Re: Introduction from a new member

[Guest guest]

from Sher...Welcome to our board although I know there are other places we would rather be!

A lot of us were diagnosed this spring. Myself included. Diagnosed May, confirmed June.

I'm 68, married and my wonderful husband, Rich, is my helpful caretaker because I have other chronic problems.

I am on o2 with activity, walk 15min/day on treadmill and take NAC...ordered by pulmonologist...daily. I take other meds but not specifically for PF. I am also on an anti-depressant, as many of us are. I was on Lexapro and Dr. is changing to Cymbalta. Never took this one before....

There are people here who can answer every question.

God Bless and come back. ipf 5-06d

Introduction from a new member

Greetings from Ohio.

It’s a beautiful fall day.

I joined the group a few days ago and have been reading the files and as many emails as possible.

I was diagnosed with P.F last April after a bout with a virulent form of pneumonia along with hypersensitivity pneumonitis.

I am stunned by it all. I was very ill but thought I would recover. Am trying to deal with the reality of the disease and learn as much as possible.

Thank you for being here for support.

[Guest guest]

Diane,

My name is Joyce. Been here since Jan. 06. I was diagnosed at biopsy in 1997. Given 2-4 years. This coming April will be 10 years. A rough road to be sure, but I have been so blessed by these bonus years.

I was diagnosed PF secondary to Lupus. By suppressing my immune system and effectivly treating the connective tissue disease, this disease was somewhat stalled. I have gradually declined. I am considered in end stage, but still have a good time in this life.

I have been so grateful for the souls that visit here on this site. When I am down, I am lifted up. I get support and prayer from people who REALLY understand the fear and pain. I try to be here for them as well.

I hope that you stick around. We learn so much from each other.

Hugs, Joyce PF 1997>> Greetings from Ohio. > > It's a beautiful fall day.> > I joined the group a few days ago and have been reading the files and as> many emails as possible.> > I was diagnosed with P.F last April after a bout with a virulent form of> pneumonia along with hypersensitivity pneumonitis.> > I am stunned by it all. I was very ill but thought I would recover. Am> trying to deal with the reality of the disease and learn as much as> possible.> > Thank you for being here for support.> > >

[Guest guest]

-,

We live in St sburg FL and my husband has a Helios portable. We

use RX Stat for the oxygen supplier. 1- give them a call

I am sure they can set you up. I think they are statewide.

Good Luck

Barbara L

-- In Breathe-Support , " Holloway "

wrote:

>

> Thank you all for the welcome.

>

> I m following the list posts and learning every time some says

something.

>

> We are leaving Wed for our place in Fl. with a three day stop in

Wilmington

> N.C. I saw that state on several emails. LOL!

>

> I have an Invocare at home and have been given the attachment so I

can fill

> my own to go tanks. It will go in the car with us. I had a Helios

portable

> which I loved but they do not have a franchise in Florida evidently.

>

> I am so used to flying as my job required it that a road trip will

be a new

> experience.

>

> Most of you seem upbeat. What a great attitude. I am trying but

seem to get

> whiny and snively any time I try to talk about what's happening to

friends.

> Everyone says " You look wonderful. I though thought were sick " . I

want to

> burst into tears. This is not in my nature.

>

> You are the first people I have talked to that have this disease.

Thank you

> so much for being here.

>

> P.F 4/2006

>

> _____

>

> From: Breathe-Support

> [mailto:Breathe-Support ] On Behalf Of Sher K Bauman

> Sent: Saturday, October 07, 2006 6:55 PM

> To: Breathe-Support

> Subject: Re: Introduction from a new member

>

>

>

> from Sher...Welcome to our board although I know there are

other

> places we would rather be!

>

> A lot of us were diagnosed this spring. Myself included. Diagnosed

May,

> confirmed June.

>

> I'm 68, married and my wonderful husband, Rich, is my helpful

caretaker

> because I have other chronic problems.

>

> I am on o2 with activity, walk 15min/day on treadmill and take

NAC...ordered

> by pulmonologist...daily. I take other meds but not specifically

for PF. I

> am also on an anti-depressant, as many of us are. I was on Lexapro

and Dr.

> is changing to Cymbalta. Never took this one before....

>

> There are people here who can answer every question.

>

> God Bless and come back. ipf 5-06d

>

> Introduction from a new member

>

>

>

> Greetings from Ohio.

>

> It's a beautiful fall day.

>

> I joined the group a few days ago and have been reading the files

and as

> many emails as possible.

