02 saga; to Sher re. end stage

[Guest guest]

Hi All,

The rep for Caire products (Liberator, Stroller portables,

etc.) talked with the branch mgr. and CEO of the local

02 supplier who hasn't called me back (which was just

bought out by another company called Rotech). They told

him they don't think they have the " manpower " to handle

me as a client. The rep is going to continue to help me -

he's a really nice guy - but he thinks I may end up having

to go with Lincare or Apria. After everything you all have

written about them, that horrifies me. But I'll do what I

have to do to get my oxygen needs met. It's just distressing,

because I need the equipment yesterday.

Kathie,

Phooey on the coughing. I'm doing quite a bit of it

myself, and it hurts and is so exhausting. I hope you

get relief soon!

Kerry,

I LOVE Super O! She's awesome, just like her inspiration

and her creator.

Beth,

Great news about not having PAH. I'm thrilled that you

don't have that on top of everything else. Give me an " S "

(for stable)! Hopefully the other lurking issue won't cause

many problems, at least not for a very long time.

Jane,

I hope Emory calls you soon with the go-ahead for the

STEP Trial. Hope you're having a good weekend.

Bruce,

Rest up, please. You've been quite the busy bee. If we've

waited this long, we can wait a bit longer for your wordy

pearls. :-) I'm sorry you're having increased 02 needs.

Z,

I hope you're feeling a bit steadier. How fast are these

exercises supposed to offer you potential relief? Wall

hugging is no fun.

I hope 's having better days.

K,

I have a wonderful local pulmo here in Ft. Worth, in

addition to my transplant pulmo at UTSW in Dallas.

The local doc suggested to me once to view life in

terms of seasons rather than years. For me, living

through another season (any season) is a real gift.

Currently, I have definite plans to make through the

spring and its beauty.

Mama-Sher,

There is a specific type of PF that is contracted by

people who raise and handle birds. yuk.

Sher, as a sort of answer to your " end stage "

questions, my best answer is not to trouble yourself

with such things. P (I think) posted the medical

definition of end stage IPF. It's a list, but that's all it

is. My docs want desperately to get a lung for me,

but when I asked them if I were in end stage they

said you've been there for a year and a half, but

you're pretty stable. At ANY stage stable is good. At

ANY stage you can plateau out and stay at that stage

for an indefinite time. It's just not good to live in

denial, especially to the point that you can't prepare

for the next steps, which has served me well... I'm

talking about things like higher flow portables, power

chairs, stair chairs, etc. I got them all just a little bit

before I was convinced I needed them, and then realized

I SO needed them.

As far as how you feel in end stage, you can definitely

just tell that you're worse, and you realize that you

could get much worse in a short time. It's an insidious

thing, but you realize how much you've had to give up

in the last year or even the last few months. For me, it's

the sob and drop in sats at the least little thing. It's

the fact that my 2 liquid reservoirs that total 12L are

not doing the trick with exertion. I need my 15L portables,

and they're getting less effective too. It's the coughing

that accompanies any drop in sats, the chest burning,

and the overall feeling of being a sick woman, even when

I'm out doing something I love to do and planned for.

Before, I felt healthy except for sob. I don't feel healthy

any more. I still clean up pretty well, but the unfancified

me can scare me when I look into my own eyes in a

mirror. Sometimes I worry about fainting, about dying

in my sleep, about choking when no one's here, about

my children, etc.

I don't feel like I'm dying today, which is a gift, but I

have no illusions about my health status. My chief

goal and prayer in life is to make it to transplant. And

yet I don't jump every time the phone rings - at all.

Hopefully we don't live any differently in terms of

attitude no matter what our stage of disease. Hopefully,

we try to get the most joy we can out of life, taking

care of ourselves in whatever ways we can. We

appreciate the good days. If we're lucky we feel the

peace of a loving God who comforts us. We can rest

knowing that, whatever the outcome, we'll be okay.

We're all dying, even those who don't have a disease.

