Re: Need Guidance - Need to Vent - oxy needs have changed

September 9, 2009

memories of the ocean -- yes

while on the beach this weekend, i visualized lying on the beach in a hospital bed, hooked up to whatever, listening to the sounds of the waves and the birds

at any rate, Lou was hooked up to about 3 concentrators at home

they put the concentrators in a separate room with an open window for ventilation and closed the door -- noise and maybe heat -- concentrators throw off tons of heat

then hooked up the tube for her to use

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Need Guidance - Need to Vent - oxy needs have changedTo: Breathe-Support Date: Wednesday, September 9, 2009, 3:51 PM

Dyane,Thank so much for your gracious offer. Because of my fibrosis the only option they have given me is the chemo treatment. If I didn't have the fibrosis, which they think is why I have cancer now, they would remove my lt lung and all would be better. I just have no choices but to find some comfort and finding a way to get more oxy at home. Thank you with all my heart. ellen> >> > I'm going to give a readers digest version update on what has been> going on with me, need to vent and need guidance - Hate Sympathy!!! -> >> > Soooooo - Went to Cleveland Clinic for evaluation on transplant. Went> pretty well, then the Cleveland Dr saw something on CT, he said it was> probably nothing, but before we go ahead I need a Pet Scan. OSU did a> pet Scan and they found a tumor in left lung, byopsy shows cancer,> transplant is out. OK that is the way it goes, I at least had 61> interesting years, or what ever it turns out to be, I know the old

bus> can hit me thing. Got my options yesterday, tumor too big for radiation> treatments. Butttttt they do have a chemo that works very well at> shrinking this type of cancer, doesn't usually make you sick or you hair> fall out. Ok, as long as it hasn't metastasized to my brain. I haven't> heard from them today so I am a little worried since they had access to> the MRI results yesterday. So that is the cancer thing, but I am> wondering how to deal with the ipf thing. My breathing is worse than> ever, I am on 10 liters on my home concentrator, that keeps me up to 96> at rest. If I get up and move - for instance - I went to the to the> kitchen, maybe 9ft, made me ice tea and went back to the living room.> Sat meter went to 54 - I am gasping as you can imagine - it took me> about 5 minutes to get to 96.> >> > I need more air I know, but I am being told

that they do not make> concentrators past 10 liters. My husband called around to make sure, and> a man told him if I am struggling on 10 liters than he, my huband, needs> to call the emergency squad and get me to an ER. I just got out of OSU a> couple of weeks ago and the only thing they did was bruise me every> where, blow 3 IV's.....etc. I need a PAP machine to help me through the> hard times and to breath till I actually can't anymore. Please if> someone has any suggestions, other than ER, I am all ears, I mean eyes.> Let me remind you I am 96 at rest at 10 liters.> >> > So there is my story. I absolutely feel sorry for my self....no I> don't, only at first and I am over that. I am looking for some relief> for now, that is all. I am not afraid, just not ready, I have way to> much paper work to get organized... ....so please no sympathy just don't>

need that, just some great suggestions and my memories of the ocean.....> > ellen> >>

September 9, 2009

Thank you Dyane, I see you live in the desert, I lived in the Mojave desert for

several years, by AFB. Of course I never thought I would ever miss it,

but my heart aches for it sometimes. We never appreciate what we have till we

don't, never a truer statement for me. I will quite rambling. Thanks

again.....ellen

>

> Ellen,

> I know the original chemo they gave Gordy was tough, but he did not lose

> his hair either. It did make him sick, not the actual chemo but some

> drug they gave him help protect his other organs, he was allergic to.

> He actually had better sats after his lung removal than I did with my

> two fibrotic ones LOL. I believe Lou had two concentrators going

> that gave her more than 10lpm. I need to find this out also since I am

> already using 8lpm at home. The offer is still open, call me if you

> need to, I promise no sympathy [] just knowledge.

