Re: continuous air flow; quality of life

March 31, 2008

Gwynnie....I prefer 'end stage' to 'terminal' as a reference point too! I like 'late stage' even better....it DOES help explain where we are to those who want/need to know. Yeah. From now on I'll use "late stage" if I need a description.

Yes Gwynnie, you have proven one can be in late stage progression for a long while.

I agree, we do grieve our losses.

I hope this post finds your O2 closer to being met! How frustrating!!

Love to you too friend.

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

continuous air flow; quality of life

Kerry,I can completely identify with having a hard timeimagining taking a deep breath. It's been so manyyears. Another thing I do remember but missterribly is blessed silence - the kind I knew beforehaving a high flow hose up the nose. aahhhhh.Thank you for the hummingbird pics.They're simplyamazing creatures. At my other house, they used tolove my hybiscus blooms.Geeta and Newbies,If you're on pulse and still have the feeling that you'rehaving to pull a little too hard for a good breath, youneed either a higher flow pulse or it's time to go tocontinuous. It creeps up on you, so watch your satsand how you feel (and don't wait for your doctor totell you when it's time, although of course talk to yourdoctor). If pulse isn't adequate for you any more, you'llshow it and feel it. Probably some people can get bywith continuous for exertion and pulse at rest. I gota portable tank that had both before I neededcontinuous all the time, because I knew that wascoming. If you need continuous, don't try to makedo with pulse, because it hurts your body. Once youleave pulse, you leave it permanently. My portablesonly have continuous now that I'm on a very highflow.Mama Sher,I'm right there with you about being up front, direct,forthright, etc. It isn't for everyone. When I got sickI was told I was in the mild to moderate stage of IPF.My doctors never used the term "end stage" or anyother term until I asked them. When I'm asked, Ialways say I have a serious illness that's chronicand progressive.I'm not really bothered by the term end stage, becauseI refuse to be defined by the disease at any stage. Insome ways knowing the term helps me to accept mylimitations - there's a REASON why I can't do certainthings anymore. I don't even call this MY disease... it'sa disease I happen to have.I actually prefer end stage to terminal, because in truthour disease is still terminal, and can begin to progressquickly, even in the earliest stages (which is one of thefirst things you read if you do any research, although Ithink many people read right past that part). Fortunately,I have already proven that you can be in late stage fora long time - forget the 6-month or whatever timeframe that some people equate to it - and I'm stillloving the word "stable." Unless you saw me on astay-in-bed day, you wouldn't define me by my illnesseither.My quality of life has taken some dips, and I've grievedthe losses. My activities have been curtailed, but so farI'm still able to ensure that I will have quality of lifein ways that are appropriate and meaningful to me. Iknow you live that way already. Guess I'm in a prettypensive mood, but I had a good day. Love to you.Hugs and blessings,Gwynne 56 IPF 7/04 listed for transplant 3/07 and2/08 Texas

March 31, 2008

Sher, my first automatic response was going to be " well, it isn't so bad...but

yes, right now

it feels like I've been sick for so long...a few more days of Levaquin and I

will feel better

and start getting ready for my trip to TX. I HAVE to be better by then, I

already have my

tix!

Kathie WA

> >

> > Gwynnie....I prefer 'end stage' to 'terminal' as a reference point too! I

like 'late stage'

> even better....it DOES help explain where we are to those who want/need to

know.

Yeah.

> From now on I'll use " late stage " if I need a description.

> > Yes Gwynnie, you have proven one can be in late stage progression for a

long while.

> > I agree, we do grieve our losses.

> > I hope this post finds your O2 closer to being met! How frustrating!!

> > Love to you too friend.

> >

> > Mama-Sher, age 69. IPF 3-06, OR.

> > Don't fret about tomorrow, God is already there!

> >

> > continuous air flow; quality of life

> >

> > Kerry,

> > I can completely identify with having a hard time

> > imagining taking a deep breath. It's been so many

> > years. Another thing I do remember but miss

> > terribly is blessed silence - the kind I knew before

> > having a high flow hose up the nose. aahhhhh.