We just happen to have a kick-in-the-butt daily

reminder to treasure the gift and to walk with God,

which is actually a blessing.

Hugs and blessings,

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

2/08 (2 centers) Texas

[Guest guest]

Gwynne and Sher

Gwynne

I haven't seen the same problems with Lincare I have with Apria. In

fact, with all my traveling coming up and with the advantages of Caire

in some areas, I had considered just calling to talk to them for future

reference. But, from what I've read generally and from the BBB, they

certainly appear above Apria in most areas.

As to cleaning up well, oh my you really do, Gwynne. I'm sure no one who

sees you knows how much effort it is to get ready. But, the very fact

that you go to that trouble says so much and says how much alive you

still are. I can't imagine yet how the fears of things happening when no

one is there or noticing are. I know that living alone they hit me

sometimes and I'm sure its only a small percentage of how hard they hit

when they come to you. I read several times your statements regarding

now feeling sick as opposed to healthy. Again, I know thats got to be so

difficult as I'm determined to feel healthy as long as possible and I

know you did. If one says you were in denial or I am, then so

what....denial, while knowing the reality but shutting it out a bit, is

a wonderful state. I dread the day that denial is no longer possible and

feel for you losing it.

Sher, as to end stage

The way I think of it is upon death and entering afterlife then I'll

know that I was just in end-stage. Until that time, I'm alive. I don't

care to try to define it. I'm living, each day I'm one day closer to

death, and at some point I will die. But if I start labelling stages

then I might start surrending to them. Then I'm dead even though

technically alive. If I thought about my stage or how much time or what

level 3 months or 6 months from now too much, I'd destroy myself

emotionally and be unable to enjoy any part of life. Intellectually, I

know the realities and planned for them, but emotionally I have to just

live today and make the most of it. Gwynne still finds a way to squeeze

quality from life. I see Joyce who so easily could have placed a label

on where she was before the Flolan treatment but who instead say, " no,

I'm not there yet and I'm going to try this " and look at what she's done

recently and the improvement. She's the first person I've known to use

Flolan and, honestly, I didn't know at the time if I would have tried

it. But, I see what refusing to give up and her choice to do try it has

given her.

There isn't a group of people anywhere in the world that does better at

grabbing every ounce of beauty life has to offer than this group.

>

> Hi All,

> The rep for Caire products (Liberator, Stroller portables,

> etc.) talked with the branch mgr. and CEO of the local

> 02 supplier who hasn't called me back (which was just

> bought out by another company called Rotech). They told

> him they don't think they have the " manpower " to handle

> me as a client. The rep is going to continue to help me -

> he's a really nice guy - but he thinks I may end up having

> to go with Lincare or Apria. After everything you all have

> written about them, that horrifies me. But I'll do what I

> have to do to get my oxygen needs met. It's just distressing,

> because I need the equipment yesterday.

>

> Kathie,

> Phooey on the coughing. I'm doing quite a bit of it

> myself, and it hurts and is so exhausting. I hope you

> get relief soon!

>

> Kerry,

> I LOVE Super O! She's awesome, just like her inspiration

> and her creator.

>

> Beth,

> Great news about not having PAH. I'm thrilled that you

> don't have that on top of everything else. Give me an " S "

> (for stable)! Hopefully the other lurking issue won't cause

> many problems, at least not for a very long time.

>

> Jane,

> I hope Emory calls you soon with the go-ahead for the

> STEP Trial. Hope you're having a good weekend.

>

> Bruce,

> Rest up, please. You've been quite the busy bee. If we've

> waited this long, we can wait a bit longer for your wordy

> pearls. :-) I'm sorry you're having increased 02 needs.

>

> Z,

> I hope you're feeling a bit steadier. How fast are these

> exercises supposed to offer you potential relief? Wall

> hugging is no fun.

> I hope 's having better days.

>

> K,

> I have a wonderful local pulmo here in Ft. Worth, in

> addition to my transplant pulmo at UTSW in Dallas.

> The local doc suggested to me once to view life in

> terms of seasons rather than years. For me, living

> through another season (any season) is a real gift.

