hi

[Guest guest]

Dan,

How were you when they listed you? Did you have a living donor?

I know I always get very scared thinking about the tx list.

Thanks,AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Hi! Nice to hear from you Dan. I was just looking at the archived

messages and noticed that you were the first person to post to this

group besides ! Great to hear that your doing well!

athan

[Guest guest]

athan,

Thanks for the welcome. Things have changed. I don't know how many

people I will know on the group or how many will remember me, but I was

glad to see you were still hanging around here.

Blessings!

Dan

>

> Hi! Nice to hear from you Dan. I was just looking at the archived

> messages and noticed that you were the first person to post to this

> group besides ! Great to hear that your doing well!

>

> athan

>

[Guest guest]

I had some esophogeal bleeding and was banded through a regiment of 4

procedures. With the last one they didn't add any bands. I had one

case of ascites and had to be " drained " about 2.5 quarts. This was

proceded by my first ER visit and hospitalization for 2 days.

I was working 50 to 60 hours per week and would CRASH all weekend to

get ready for the next week. I did suffer from hepatic

encephalopathy, but was able to press on. At the time I was pretty

high up in management in a manufacturing facility. I still

maintained effectiveness. Not sure if others would agree

Being listed did not scare me. Not at all. The only time I was

afraid was when I was wheeled into the operating room. I wanted to

get up and leave. This was very intimidating! All the lights and a

crowd of people.

Before that, I was waiting with my family for the doctors to come and

tell me that the liver was in good condition and that the procedure

was a go. Telling my wife and son that I loved them changed me. It

is strange knowing that you might be saying " goodbye, " not " see you

in a bit. "

What were the last words that I wanted my family to hear? That's a

kicker.

I did not get a liver from a living donor.

Hope this helps.

Dan

P.S. Keep asking questions! I don't mind answering.

>

> Dan,

>

> How were you when they listed you? Did you have a living donor?

>

> I know I always get very scared thinking about the tx list.

>

> Thanks,

[Guest guest]

Noreen

We're sorry you have to be here but we welcome you and hope we can help

you. How were you diagnosed? Based on CT or what? Did they indicate what

form of PF you might have?

You've made a very good move by seeking to learn more from those who

have the disease. I say that because you are going to have to become the

manager of your medical treatment. You may have already done that with

your existing conditions. This is much like MS in some respects in that

while diagnosing PF may be easier, there are different forms. Like, MS

there are then complex decisions ahead. Unlike diabetes there are no

clear cut decisions. The first you will face is whether to have a biopsy

or not. You may think of that as a doctor's decision, but I think of it

as something on which doctor's will advise you and you'll have to gather

information and decide.

There will be issues of what you're going to gain from a biopsy and how

you'd use that information. The other decision that is most difficult is

what meds to try, if any. Imuran and Prednisone are most common. They

are believed effective on some forms and less so on others. However,

they do have many side effects. Those have to be considered in light of

your diabetes especially.

Congratulations on quitting smoking. Now, one thing I suspect you've

already experienced with MS and diabetes but that PF patients need to be

reminded of is learning how to live with the disease. The diagnosis is

depressing and you immediately think about death. However, you'll find

people in all stages of the disease here enjoying their lives and

gaining much pleasure from it.

>

> I've recently been dx'd with IPF and know almost nothing about

it.. Have had 2 PFT's done and am waiting to do a 3rd. Haven't

received much info from my doc as he is waiting to see how things

improve with my quitting smoking...quit 1/1/08! He wants to put off

doing a biopsy as I also have multiple sclerosis and diabetes. But in

the meantime I feel hung up with no info and lost in space. Would love

to have friends who will help me find myself again and who I can help in

anyway. Looking forward to meeting some.

> noreen

>

[Guest guest]

Hi Bruce

thanks for the reply and welcome. I'm new at this type of support system..m.s. group is live on Internet, not through e-mail. Please be patient (: I was dx'd via CT and X-ray. Need to have the biopsy done to find out what form of PF I have. I know from past experiences that all decisions are up to me. I want the bi-op done to find out what type I have so can proceed from there but my doc makes sense about the problems due to everything else that has to be taken into consideration. I know nothing about PF except that it "will kill me within 3 yrs". The only thing I'm doing right now is using Combivent 3x day. I just feel so up in the air with nothing getting done so no info that I can latch onto.

