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

September 9, 2009

EllenPlease call me . My dear husband was diagnosed in 2003 with a "huge " tumor in his left lung, went through chemo, radiation and then removal of the lung. He had 4.5 wonderful years after that. Been there, done that can tell you what I know.Dyane Phoenix ipf 02>> 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

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

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> > >> > > 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

First, as to more air. They can combine multiple concentrators using a Y

coupling. Simply take two 10 lpm concentrators, connect, you have 20

lpm. As to over 10 lpm indicating ER, if it was suddenly from 3 to 10

then perhaps, but if its your gradual progression and you were on 8 a

while, then 10, then its not unexpected that 12 would be next. So,

insist on more air. It's easily done. Also, there are liquid reservoirs

and liquid portables up to 15 lpm.

Now, as to the cancer and waiting for results, I can't shed any light

other than waiting being the most torture there is sometimes. You have a

perfect right to feel sorry for yourself. What can you do now. Well,

about the cancer and its prognosis I don't know. But regardless insist

on comfort. Get more air. I am not saying you need it yet or will ever,

but I would encourage you and your husband to gather information on

in-home hospice care. Again, I don't know your cancer situation. But for

those of us with PF, ultimately if we avoid complications along the way,

hospice does come into our lives. And its a blessing when we need it.

>

> 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

glad it is not in the brain

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, 6:43 PM

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,

I too am on 10 lpm at rest. My SATS stay pretty high but when I get up or talk

to much I drop pretty low. Sometimes I fall into the 50's also. I have a

concentrator that goes to 10. I have wondered myself what do I do when I outgrow

this machine. You can hook up a 10 and a 6 liter concentrator with a Y connecter

and tubing. I have had to do this with two 6's till the 10 machine bacame

available. Now when I walk around the house I use the concentrator set at 10 lpm

and my " E " tank with a mask, set usually at 10 or 15 lpm. I go through more

tanks doing this but Lincare is on my speed dial. Well...Take care and good

luck to you.

Miranda

LA / 28 yrs old

IPF 05

>

> 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

Miranda,

I was reminded today of you and anyone else who's listed and waiting for transplant. While on the Nu Step machine I had a conversation with a woman named Margaret who's about 6 months post double lung transplant. She's doing really, really well and is very happy she decided to pursue transplant.

Before she had her surgery, she was on 15 liters at rest and 25 with any type of exertion. Amazing, and today she's working out with no oxygen and sats in the high 90's.

Don't get discouraged. Use what O2 you need to keep your sats up while you are waiting for that phone to ring!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, September 9, 2009 9:19:41 PMSubject: Re: Need Guidance - Need to Vent - oxy needs have changed

Ellen,I too am on 10 lpm at rest. My SATS stay pretty high but when I get up or talk to much I drop pretty low. Sometimes I fall into the 50's also. I have a concentrator that goes to 10. I have wondered myself what do I do when I outgrow this machine. You can hook up a 10 and a 6 liter concentrator with a Y connecter and tubing. I have had to do this with two 6's till the 10 machine bacame available. Now when I walk around the house I use the concentrator set at 10 lpm and my "E" tank with a mask, set usually at 10 or 15 lpm. I go through more tanks doing this but Lincare is on my speed dial. Well...Take care and good luck to you.MirandaLA / 28 yrs oldIPF 05>> 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

Jeez, I hate to hear someone so young at 10 lpm. When I fall into the 50's I

think " Elizebeth this is the big one " - but I get out of it. Good luck and

thanks for your comment.....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