> > Thank you for the hummingbird pics.They're simply

> > amazing creatures. At my other house, they used to

> > love my hybiscus blooms.

> >

> > Geeta and Newbies,

> > If you're on pulse and still have the feeling that you're

> > having to pull a little too hard for a good breath, you

> > need either a higher flow pulse or it's time to go to

> > continuous. It creeps up on you, so watch your sats

> > and how you feel (and don't wait for your doctor to

> > tell you when it's time, although of course talk to your

> > doctor). If pulse isn't adequate for you any more, you'll

> > show it and feel it. Probably some people can get by

> > with continuous for exertion and pulse at rest. I got

> > a portable tank that had both before I needed

> > continuous all the time, because I knew that was

> > coming. If you need continuous, don't try to make

> > do with pulse, because it hurts your body. Once you

> > leave pulse, you leave it permanently. My portables

> > only have continuous now that I'm on a very high

> > flow.

> >

> > Mama Sher,

> > I'm right there with you about being up front, direct,

> > forthright, etc. It isn't for everyone. When I got sick

> > I was told I was in the mild to moderate stage of IPF.

> > My doctors never used the term " end stage " or any

> > other term until I asked them. When I'm asked, I

> > always say I have a serious illness that's chronic

> > and progressive.

> > I'm not really bothered by the term end stage, because

> > I refuse to be defined by the disease at any stage. In

> > some ways knowing the term helps me to accept my

> > limitations - there's a REASON why I can't do certain

> > things anymore. I don't even call this MY disease... it's

> > a disease I happen to have.

> > I actually prefer end stage to terminal, because in truth

> > our disease is still terminal, and can begin to progress

> > quickly, even in the earliest stages (which is one of the

> > first things you read if you do any research, although I

> > think many people read right past that part). Fortunately,

> > I have already proven that you can be in late stage for

> > a long time - forget the 6-month or whatever time

> > frame that some people equate to it - and I'm still

> > loving the word " stable. " Unless you saw me on a

> > stay-in-bed day, you wouldn't define me by my illness

> > either.

> > My quality of life has taken some dips, and I've grieved

> > the losses. My activities have been curtailed, but so far

> > I'm still able to ensure that I will have quality of life

> > in ways that are appropriate and meaningful to me. I

> > know you live that way already. Guess I'm in a pretty

> > pensive mood, but I had a good day. Love to you.

> >

> > Hugs and blessings,

> > Gwynne 56 IPF 7/04 listed for transplant 3/07 and

> > 2/08 Texas

> >

>

March 31, 2008

Sher, my first automatic response was going to be " well, it isn't so bad...but

yes, right now

it feels like I've been sick for so long...a few more days of Levaquin and I

will feel better

and start getting ready for my trip to TX. I HAVE to be better by then, I

already have my

tix!

Kathie WA

> >

> > Gwynnie....I prefer 'end stage' to 'terminal' as a reference point too! I

like 'late stage'

> even better....it DOES help explain where we are to those who want/need to

know.

Yeah.

> From now on I'll use " late stage " if I need a description.

> > Yes Gwynnie, you have proven one can be in late stage progression for a

long while.

> > I agree, we do grieve our losses.

> > I hope this post finds your O2 closer to being met! How frustrating!!

> > Love to you too friend.

> >

> > Mama-Sher, age 69. IPF 3-06, OR.

> > Don't fret about tomorrow, God is already there!

> >

> > continuous air flow; quality of life

> >

> > Kerry,

> > I can completely identify with having a hard time

> > imagining taking a deep breath. It's been so many

> > years. Another thing I do remember but miss

> > terribly is blessed silence - the kind I knew before

> > having a high flow hose up the nose. aahhhhh.

> > Thank you for the hummingbird pics.They're simply

> > amazing creatures. At my other house, they used to

> > love my hybiscus blooms.

