> > I asked him about it and he said that he would find a company that> would> > supply me with one. That company turned out to be the very same> company> > that I first dealt with.> > > > This past Monday, a therapist from this company came to my home to> > test me for an oxygen system that would only provide oxygen as needed.> > She took me for several walks around my house and up and down the> > stairs, and I failed on every level. It was only as she was about to> > leave the house that she noticed that the doctor had written a script> > for liquid oxygen. I don't want, nor will I use it.> > > > My husband and I travel often and the liquid would not work, yet> the> > other so-called portable tanks only supply 45 minutes of oxygen. The> > therapist also told me that the doctor wrote the script for level 2> > oxygen at rest, and level 3 with strenuous activity. He mentioned> > nothing about this to me.> > > > My oxygen is at 96% at rest and the therapist said that although> it> > dropped when walking and climbing stairs, I have an immediate recovery> > when I sit.> > > > Needless to say I have not been myself since November. The more I> > find out about this disease, the more depressed I become. I have to> talk> > myself out of bed every morning and force myself to do simple chores> > around the house.> > > > I am glad I found this group as you all seem so positive, and I> need> > that. I know I have rambled and perhaps don't make sense, but I just> > needed to finally introduce myself and hope some of you can help me> > through your experiences. Thanks> > > >> > > >> > >> > >> > > >> > > >> > >> >> >

>

>

[Guest guest]

These r great ideas Joyce!! Thanks for sharing. Today is my first day of official unemployment, so now I will have more time to stay in touch with everyone. I have really missed u guys!! CaroMissippi, COPD 2005, UIP January 2007, Sjogren syndrome July 2008, polymyositis/dermatomyositis November 2008, Fatty liver disease June 2009, Lupus (SLE)July 2009, mixed connective tissue disease August 2009

To: Breathe-Support Sent: Sat, January 16, 2010 11:43:06 AMSubject: Re: Re: My first post

arianne

i need to use oxygen when doing housework

bending makes me cough

laundry -- to get the stuff out of the dryer, i sit on the floor and reach in, i also use a 12 inch ruler to pull stuff from the back of the dryer to the front of the dryer where i can reach it

vacuum-- can be done with o2, but o2 tube and vacuum cord get tangled, so Jerry does vacuuming

kitchen floor -- i use a stand up mop or i sit down on floor for hand wipe ups

dust with a damp cloth -- usually windex or non aerasol spray to pick up dust -- limit the bending

jerry helps me change the bed -- i can strip it easily, making it is the tough part

as Bruce said, remember the 15 minute rule , rest after 15 minutes

if bending makes you cough, limit the bending, find other ways to do stuff

you might even have to change cleaning products to stuff that doesn't bother you

depends on what your condition is at the time

recently suggested to someone that she wear her portable while vacuuming -- eliminates the tangle of the tube and the cord

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Bruce <brucemoreland@ gmail.com>Subject: Re: My first postTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 16, 2010, 11:33 AM

ArianneA CPAP is a piece of equipment used to provide air to persons sufferingfrom sleep apnea.Not that I mind not doing those items especially, but no, I could not dohousework, change beds, vacuum etc. One technique many use here is the15 minute rule where they limit themselves to 15 minutes at a time. Forme any lifting, pushing and pulling drops my saturations significantlyand is very difficult for me to do. Could I vacuum a spot or something?Sure. But the house? No Way. On the bed, getting the fitted sheet onwould be something I can't do. It's just that pulling motion. Laundry isprobably the most difficult thing I do, especially moving the wash fromthe washer to the dryer and then getting it out of the dryer. I turn myoxygen up and do it very slowly. I will pause after each handful (andtake smaller handfuls than I would have) of clothing I move. So, itslift from washer, put in dryer,

pause and pursed lip breathing.Now, each of us is at a different point and what we can do variesgreatly. But, part of my current living arrangement was that we would beable to have a weekly housekeeper. She comes once a week for 4 hours. Iactually found her through care.com and she's quite reasonable. If notfor the cats, once every other week would be fine as the two adults herearen't too messy, but the monstous puffs of fur scampering around docreate a more frequent need.> >>