Thanks Bruce.

noreen

Re: hi

NoreenWe're sorry you have to be here but we welcome you and hope we can helpyou. How were you diagnosed? Based on CT or what? Did they indicate whatform of PF you might have?You've made a very good move by seeking to learn more from those whohave the disease. I say that because you are going to have to become themanager of your medical treatment. You may have already done that withyour existing conditions. This is much like MS in some respects in thatwhile diagnosing PF may be easier, there are different forms. Like, MSthere are then complex decisions ahead. Unlike diabetes there are noclear cut decisions. The first you will face is whether to have a biopsyor not. You may think of that as a doctor's decision, but I think of itas something on which doctor's will advise you and you'll have to gatherinformation and decide.There will be issues of what you're going to gain from a

biopsy and howyou'd use that information. The other decision that is most difficult iswhat meds to try, if any. Imuran and Prednisone are most common. Theyare believed effective on some forms and less so on others. However,they do have many side effects. Those have to be considered in light ofyour diabetes especially.Congratulations on quitting smoking. Now, one thing I suspect you'vealready experienced with MS and diabetes but that PF patients need to bereminded of is learning how to live with the disease. The diagnosis isdepressing and you immediately think about death. However, you'll findpeople in all stages of the disease here enjoying their lives andgaining much pleasure from it.>> I've recently been dx'd with IPF and know almost nothing aboutit.. Have had 2 PFT's done and am waiting to do a 3rd. Haven'treceived much info from my doc as he is waiting to see how thingsimprove with my quitting smoking...quit 1/1/08! He wants to put offdoing a biopsy as I also have multiple sclerosis and diabetes. But inthe meantime I feel hung up with no info and lost in space. Would loveto have friends who will help me find myself again and who I can help inanyway. Looking forward to meeting some.> noreen>

[Guest guest]

Noreen, Welcome to this support group. You will find plenty of friends and listeners here who will help you with understanding how to best cope with this dx. good luck and talk again.

Steve 60 from Buckley WA IPF 2006

Reply-To: Breathe-Support To: Breathe-Support Subject: hiDate: Fri, 22 Aug 2008 20:00:56 -0700 (PDT)

I've recently been dx'd with IPF and know almost nothing about it. Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much info from my doc as he is waiting to see how things improve with my quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I also have multiple sclerosis and diabetes. But in the meantime I feel hung up with no info and lost in space. Would love to have friends who will help me find myself again and who I can help in anyway. Looking forward to meeting some.

noreen

[Guest guest]

Noreen

You can do this live on the internet too. Just click on your yahoo my

groups and come here. Thats the way I do it.

Now, first....no one knows when it will kill you. Even with UIP, the

shortest term one, 30% live over five years. Yes, many die within 3.

With other forms people live much longer. As we say, none of us have

expiration dates stamped on our butts.

As to the VATS (biopsy), I've had it, glad I did, but it is a very

invasive surgery. They take three pieces out of your lungs and its not

the easy innocent surgery they sometimes present. Some have no problems,

some have few but residual pain from it and some have more. So like

everything, just learn what to expect and decide on your own.

Now, also, before you have it, it would be good to decide what you're

going to do different depending on the outcome. Some do Imuran and

Prednisone regardless of the form. Some don't do them period. Some use

it to decide. Did they seem certain you have PF from the CT's? If so,

did they express an opinion as to the form?

Sorry for so many questions but trying to understand so we'll be able to

talk to you intelligently. You said you're taking Combivent? What was it

prescribed for? Is it helping? It's used some for PF patients but its

more a COPD med to clear the passageways. COPD is an obstructive disease

while PF is restrictive and actually scars the lungs. So guess you're

not on oxygen yet and your oxygen saturation is ok?

I'm glad to see your doctor a little cautious about the biopsy as many

just do it automatically. Doesn't mean you won't do it, but nice to see

a doctor who isn't on automatic.

Always feel free to ask or say anything here. Ours is a very open forum

where we ask and we express our feelings from tears to laughter to anger

to joy to fear.

> >

> > I've recently been dx'd with IPF and know almost nothing about

> it.. Have had 2 PFT's done and am waiting to do a 3rd. Haven't

> received much info from my doc as he is waiting to see how things

> improve with my quitting smoking...quit 1/1/08! He wants to put off

> doing a biopsy as I also have multiple sclerosis and diabetes. But in

> the meantime I feel hung up with no info and lost in space. Would love

> to have friends who will help me find myself again and who I can help

in

> anyway. Looking forward to meeting some.

> > noreen

> >

>

[Guest guest]

Noreen,

Hello and welcome! As others have said, I'm sorry you have reason to be here but since you do, I'm glad you found us. I'm Beth and I was diagnosed with pf just over two years ago. I had been ill, though mis-diagnosed for about a year or so prior to that. It's a frightening diagnosis especially because most of us had never even heard of pulmonary fibrosis before we were suddenly faced with it.