> >

> > Geeta and Newbies,

> > If you're on pulse and still have the feeling that you're

> > having to pull a little too hard for a good breath, you

> > need either a higher flow pulse or it's time to go to

> > continuous. It creeps up on you, so watch your sats

> > and how you feel (and don't wait for your doctor to

> > tell you when it's time, although of course talk to your

> > doctor). If pulse isn't adequate for you any more, you'll

> > show it and feel it. Probably some people can get by

> > with continuous for exertion and pulse at rest. I got

> > a portable tank that had both before I needed

> > continuous all the time, because I knew that was

> > coming. If you need continuous, don't try to make

> > do with pulse, because it hurts your body. Once you

> > leave pulse, you leave it permanently. My portables

> > only have continuous now that I'm on a very high

> > flow.

> >

> > Mama Sher,

> > I'm right there with you about being up front, direct,

> > forthright, etc. It isn't for everyone. When I got sick

> > I was told I was in the mild to moderate stage of IPF.

> > My doctors never used the term " end stage " or any

> > other term until I asked them. When I'm asked, I

> > always say I have a serious illness that's chronic

> > and progressive.

> > I'm not really bothered by the term end stage, because

> > I refuse to be defined by the disease at any stage. In

> > some ways knowing the term helps me to accept my

> > limitations - there's a REASON why I can't do certain

> > things anymore. I don't even call this MY disease... it's

> > a disease I happen to have.

> > I actually prefer end stage to terminal, because in truth

> > our disease is still terminal, and can begin to progress

> > quickly, even in the earliest stages (which is one of the

> > first things you read if you do any research, although I

> > think many people read right past that part). Fortunately,

> > I have already proven that you can be in late stage for

> > a long time - forget the 6-month or whatever time

> > frame that some people equate to it - and I'm still

> > loving the word " stable. " Unless you saw me on a

> > stay-in-bed day, you wouldn't define me by my illness

> > either.

> > My quality of life has taken some dips, and I've grieved

> > the losses. My activities have been curtailed, but so far

> > I'm still able to ensure that I will have quality of life

> > in ways that are appropriate and meaningful to me. I

> > know you live that way already. Guess I'm in a pretty

> > pensive mood, but I had a good day. Love to you.

> >

> > Hugs and blessings,

> > Gwynne 56 IPF 7/04 listed for transplant 3/07 and

> > 2/08 Texas

> >

>

March 31, 2008

Kathie...going to TX will be such an uplift for you and everybody who meets you! I wish I could be there but can't.

Yes, I did read your post to and replied to you too.

I'm getting more concerned about my heart too. My SATS stay up fairly good but the heart beats on the oximeter are up and down drastically.

I didn't realize once on a vent never off. What is the reason you can't get off?

12 years is a long time to fight this disease...I think of Joyce too and others who were Dx approx 10 years ago. What you have contributed in experience and knowledge is so valuable.

How are your family doing? Do you have any family close by for support?

Sleep well.

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

continuous air flow; quality of life> > > > > > Kerry,> > I can completely identify with having a hard time> > imagining taking a deep breath. It's been so many> > years. Another thing I do remember but miss> > terribly is blessed silence - the kind I knew before> > having a high flow hose up the nose. aahhhhh.> > Thank you for the hummingbird pics.They're simply> > amazing creatures. At my other house, they used to> > love my hybiscus blooms.> > > > Geeta and Newbies,> > If you're on pulse and still have the feeling that you're> > having to pull a little too hard for a good breath, you> > need either a higher flow pulse or it's time to go to> > continuous. It creeps up on you, so watch your sats> > and how you feel (and don't wait for your doctor to> > tell you when it's time, although of course talk to your> > doctor). If pulse isn't adequate for you any more, you'll> > show it and feel it. Probably some people can get by> > with continuous for exertion and pulse at rest. I got> > a portable tank that had both before I needed> > continuous all the time, because I knew that was> > coming. If you need continuous, don't try to make> > do with pulse, because it hurts your body. Once you> > leave pulse, you leave it permanently. My portables> > only have continuous now that I'm on a very high> > flow.> > > > Mama Sher,> > I'm right there with you about being up front, direct,> > forthright, etc. It isn't for everyone. When I got sick> > I was told I was in the mild to moderate stage of IPF.> > My doctors never used the term "end stage" or any> > other term until I asked them. When I'm asked, I> > always say I have a serious illness that's chronic> > and progressive.> > I'm not really bothered by the term end stage, because> > I refuse to be defined by the disease at any stage. In> > some ways knowing the term helps me to accept my> > limitations - there's a REASON why I can't do certain> > things anymore. I don't even call this MY disease... it's> > a disease I happen to have.> > I actually prefer end stage to terminal, because in truth> > our disease is still terminal, and can begin to progress> > quickly, even in the earliest stages (which is one of the> > first things you read if you do any research, although I> > think many people read right past that part). Fortunately,> > I have already proven that you can be in late stage for> > a long time - forget the 6-month or whatever time> > frame that some people equate to it - and I'm still> > loving the word "stable." Unless you saw me on a> > stay-in-bed day, you wouldn't define me by my illness> > either.> > My quality of life has taken some dips, and I've grieved> > the losses. My activities have been curtailed, but so far> > I'm still able to ensure that I will have quality of life> > in ways that are appropriate and meaningful to me. I> > know you live that way already. Guess I'm in a pretty> > pensive mood, but I had a good day. Love to you.> > > > Hugs and blessings,> > Gwynne 56 IPF 7/04 listed for transplant 3/07 and> > 2/08 Texas> >>