>

> I was diagnosed with P.F last April after a bout with a virulent

form of

> pneumonia along with hypersensitivity pneumonitis.

>

> I am stunned by it all. I was very ill but thought I would recover.

Am

> trying to deal with the reality of the disease and learn as much as

> possible.

>

> Thank you for being here for support.

>

>

>

[Guest guest]

Welcome . I've only been with this group for a couple weeks. But, I have learned so much about daily life with the disease. I was diag. 3/06 and had Pred, which I weaned myself off of. The group has been helpful to me because I see where the disease leads...and how others cope. You'll be so helped...joy ipf 3/6 Holloway wrote: Greetings from

Ohio. It’s a beautiful fall day. I joined the group a few days ago and have been reading the files and as many emails as possible. I was diagnosed with P.F last April after a bout with a virulent form of pneumonia along with hypersensitivity pneumonitis. I am stunned by it all. I was very ill but thought I would recover. Am trying to deal with the reality of the disease and learn as much as possible. Thank you for being here for support. Joy (IPF 3/06) Today is a gift for each of us. Enjoy it.

[Guest guest]

Thanks Joy,

Listening to people with the same

disease I am learning it can be different for each individual

You made me laugh as I am weaning myself

off the prednisone also.

As a newbie I have to get used to the O2

and a quieter lifestyle.

Glad I found the group.

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Joy Kiefner

Sent: Monday, October 09, 2006

6:45 PM

To: Breathe-Support

Subject: Re:

Introduction from a new member

Welcome

. I've only been with this group for a couple weeks. But, I

have learned so much about daily life with the disease. I was diag. 3/06

and had Pred, which I weaned myself off of. The group has been

helpful to me because I see where the disease leads...and how others

cope. You'll be so helped...joy ipf 3/6

Holloway

<dhollowaysaa (DOT) net> wrote:

Greetings from Ohio.

It’s a beautiful fall day.

I joined the group a few days ago and have been reading the

files and as many emails as possible.

I was diagnosed with P.F last April after a bout with a

virulent form of pneumonia along with hypersensitivity pneumonitis.

I am stunned by it all. I was very ill but thought I would

recover. Am trying to deal with the reality of the disease and learn as much as

possible.

Thank you for being here for support.

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

[Guest guest]

Hi , Please talk to your Dr and get instructions on reducing the prednisone. It can be very dangerous doing it on your own. It is hard enough being on it but harder coming off. Trust me you don't want the side effects. God Bless.

Love and Prayers, Peggy 9/04 ipf

Thanks Joy,

Listening to people with the same disease I am learning it can be different for each individual

You made me laugh as I am weaning myself off the prednisone also.

As a newbie I have to get used to the O2 and a quieter lifestyle.

Glad I found the group.

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Joy Kiefner

Sent: Monday, October 09, 2006 6:45 PM

To: Breathe-Support

Subject: Re: Introduction from a new member

Welcome . I've only been with this group for a couple weeks. But, I have learned so much about daily life with the disease. I was diag. 3/06 and had Pred, which I weaned myself off of. The group has been helpful to me because I see where the disease leads...and how others cope. You'll be so helped...joy ipf 3/6

Holloway wrote:

Greetings from Ohio.

It¹s a beautiful fall day.

I joined the group a few days ago and have been reading the files and as many emails as possible.

I was diagnosed with P.F last April after a bout with a virulent form of pneumonia along with hypersensitivity pneumonitis.

I am stunned by it all. I was very ill but thought I would recover. Am trying to deal with the reality of the disease and learn as much as possible.

Thank you for being here for support.

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

[Guest guest]

Hi , I weined myself off of predisone and soon as the next scan was done, The lung man put me on 10M again and gave me a RX to help regulate my sugar. Could not get the sugar leveled off so he reduced predisone to 5M with no sugar meds. Doing good at the present. Put me on NAC 3 pills a day. You guys coming off predisone keep us posted about what the doc has to say about your scans. My doc thinks the prednisone helps reduce the inflamation that is causing the scarring. Who knows? Prednisone will kick your butt if you stay on it too long. May god bless, Grey IPF 10-05

Re: Introduction from a new member

Hi , Please talk to your Dr and get instructions on reducing the prednisone. It can be very dangerous doing it on your own. It is hard enough being on it but harder coming off. Trust me you don't want the side effects. God Bless.Love and Prayers, Peggy 9/04 ipf

Thanks Joy, Listening to people with the same disease I am learning it can be different for each individual You made me laugh as I am weaning myself off the prednisone also. As a newbie I have to get used to the O2 and a quieter lifestyle. Glad I found the group.

