Re: Hello everyone, I'm new...

[Guest guest]

, Welcome to the "air family". I

also have NSIP. I was DX'd in August of 2005.

I've been on Prednisone and Imuran from the outset and have been STABLE

all along.

I also have been on O2 24/7 all this time too.

Please think of O2 as an aid to your living with this disease not

something to avoid.

I hate dragging the portable O2, but without it I'd not leave the

house. That is not an acceptable

way for me to live my life.

You have a young daughter who needs you. The O2 and the proper

saturation numbers will

keep you here for her.

You do not have to feel breathless to need the O2.

Don't use that as a gauge!!!Please listen to all the others here

who posted while I was away...get an Oximeter...talk to the

pulmonologist. Keep the numbers above 90!

Your entire body will suffer and you will damage your other organs

without the proper saturation.

I did not mean for this to get so preachy...it's just that I'm

concerned.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Wleklinski wrote:

Hello to all. I have

not been on line for ages. My name is . I have read all and as

before I learn so much. I am pleased to recognize names with a few new

names. As for me I was able to get off Prednisone but stay on Imuran

and Bactrum as well as a bunch of nerve medicines for leftover nerve

problems for the open lung biopsy. I just passed my three 1/2 year mark

in August (since my diagnosis). I've lost 50% of my lungs on both sides

due to fibrosis. After being diagnosed with IPF for 1 1/2 years, they

now say NSIP. My nine year old girl, , is typing this for me. She

is MUCH faster than I am. I type the first 3 sentences and it took me a

half hour! So if ever you are waiting for a response from me, including

today, please remember, it may take me a while. Scratch that, it WILL

take me a while! I have a question for any of you willing to answer. In

the past four days, I have woken up tired. I am drowsy the whole day.

When I sit, I often find myself almost falling asleep. I am afraid to

drive and I have been feeling a little bit dizzy during at times during

the day. I haven't used oxygen for a year, and feel ignorant when I

should use it. I remember when I was fully breathless I would use it,

but what about these symptoms? Thank you ahead of time for ANY response.

-

NSIP, 3/05, UC

land

-----

Original Message ----

From: Carolyn Wade <carowade4444 (AT) yahoo (DOT) com>

To: Breathe-Support

Sent: Tuesday, September 23, 2008 10:35:19 AM

Subject: Re: hello to everyone

Hope you feel better soon, Brett. Glad to

hear from you. Hang in there!!

Caro

ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08

Mississippi

From:

brett bowser <brett (AT) vectordist (DOT) com>

Subject: hello to everyone

To: Breathe-Support

Date: Tuesday, September 23, 2008, 7:22 AM

Hi Gang,

first I would like to say I was so so sorry to read

about joyce

she was such an inspiration to all

mistie and I have been busy with kids and chemo ,

the chemo has started to get to me now , the first and second session

didn't bother me to much ,

but this last one I had on monday has really knocked me for a loop I

feel as though I just got run over by a truck

I am still working but I don't know how much longer I will

be able to keep that up and now

of course my hair is gone but I don't mind that so much

I will know how the treatment is helping in about a week or so I will

keep you all posted .

just wanted to let you all know ... IM STILL KICKING

Brett Bowser 40 MI.

familial UIP/IPF 11/07

stage 4 lung cancer 7/08

Internal Virus Database is out of date.

Checked by AVG - http://www.avg.com Version: 8.0.169 / Virus Database: 270.7.0/1683 - Release Date: 9/21/2008 10:10 AM

[Guest guest]

, I forgot to mention...I live in the

Philadelphis suburbs..not too far from Pink Joyce, and Tom too.

Maybe we could arrange to meet somewhere half way to land. Just a

thought.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Wleklinski wrote:

Hello to all. I have

not been on line for ages. My name is . I have read all and as

before I learn so much. I am pleased to recognize names with a few new

names. As for me I was able to get off Prednisone but stay on Imuran

and Bactrum as well as a bunch of nerve medicines for leftover nerve

problems for the open lung biopsy. I just passed my three 1/2 year mark

in August (since my diagnosis). I've lost 50% of my lungs on both sides

due to fibrosis. After being diagnosed with IPF for 1 1/2 years, they

now say NSIP. My nine year old girl, , is typing this for me. She

is MUCH faster than I am. I type the first 3 sentences and it took me a

half hour! So if ever you are waiting for a response from me, including

today, please remember, it may take me a while. Scratch that, it WILL

take me a while! I have a question for any of you willing to answer. In

the past four days, I have woken up tired. I am drowsy the whole day.