> Currently, I have definite plans to make through the

> spring and its beauty.

>

> Mama-Sher,

> There is a specific type of PF that is contracted by

> people who raise and handle birds. yuk.

> Sher, as a sort of answer to your " end stage "

> questions, my best answer is not to trouble yourself

> with such things. P (I think) posted the medical

> definition of end stage IPF. It's a list, but that's all it

> is. My docs want desperately to get a lung for me,

> but when I asked them if I were in end stage they

> said you've been there for a year and a half, but

> you're pretty stable. At ANY stage stable is good. At

> ANY stage you can plateau out and stay at that stage

> for an indefinite time. It's just not good to live in

> denial, especially to the point that you can't prepare

> for the next steps, which has served me well... I'm

> talking about things like higher flow portables, power

> chairs, stair chairs, etc. I got them all just a little bit

> before I was convinced I needed them, and then realized

> I SO needed them.

> As far as how you feel in end stage, you can definitely

> just tell that you're worse, and you realize that you

> could get much worse in a short time. It's an insidious

> thing, but you realize how much you've had to give up

> in the last year or even the last few months. For me, it's

> the sob and drop in sats at the least little thing. It's

> the fact that my 2 liquid reservoirs that total 12L are

> not doing the trick with exertion. I need my 15L portables,

> and they're getting less effective too. It's the coughing

> that accompanies any drop in sats, the chest burning,

> and the overall feeling of being a sick woman, even when

> I'm out doing something I love to do and planned for.

> Before, I felt healthy except for sob. I don't feel healthy

> any more. I still clean up pretty well, but the unfancified

> me can scare me when I look into my own eyes in a

> mirror. Sometimes I worry about fainting, about dying

> in my sleep, about choking when no one's here, about

> my children, etc.

> I don't feel like I'm dying today, which is a gift, but I

> have no illusions about my health status. My chief

> goal and prayer in life is to make it to transplant. And

> yet I don't jump every time the phone rings - at all.

> Hopefully we don't live any differently in terms of

> attitude no matter what our stage of disease. Hopefully,

> we try to get the most joy we can out of life, taking

> care of ourselves in whatever ways we can. We

> appreciate the good days. If we're lucky we feel the

> peace of a loving God who comforts us. We can rest

> knowing that, whatever the outcome, we'll be okay.

> We're all dying, even those who don't have a disease.

> We just happen to have a kick-in-the-butt daily

> reminder to treasure the gift and to walk with God,

> which is actually a blessing.

>

> Hugs and blessings,

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

> 2/08 (2 centers) Texas

>

[Guest guest]

Gwynnie... thank you for sharing yourself with me and my heart hurts that you are living what you write. You are one of the brave ones.

I'm with Lincare and quite happy with them although my needs are not the same as yours. I hope they can/will help you.

I absolutely dislike Apria and I hope as much you DON'T have to go with them. Seems like across the country they are unpopular.

Have a God Blessed day tomorrow.

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

Re: 02 saga; to Sher re. end stage

Gwynne, I do hope you find the 02 Co. that will pamper you with everything you need.

That was quite a wonderful insightful way to look at our lives and this disease. All so true.

Have a great week-end.

