Re: to Barbara

[Guest guest]

Barbara...if you by chance see this, I tried to call you and there is no info in the data base. Add it when you have time. I wish everybody would add contact info so we CAN.

Prayers are for you today. Sher

Re: Pulm. Visit- >! ; >> >> > Hi , I hate to hear your having such a rough time. I think at one> time or another we have all been told nothing will cure this disease,> That is so very hard to hear.> > Please remember you do have life so live it to it's fullest. Fight the> good fight. Only God knows when we're going home.> > As far as the antidepressant, I strongly recommend it. I didn't> realize how down I actually was until I started on wellbrutrin. You will> feel like living and like yourself. This monster as we call it, is hard> enough on our emotions.> > We are here to support you in what ever way you need us, so vent away.> I will be praying for you. God grant you peace...> > Love and Prayers, Peggy 9/04 ipf> >> >> >> > I went to my pulm. yesterday. Sats were 82, even though I use> > oxygen continuously. Am having a real diffic! ulty now with getting> > in and out of chairs, doing simple things in the house. I just get> > so out of breath. The Dr. said the increased SOB is because of my> > pulmonary hypertension, which is worsening. There is a new med. for> > it but Cigna does not approve it and therefore I have to pay> > privately. I am going to do that for a while. But I wonder what is> > the use? My dr. told me yesterday that he knows of nothing else> > that can be done and that I need to start accepting things. He said> > that with a terminal illness, I should expect to get worse instead> > of hoping. He said the time for hope is over now and that maybe I> > need to see a therapist to help me through this. He then wanted to> > write me a script for Zoloft to "help". He did say that I would> > probably need to think about going into the hospital again soon, to> > drain s! ome of the fluid out of me. I have already done that but it> > just comes back. I read that with the hypertension, that your legs> > cana get very large and heavy. And that is what is happening. Also> > having a problem with my portable oxygen. Since I am now on liquid> > oxygen, the tank I havae to carry is so heavy that it takes all my> > energy to carry it. Evidently the office called the supplier and I> > just got a call from them stating that Cigna does not authorize the> > really small one. I am calling Cigna. I know I sound depressed in> > this post. I know I am discouraged. Really really tired of> > everything. Tired of the tube in my nose, tired of calculating what> > I can do because of limited breath, tired of sitting. Just tired.> > Tired of being told that I have lived longer than most people with> > my disease.> > I dont know how to be! a sick person.> > Thanks for listening.> > > >>

[Guest guest]

Barbara:

You are probably already on your way to the ER and wont get this till you get back, but please let us know how you are doing. I am so concerned for you. There is nothing worse feeling than feeling like you cant breathe or get enough oxygen in. My thoughts are with you and I am saying prayers.

Hugs,

Carolyn

-- Re: to Barbara

Barbara...if you by chance see this, I tried to call you and there is no info in the data base. Add it when you have time. I wish everybody would add contact info so we CAN.

Prayers are for you today. Sher

Re: Pulm. Visit- >! ; >> >> > Hi , I hate to hear your having such a rough time. I think at one> time or another we have all been told nothing will cure this disease,> That is so very hard to hear.> > Please remember you do have life so live it to it's fullest. Fight the> good fight. Only God knows when we're going home.> > As far as the antidepressant, I strongly recommend it. I didn't> realize how down I actually was until I started on wellbrutrin. You will> feel like living and like yourself. This monster as we call it, is hard> enough on our emotions.> > We are here to support you in what ever way you need us, so vent away.> I will be praying for you. God grant you peace...> > Love and Prayers, Peggy 9/04 ipf> >> >> >> > I went to my pulm. yesterday. Sats were 82, even though I use> > oxygen continuously. Am having a real diffic! ulty now with getting> > in and out of chairs, doing simple things in the house. I just get> > so out of breath. The Dr. said the increased SOB is because of my> > pulmonary hypertension, which is worsening. There is a new med. for> > it but Cigna does not approve it and therefore I have to pay> > privately. I am going to do that for a while. But I wonder what is> > the use? My dr. told me yesterday that he knows of nothing else> > that can be done and that I need to start accepting things. He said> > that with a terminal illness, I should expect to get worse instead> > of hoping. He said the time for hope is over now and that maybe I> > need to see a therapist to help me through this. He then wanted to> > write me a script for Zoloft to "help". He did say that I would> > probably need to think about going into the hospital again soon, to> > drain s! ome of the fluid out of me. I have already done that but it> > just comes back. I read that with the hypertension, that your legs> > cana get very large and heavy. And that is what is happening. Also> > having a problem with my portable oxygen. Since I am now on liquid> > oxygen, the tank I havae to carry is so heavy that it takes all my> > energy to carry it. Evidently the office called the supplier and I> > just got a call from them stating that Cigna does not authorize the> > really small one. I am calling Cigna. I know I sound depressed in> > this post. I know I am discouraged. Really really tired of> > everything. Tired of the tube in my nose, tired of calculating what> > I can do because of limited breath, tired of sitting. Just tired.> > Tired of being told that I have lived longer than most people with> > my disease.> > I dont know how to be! a sick person.> > Thanks for listening.> > > >>

[Guest guest]

Carolyn, Thank you so much for your concern. I truly appreciate it. I got in from the ER around 3 AM I think it was and went to bed shortly there after. I feel a little better this morning but not a lot. The doc in the ER was a real jerk and wouldn't lister to me. I am just the patient and don't know anything, but the end result after being poked and probed for 6 hours and having all kinds of lab and x-rays was that I am in congestive heart failure. I will call my Pulmo in the morning and see what he wants to do and take it from there.