>> >> >>>> >>> Ariann Your situation is very much like mine. I am 71 had both hipsreplaced and one shoulder. I now have a knee that is acting up. I becamevery short of breathe about a year ago and after going through test theydiagnosed IPF in June. I had been on a c pap for two years and am now onit with oxygen at night. My situation is a lot like yours. My level isgood when I am setting or doing light work but falls during exertion (70 and 80's) I have a unit that works well for me and might you too. Themachine is capable of filling my oxygen tanks (portable) which I usewhen shopping, walking, and heavy cleaning. The machine is hooked up tomy c pap at night. I have two tanks, one I use at home and one I carryin my car for shopping.> > I just had a pulmonary function test and a cat scan but dont havethe results yet. I am anxious to see if

they have changed since my testin June. My sister has IPF and Copd and goes to the same Dr. He told herthat this condition IPF is an inherited disease which is good to knowfor family. Barb> barbara jean>> >> >> >> >> From: arianne377 Arianne377@. ..> > To: Breathe-Support@ yahoogroups. com> > Sent: Thu, January 14, 2010 5:26:27 PM> > Subject: My first post> >> >> >>> Hello everyone. I signed on a week or so ago, have read most of thefiles and all of the messages since then.> > My name is Ann, I reside in Massachusetts and am 70 years old. Ihave had 2 hip replacements, one in August of 2006 and the other inJanuary of 2007. Other than that I have only

had gall bladder surgeryand a radical mastoidectomy.> > In November of 2009 I was diagnosed with Idiopathic PulmonaryFibrsis. I had never heard of this before my dx.> > I really thought I had COPD, but the pulmonary doc said no. It'swhen he told me that he has a patient who had had it for five years andis doing well, that I began to see the seriousness of it all. He alsosaid there is no cure, but suggested that I try NAC as his long-termpatient uses it and says it works well for her. Needless to say I got itand am on my first refill.> > I saw this pulmonary doc on November 7 and again on December 28. Atmy first visit he took me for a walk with an oxometer and I dropped to75. In December I dropped to 82. I'm sorry but I don't know all of themedical terms as of yet, but sure I will learn. At my first visit hetold me I need oxygen when walking. When the Oxygen Company visited

myhome, they brought the whole store with them. I panicked. They told methat the doctor had ordered oxygen 24/7 at level 2. The doctor also toldme that I could get a small container that would fit on my belt. Thecompany told me there was nothing like that. On my second doctor visit,I asked him about it and he said that he would find a company that wouldsupply me with one. That company turned out to be the very same companythat I first dealt with.> > This past Monday, a therapist from this company came to my home totest me for an oxygen system that would only provide oxygen as needed.She took me for several walks around my house and up and down thestairs, and I failed on every level. It was only as she was about toleave the house that she noticed that the doctor had written a scriptfor liquid oxygen. I don't want, nor will I use it.> > My husband and I travel often and the liquid would

not work, yet theother so-called portable tanks only supply 45 minutes of oxygen. Thetherapist also told me that the doctor wrote the script for level 2oxygen at rest, and level 3 with strenuous activity. He mentionednothing about this to me.> > My oxygen is at 96% at rest and the therapist said that although itdropped when walking and climbing stairs, I have an immediate recoverywhen I sit.> > Needless to say I have not been myself since November. The more Ifind out about this disease, the more depressed I become. I have to talkmyself out of bed every morning and force myself to do simple choresaround the house.> > I am glad I found this group as you all seem so positive, and I needthat. I know I have rambled and perhaps don't make sense, but I justneeded to finally introduce myself and hope some of you can help methrough your experiences. Thanks> >>

>>>> >> >>

[Guest guest]

great idea barb

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: My first postTo: Breathe-Support Date: Saturday, January 16, 2010, 3:32 PM

I use a little Helios, and I bought a cheap kids backpack. Then I cut a hole in the backpack to thread the hose through and reinforced the hole with (what else?) duct tape. I use the Helios/backpack combo when I want to walk the dogs or garden or whatever requires my hands to be free.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Counting my blessings: #28 - Good doctors

Consider what a great forest is set ablaze by a small spark. ( 3:5)

From: barbara carr <bjcarr2004@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Sat, January 16, 2010 3:26:56 PMSubject: Re: Re: My first post

Like i said before, it is much easier for me to use portable unit when I am around the house, cooking, cleaning etc.I have a very long cord that allows me to go pretty far. Because it only holds a certain amount of oxygen, I have to refill it. I think it last about 4 hours and that is plenty for my acitivies around the house. I am not at the constant coughing stage yet.