Love and Prayers, Peggy

Have a God Blessed Day

Hi All,The rep for Caire products (Liberator, Stroller portables,etc.) talked with the branch mgr. and CEO of the local02 supplier who hasn't called me back (which was justbought out by another company called Rotech). They toldhim they don't think they have the "manpower" to handleme as a client. The rep is going to continue to help me -he's a really nice guy - but he thinks I may end up havingto go with Lincare or Apria. After everything you all havewritten about them, that horrifies me. But I'll do what Ihave to do to get my oxygen needs met. It's just distressing,because I need the equipment yesterday.Kathie,Phooey on the coughing. I'm doing quite a bit of itmyself, and it hurts and is so exhausting. I hope youget relief soon!Kerry,I LOVE Super O! She's awesome, just like her inspirationand her creator. Beth,Great news about not having PAH. I'm thrilled that youdon't have that on top of everything else. Give me an "S"(for stable)! Hopefully the other lurking issue won't causemany problems, at least not for a very long time.Jane,I hope Emory calls you soon with the go-ahead for theSTEP Trial. Hope you're having a good weekend.Bruce,Rest up, please. You've been quite the busy bee. If we'vewaited this long, we can wait a bit longer for your wordypearls. :-) I'm sorry you're having increased 02 needs. Z,I hope you're feeling a bit steadier. How fast are theseexercises supposed to offer you potential relief? Wallhugging is no fun.I hope 's having better days. K,I have a wonderful local pulmo here in Ft. Worth, inaddition to my transplant pulmo at UTSW in Dallas.The local doc suggested to me once to view life interms of seasons rather than years. For me, livingthrough another season (any season) is a real gift.Currently, I have definite plans to make through thespring and its beauty.Mama-Sher,There is a specific type of PF that is contracted bypeople who raise and handle birds. yuk.Sher, as a sort of answer to your "end stage"questions, my best answer is not to trouble yourselfwith such things. P (I think) posted the medicaldefinition of end stage IPF. It's a list, but that's all itis. My docs want desperately to get a lung for me,but when I asked them if I were in end stage theysaid you've been there for a year and a half, butyou're pretty stable. At ANY stage stable is good. AtANY stage you can plateau out and stay at that stagefor an indefinite time. It's just not good to live indenial, especially to the point that you can't preparefor the next steps, which has served me well... I'mtalking about things like higher flow portables, powerchairs, stair chairs, etc. I got them all just a little bitbefore I was convinced I needed them, and then realizedI SO needed them.As far as how you feel in end stage, you can definitelyjust tell that you're worse, and you realize that youcould get much worse in a short time. It's an insidiousthing, but you realize how much you've had to give upin the last year or even the last few months. For me, it'sthe sob and drop in sats at the least little thing. It'sthe fact that my 2 liquid reservoirs that total 12L arenot doing the trick with exertion. I need my 15L portables,and they're getting less effective too. It's the coughingthat accompanies any drop in sats, the chest burning,and the overall feeling of being a sick woman, even whenI'm out doing something I love to do and planned for.Before, I felt healthy except for sob. I don't feel healthyany more. I still clean up pretty well, but the unfancifiedme can scare me when I look into my own eyes in amirror. Sometimes I worry about fainting, about dyingin my sleep, about choking when no one's here, aboutmy children, etc.I don't feel like I'm dying today, which is a gift, but Ihave no illusions about my health status. My chiefgoal and prayer in life is to make it to transplant. Andyet I don't jump every time the phone rings - at all.Hopefully we don't live any differently in terms ofattitude no matter what our stage of disease. Hopefully,we try to get the most joy we can out of life, takingcare of ourselves in whatever ways we can. Weappreciate the good days. If we're lucky we feel thepeace of a loving God who comforts us. We can restknowing that, whatever the outcome, we'll be okay.We're all dying, even those who don't have a disease.We just happen to have a kick-in-the-butt dailyreminder to treasure the gift and to walk with God,which is actually a blessing.Hugs and blessings,Gwynne 56 IPF 7/04 listed for transplant 3/07 and2/08 (2 centers) Texas

[Guest guest]

Gwynnie... thank you for sharing yourself with me and my heart hurts that you are living what you write. You are one of the brave ones.

I'm with Lincare and quite happy with them although my needs are not the same as yours. I hope they can/will help you.

I absolutely dislike Apria and I hope as much you DON'T have to go with them. Seems like across the country they are unpopular.

Have a God Blessed day tomorrow.

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

Re: 02 saga; to Sher re. end stage

Gwynne, I do hope you find the 02 Co. that will pamper you with everything you need.

That was quite a wonderful insightful way to look at our lives and this disease. All so true.

Have a great week-end.