March 31, 2008

Well, the monkeys got my first response, I'll try again later although I suspect

the lost

message was probably one of my best - well written, humorous, right to the point

with

current information or NOT.

Kathie

> > > >

> > > > Gwynnie....I prefer 'end stage' to 'terminal' as a reference

> point too! I like 'late stage'

> > > even better....it DOES help explain where we are to those who

> want/need to know.

> > Yeah.

> > > From now on I'll use " late stage " if I need a description.

> > > > Yes Gwynnie, you have proven one can be in late stage

> progression for a long while.

> > > > I agree, we do grieve our losses.

> > > > I hope this post finds your O2 closer to being met! How

> frustrating!!

> > > > Love to you too friend.

> > > >

> > > > Mama-Sher, age 69. IPF 3-06, OR.

> > > > Don't fret about tomorrow, God is already there!

> > > >

> > > > continuous air flow; quality of life

> > > >

> > > > Kerry,

> > > > I can completely identify with having a hard time

> > > > imagining taking a deep breath. It's been so many

> > > > years. Another thing I do remember but miss

> > > > terribly is blessed silence - the kind I knew before

> > > > having a high flow hose up the nose. aahhhhh.

> > > > Thank you for the hummingbird pics.They're simply

> > > > amazing creatures. At my other house, they used to

> > > > love my hybiscus blooms.

> > > >

> > > > Geeta and Newbies,

> > > > If you're on pulse and still have the feeling that you're

> > > > having to pull a little too hard for a good breath, you

> > > > need either a higher flow pulse or it's time to go to

> > > > continuous. It creeps up on you, so watch your sats

> > > > and how you feel (and don't wait for your doctor to

> > > > tell you when it's time, although of course talk to your

> > > > doctor). If pulse isn't adequate for you any more, you'll

> > > > show it and feel it. Probably some people can get by

> > > > with continuous for exertion and pulse at rest. I got

> > > > a portable tank that had both before I needed

> > > > continuous all the time, because I knew that was

> > > > coming. If you need continuous, don't try to make

> > > > do with pulse, because it hurts your body. Once you

> > > > leave pulse, you leave it permanently. My portables

> > > > only have continuous now that I'm on a very high

> > > > flow.

> > > >

> > > > Mama Sher,

> > > > I'm right there with you about being up front, direct,

> > > > forthright, etc. It isn't for everyone. When I got sick

> > > > I was told I was in the mild to moderate stage of IPF.

> > > > My doctors never used the term " end stage " or any

> > > > other term until I asked them. When I'm asked, I

> > > > always say I have a serious illness that's chronic

> > > > and progressive.

> > > > I'm not really bothered by the term end stage, because

> > > > I refuse to be defined by the disease at any stage. In

> > > > some ways knowing the term helps me to accept my

> > > > limitations - there's a REASON why I can't do certain

> > > > things anymore. I don't even call this MY disease... it's

> > > > a disease I happen to have.