Thank you again for your concern. It really makes one feel better just knowing that there are people out there that really care how we feel.

Hugs and Prayers!

Barbara R IPF 1/2003

> > > > > > To . > > > I just read your post and I wish I could be with you to talk and visit > > awhile. I understand your fatigue and feelings of hopelessness. I had > > that awhile back too and the new antidepressant my Dr. put me on > > (Cymbalta) has helped me immensely! > > > A great many of us on this board are on varied anti-depressants and > > all say they feel better. > > > Does your Dr. know your insurance won't cover the new medication? > > Perhaps he has samples he will give you or can recommend help. Often, if > > you contact the manufacture directly with your situation, they will > > provide free or greatly reduced cost! > > > I think your Dr. sounds ext! remely insensitive! I changed Drs only two > > days ago because I don't think he has my best interests at heart. > > > I read your helplessness in your post . I feel sad whenever any > > one of us has to face the reality of our common disease. > > > Do you have another oxygen supplier that may work with your needs > > better than the current one? For me, I had one supplier...Apria...and > > I'm so fed up with them I am changing insurance to Regence Blue Cross > > simply to get away from Apria! > > > , none of know how to "be sick" and don't apologize for feeling > > depressed and/or discouraged. How else could you possible feel? > > > If you really believe you have reached the place where you do need to > > accept the end stage of the disease, there are still things you can do > > to feel in control....Get your affairs in order; do a living will or > > some document that will carry out your wishes; ! write letters to family > > members and have good conversations with each person. Make plans for > > your personal things, even make plans for your funeral. I know, this > > stuff is heart-wrenching and it feels like you've been gut-shot. But > > when it's all done you will feel a great burden lifted and will find a > > sense of peace. > > > We're all here for you. If I can personally be of help, write me at > > bofus@ > > > Most of all do what you know you need to do, no matter what anyone > > says. This is OUR battle and we each fight it with our chosen weapon. > > > You are not alone dear heart. > > > Love, Sher ipf 5-06 > > > > > > > > > > > > > > > Re: Pulm. Visit- > >! ; > > > > > > > Hi , I hate to hear your having such a rough time. I think at one > > time or another we have all been told nothing will cure this disease, > > That is so very hard to hear. > > > Please remember you do have life so live it to it's fullest. Fight the > > good fight. Only God knows when we're going home. > > > As far as the antidepressant, I strongly recommend it. I didn't > > realize how down I actually was until I started on wellbrutrin. You will > > feel like living and like yourself. This monster as we call it, is hard > > enough on our emotions. > > > We are here to support you in what ever way you need us, so vent away. > > I will be praying for you. God grant you peace... > > > Love and Prayers, Peggy 9/04 ipf > > > > > > > > > > > > I went to my pulm. yesterday. Sats were 82, even though I use > > > oxygen continuously. Am having a real diffic! ulty now with getting > > > in and out of chairs, doing simple things in the house. I just get > > > so out of breath. The Dr. said the increased SOB is because of my > > > pulmonary hypertension, which is worsening. There is a new med. for > > > it but Cigna does not approve it and therefore I have to pay > > > privately. I am going to do that for a while. But I wonder what is > > > the use? My dr. told me yesterday that he knows of nothing else > > > that can be done and that I need to start accepting things. He said > > > that with a terminal illness, I should expect to get worse instead > > > of hoping. He said the time for hope is over now and that maybe I > > > need to see a therapist to help me through this. He then wanted to > > > write me a script for Zoloft to "help". He did say that I would > > > probably need to think about going into the hospital again soon, to > > > drain s! ome of the fluid out of me. I have already done that but it > > > just comes back. I read that with the hypertension, that your legs > > > cana get very large and heavy. And that is what is happening. Also > > > having a problem with my portable oxygen. Since I am now on liquid > > > oxygen, the tank I havae to carry is so heavy that it takes all my > > > energy to carry it. Evidently the office called the supplier and I > > > just got a call from them stating that Cigna does not authorize the > > > really small one. I am calling Cigna. I know I sound depressed in > > > this post. I know I am discouraged. Really really tired of > > > everything. Tired of the tube in my nose, tired of calculating what > > > I can do because of limited breath, tired of sitting. Just tired. > > > Tired of being told that I have lived longer than most people with > > > my disease. > > > I dont know how to be! a sick person. > > > Thanks for listening. > > > > > > > >>

[Guest guest]

Barbara,

I am glad you survived your ordeal in the

E.R. Hope you feel better soon. You and hubbie must have the “heart

connection” for him to feel the need to come home.