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Joy KiefnerSent: Monday, October 09, 2006 6:45 PMTo: Breathe-Support Subject: Re: Introduction from a new member Welcome . I've only been with this group for a couple weeks. But, I have learned so much about daily life with the disease. I was diag. 3/06 and had Pred, which I weaned myself off of. The group has been helpful to me because I see where the disease leads...and how others cope. You'll be so helped...joy ipf 3/6 Holloway <dhollowaysaa (DOT) net> wrote:

Greetings from Ohio. It¹s a beautiful fall day. I joined the group a few days ago and have been reading the files and as many emails as possible. I was diagnosed with P.F last April after a bout with a virulent form of pneumonia along with hypersensitivity pneumonitis. I am stunned by it all. I was very ill but thought I would recover. Am trying to deal with the reality of the disease and learn as much as possible. Thank you for being here for support. Joy (IPF 3/06) Today is a gift for each of us. Enjoy it.

[Guest guest]

RE the prednisone.  They had me at 60 per

day and have been slowly weaning me off it. Am at 5 per day now and was told I could

stop any time I felt like it. My ct scan has not changed since April so I

assume that is a good sign. The fibrosis is full in one lung and about half in the

other. Amazing what you can do with half a lung eh????

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of jg singletary

Sent: Monday, October 09, 2006

11:29 PM

To: Breathe-Support

Subject: Re:

Introduction from a new member

Hi , I weined myself off of predisone and soon as

the next scan was done, The lung man put me on 10M again and gave me a RX

to help regulate my sugar. Could not get the sugar leveled off so he

reduced predisone to 5M with no sugar meds. Doing good at the

present. Put me on NAC 3 pills a day. You guys coming off predisone

keep us posted about what the doc has to say about your scans. My doc

thinks the prednisone helps reduce the inflamation that is causing the

scarring. Who knows? Prednisone will kick your butt if you stay on

it too long. May god bless, Grey IPF 10-05

Re:

Introduction from a new member

Welcome . I've only been with this group for a couple weeks.

But, I have learned so much about daily life with the disease. I

was diag. 3/06 and had Pred, which I weaned myself off of. The group has

been helpful to me because I see where the disease leads...and how others cope.

You'll be so helped...joy ipf 3/6

Holloway

<dhollowaysaa (DOT) net> wrote:

Greetings from Ohio.

It¹s a beautiful fall day.

I

joined the group a few days ago and have been reading the files and as many

emails as possible.

I was

diagnosed with P.F last April after a bout with a virulent form of pneumonia

along with hypersensitivity pneumonitis.

I am

stunned by it all. I was very ill but thought I would recover. Am trying to

deal with the reality of the disease and learn as much as possible.

Thank

you for being here for support.

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

[Guest guest]

Excuse my ignorance but what is NAC?

Am on tons of broncodilators, advair, sprivia(sp?)

singular plus the nebulizer with Zoponex.

Strangely enough I am allergic to albuterol

which I guess is a common treatment.

The O2 is 24/7.

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of jg singletary

Sent: Monday, October 09, 2006

11:29 PM

To: Breathe-Support

Subject: Re:

Introduction from a new member

Hi , I weined myself off of predisone and soon as

the next scan was done, The lung man put me on 10M again and gave me a RX

to help regulate my sugar. Could not get the sugar leveled off so he

reduced predisone to 5M with no sugar meds. Doing good at the

present. Put me on NAC 3 pills a day. You guys coming off predisone

keep us posted about what the doc has to say about your scans. My doc

thinks the prednisone helps reduce the inflamation that is causing the

scarring. Who knows? Prednisone will kick your butt if you stay on

it too long. May god bless, Grey IPF 10-05

Re:

Introduction from a new member

Welcome . I've only been with this group for a couple weeks.

But, I have learned so much about daily life with the disease. I

was diag. 3/06 and had Pred, which I weaned myself off of. The group has

been helpful to me because I see where the disease leads...and how others cope.

You'll be so helped...joy ipf 3/6

Holloway

<dhollowaysaa (DOT) net> wrote:

Greetings from Ohio.

It¹s a beautiful fall day.

I

joined the group a few days ago and have been reading the files and as many

emails as possible.

I was

diagnosed with P.F last April after a bout with a virulent form of pneumonia

along with hypersensitivity pneumonitis.