barbara jean> > From: Bruce <brucemoreland@ gmail.com>> Subject: Re: My first post> To: Breathe-Support@ yahoogroups. com> Date: Saturday, January 16, 2010, 11:33 AM> > > > Arianne> > A CPAP is a piece of equipment used to provide air to persons suffering> from sleep apnea.> > Not that I mind not doing those items especially, but no, I could not do> housework, change beds, vacuum etc. One technique many use here is the> 15 minute rule where they limit themselves to 15 minutes at a time. For> me any lifting, pushing and pulling drops my saturations significantly> and is very difficult for me to do. Could I vacuum a spot or something?> Sure. But the house? No Way. On the bed, getting the fitted sheet on> would be something I can't do. It's just that pulling motion. Laundry is> probably the most difficult thing I do, especially moving the wash from> the washer to the dryer and then getting it out of the dryer. I turn my> oxygen up and do it very slowly. I will pause after each handful (and> take smaller handfuls than I

would have) of clothing I move. So, its> lift from washer, put in dryer, pause and pursed lip breathing.> > Now, each of us is at a different point and what we can do varies> greatly. But, part of my current living arrangement was that we would be> able to have a weekly housekeeper. She comes once a week for 4 hours. I> actually found her through care.com and she's quite reasonable. If not> for the cats, once every other week would be fine as the two adults here> aren't too messy, but the monstous puffs of fur scampering around do> create a more frequent need.> > > > >> > >> > >> > >> >> >> > >> >> > Ariann Your situation is very much like mine. I am 71 had both hips> replaced and one shoulder. I now have a knee that is acting up. I became> very short of breathe about a year ago and after going through test they> diagnosed IPF in June. I had been on a c pap for two years and am now on> it with oxygen at night. My situation is a lot like yours. My level is> good when I am setting or doing light work but falls during exertion (> 70 and 80's) I have a unit that works well for me and might you too. The> machine is capable of filling my oxygen tanks (portable)

which I use> when shopping, walking, and heavy cleaning. The machine is hooked up to> my c pap at night. I have two tanks, one I use at home and one I carry> in my car for shopping.> > > I just had a pulmonary function test and a cat scan but dont have> the results yet. I am anxious to see if they have changed since my test> in June. My sister has IPF and Copd and goes to the same Dr. He told her> that this condition IPF is an inherited disease which is good to know> for family. Barb> > barbara jean> >> > >> > >> > >> > >> > From: arianne377 Arianne377@. ..> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Thu, January 14, 2010 5:26:27 PM> > > Subject:

My first post> > >> > >> > >> >> > Hello everyone. I signed on a week or so ago, have read most of the> files and all of the messages since then.> > > My name is Ann, I reside in Massachusetts and am 70 years old. I> have had 2 hip replacements, one in August of 2006 and the other in> January of 2007. Other than that I have only had gall bladder surgery> and a radical mastoidectomy.> > > In November of 2009 I was diagnosed with Idiopathic Pulmonary> Fibrsis. I had never heard of this before my dx.> > > I really thought I had COPD, but the pulmonary doc said no. It's> when he told me that he has a patient who had had it for five years and> is doing well, that I began to see the seriousness of it all. He also> said there is no cure, but suggested that I try NAC as his long-term>

patient uses it and says it works well for her. Needless to say I got it> and am on my first refill.> > > I saw this pulmonary doc on November 7 and again on December 28. At> my first visit he took me for a walk with an oxometer and I dropped to> 75. In December I dropped to 82. I'm sorry but I don't know all of the> medical terms as of yet, but sure I will learn. At my first visit he> told me I need oxygen when walking. When the Oxygen Company visited my> home, they brought the whole store with them. I panicked. They told me> that the doctor had ordered oxygen 24/7 at level 2. The doctor also told> me that I could get a small container that would fit on my belt. The> company told me there was nothing like that. On my second doctor visit,> I asked him about it and he said that he would find a company that would> supply me with one. That company turned out to be the

very same company> that I first dealt with.> > > This past Monday, a therapist from this company came to my home to> test me for an oxygen system that would only provide oxygen as needed.> She took me for several walks around my house and up and down the> stairs, and I failed on every level. It was only as she was about to> leave the house that she noticed that the doctor had written a script> for liquid oxygen. I don't want, nor will I use it.> > > My husband and I travel often and the liquid would not work, yet the> other so-called portable tanks only supply 45 minutes of oxygen. The> therapist also told me that the doctor wrote the script for level 2> oxygen at rest, and level 3 with strenuous activity. He mentioned> nothing about this to me.> > > My oxygen is at 96% at rest and the therapist said that although it> dropped when walking

and climbing stairs, I have an immediate recovery> when I sit.> > > Needless to say I have not been myself since November. The more I> find out about this disease, the more depressed I become. I have to talk> myself out of bed every morning and force myself to do simple chores> around the house.> > > I am glad I found this group as you all seem so positive, and I need> that. I know I have rambled and perhaps don't make sense, but I just> needed to finally introduce myself and hope some of you can help me> through your experiences. Thanks> > >> > >> >> >> > >> > >> >> > >

> >

[Guest guest]

Pink

My reservoir is fairly centralized but I use a 75 foot hose and that

allows me to reach any spot in the house. For a 50 foot hose to work I'd

probably have to put it in the living room between the recliners and the

tv or something. As it is 50 feet wouldn't get me to my closet. From the

living area there is a short winding privacy type entry to the master

bedroom and then you go through the bedroom and then through the bath to

get to the closet. But, I've had no problem with a 75 foot and I am

still getting the right flow. I do check with a liter meter. I think if

I was on a very high flow I might lose a little and I also think for

some reason concentrators lose flow over distance more than liquid. My

only problem with the hose is that Mandi thinks it, like everything else

in the world, is a toy.