Florida P.F. 4/2006

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of acapulco_cottonwoodcove

Sent: Sunday, November 19, 2006

10:16 AM

To: Breathe-Support

Subject: Re: to

Barbara

Carolyn, Thank you so much for your concern. I

truly appreciate it. I got in from the ER around 3 AM I think it was and went

to bed shortly there after. I feel a little better this morning but not a lot.

The doc in the ER was a real jerk and wouldn't lister to me. I am just the

patient and don't know anything, but the end result after being poked and

probed for 6 hours and having all kinds of lab and x-rays was that I am in

congestive heart failure. I will call my Pulmo in the morning and see what he

wants to do and take it from there.

Thank you again for your concern. It really makes one

feel better just knowing that there are people out there that really care how

we feel.

Hugs and Prayers!

Barbara R IPF 1/2003

> > >

> > > To .

> > > I just read your post and I wish I could be with you to talk and

visit

> > awhile. I understand your fatigue and feelings of hopelessness. I had

> > that awhile back too and the new antidepressant my Dr. put me on

> > (Cymbalta) has helped me immensely!

> > > A great many of us on this board are on varied anti-depressants

and !

> > all say they feel better.

> > > Does your Dr. know your insurance won't cover the new

medication?

> > Perhaps he has samples he will give you or can recommend help. Often,

if

> > you contact the manufacture directly with your situation, they will

> > provide free or greatly reduced cost!

> > > I think your Dr. sounds ext! remely insensitive! I changed Drs

only two

> > days ago because I don't think he has my best interests at heart.

> > > I read your helplessness in your post . I feel sad whenever any

> > one of us has to face the reality of our common disease.

> > > Do you have another oxygen supplier that may work with your

needs

> > better than the current one? For me, I had one supplier...Apria...and

> > I'm so fed up with them I am changing insurance to Regence Blue Cross

> > simply to get away from Apria!

> ! > > , none of know how to " be sick " and don't

apologize for feeling

> > depressed and/or discouraged. How else could you possible feel?

> > > If you really believe you have reached the place where you do

need to

> > accept the end stage of the disease, there are still things you can

do

> > to feel in control....Get your affairs in order; do a living will or

> > some document that will carry out your wishes; ! write letters to

family

> > members and have good conversations with each person. Make plans for

> > your personal things, even make plans for your funeral. I know, this

> > stuff is heart-wrenching and it feels like you've been gut-shot. But

> > when it's all done you will feel a great burden lifted and will find

a

> > sense of peace.

> > > We're all here for you. If I can personally be of help, write me

at

> > bofus@

> > > Most of all do what you know you need to do, no matter what

anyone !

> > says. This is OUR battle and we each fight it with our chosen weapon.

> > > You are not alone dear heart.

> > > Love, Sher ipf 5-06

> > >

> > >

> > >

> > >

> > > Re: Pulm. Visit-

> >! ; >

> > >

> > > Hi ,

I hate to hear your having such a rough time. I think at one

> > time or another we have all been told nothing will cure this disease,

> > That is so very hard to hear.

> > > Please remember you do have life so live it to it's fullest.

Fight the

> > good fight. Only God knows when we're going home.

> > > As far as the antidepressant, I s! trongly recommend it. I

didn't

> > realize how down I actual ly was until I started on wellbrutrin. You

will

> > feel like living and like yourself. This monster as we call it, is

hard

> > enough on our emotions.

> > > We are here to support you in what ever way you need us, so vent

away.

> > I will be praying for you. God grant you peace...

> > > Love and Prayers, Peggy 9/04 ipf

> > >

> > >

> > >

> > > I went to my pulm. yesterday. Sats were 82, even though I use

> > > oxygen continuously. Am having a real diffic! ulty now with

getting

> > > in and out of chairs, doing simple things in the house. I just get

> > > so out of breath. The Dr. said the increased SOB is because of

my

> > > pulmonary hypertension, which is worsening. There is a new med.

for

> > > it but Cigna does not approve it and therefore I have to pay

> > > privately. I am going to do t! hat for a while. But I wonder

what is

> > > the use? My dr. told me yesterday that he knows of nothing else

> > > that can be done and that I need to start accepting things. He

said

> > > that with a terminal illness, I should expect to get worse instead

> > > of hoping. He said the time for hope is over now and that maybe

I

> > > need to see a therapist to help me through this. He then wanted

to

> > > write me a script for Zoloft to " help " . He did say

that I would

> > > probably need to think about going into the hospital again soon,

to

> > > drain s! ome of the fluid out of me. I have already done that

but it

> > > just comes back. I read that with the hypertension, that your

legs

> > > cana get very large and heavy. And that is what is happening.

Also

> > > having a problem with my portable oxygen. Since I am now on

liquid

>! ; > > oxygen, the tank I havae to carry is so heavy that it take s

all my

> > > energy to carry it. Evidently the office called the supplier and

I

> > > just got a call from them stating that Cigna does not authorize

the

> > > really small one. I am calling Cigna. I know I sound depressed

in

> > > this post. I know I am discouraged. Really really tired of

> > > everything. Tired of the tube in my nose, tired of calculating

what

> > > I can do because of limited breath, tired of sitting. Just

tired.

> > > Tired of being told that I have lived longer than most people

with

> > > my disease.

> > > I dont know how to be! a sick person.