When I sit, I often find myself almost falling asleep. I am afraid to

drive and I have been feeling a little bit dizzy during at times during

the day. I haven't used oxygen for a year, and feel ignorant when I

should use it. I remember when I was fully breathless I would use it,

but what about these symptoms? Thank you ahead of time for ANY response.

-

NSIP, 3/05, UC

land

-----

Original Message ----

From: Carolyn Wade <carowade4444 (AT) yahoo (DOT) com>

To: Breathe-Support

Sent: Tuesday, September 23, 2008 10:35:19 AM

Subject: Re: hello to everyone

Hope you feel better soon, Brett. Glad to

hear from you. Hang in there!!

Caro

ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08

Mississippi

From:

brett bowser <brett (AT) vectordist (DOT) com>

Subject: hello to everyone

To: Breathe-Support

Date: Tuesday, September 23, 2008, 7:22 AM

Hi Gang,

first I would like to say I was so so sorry to read

about joyce

she was such an inspiration to all

mistie and I have been busy with kids and chemo ,

the chemo has started to get to me now , the first and second session

didn't bother me to much ,

but this last one I had on monday has really knocked me for a loop I

feel as though I just got run over by a truck

I am still working but I don't know how much longer I will

be able to keep that up and now

of course my hair is gone but I don't mind that so much

I will know how the treatment is helping in about a week or so I will

keep you all posted .

just wanted to let you all know ... IM STILL KICKING

Brett Bowser 40 MI.

familial UIP/IPF 11/07

stage 4 lung cancer 7/08

Internal Virus Database is out of date.

Checked by AVG - http://www.avg.com Version: 8.0.169 / Virus Database: 270.7.0/1683 - Release Date: 9/21/2008 10:10 AM

[Guest guest]

Hello Z and Pink Joyce I finally was able to get my laptop back from my kids!!! I do not spell well but I re-read what my daughter wrote and I laughed. Anyway I have no idea about directions but I will meet half-way......anywhere. Just the thought of having a in person support group is comforting to me. I am in Germantown Montgomery County M.D. Let me Know if Tom is interesed. Is anyone in this area ?

My daughter is home, so I gotta go.. Be back later! To ALL, have a good day!!!! NSIPMarch 05land

hello to everyoneTo: Breathe-Support@ yahoogroups. comDate: Tuesday, September 23, 2008, 7:22 AM

Hi Gang,

first I would like to say I was so so sorry to read about joyce

she was such an inspiration to all

mistie and I have been busy with kids and chemo ,the chemo has started to get to me now , the first and second session didn't bother me to much ,but this last one I had on monday has really knocked me for a loop I feel as though I just got run over by a truckI am still working but I don't know how much longer I will be able to keep that up and nowof course my hair is gone but I don't mind that so muchI will know how the treatment is helping in about a week or so I will keep you all posted .

just wanted to let you all know ... IM STILL KICKING

Brett Bowser 40 MI.

familial UIP/IPF 11/07

stage 4 lung cancer 7/08

Internal Virus Database is out of date.

Checked by AVG - http://www.avg. com Version: 8.0.169 / Virus Database: 270.7.0/1683 - Release Date: 9/21/2008 10:10 AM

[Guest guest]

, i used to have a friend who lived in Germantown MD, it's a little past Rockville

I will try to figure out where midway would be, maybe DelawarePink Joyce IPF 3/06 Pennslvania

From: brett bowser <brett (AT) vectordist (DOT) com>Subject: hello to everyoneTo: Breathe-Support@ yahoogroups. comDate: Tuesday, September 23, 2008, 7:22 AM

Hi Gang,

first I would like to say I was so so sorry to read about joyce

she was such an inspiration to all

mistie and I have been busy with kids and chemo ,the chemo has started to get to me now , the first and second session didn't bother me to much ,but this last one I had on monday has really knocked me for a loop I feel as though I just got run over by a truckI am still working but I don't know how much longer I will be able to keep that up and nowof course my hair is gone but I don't mind that so muchI will know how the treatment is helping in about a week or so I will keep you all posted .

just wanted to let you all know ... IM STILL KICKING

Brett Bowser 40 MI.

familial UIP/IPF 11/07

stage 4 lung cancer 7/08

Internal Virus Database is out of date.