>

> Dyane Phoenix ipf 02

>

September 9, 2009

Thanks Pink Joyce R. - OK now I know they DON'T make concentrators up to 15 or

20. Hmmmmmm, how rude !...sure would make life easier if they did...ellen

> > >

> > > I'm going to give a readers digest version update on what has been

> > going on with me, need to vent and need guidance - Hate Sympathy!!! -

> > >

> > > Soooooo - Went to Cleveland Clinic for evaluation on transplant. Went

> > pretty well, then the Cleveland Dr saw something on CT, he said it was

> > probably nothing, but before we go ahead I need a Pet Scan. OSU did a

> > pet Scan and they found a tumor in left lung, byopsy shows cancer,

> > transplant is out. OK that is the way it goes, I at least had 61

> > interesting years, or what ever it turns out to be, I know the old bus

> > can hit me thing. Got my options yesterday, tumor too big for radiation

> > treatments. Butttttt they do have a chemo that works very well at

> > shrinking this type of cancer, doesn't usually make you sick or you hair

> > fall out. Ok, as long as it hasn't metastasized to my brain. I haven't

> > heard from them today so I am a little worried since they had access to

> > the MRI results yesterday. So that is the cancer thing, but I am

> > wondering how to deal with the ipf thing. My breathing is worse than

> > ever, I am on 10 liters on my home concentrator, that keeps me up to 96

> > at rest. If I get up and move - for instance - I went to the to the

> > kitchen, maybe 9ft, made me ice tea and went back to the living room.

> > Sat meter went to 54 - I am gasping as you can imagine - it took me

> > about 5 minutes to get to 96.

> > >

> > > I need more air I know, but I am being told that they do not make

> > concentrators past 10 liters. My husband called around to make sure, and

> > a man told him if I am struggling on 10 liters than he, my huband, needs

> > to call the emergency squad and get me to an ER. I just got out of OSU a

> > couple of weeks ago and the only thing they did was bruise me every

> > where, blow 3 IV's.....etc. I need a PAP machine to help me through the

> > hard times and to breath till I actually can't anymore. Please if

> > someone has any suggestions, other than ER, I am all ears, I mean eyes.

> > Let me remind you I am 96 at rest at 10 liters.

> > >

> > > So there is my story. I absolutely feel sorry for my self....no I

> > don't, only at first and I am over that. I am looking for some relief

> > for now, that is all. I am not afraid, just not ready, I have way to

> > much paper work to get organized... ....so please no sympathy just don't

> > need that, just some great suggestions and my memories of the ocean.....

> > > ellen

> > >

> >

>

September 9, 2009

Thank you Bruce,

I did just get a call from the cancer doc. No cancer in the brain. So I start

chemo for tumor shrinkage a week from tomorrow. They are hoping that shrinking

will help me breath a little better. Guess I am about to find out.

I don't feel sorry for myself, I want to, but Sister Janis drilled it into my

brain that there is always someone worse off then yourslef. I have always

resolved things this way, I still cry every now and again, have to. I do feel a

lot of stress of what my family is going through. My husband isn't handling any

of this well at all. My middle son is so much help, but I hate to put this on

his shoulders, he swears to me he wants me to and not to worry about it. So this

is my biggest concern.......I guess you got to do what you got to do.

Thanks for your kind words and oxy information. Now I know what I need to insist

upon. ellen

> >

> > I'm going to give a readers digest version update on what has been

> going on with me, need to vent and need guidance - Hate Sympathy!!! -

> >

> > Soooooo - Went to Cleveland Clinic for evaluation on transplant. Went

> pretty well, then the Cleveland Dr saw something on CT, he said it was

> probably nothing, but before we go ahead I need a Pet Scan. OSU did a

> pet Scan and they found a tumor in left lung, byopsy shows cancer,

> transplant is out. OK that is the way it goes, I at least had 61

> interesting years, or what ever it turns out to be, I know the old bus

> can hit me thing. Got my options yesterday, tumor too big for radiation

> treatments. Butttttt they do have a chemo that works very well at

> shrinking this type of cancer, doesn't usually make you sick or you hair

> fall out. Ok, as long as it hasn't metastasized to my brain. I haven't

> heard from them today so I am a little worried since they had access to

> the MRI results yesterday. So that is the cancer thing, but I am

> wondering how to deal with the ipf thing. My breathing is worse than

> ever, I am on 10 liters on my home concentrator, that keeps me up to 96

> at rest. If I get up and move - for instance - I went to the to the

> kitchen, maybe 9ft, made me ice tea and went back to the living room.

> Sat meter went to 54 - I am gasping as you can imagine - it took me

> about 5 minutes to get to 96.