> > > Thanks for listening.

> > >

> > >

> >

>

[Guest guest]

Barbara, I'm so glad you went in. I know it wasn't easy. The risk of not being listened to. Test after test after test. But you did it, you went the full 9 yards of 6 hours to make sure you found out what was going on with your body. That took gutts, determination and loving oneself enough to know you desirved immediate attention. I salute you. I'm sorry to hear you are in congestive heart failure, but in awe of your courage to go in to an ER and getting the care you desirve.

With much respect, Lynn

> > > >> > > > To .> > > > I just read your post and I wish I could be with you to talk and> visit> > > awhile. I understand your fatigue and feelings of hopelessness. I> had> > > that awhile back too and the new antidepressant my Dr. put me on> > > (Cymbalta) has helped me immensely!> > > > A great many of us on this board are on varied anti-depressants> and> > > all say they feel better.> > > > Does your Dr. know your insurance won't cover the new medication?> > > Perhaps he has samples he will give you or can recommend help.> Often, if> > > you contact the manufacture directly with your situation, they will> > > provide free or greatly reduced cost!> > > > I think your Dr. sounds ext! remely insensitive! I changed Drs> only two> > > days ago because I don't think he has my best interests at heart.> > > > I read your helplessness in your post . I feel sad whenever> any> > > one of us has to face the reality of our common disease.> > > > Do you have another oxygen supplier that may work with your needs> > > better than the current one? For me, I had one> supplier...Apria...and> > > I'm so fed up with them I am changing insurance to Regence Blue> Cross> > > simply to get away from Apria!> > > > , none of know how to "be sick" and don't apologize for> feeling> > > depressed and/or discouraged. How else could you possible feel?> > > > If you really believe you have reached the place where you do need> to> > > accept the end stage of the disease, there are still things you can> do> > > to feel in control....Get your affairs in order; do a living will or> > > some document that will carry out your wishes; ! write letters to> family> > > members and have good conversations with each person. Make plans for> > > your personal things, even make plans for your funeral. I know, this> > > stuff is heart-wrenching and it feels like you've been gut-shot. But> > > when it's all done you will feel a great burden lifted and will find> a> > > sense of peace.> > > > We're all here for you. If I can personally be of help, write me> at> > > bofus@> > > > Most of all do what you know you need to do, no matter what anyone> > > says. This is OUR battle and we each fight it with our chosen> weapon.> > > > You are not alone dear heart.> > > > Love, Sher ipf 5-06> > > >> > > >> > > >> > > >> > > > Re: Pulm. Visit- > > >! ; >> > > >> > > > Hi , I hate to hear your having such a rough time. I think at> one> > > time or another we have all been told nothing will cure this> disease,> > > That is so very hard to hear.> > > > Please remember you do have life so live it to it's fullest. Fight> the> > > good fight. Only God knows when we're going home.> > > > As far as the antidepressant, I strongly recommend it. I didn't> > > realize how down I actually was until I started on wellbrutrin. You> will> > > feel like living and like yourself. This monster as we call it, is> hard> > > enough on our emotions.> > > > We are here to support you in what ever way you need us, so vent> away.> > > I will be praying for you. God grant you peace...> > > > Love and Prayers, Peggy 9/04 ipf> > > >> > > >> > > >> > > > I went to my pulm. yesterday. Sats were 82, even though I use> > > > oxygen continuously. Am having a real diffic! ulty now with> getting> > > > in and out of chairs, doing simple things in the house. I just get> > > > so out of breath. The Dr. said the increased SOB is because of my> > > > pulmonary hypertension, which is worsening. There is a new med.> for> > > > it but Cigna does not approve it and therefore I have to pay> > > > privately. I am going to do that for a while. But I wonder what is> > > > the use? My dr. told me yesterday that he knows of nothing else> > > > that can be done and that I need to start accepting things. He> said> > > > that with a terminal illness, I should expect to get worse instead> > > > of hoping. He said the time for hope is over now and that maybe I> > > > need to see a therapist to help me through this. He then wanted to> > > > write me a script for Zoloft to "help". He did say that I would> > > > probably need to think about going into the hospital again soon,> to> > > > drain s! ome of the fluid out of me. I have already done that but> it> > > > just comes back. I read that with the hypertension, that your legs> > > > cana get very large and heavy. And that is what is happening. Also> > > > having a problem with my portable oxygen. Since I am now on liquid> > > > oxygen, the tank I havae to carry is so heavy that it takes all my> > > > energy to carry it. Evidently the office called the supplier and I> > > > just got a call from them stating that Cigna does not authorize> the> > > > really small one. I am calling Cigna. I know I sound depressed in> > > > this post. I know I am discouraged. Really really tired of> > > > everything. Tired of the tube in my nose, tired of calculating> what> > > > I can do because of limited breath, tired of sitting. Just tired.> > > > Tired of being told that I have lived longer than most people with> > > > my disease.> > > > I dont know how to be! a sick person.> > > > Thanks for listening.> > > > > > > >> > >> >>

[Guest guest]

Thank you Barbara, I also am glad to meet you. And am so encouraged by your determination. I would love it if you would check out the site, your feedback would be fantastic!!!