Checked by AVG - http://www.avg. com Version: 8.0.169 / Virus Database: 270.7.0/1683 - Release Date: 9/21/2008 10:10 AM

[Guest guest]

, My daughter-in-law's sister lives

in

Germantown, land. Small world. Her name is Elissa Ehrenstein,

she's just 38 with two little boys 5 and 3.

Somewhere in Delaware might work. I'll ask my d-i-l If she can

suggest a location half way.

My son Adam and wife Ilana and their little girl Darah drive to see her

family frequently.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Wleklinski wrote:

Hello

Z and Pink Joyce I finally was able to get my laptop back from

my kids!!! I do not spell well but I re-read what my daughter wrote and

I laughed. Anyway I have no idea about directions but I will meet

half-way......anywhere. Just the thought of having a in person

support group is comforting to me. I am in Germantown Montgomery County

M.D. Let me Know if Tom is interesed. Is anyone in this area ?

My daughter is home, so I gotta go.. Be back later! To ALL, have

a good day!!!!

NSIP

March 05

land

-----

Original Message ----

From: Zion <ljz741 (AT) verizon (DOT) net>

To: Breathe-Support

Sent: Friday, September 26, 2008 1:00:58 AM

Subject: Re: Hello everyone, I'm new...

, I forgot to mention...I live

in the Philadelphis suburbs...not too far from Pink Joyce, and Tom too.

Maybe we could arrange to meet somewhere half way to land. Just a

thought.

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah

and Sara

“I’m gonna be

iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Wleklinski wrote:

Hello to all. I

have not been on line for ages. My name is . I have read all and

as before I learn so much. I am pleased to recognize names with a few

new names. As for me I was able to get off Prednisone but stay on

Imuran and Bactrum as well as a bunch of nerve medicines for leftover

nerve problems for the open lung biopsy. I just passed my three 1/2

year mark in August (since my diagnosis). I've lost 50% of my lungs on

both sides due to fibrosis. After being diagnosed with IPF for 1 1/2

years, they now say NSIP. My nine year old girl, , is typing this

for me. She is MUCH faster than I am. I type the first 3 sentences and

it took me a half hour! So if ever you are waiting for a response from

me, including today, please remember, it may take me a while. Scratch

that, it WILL take me a while! I have a question for any of you willing

to answer. In the past four days, I have woken up tired. I am drowsy

the whole day. When I sit, I often find myself almost falling asleep. I

am afraid to drive and I have been feeling a little bit dizzy during at

times during the day. I haven't used oxygen for a year, and feel

ignorant when I should use it. I remember when I was fully breathless I

would use it, but what about these symptoms? Thank you ahead of time

for ANY response.

-

NSIP, 3/05, UC

land

-----

Original Message ----

From: Carolyn Wade <carowade4444@ yahoo.com>

To: Breathe-Support@ yahoogroups. com

Sent: Tuesday, September 23, 2008 10:35:19 AM

Subject: Re: hello to everyone

Hope you feel better soon, Brett. Glad to

hear from you. Hang in there!!

Caro

ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08

Mississippi

From:

brett bowser <brett (AT) vectordist (DOT) com>

Subject: hello to everyone

To: Breathe-Support@ yahoogroups. com

Date: Tuesday, September 23, 2008, 7:22 AM

Hi Gang,

first I would like to say I was so so sorry to read

about joyce

she was such an inspiration to all

mistie and I have been busy with kids and chemo ,

the chemo has started to get to me now , the first and second session

didn't bother me to much ,

but this last one I had on monday has really knocked me for a loop I

feel as though I just got run over by a truck

I am still working but I don't know how much longer I will

be able to keep that up and now

of course my hair is gone but I don't mind that so much

I will know how the treatment is helping in about a week or so I will

keep you all posted .

just wanted to let you all know ... IM STILL KICKING

Brett Bowser 40 MI.

familial UIP/IPF 11/07

stage 4 lung cancer 7/08

Internal Virus Database is out of date.