I am

stunned by it all. I was very ill but thought I would recover. Am trying to

deal with the reality of the disease and learn as much as possible.

Thank

you for being here for support.

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

[Guest guest]

Hello , N-ACETYLCYSTEINE is a herbal supplement called NAC for short. You can find information on the home page of this group. A lot of people on this group use it. I get mine from Puritan's Pride. Helps with the gook that builds up in the lungs. Are you a transplant candidate? So far I have not used any sprays or nebulizers. Been on o2 since Oct 05. Stay Strong, Grey IPF 10-05

Re: Introduction from a new member

Hi , Please talk to your Dr and get instructions on reducing the prednisone. It can be very dangerous doing it on your own. It is hard enough being on it but harder coming off. Trust me you don't want the side effects. God Bless.Love and Prayers, Peggy 9/04 ipf

Thanks Joy, Listening to people with the same disease I am learning it can be different for each individual You made me laugh as I am weaning myself off the prednisone also. As a newbie I have to get used to the O2 and a quieter lifestyle. Glad I found the group.

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Joy KiefnerSent: Monday, October 09, 2006 6:45 PMTo: Breathe-Support Subject: Re: Introduction from a new member Welcome . I've only been with this group for a couple weeks. But, I have learned so much about daily life with the disease. I was diag. 3/06 and had Pred, which I weaned myself off of. The group has been helpful to me because I see where the disease leads...and how others cope. You'll be so helped...joy ipf 3/6 Holloway <dhollowaysaa (DOT) net> wrote:

Greetings from Ohio. It¹s a beautiful fall day. I joined the group a few days ago and have been reading the files and as many emails as possible. I was diagnosed with P.F last April after a bout with a virulent form of pneumonia along with hypersensitivity pneumonitis. I am stunned by it all. I was very ill but thought I would recover. Am trying to deal with the reality of the disease and learn as much as possible. Thank you for being here for support.

Joy (IPF 3/06) Today is a gift for each of us. Enjoy it.

[Guest guest]

Thank you for the information. I will order

some.

I have never thought of a transplant. Am

61and don’t think I would want such a horrendous operation that would

only give a person a few more years.

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of jg singletary

Sent: Tuesday, October 10, 2006

11:17 AM

To: Breathe-Support

Subject: Re:

Introduction from a new member

Hello , N-ACETYLCYSTEINE is a herbal supplement

called NAC for short. You can find information on the home page of this

group. A lot of people on this group use it. I get mine from

Puritan's Pride. Helps with the gook that builds up in the lungs.

Are you a transplant candidate? So far I have not used any sprays or

nebulizers. Been on o2 since Oct 05. Stay Strong, Grey

IPF 10-05

Re:

Introduction from a new member

Welcome . I've only been with this group for a couple weeks.

But, I have learned so much about daily life with the disease. I

was diag. 3/06 and had Pred, which I weaned myself off of. The group has

been helpful to me because I see where the disease leads...and how others cope.

You'll be so helped...joy ipf 3/6

Holloway

<dhollowaysaa (DOT) net> wrote:

Greetings

from Ohio.

It¹s a beautiful fall day.

I

joined the group a few days ago and have been reading the files and as many

emails as possible.

I was

diagnosed with P.F last April after a bout with a virulent form of pneumonia

along with hypersensitivity pneumonitis.

I am

stunned by it all. I was very ill but thought I would recover. Am trying to

deal with the reality of the disease and learn as much as possible.

Thank

you for being here for support.

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

[Guest guest]

, Prior to RX Stat we were using HomeO2 out of Ft Myers, so if they would deliver to us and cannot see why RX Stat would not work for you. We changed suppliers with no problem the oxygen company just had to obtain a prescription from the doctor and it was done. We are on Medicare so maybe each insurance company has different policies. Englewood is a beautiful place so I am sure you will enjoy your living there. Barbara Holloway wrote: Thanks Barbara, Our place is in Englewood Florida south of Sarasota. Will check it out. We asked about service and the closest to us is in Ft. Myers. We have American Home Patient on our insurance coverage.They wont deliver to Englewood. I wonder if I can switch. Am so looking forward to the condo. It is small about 1100 sq. ft but cute as a button and no stairs thank God! Since I have always worked have never been able to spend more than 2 weeks there. Am hoping having access to a pool and the beach nearby I will get rid of the fat I have accumulated. Never thought it would happen so darn fast. Am going off the prednisone so that should help Cheers, . From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of bgl307Sent: Sunday, October 08, 2006 12:56 PMTo: Breathe-Support Subject: Re: Introduction from a new member -,We live in St sburg FL and my husband has a Helios portable. We use RX Stat for the oxygen supplier. 1- give them a call I am sure they can set you up. I think they are statewide.Good LuckBarbara L-- In Breathe-Support , " Holloway" wrote:>> Thank you all for the welcome.> > I m following the list posts and learning every time some says something.> > We are leaving Wed for our place in Fl. with a three day stop in Wilmington> N.C. I saw that state on