http://www.geocities.com/lynndebeal/coverpage.html

> > > > > >> > > > > > To .> > > > > > I just read your post and I wish I could be with you to talk> and> > > visit> > > > > awhile. I understand your fatigue and feelings of hopelessness.> I> > > had> > > > > that awhile back too and the new antidepressant my Dr. put me on> > > > > (Cymbalta) has helped me immensely!> > > > > > A great many of us on this board are on varied> anti-depressants> > > and> > > > > all say they feel better.> > > > > > Does your Dr. know your insurance won't cover the new> > medication?> > > > > Perhaps he has samples he will give you or can recommend help.> > > Often, if> > > > > you contact the manufacture directly with your situation, they> > will> > > > > provide free or greatly reduced cost!> > > > > > I think your Dr. sounds ext! remely insensitive! I changed Drs> > > only two> > > > > days ago because I don't think he has my best interests at> heart.> > > > > > I read your helplessness in your post . I feel sad> whenever> > > any> > > > > one of us has to face the reality of our common disease.> > > > > > Do you have another oxygen supplier that may work with your> > needs> > > > > better than the current one? For me, I had one> > > supplier...Apria...and> > > > > I'm so fed up with them I am changing insurance to Regence Blue> > > Cross> > > > > simply to get away from Apria!> > > > > > , none of know how to "be sick" and don't apologize for> > > feeling> > > > > depressed and/or discouraged. How else could you possible feel?> > > > > > If you really believe you have reached the place where you do> > need> > > to> > > > > accept the end stage of the disease, there are still things you> > can> > > do> > > > > to feel in control....Get your affairs in order; do a living> will> > or> > > > > some document that will carry out your wishes; ! write letters> to> > > family> > > > > members and have good conversations with each person. Make plans> > for> > > > > your personal things, even make plans for your funeral. I know,> > this> > > > > stuff is heart-wrenching and it feels like you've been gut-shot.> > But> > > > > when it's all done you will feel a great burden lifted and will> > find> > > a> > > > > sense of peace.> > > > > > We're all here for you. If I can personally be of help, write> me> > > at> > > > > bofus@> > > > > > Most of all do what you know you need to do, no matter what> > anyone> > > > > says. This is OUR battle and we each fight it with our chosen> > > weapon.> > > > > > You are not alone dear heart.> > > > > > Love, Sher ipf 5-06> > > > > >> > > > > >> > > > > >> > > > > >> > > > > > Re: Pulm. Visit- > > > > >! ; >> > > > > >> > > > > > Hi , I hate to hear your having such a rough time. I> think> > at> > > one> > > > > time or another we have all been told nothing will cure this> > > disease,> > > > > That is so very hard to hear.> > > > > > Please remember you do have life so live it to it's fullest.> > Fight> > > the> > > > > good fight. Only God knows when we're going home.> > > > > > As far as the antidepressant, I strongly recommend it. I> didn't> > > > > realize how down I actually was until I started on wellbrutrin.> > You> > > will> > > > > feel like living and like yourself. This monster as we call it,> is> > > hard> > > > > enough on our emotions.> > > > > > We are here to support you in what ever way you need us, so> vent> > > away.> > > > > I will be praying for you. God grant you peace...> > > > > > Love and Prayers, Peggy 9/04 ipf> > > > > >> > > > > >> > > > > >> > > > > > I went to my pulm. yesterday. Sats were 82, even though I use> > > > > > oxygen continuously. Am having a real diffic! ulty now with> > > getting> > > > > > in and out of chairs, doing simple things in the house. I just> > get> > > > > > so out of breath. The Dr. said the increased SOB is because of> > my> > > > > > pulmonary hypertension, which is worsening. There is a new> med.> > > for> > > > > > it but Cigna does not approve it and therefore I have to pay> > > > > > privately. I am going to do that for a while. But I wonder> what> > is> > > > > > the use? My dr. told me yesterday that he knows of nothing> else> > > > > > that can be done and that I need to start accepting things. He> > > said> > > > > > that with a terminal illness, I should expect to get worse> > instead> > > > > > of hoping. He said the time for hope is over now and that> maybe> > I> > > > > > need to see a therapist to help me through this. He then> wanted> > to> > > > > > write me a script for Zoloft to "help". He did say that I> would> > > > > > probably need to think about going into the hospital again> soon,> > > to> > > > > > drain s! ome of the fluid out of me. I have already done that> > but> > > it> > > > > > just comes back. I read that with the hypertension, that your> > legs> > > > > > cana get very large and heavy. And that is what is happening.> > Also> > > > > > having a problem with my portable oxygen. Since I am now on> > liquid> > > > > > oxygen, the tank I havae to carry is so heavy that it takes> all> > my> > > > > > energy to carry it. Evidently the office called the supplier> and> > I> > > > > > just got a call from them stating that Cigna does not> authorize> > > the> > > > > > really small one. I am calling Cigna. I know I sound depressed> > in> > > > > > this post. I know I am discouraged. Really really tired of> > > > > > everything. Tired of the tube in my nose, tired of calculating> > > what> > > > > > I can do because of limited breath, tired of sitting. Just> > tired.> > > > > > Tired of being told that I have lived longer than most people> > with> > > > > > my disease.> > > > > > I dont know how to be! a sick person.> > > > > > Thanks for listening.> > > > > > > > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Lynne, Let me get through this week and I will do just that. I enjoy your post so much. Have a blessed and happy Thanksgiving.