Talk lots about the biopsy with your doctor before you commit to it. I had one and would do it again but as Bruce pointed out, it is invasive surgery and the recovery can be quite bumpy. Especially because they are operating on our already compromised lungs. I had to be on a ventilator for two days post-op. However once I got past that and by the time they took my stiches out, I was fine. The information I gained was worth it for me. Have you had a high resolution CT scan? or just a regular ct? They can gain an awful lot of info from a HRCT. Maybe something to ask about.

In any case, don't be frightened by the dire predictions of life expectancy. It got easier for me after awhile. I realized day by day, I was still here, and life moves on. I accomodate my new limitations and am thankful for the gift of each new day.

Looking forward to getting to know you!

Beth

Moderator

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Re: hi

NoreenWe're sorry you have to be here but we welcome you and hope we can helpyou. How were you diagnosed? Based on CT or what? Did they indicate whatform of PF you might have?You've made a very good move by seeking to learn more from those whohave the disease. I say that because you are going to have to become themanager of your medical treatment. You may have already done that withyour existing conditions. This is much like MS in some respects in thatwhile diagnosing PF may be easier, there are different forms. Like, MSthere are then complex decisions ahead. Unlike diabetes there are noclear cut decisions. The first you will face is whether to have a biopsyor not. You may think of that as a doctor's decision, but I think of itas something on which doctor's will advise you and you'll have to gatherinformation and decide.There will be issues of what you're going to gain from a

biopsy and howyou'd use that information. The other decision that is most difficult iswhat meds to try, if any. Imuran and Prednisone are most common. Theyare believed effective on some forms and less so on others. However,they do have many side effects. Those have to be considered in light ofyour diabetes especially.Congratulations on quitting smoking. Now, one thing I suspect you'vealready experienced with MS and diabetes but that PF patients need to bereminded of is learning how to live with the disease. The diagnosis isdepressing and you immediately think about death. However, you'll findpeople in all stages of the disease here enjoying their lives andgaining much pleasure from it.>> I've recently been dx'd with IPF and know almost nothing aboutit.. Have had 2 PFT's done and am waiting to do a 3rd. Haven'treceived much info from my doc as he is waiting to see how thingsimprove with my quitting smoking...quit 1/1/08! He wants to put offdoing a biopsy as I also have multiple sclerosis and diabetes. But inthe meantime I feel hung up with no info and lost in space. Would loveto have friends who will help me find myself again and who I can help inanyway. Looking forward to meeting some.> noreen>

[Guest guest]

Re: Biopsy

I made the decision to have a biospy while in the hospital when RF

first

discovered (or should I say it discovered me). Too many things had

been going on over the years dealing with my autoimmune (AOSD) that I

needed some real answers to this new event. SInce I was already an

inpatient, decided to do it then and there. They were able to do the

less invasive method with the 3 holes and fiber optics. Found out

that it was quite close to having to go to an open lung but I had a

good surgeon and he got his " pound of flesh " without having to go

that route. We found out what we needed to find out and final

recovery was smooth.

However, I was told that the woke me in surgery to remove the vent to

see if I could breath on my own. (do not remember this) They sat me

up and I did ok, but then started waving my arms indicating I could

not breath and they had to revent me. Waking up in the ICU with the

vent still in totally freaked me out. I imagine the first time

waking up on a vent is that way for many. Please tell me that is the

case so I do not think that I am just a great big WEANY! I totally

freaked and they finally let my wife in to calm me down and stop

fighting it. After about 15-20 minutes (seemed like hours) they

removed the vent and I was fine after that.

All those tubes were very inconvenient when changing positions and

that first big cough was an 15 on the 1-10 pain scale.

But, would I do it over again to get the information, you bet.

So please tell me that I was not a big wuss and weany with my first

venting, ok?

tom from PA

> >

> > I've recently been dx'd with IPF and know almost nothing about

> it.. Have had 2 PFT's done and am waiting to do a 3rd. Haven't

> received much info from my doc as he is waiting to see how things

> improve with my quitting smoking...quit 1/1/08! He wants to put off

> doing a biopsy as I also have multiple sclerosis and diabetes. But

in

> the meantime I feel hung up with no info and lost in space. Would

love

> to have friends who will help me find myself again and who I can

help in

> anyway. Looking forward to meeting some.

> > noreen

> >

>

[Guest guest]

Hi Noreen ... Welcome to the board. There is sadness in being here but also this is the best place you can be. You will meet friends who understand you, answer your questions and support you.

It's really good news that you stopped smoking. There are a few smokers on the board but of course not smoking is one of the good things you do for yourself.

I've been here over 2 years and was fairly stable until a few months back and now feel a downturn in my breathing. I don't go out much because I get tired quickly and need O2 when I'm out.

Many here travel and have such good times...this is only for ME. My age, other health problems and trouble breathing keep me at home most of the time.