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > > >

> > >

> > > Ariann Your situation is very much like mine. I am 71 had both

hips

> > replaced and one shoulder. I now have a knee that is acting up. I

became

> > very short of breathe about a year ago and after going through test

they

> > diagnosed IPF in June. I had been on a c pap for two years and am

now on

> > it with oxygen at night. My situation is a lot like yours. My level

is

> > good when I am setting or doing light work but falls during exertion

(

> > 70 and 80's) I have a unit that works well for me and might you too.

The

> > machine is capable of filling my oxygen tanks (portable) which I use

> > when shopping, walking, and heavy cleaning. The machine is hooked up

to

> > my c pap at night. I have two tanks, one I use at home and one I

carry

> > in my car for shopping.

> > > > I just had a pulmonary function test and a cat scan but dont

have

> > the results yet. I am anxious to see if they have changed since my

test

> > in June. My sister has IPF and Copd and goes to the same Dr. He told

her

> > that this condition IPF is an inherited disease which is good to

know

> > for family. Barb

> > > barbara jean

> > >

> > > >

> > > >

> > > >

> > > >

> > > From: arianne377 Arianne377@ ..

> > > > To: Breathe-Support@ yahoogroups. com

> > > > Sent: Thu, January 14, 2010 5:26:27 PM

> > > > Subject: My first post

> > > >

> > > >

> > > >

> > >

> > > Hello everyone. I signed on a week or so ago, have read most of

the

> > files and all of the messages since then.

> > > > My name is Ann, I reside in Massachusetts and am 70 years old. I

> > have had 2 hip replacements, one in August of 2006 and the other in

> > January of 2007. Other than that I have only had gall bladder

surgery

> > and a radical mastoidectomy.

> > > > In November of 2009 I was diagnosed with Idiopathic Pulmonary

> > Fibrsis. I had never heard of this before my dx.

> > > > I really thought I had COPD, but the pulmonary doc said no. It's

> > when he told me that he has a patient who had had it for five years

and

> > is doing well, that I began to see the seriousness of it all. He

also

> > said there is no cure, but suggested that I try NAC as his long-term

> > patient uses it and says it works well for her. Needless to say I

got it

> > and am on my first refill.

> > > > I saw this pulmonary doc on November 7 and again on December 28.

At

> > my first visit he took me for a walk with an oxometer and I dropped

to

> > 75. In December I dropped to 82. I'm sorry but I don't know all of

the

> > medical terms as of yet, but sure I will learn. At my first visit he

> > told me I need oxygen when walking. When the Oxygen Company visited

my

> > home, they brought the whole store with them. I panicked. They told

me

> > that the doctor had ordered oxygen 24/7 at level 2. The doctor also

told

> > me that I could get a small container that would fit on my belt. The

> > company told me there was nothing like that. On my second doctor

visit,

> > I asked him about it and he said that he would find a company that

would

> > supply me with one. That company turned out to be the very same

company

> > that I first dealt with.

> > > > This past Monday, a therapist from this company came to my home

to

> > test me for an oxygen system that would only provide oxygen as

needed.

> > She took me for several walks around my house and up and down the

> > stairs, and I failed on every level. It was only as she was about to

> > leave the house that she noticed that the doctor had written a

script

> > for liquid oxygen. I don't want, nor will I use it.

> > > > My husband and I travel often and the liquid would not work, yet

the

> > other so-called portable tanks only supply 45 minutes of oxygen. The

> > therapist also told me that the doctor wrote the script for level 2

> > oxygen at rest, and level 3 with strenuous activity. He mentioned

> > nothing about this to me.

> > > > My oxygen is at 96% at rest and the therapist said that although

it

> > dropped when walking and climbing stairs, I have an immediate

recovery

> > when I sit.

> > > > Needless to say I have not been myself since November. The more

I

> > find out about this disease, the more depressed I become. I have to

talk

> > myself out of bed every morning and force myself to do simple chores

> > around the house.

> > > > I am glad I found this group as you all seem so positive, and I

need

> > that. I know I have rambled and perhaps don't make sense, but I just

> > needed to finally introduce myself and hope some of you can help me

> > through your experiences. Thanks

> > > >

> > > >

> > >

> > >

> > > >

> > > >

> > >

> >

> >

> >

>

> >

> >

>