Hugs and Prayers!

Barbara R IPF 1/2003> > > > > > >> > > > > > > To .> > > > > > > I just read your post and I wish I could be with you to talk> > and> > > > visit> > > > > > awhile. I understand your fatigue and feelings of> hopelessness.> > I> > > > had> > > > > > that awhile back too and the new antidepressant my Dr. put me> on> > > > > > (Cymbalta) has helped me immensely!> > > > > > > A great many of us on this board are on varied> > anti-depressants> > > > and> > > > > > all say they feel better.> > > > > > > Does your Dr. know your insurance won't cover the new> > > medication?> > > > > > Perhaps he has samples he will give you or can recommend help.> > > > Often, if> > > > > > you contact the manufacture directly with your situation, they> > > will> > > > > > provide free or greatly reduced cost!> > > > > > > I think your Dr. sounds ext! remely insensitive! I changed> Drs> > > > only two> > > > > > days ago because I don't think he has my best interests at> > heart.> > > > > > > I read your helplessness in your post . I feel sad> > whenever> > > > any> > > > > > one of us has to face the reality of our common disease.> > > > > > > Do you have another oxygen supplier that may work with your> > > needs> > > > > > better than the current one? For me, I had one> > > > supplier...Apria...and> > > > > > I'm so fed up with them I am changing insurance to Regence> Blue> > > > Cross> > > > > > simply to get away from Apria!> > > > > > > , none of know how to "be sick" and don't apologize for> > > > feeling> > > > > > depressed and/or discouraged. How else could you possible> feel?> > > > > > > If you really believe you have reached the place where you> do> > > need> > > > to> > > > > > accept the end stage of the disease, there are still things> you> > > can> > > > do> > > > > > to feel in control....Get your affairs in order; do a living> > will> > > or> > > > > > some document that will carry out your wishes; ! write letters> > to> > > > family> > > > > > members and have good conversations with each person. Make> plans> > > for> > > > > > your personal things, even make plans for your funeral. I> know,> > > this> > > > > > stuff is heart-wrenching and it feels like you've been> gut-shot.> > > But> > > > > > when it's all done you will feel a great burden lifted and> will> > > find> > > > a> > > > > > sense of peace.> > > > > > > We're all here for you. If I can personally be of help,> write> > me> > > > at> > > > > > bofus@> > > > > > > Most of all do what you know you need to do, no matter what> > > anyone> > > > > > says. This is OUR battle and we each fight it with our chosen> > > > weapon.> > > > > > > You are not alone dear heart.> > > > > > > Love, Sher ipf 5-06> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > > Re: Pulm. Visit- > > > > > >! ; >> > > > > > >> > > > > > > Hi , I hate to hear your having such a rough time. I> > think> > > at> > > > one> > > > > > time or another we have all been told nothing will cure this> > > > disease,> > > > > > That is so very hard to hear.> > > > > > > Please remember you do have life so live it to it's fullest.> > > Fight> > > > the> > > > > > good fight. Only God knows when we're going home.> > > > > > > As far as the antidepressant, I strongly recommend it. I> > didn't> > > > > > realize how down I actually was until I started on> wellbrutrin.> > > You> > > > will> > > > > > feel like living and like yourself. This monster as we call> it,> > is> > > > hard> > > > > > enough on our emotions.> > > > > > > We are here to support you in what ever way you need us, so> > vent> > > > away.> > > > > > I will be praying for you. God grant you peace...> > > > > > > Love and Prayers, Peggy 9/04 ipf> > > > > > >> > > > > > >> > > > > > >> > > > > > > I went to my pulm. yesterday. Sats were 82, even though I> use> > > > > > > oxygen continuously. Am having a real diffic! ulty now with> > > > getting> > > > > > > in and out of chairs, doing simple things in the house. I> just> > > get> > > > > > > so out of breath. The Dr. said the increased SOB is because> of> > > my> > > > > > > pulmonary hypertension, which is worsening. There is a new> > med.> > > > for> > > > > > > it but Cigna does not approve it and therefore I have to pay> > > > > > > privately. I am going to do that for a while. But I wonder> > what> > > is> > > > > > > the use? My dr. told me yesterday that he knows of nothing> > else> > > > > > > that can be done and that I need to start accepting things.> He> > > > said> > > > > > > that with a terminal illness, I should expect to get worse> > > instead> > > > > > > of hoping. He said the time for hope is over now and that> > maybe> > > I> > > > > > > need to see a therapist to help me through this. He then> > wanted> > > to> > > > > > > write me a script for Zoloft to "help". He did say that I> > would> > > > > > > probably need to think about going into the hospital again> > soon,> > > > to> > > > > > > drain s! ome of the fluid out of me. I have already done> that> > > but> > > > it> > > > > > > just comes back. I read that with the hypertension, that> your> > > legs> > > > > > > cana get very large and heavy. And that is what is> happening.> > > Also> > > > > > > having a problem with my portable oxygen. Since I am now on> > > liquid> > > > > > > oxygen, the tank I havae to carry is so heavy that it takes> > all> > > my> > > > > > > energy to carry it. Evidently the office called the supplier> > and> > > I> > > > > > > just got a call from them stating that Cigna does not> > authorize> > > > the> > > > > > > really small one. I am calling Cigna. I know I sound> depressed> > > in> > > > > > > this post. I know I am discouraged. Really really tired of> > > > > > > everything. Tired of the tube in my nose, tired of> calculating> > > > what> > > > > > > I can do because of limited breath, tired of sitting. Just> > > tired.> > > > > > > Tired of being told that I have lived longer than most> people> > > with> > > > > > > my disease.> > > > > > > I dont know how to be! a sick person.> > > > > > > Thanks for listening.> > > > > > > > > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Armede...did you get my post re: your site? Sher