> > > > I actually prefer end stage to terminal, because in truth

> > > > our disease is still terminal, and can begin to progress

> > > > quickly, even in the earliest stages (which is one of the

> > > > first things you read if you do any research, although I

> > > > think many people read right past that part). Fortunately,

> > > > I have already proven that you can be in late stage for

> > > > a long time - forget the 6-month or whatever time

> > > > frame that some people equate to it - and I'm still

> > > > loving the word " stable. " Unless you saw me on a

> > > > stay-in-bed day, you wouldn't define me by my illness

> > > > either.

> > > > My quality of life has taken some dips, and I've grieved

> > > > the losses. My activities have been curtailed, but so far

> > > > I'm still able to ensure that I will have quality of life

> > > > in ways that are appropriate and meaningful to me. I

> > > > know you live that way already. Guess I'm in a pretty

> > > > pensive mood, but I had a good day. Love to you.

> > > >

> > > > Hugs and blessings,

> > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 and

> > > > 2/08 Texas

> > > >

> > >

> >

>

April 1, 2008

Kathie...shucks to your lost post. I wondered what happened....could it still be in your "sent items'?

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

continuous air flow; quality of life> > > >> > > >> > > > Kerry,> > > > I can completely identify with having a hard time> > > > imagining taking a deep breath. It's been so many> > > > years. Another thing I do remember but miss> > > > terribly is blessed silence - the kind I knew before> > > > having a high flow hose up the nose. aahhhhh.> > > > Thank you for the hummingbird pics.They're simply> > > > amazing creatures. At my other house, they used to> > > > love my hybiscus blooms.> > > >> > > > Geeta and Newbies,> > > > If you're on pulse and still have the feeling that you're> > > > having to pull a little too hard for a good breath, you> > > > need either a higher flow pulse or it's time to go to> > > > continuous. It creeps up on you, so watch your sats> > > > and how you feel (and don't wait for your doctor to> > > > tell you when it's time, although of course talk to your> > > > doctor). If pulse isn't adequate for you any more, you'll> > > > show it and feel it. Probably some people can get by> > > > with continuous for exertion and pulse at rest. I got> > > > a portable tank that had both before I needed> > > > continuous all the time, because I knew that was> > > > coming. If you need continuous, don't try to make> > > > do with pulse, because it hurts your body. Once you> > > > leave pulse, you leave it permanently. My portables> > > > only have continuous now that I'm on a very high> > > > flow.> > > >> > > > Mama Sher,> > > > I'm right there with you about being up front, direct,> > > > forthright, etc. It isn't for everyone. When I got sick> > > > I was told I was in the mild to moderate stage of IPF.> > > > My doctors never used the term "end stage" or any> > > > other term until I asked them. When I'm asked, I> > > > always say I have a serious illness that's chronic> > > > and progressive.> > > > I'm not really bothered by the term end stage, because> > > > I refuse to be defined by the disease at any stage. In> > > > some ways knowing the term helps me to accept my> > > > limitations - there's a REASON why I can't do certain> > > > things anymore. I don't even call this MY disease... it's> > > > a disease I happen to have.> > > > I actually prefer end stage to terminal, because in truth> > > > our disease is still terminal, and can begin to progress> > > > quickly, even in the earliest stages (which is one of the> > > > first things you read if you do any research, although I> > > > think many people read right past that part). Fortunately,> > > > I have already proven that you can be in late stage for> > > > a long time - forget the 6-month or whatever time> > > > frame that some people equate to it - and I'm still> > > > loving the word "stable." Unless you saw me on a> > > > stay-in-bed day, you wouldn't define me by my illness> > > > either.> > > > My quality of life has taken some dips, and I've grieved> > > > the losses. My activities have been curtailed, but so far> > > > I'm still able to ensure that I will have quality of life> > > > in ways that are appropriate and meaningful to me. I> > > > know you live that way already. Guess I'm in a pretty> > > > pensive mood, but I had a good day. Love to you.> > > >> > > > Hugs and blessings,> > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 and> > > > 2/08 Texas> > > >> > >> >>

April 1, 2008

Sher,

Happened to me 2x today, I wonder if I'm hitting cancel in error. I e-mail from

the web

site so I don't know where to find " sent items " .