Love and Prayers, Peggy

Have a God Blessed Day

Hi All,The rep for Caire products (Liberator, Stroller portables,etc.) talked with the branch mgr. and CEO of the local02 supplier who hasn't called me back (which was justbought out by another company called Rotech). They toldhim they don't think they have the "manpower" to handleme as a client. The rep is going to continue to help me -he's a really nice guy - but he thinks I may end up havingto go with Lincare or Apria. After everything you all havewritten about them, that horrifies me. But I'll do what Ihave to do to get my oxygen needs met. It's just distressing,because I need the equipment yesterday.Kathie,Phooey on the coughing. I'm doing quite a bit of itmyself, and it hurts and is so exhausting. I hope youget relief soon!Kerry,I LOVE Super O! She's awesome, just like her inspirationand her creator. Beth,Great news about not having PAH. I'm thrilled that youdon't have that on top of everything else. Give me an "S"(for stable)! Hopefully the other lurking issue won't causemany problems, at least not for a very long time.Jane,I hope Emory calls you soon with the go-ahead for theSTEP Trial. Hope you're having a good weekend.Bruce,Rest up, please. You've been quite the busy bee. If we'vewaited this long, we can wait a bit longer for your wordypearls. :-) I'm sorry you're having increased 02 needs. Z,I hope you're feeling a bit steadier. How fast are theseexercises supposed to offer you potential relief? Wallhugging is no fun.I hope 's having better days. K,I have a wonderful local pulmo here in Ft. Worth, inaddition to my transplant pulmo at UTSW in Dallas.The local doc suggested to me once to view life interms of seasons rather than years. For me, livingthrough another season (any season) is a real gift.Currently, I have definite plans to make through thespring and its beauty.Mama-Sher,There is a specific type of PF that is contracted bypeople who raise and handle birds. yuk.Sher, as a sort of answer to your "end stage"questions, my best answer is not to trouble yourselfwith such things. P (I think) posted the medicaldefinition of end stage IPF. It's a list, but that's all itis. My docs want desperately to get a lung for me,but when I asked them if I were in end stage theysaid you've been there for a year and a half, butyou're pretty stable. At ANY stage stable is good. AtANY stage you can plateau out and stay at that stagefor an indefinite time. It's just not good to live indenial, especially to the point that you can't preparefor the next steps, which has served me well... I'mtalking about things like higher flow portables, powerchairs, stair chairs, etc. I got them all just a little bitbefore I was convinced I needed them, and then realizedI SO needed them.As far as how you feel in end stage, you can definitelyjust tell that you're worse, and you realize that youcould get much worse in a short time. It's an insidiousthing, but you realize how much you've had to give upin the last year or even the last few months. For me, it'sthe sob and drop in sats at the least little thing. It'sthe fact that my 2 liquid reservoirs that total 12L arenot doing the trick with exertion. I need my 15L portables,and they're getting less effective too. It's the coughingthat accompanies any drop in sats, the chest burning,and the overall feeling of being a sick woman, even whenI'm out doing something I love to do and planned for.Before, I felt healthy except for sob. I don't feel healthyany more. I still clean up pretty well, but the unfancifiedme can scare me when I look into my own eyes in amirror. Sometimes I worry about fainting, about dyingin my sleep, about choking when no one's here, aboutmy children, etc.I don't feel like I'm dying today, which is a gift, but Ihave no illusions about my health status. My chiefgoal and prayer in life is to make it to transplant. Andyet I don't jump every time the phone rings - at all.Hopefully we don't live any differently in terms ofattitude no matter what our stage of disease. Hopefully,we try to get the most joy we can out of life, takingcare of ourselves in whatever ways we can. Weappreciate the good days. If we're lucky we feel thepeace of a loving God who comforts us. We can restknowing that, whatever the outcome, we'll be okay.We're all dying, even those who don't have a disease.We just happen to have a kick-in-the-butt dailyreminder to treasure the gift and to walk with God,which is actually a blessing.Hugs and blessings,Gwynne 56 IPF 7/04 listed for transplant 3/07 and2/08 (2 centers) Texas