> >

> > I need more air I know, but I am being told that they do not make

> concentrators past 10 liters. My husband called around to make sure, and

> a man told him if I am struggling on 10 liters than he, my huband, needs

> to call the emergency squad and get me to an ER. I just got out of OSU a

> couple of weeks ago and the only thing they did was bruise me every

> where, blow 3 IV's.....etc. I need a PAP machine to help me through the

> hard times and to breath till I actually can't anymore. Please if

> someone has any suggestions, other than ER, I am all ears, I mean eyes.

> Let me remind you I am 96 at rest at 10 liters.

> >

> > So there is my story. I absolutely feel sorry for my self....no I

> don't, only at first and I am over that. I am looking for some relief

> for now, that is all. I am not afraid, just not ready, I have way to

> much paper work to get organized.......so please no sympathy just don't

> need that, just some great suggestions and my memories of the ocean.....

> > ellen

> >

>

September 9, 2009

Ellen,

Air Force Duty or dependent?

Dyane

> >

> > Ellen,

> > I know the original chemo they gave Gordy was tough, but he did not

lose

> > his hair either. It did make him sick, not the actual chemo but

some

> > drug they gave him help protect his other organs, he was allergic

to.

> > He actually had better sats after his lung removal than I did with

my

> > two fibrotic ones LOL. I believe Lou had two concentrators

going

> > that gave her more than 10lpm. I need to find this out also since I

am

> > already using 8lpm at home. The offer is still open, call me if you

> > need to, I promise no sympathy [] just knowledge.

> >

> > Dyane Phoenix ipf 02

> >

>

September 9, 2009

Thank you

Miranda

> >

> > I'm going to give a readers digest version update on what has been going on

with me, need to vent and need guidance - Hate Sympathy!!! -

> >

> > Soooooo - Went to Cleveland Clinic for evaluation on transplant. Went pretty

well, then the Cleveland Dr saw something on CT, he said it was probably

nothing, but before we go ahead I need a Pet Scan. OSU did a pet Scan and they

found a tumor in left lung, byopsy shows cancer, transplant is out. OK that is

the way it goes, I at least had 61 interesting years, or what ever it turns out

to be, I know the old bus can hit me thing. Got my options yesterday, tumor too

big for radiation treatments. Butttttt they do have a chemo that works very well

at shrinking this type of cancer, doesn't usually make you sick or you hair fall

out. Ok, as long as it hasn't metastasized to my brain. I haven't heard from

them today so I am a little worried since they had access to the MRI results

yesterday. So that is the cancer thing, but I am wondering how to deal with the

ipf thing. My breathing is worse than ever, I am on 10 liters on my home

concentrator, that keeps me

> up to 96 at rest. If I get up and move - for instance - I went to the to the

kitchen, maybe 9ft, made me ice tea and went back to the living room. Sat meter

went to 54 - I am gasping as you can imagine - it took me about 5 minutes to get

to 96.

> >

> > I need more air I know, but I am being told that they do not make

concentrators past 10 liters. My husband called around to make sure, and a man

told him if I am struggling on 10 liters than he, my huband, needs to call the

emergency squad and get me to an ER. I just got out of OSU a couple of weeks ago

and the only thing they did was bruise me every where, blow 3 IV's.....etc. I

need a PAP machine to help me through the hard times and to breath till I

actually can't anymore. Please if someone has any suggestions, other than ER, I

am all ears, I mean eyes. Let me remind you I am 96 at rest at 10 liters.

> >

> > So there is my story. I absolutely feel sorry for my self....no I don't,

only at first and I am over that. I am looking for some relief for now, that is

all. I am not afraid, just not ready, I have way to much paper work to get

organized... ....so please no sympathy just don't need that, just some great

suggestions and my memories of the ocean.....

> > ellen

> >

>

September 9, 2009

Oh Miranda I am so glad you are on the transplant list. I know a little tiny

woman, barely 4'6 " , that had to wait quite awhile to finally be called. The call

came when they finally found lungs that were small enough for her, she couldn't

use childrens lungs. She had the surgery six months ago and is doing absolutely

wonderful. She also goes to rehab with no help of prescribed oxy. She was so

worried because she is such a small person, plus she is older than me. but she

never gave up. Hang in there!!! ellen

> > >

> > > I'm going to give a readers digest version update on what has been going

on with me, need to vent and need guidance - Hate Sympathy!!! -

> > >

> > > Soooooo - Went to Cleveland Clinic for evaluation on transplant. Went

pretty well, then the Cleveland Dr saw something on CT, he said it was probably