Kathie

> > > > >

> > > > > Gwynnie....I prefer 'end stage' to 'terminal' as a reference

> > point too! I like 'late stage'

> > > > even better....it DOES help explain where we are to those who

> > want/need to know.

> > > Yeah.

> > > > From now on I'll use " late stage " if I need a description.

> > > > > Yes Gwynnie, you have proven one can be in late stage

> > progression for a long while.

> > > > > I agree, we do grieve our losses.

> > > > > I hope this post finds your O2 closer to being met! How

> > frustrating!!

> > > > > Love to you too friend.

> > > > >

> > > > > Mama-Sher, age 69. IPF 3-06, OR.

> > > > > Don't fret about tomorrow, God is already there!

> > > > >

> > > > > continuous air flow; quality of life

> > > > >

> > > > > Kerry,

> > > > > I can completely identify with having a hard time

> > > > > imagining taking a deep breath. It's been so many

> > > > > years. Another thing I do remember but miss

> > > > > terribly is blessed silence - the kind I knew before

> > > > > having a high flow hose up the nose. aahhhhh.

> > > > > Thank you for the hummingbird pics.They're simply

> > > > > amazing creatures. At my other house, they used to

> > > > > love my hybiscus blooms.

> > > > >

> > > > > Geeta and Newbies,

> > > > > If you're on pulse and still have the feeling that you're

> > > > > having to pull a little too hard for a good breath, you

> > > > > need either a higher flow pulse or it's time to go to

> > > > > continuous. It creeps up on you, so watch your sats

> > > > > and how you feel (and don't wait for your doctor to

> > > > > tell you when it's time, although of course talk to your

> > > > > doctor). If pulse isn't adequate for you any more, you'll

> > > > > show it and feel it. Probably some people can get by

> > > > > with continuous for exertion and pulse at rest. I got

> > > > > a portable tank that had both before I needed

> > > > > continuous all the time, because I knew that was

> > > > > coming. If you need continuous, don't try to make

> > > > > do with pulse, because it hurts your body. Once you

> > > > > leave pulse, you leave it permanently. My portables

> > > > > only have continuous now that I'm on a very high

> > > > > flow.

> > > > >

> > > > > Mama Sher,

> > > > > I'm right there with you about being up front, direct,

> > > > > forthright, etc. It isn't for everyone. When I got sick

> > > > > I was told I was in the mild to moderate stage of IPF.

> > > > > My doctors never used the term " end stage " or any

> > > > > other term until I asked them. When I'm asked, I

> > > > > always say I have a serious illness that's chronic

> > > > > and progressive.

> > > > > I'm not really bothered by the term end stage, because

> > > > > I refuse to be defined by the disease at any stage. In

> > > > > some ways knowing the term helps me to accept my

> > > > > limitations - there's a REASON why I can't do certain

> > > > > things anymore. I don't even call this MY disease... it's

> > > > > a disease I happen to have.

> > > > > I actually prefer end stage to terminal, because in truth

> > > > > our disease is still terminal, and can begin to progress

> > > > > quickly, even in the earliest stages (which is one of the

> > > > > first things you read if you do any research, although I

> > > > > think many people read right past that part). Fortunately,

> > > > > I have already proven that you can be in late stage for

> > > > > a long time - forget the 6-month or whatever time

> > > > > frame that some people equate to it - and I'm still

> > > > > loving the word " stable. " Unless you saw me on a

> > > > > stay-in-bed day, you wouldn't define me by my illness

> > > > > either.

> > > > > My quality of life has taken some dips, and I've grieved

> > > > > the losses. My activities have been curtailed, but so far

> > > > > I'm still able to ensure that I will have quality of life

> > > > > in ways that are appropriate and meaningful to me. I

> > > > > know you live that way already. Guess I'm in a pretty

> > > > > pensive mood, but I had a good day. Love to you.