Checked by AVG - http://www.avg. com

Version: 8.0.169 / Virus Database: 270.7.0/1683 - Release Date: 9/21/2008 10:10 AM

No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.169 / Virus Database: 270.7.5/1697 - Release Date: 9/29/2008 7:40 AM

[Guest guest]

Thanks Pink Joyce IPF 3/06 Pennslvania >>>>>>

From: brett bowser <brett (AT) vectordist (DOT) com>>>> Subject: hello to everyone>>> To: Breathe-Support@ yahoogroups. com>>> Date: Tuesday, September 23, 2008, 7:22 AM>>>>>> Hi Gang,>>>>>> first I would like to say I was so so sorry to read about joyce>>> she was such an inspiration to all>>>>>> mistie and I have been busy with kids and chemo ,>>>>>> the chemo has started to get to me now , the first and>>> second session>>> didn't bother me to much ,>>>

but this last one I had on monday has really knocked me for>>> a loop I>>> feel as though I just got run over by a truck>>> I am still working but I don't know how much longer I will>>> be able to keep that up and now>>> of course my hair is gone but I don't mind that so much>>> I will know how the treatment is helping in about a week or>>> so I will>>> keep you all posted .>>> just wanted to let you all know ... IM STILL KICKING>>>>>> Brett Bowser 40 MI.>>> familial UIP/IPF 11/07>>>

stage 4 lung cancer 7/08>>>>>>>>>>>>>>>>>>>>>>>>------------ --------- --------- --------- --------- --------- --------- ------>>>>>>>>>Internal Virus Database is out of date.>>>Checked by AVG - http://www.avg. com >>>Version: 8.0.169 / Virus Database: 270.7.0/1683 - Release Date: 9/21/2008 10:10 AM>>>>>> >>>>>>>------------ --------- --------- --------- --------- --------- --------- ------>>>>>>No virus found in this incoming message.>>Checked by AVG - http://www.avg. com >>Version: 8.0.169 / Virus Database: 270.7.5/1697 - Release Date:

9/29/2008 7:40 AM>>>> >>>> >>------------ --------- --------- --------- --------- --------- --------- ------>>>No virus found in this incoming message.>Checked by AVG - http://www.avg. com >Version: 8.0.169 / Virus Database: 270.7.5/1698 - Release Date: 9/29/2008 7:25 PM>> >------------ --------- --------- ------

[Guest guest]

Thanks Pink Joyce IPF 3/06 Pennslvania >>>>>>

From: brett bowser <brett (AT) vectordist (DOT) com>>>> Subject: hello to everyone>>> To: Breathe-Support@ yahoogroups. com>>> Date: Tuesday, September 23, 2008, 7:22 AM>>>>>> Hi Gang,>>>>>> first I would like to say I was so so sorry to read about joyce>>> she was such an inspiration to all>>>>>> mistie and I have been busy with kids and chemo ,>>>>>> the chemo has started to get to me now , the first and>>> second session>>> didn't bother me to much ,>>>

but this last one I had on monday has really knocked me for>>> a loop I>>> feel as though I just got run over by a truck>>> I am still working but I don't know how much longer I will>>> be able to keep that up and now>>> of course my hair is gone but I don't mind that so much>>> I will know how the treatment is helping in about a week or>>> so I will>>> keep you all posted .>>> just wanted to let you all know ... IM STILL KICKING>>>>>> Brett Bowser 40 MI.>>> familial UIP/IPF 11/07>>>

stage 4 lung cancer 7/08>>>>>>>>>>>>>>>>>>>>>>>>------------ --------- --------- --------- --------- --------- --------- ------>>>>>>>>>Internal Virus Database is out of date.>>>Checked by AVG - http://www.avg. com >>>Version: 8.0.169 / Virus Database: 270.7.0/1683 - Release Date: 9/21/2008 10:10 AM>>>>>> >>>>>>>------------ --------- --------- --------- --------- --------- --------- ------>>>>>>No virus found in this incoming message.>>Checked by AVG - http://www.avg. com >>Version: 8.0.169 / Virus Database: 270.7.5/1697 - Release Date:

9/29/2008 7:40 AM>>>> >>>> >>------------ --------- --------- --------- --------- --------- --------- ------>>>No virus found in this incoming message.>Checked by AVG - http://www.avg. com >Version: 8.0.169 / Virus Database: 270.7.5/1698 - Release Date: 9/29/2008 7:25 PM>> >------------ --------- --------- ------