Re: Pulm.! Visit- > > > > >! ; >> > > > > >> > > > > > Hi , I hate to hear your having such a rough time. I> think> > at> > > one> > > > > time or another we have all been told nothing will cure this> > > disease,> > > > > That is so very hard to hear.> > > > > > Please remember you do have life so live it to it's fullest.> > Fight> > > the> > > > > good fight. Only God knows when we're going home.> > > > > > As far as the antidepressant, I strongly recommend it. I> didn't> > > > > realize how down I actually was until I started on wellbrutrin.> > You> > > will> > > > > feel like living and like yourself. This monster as we call it,> is> > > hard> > & g! t; > > enough on our emotions.> > > > > > We are here to support you in what ever way you need us, so> vent> > > away.> > > > > I will be praying for you. God grant you peace...> > > > > > Love and Prayers, Peggy 9/04 ipf> > > > > >> > > > > >> > > > > >> > > > > > I went to my pulm. yesterday. Sats were 82, even though I use> > > > > > oxygen continuously. Am having a real diffic! ulty now with> > > getting> > > > > > in and out of chairs, doing simple things in the house. I just> > get> > > > > > so out of breath. The Dr. said the increased SOB is because of> > my> > > > > > pulmonary hypertension, which is worsening. There is a new> med.> > > for> > & g! t; > > > it but Cigna does not approve it and therefore I have to pay> > > > > > privately. I am going to do that for a while. But I wonder> what> > is> > > > > > the use? My dr. told me yesterday that he knows of nothing> else> > > > > > that can be done and that I need to start accepting things. He> > > said> > > > > > that with a terminal illness, I should expect to get worse> > instead> > > > > > of hoping. He said the time for hope is over now and that> maybe> > I> > > > > > need to see a therapist to help me through this. He then> wanted> > to> > > > > > write me a script for Zoloft to "help". He did say that I> would> > > > > > probably need to think about going into the hospital again> soon,> > > to> > > > > > drain s! ome of the fluid out of me. I have already done that> > but> > > it> > > > > > just comes back. I read that with the hypertension, that your> > legs> > > > > > cana get very large and heavy. And that is what is happening.> > Also> > > > > > having a problem with my portable oxygen. Since I am now on> > liquid> > > > > > oxygen, the tank I havae to carry is so heavy that it takes> all> > my> > > > > > energy to carry it. Evidently the office called the supplier> and> > I> > > > > > just got a call from them stating that Cigna does not> authorize> > > the> > > > > > really small one. I am calling Cigna. I know I sound depressed> > in> > > & ! gt; > > this post. I know I am discouraged. Really really tired of> > > > > > everything. Tired of the tube in my nose, tired of calculating> > > what> > > > > > I can do because of limited breath, tired of sitting. Just> > tired.> > > > > > Tired of being told that I have lived longer than most people> > with> > > > > > my disease.> > > > > > I dont know how to be! a sick person.> > > > > > Thanks for listening.> > > > > > > > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Lynne, I checked out the web site and you are so right about our needing to be in charge of our health care. No one knows our bodies like we do and I think all of us have enough sense to know when some thing is wrong with us. That was the hardest thing for me. I kept telling my primary health care person who happens to be a Nurse Practitioner that something was wrong because I couldn't breath. She beleive me it was just finding someone else that would beleive me. I was actually beginning to think I was nuts. I am sure you know the feeling. If you can e-mail me your phone number to russellshih@... I will call you when you think it will be a good time and we can talk. I enjoy reading your post and I think your web site is very informative and is some thing that needs to be out there not just for those of us that suffer from lung disease but for our families and care givers.

Hugs and Prayers!