several emails. LOL!> > I have an Invocare at home and have been given the attachment so I can fill> my own to go tanks. It will go in the car with us. I had a Helios portable> which I loved but they do not have a franchise in Florida evidently.> > I am so used to flying as my job required it that a road trip will be a new> experience.> > Most of you seem upbeat. What a great attitude. I am trying but seem to get> whiny and snively any time I try to talk about what's happening to friends.> Everyone says "You look wonderful. I though thought were sick". I want to> burst into tears. This is not in my nature.> > You are the first people I have talked to that have this disease. Thank you> so much for being here.> > P.F 4/2006> > _____ > > From: Breathe-Support > [mailto:Breathe-Support ] On Behalf Of Sher K Bauman> Sent: Saturday, October 07, 2006 6:55 PM> To: Breathe-Support > Subject: Re: Introduction from a new member> > > > from Sher...Welcome to our board although I know there are other> places we would rather be!> > A lot of us were diagnosed this spring. Myself included. Diagnosed May,> confirmed June.> > I'm 68, married and my wonderful husband, Rich, is my helpful caretaker> because I have other chronic problems.> > I am on o2 with activity, walk 15min/day on treadmill and take NAC...ordered> by

pulmonologist...daily. I take other meds but not specifically for PF. I> am also on an anti-depressant, as many of us are. I was on Lexapro and Dr.> is changing to Cymbalta. Never took this one before....> > There are people here who can answer every question.> > God Bless and come back. ipf 5-06d> > Introduction from a new member> > > > Greetings from Ohio. > > It's a beautiful fall day.> > I joined the group a few days ago and have been reading the

files and as> many emails as possible.> > I was diagnosed with P.F last April after a bout with a virulent form of> pneumonia along with hypersensitivity pneumonitis.> > I am stunned by it all. I was very ill but thought I would recover. Am> trying to deal with the reality of the disease and learn as much as> possible.> > Thank you for being here for support.> > >

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.

[Guest guest]

Hi , I think I wrote you a "welcome"...but I'm not sure if you were the newbie it went to. Anyway, welcome and be at peace with this wonderful board. Everything you want to know you can find out from someone here.

I'm a newbie, sort of, myself....May '06 I was diagnosed. I am also on NAC that I get from Puritan.com as well. Seems to work well. Before I started it I had a persistent cough and spit up gunk every morning. I do neither now.

We're about the same age...I'm 68. I'm too old for transplant and I think I'm glad. By the time I progress to that stage I wouldn't want to go through it.

Hang in there. Hugs to you. Sher ipf 5-06

Re: Introduction from a new member

Hi , Please talk to your Dr and get instructions on reducing the prednisone. It can be very dangerous doing it on your own. It is hard enough being on it but harder coming off. Trust me you don't want the side effects. God Bless.Love and Prayers, Peggy 9/04 ipf

Thanks Joy, Listening to people with the same disease I am learning it can be different for each individual You made me laugh as I am weaning myself off the prednisone also. As a newbie I have to get used to the O2 and a quieter lifestyle. Glad I found the group.

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Joy KiefnerSent: Monday, October 09, 2006 6:45 PMTo: Breathe-Support Subject: Re: Introduction from a new member Welcome . I've only been with this group for a couple weeks. But, I have learned so much about daily life with the disease. I was diag. 3/06 and had Pred, which I weaned myself off of. The group has been helpful to me because I see where the disease leads...and how others cope. You'll be so helped...joy ipf 3/6 Holloway <dhollowaysaa (DOT) net> wrote:

Greetings from Ohio. It¹s a beautiful fall day. I joined the group a few days ago and have been reading the files and as many emails as possible. I was diagnosed with P.F last April after a bout with a virulent form of pneumonia along with hypersensitivity pneumonitis. I am stunned by it all. I was very ill but thought I would recover. Am trying to deal with the reality of the disease and learn as much as possible. Thank you for being here for support.

Joy (IPF 3/06) Today is a gift for each of us. Enjoy it.