> > > > >

> > > > > Hugs and blessings,

> > > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 and

> > > > > 2/08 Texas

> > > > >

> > > >

> > >

> >

>

April 1, 2008

Kathie...I tried the web site for awhile and had glitches I didn't know how to solve so I'm in my own email and like it fine. If I'm going to be gone I'll go to the web and click over onto web only and then reverse when back home. Sometimes I get flooded but I've become a pretty quick scanner............

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

continuous air flow; quality of life> > > > >> > > > >> > > > > Kerry,> > > > > I can completely identify with having a hard time> > > > > imagining taking a deep breath. It's been so many> > > > > years. Another thing I do remember but miss> > > > > terribly is blessed silence - the kind I knew before> > > > > having a high flow hose up the nose. aahhhhh.> > > > > Thank you for the hummingbird pics.They're simply> > > > > amazing creatures. At my other house, they used to> > > > > love my hybiscus blooms.> > > > >> > > > > Geeta and Newbies,> > > > > If you're on pulse and still have the feeling that you're> > > > > having to pull a little too hard for a good breath, you> > > > > need either a higher flow pulse or it's time to go to> > > > > continuous. It creeps up on you, so watch your sats> > > > > and how you feel (and don't wait for your doctor to> > > > > tell you when it's time, although of course talk to your> > > > > doctor). If pulse isn't adequate for you any more, you'll> > > > > show it and feel it. Probably some people can get by> > > > > with continuous for exertion and pulse at rest. I got> > > > > a portable tank that had both before I needed> > > > > continuous all the time, because I knew that was> > > > > coming. If you need continuous, don't try to make> > > > > do with pulse, because it hurts your body. Once you> > > > > leave pulse, you leave it permanently. My portables> > > > > only have continuous now that I'm on a very high> > > > > flow.> > > > >> > > > > Mama Sher,> > > > > I'm right there with you about being up front, direct,> > > > > forthright, etc. It isn't for everyone. When I got sick> > > > > I was told I was in the mild to moderate stage of IPF.> > > > > My doctors never used the term "end stage" or any> > > > > other term until I asked them. When I'm asked, I> > > > > always say I have a serious illness that's chronic> > > > > and progressive.> > > > > I'm not really bothered by the term end stage, because> > > > > I refuse to be defined by the disease at any stage. In> > > > > some ways knowing the term helps me to accept my> > > > > limitations - there's a REASON why I can't do certain> > > > > things anymore. I don't even call this MY disease... it's> > > > > a disease I happen to have.> > > > > I actually prefer end stage to terminal, because in truth> > > > > our disease is still terminal, and can begin to progress> > > > > quickly, even in the earliest stages (which is one of the> > > > > first things you read if you do any research, although I> > > > > think many people read right past that part). Fortunately,> > > > > I have already proven that you can be in late stage for> > > > > a long time - forget the 6-month or whatever time> > > > > frame that some people equate to it - and I'm still> > > > > loving the word "stable." Unless you saw me on a> > > > > stay-in-bed day, you wouldn't define me by my illness> > > > > either.> > > > > My quality of life has taken some dips, and I've grieved> > > > > the losses. My activities have been curtailed, but so far> > > > > I'm still able to ensure that I will have quality of life> > > > > in ways that are appropriate and meaningful to me. I> > > > > know you live that way already. Guess I'm in a pretty> > > > > pensive mood, but I had a good day. Love to you.> > > > >> > > > > Hugs and blessings,> > > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 and> > > > > 2/08 Texas> > > > >> > > >> > >> >>

April 1, 2008

Sher, I'll try again although please read disclaimer in previous post giggle,

gigle

Many people are placed on a vent and then were able to breathe for themselves

and get

off. It just depends on why you are on it and for how long.

I have 2 daughters, Kristee lives in Bellingham with her spouse and kids. My

oldest

daughter, Kim is married and lives in Redondo Beach, CA.-(pix in my album)

Kathie

-- In Breathe-Support , " Sher Bauman " wrote:

>

> Kathie...shucks to your lost post. I wondered what happened....could it still

be in your

" sent items'?

> Mama-Sher, age 69. IPF 3-06, OR.

> Don't fret about tomorrow, God is already there!

>

> continuous air flow; quality of life