Barbara R IPF 1/2003> > > > > > >> > > > > > > To .> > > > > > > I just read your post and I wish I could be with you to talk> > and> > > > visit> > > > > > awhile. I understand your fatigue and feelings of> hopelessness.> > I> > > > had> > > > > > that awhile back too and the new antidepressant my Dr. put me> on> > > > > > (Cymbalta) has helped me immensely!> > > > > > > A great many of us on this board are on varied> > anti-depressants> > > > and> > > > > > all say they feel better.> > > > > > > Does your Dr. know your insurance won't cover the new> > > medication?> > > > > > Perhaps he has samples he will give you or can recommend help.> > > > Often, if> > > > > > you contact the manufacture directly with your situation, they> > > will> > > > > > provide free or greatly reduced cost!> > > > > > > I think your Dr. sounds ext! remely insensitive! I changed> Drs> > > > only two> > > > > > days ago because I don't think he has my best interests at> > heart.> > > > > > > I read your helplessness in your post . I feel sad> > whenever> > > > any> > > > > > one of us has to face the reality of our common disease.> > > > > > > Do you have another oxygen supplier that may work with your> > > needs> > > > > > better than the current one? For me, I had one> > > > supplier...Apria...and> > > > > > I'm so fed up with them I am changing insurance to Regence> Blue> > > > Cross> > > > > > simply to get away from Apria!> > > > > > > , none of know how to "be sick" and don't apologize for> > > > feeling> > > > > > depressed and/or discouraged. How else could you possible> feel?> > > > > > > If you really believe you have reached the place where you> do> > > need> > > > to> > > > > > accept the end stage of the disease, there are still things> you> > > can> > > > do> > > > > > to feel in control....Get your affairs in order; do a living> > will> > > or> > > > > > some document that will carry out your wishes; ! write letters> > to> > > > family> > > > > > members and have good conversations with each person. Make> plans> > > for> > > > > > your personal things, even make plans for your funeral. I> know,> > > this> > > > > > stuff is heart-wrenching and it feels like you've been> gut-shot.> > > But> > > > > > when it's all done you will feel a great burden lifted and> will> > > find> > > > a> > > > > > sense of peace.> > > > > > > We're all here for you. If I can personally be of help,> write> > me> > > > at> > > > > > bofus@> > > > > > > Most of all do what you know you need to do, no matter what> > > anyone> > > > > > says. This is OUR battle and we each fight it with our chosen> > > > weapon.> > > > > > > You are not alone dear heart.> > > > > > > Love, Sher ipf 5-06> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > > Re: Pulm. Visit- > > > > > >! ; >> > > > > > >> > > > > > > Hi , I hate to hear your having such a rough time. I> > think> > > at> > > > one> > > > > > time or another we have all been told nothing will cure this> > > > disease,> > > > > > That is so very hard to hear.> > > > > > > Please remember you do have life so live it to it's fullest.> > > Fight> > > > the> > > > > > good fight. Only God knows when we're going home.> > > > > > > As far as the antidepressant, I strongly recommend it. I> > didn't> > > > > > realize how down I actually was until I started on> wellbrutrin.> > > You> > > > will> > > > > > feel like living and like yourself. This monster as we call> it,> > is> > > > hard> > > > > > enough on our emotions.> > > > > > > We are here to support you in what ever way you need us, so> > vent> > > > away.> > > > > > I will be praying for you. God grant you peace...> > > > > > > Love and Prayers, Peggy 9/04 ipf> > > > > > >> > > > > > >> > > > > > >> > > > > > > I went to my pulm. yesterday. Sats were 82, even though I> use> > > > > > > oxygen continuously. Am having a real diffic! ulty now with> > > > getting> > > > > > > in and out of chairs, doing simple things in the house. I> just> > > get> > > > > > > so out of breath. The Dr. said the increased SOB is because> of> > > my> > > > > > > pulmonary hypertension, which is worsening. There is a new> > med.> > > > for> > > > > > > it but Cigna does not approve it and therefore I have to pay> > > > > > > privately. I am going to do that for a while. But I wonder> > what> > > is> > > > > > > the use? My dr. told me yesterday that he knows of nothing> > else> > > > > > > that can be done and that I need to start accepting things.> He> > > > said> > > > > > > that with a terminal illness, I should expect to get worse> > > instead> > > > > > > of hoping. He said the time for hope is over now and that> > maybe> > > I> > > > > > > need to see a therapist to help me through this. He then> > wanted> > > to> > > > > > > write me a script for Zoloft to "help". He did say that I> > would> > > > > > > probably need to think about going into the hospital again> > soon,> > > > to> > > > > > > drain s! ome of the fluid out of me. I have already done> that> > > but> > > > it> > > > > > > just comes back. I read that with the hypertension, that> your> > > legs> > > > > > > cana get very large and heavy. And that is what is> happening.> > > Also> > > > > > > having a problem with my portable oxygen. Since I am now on> > > liquid> > > > > > > oxygen, the tank I havae to carry is so heavy that it takes> > all> > > my> > > > > > > energy to carry it. Evidently the office called the supplier> > and> > > I> > > > > > > just got a call from them stating that Cigna does not> > authorize> > > > the> > > > > > > really small one. I am calling Cigna. I know I sound> depressed> > > in> > > > > > > this post. I know I am discouraged. Really really tired of> > > > > > > everything. Tired of the tube in my nose, tired of> calculating> > > > what> > > > > > > I can do because of limited breath, tired of sitting. Just> > > tired.> > > > > > > Tired of being told that I have lived longer than most> people> > > with> > > > > > > my disease.> > > > > > > I dont know how to be! a sick person.> > > > > > > Thanks for listening.> > > > > > > > > > > > > >> > > > > >> > > > >> > > >> > >> >>