I'm one who does not want a lung bio. You will find different opinions here...pro and con. For ME, it doesn't make any difference what "strain" I have. I have a strain and they are all mostly PF in one form or another (over 200 strains). For ME, the treatment, like prednisone, is not something I want to take (side effects and weight gain). So why bother? Also my age is a factor. I just turned 70 on 8-4 and if I live lets say to 80, that's a good life span regardless of tests or no tests.

Like Bruce says, do become your own best advocate! Push for what you want/need and learn to say NO for what you don't.

Confusion is cleared her pretty quickly. Lots of opinions but your own becomes clear with information.

Are you married, with kids? Where do you live and how old are you? Oh, we're nosey too. lol!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: hi

NoreenWe're sorry you have to be here but we welcome you and hope we can helpyou. How were you diagnosed? Based on CT or what? Did they indicate whatform of PF you might have?You've made a very good move by seeking to learn more from those whohave the disease. I say that because you are going to have to become themanager of your medical treatment. You may have already done that withyour existing conditions. This is much like MS in some respects in thatwhile diagnosing PF may be easier, there are different forms. Like, MSthere are then complex decisions ahead. Unlike diabetes there are noclear cut decisions. The first you will face is whether to have a biopsyor not. You may think of that as a doctor's decision, but I think of itas something on which doctor's will advise you and you'll have to gatherinformation and decide.There will be issues of what you're going to gain from a biopsy and howyou'd use that information. The other decision that is most difficult iswhat meds to try, if any. Imuran and Prednisone are most common. Theyare believed effective on some forms and less so on others. However,they do have many side effects. Those have to be considered in light ofyour diabetes especially.Congratulations on quitting smoking. Now, one thing I suspect you'vealready experienced with MS and diabetes but that PF patients need to bereminded of is learning how to live with the disease. The diagnosis isdepressing and you immediately think about death. However, you'll findpeople in all stages of the disease here enjoying their lives andgaining much pleasure from it.>> I've recently been dx'd with IPF and know almost nothing aboutit.. Have had 2 PFT's done and am waiting to do a 3rd. Haven'treceived much info from my doc as he is waiting to see how thingsimprove with my quitting smoking...quit 1/1/08! He wants to put offdoing a biopsy as I also have multiple sclerosis and diabetes. But inthe meantime I feel hung up with no info and lost in space. Would loveto have friends who will help me find myself again and who I can help inanyway. Looking forward to meeting some.> noreen>

[Guest guest]

Tom, I've never awakened still on a vent

so I can't tell you.But, no one is a wuss around here!

You can vent and rant and do whatever you need to feel better. Please

also share the laughs and giggles too.

How's this beautiful PA weather treating you?. I 've been sitting

outside reading a lot!!!I have a covered patio

so I'm not in the sun just the clean , humidity free air at the end of

August! This is anything but typical...usually moer

like 90's and 90's in humidity too. I'm loving this!!!Wish I could

bottle it for the upcoming winter!

Hope our week-end is a good one

..

I'm going to veg out because I spent all day Friday baby -sitting my 6

month old grand daughter,Sara.

Boy am I pooped!!!She's crawling and that means nothing is safe or out

of her reach!!! At least she did nap for me!

Anyway, now I really know why children are meant to be raised by young

people!

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

Tom wrote:

Re: Biopsy

I made the decision to have a biospy while in the hospital when RF

first

discovered (or should I say it discovered me). Too many things had

been going on over the years dealing with my autoimmune (AOSD) that I

needed some real answers to this new event. SInce I was already an

inpatient, decided to do it then and there. They were able to do the

less invasive method with the 3 holes and fiber optics. Found out

that it was quite close to having to go to an open lung but I had a

good surgeon and he got his "pound of flesh" without having to go

that route. We found out what we needed to find out and final

recovery was smooth.

However, I was told that the woke me in surgery to remove the vent to

see if I could breath on my own. (do not remember this) They sat me

up and I did ok, but then started waving my arms indicating I could

not breath and they had to revent me. Waking up in the ICU with the

vent still in totally freaked me out. I imagine the first time

waking up on a vent is that way for many. Please tell me that is the

case so I do not think that I am just a great big WEANY! I totally

freaked and they finally let my wife in to calm me down and stop

fighting it. After about 15-20 minutes (seemed like hours) they

removed the vent and I was fine after that.

All those tubes were very inconvenient when changing positions and

that first big cough was an 15 on the 1-10 pain scale.

But, would I do it over again to get the information, you bet.

So please tell me that I was not a big wuss and weany with my first

venting, ok?

tom from PA

> >

> > I've recently been dx'd with IPF and know almost nothing about

> it.. Have had 2 PFT's done and am waiting to do a 3rd. Haven't

> received much info from my doc as he is waiting to see how things

> improve with my quitting smoking...quit 1/1/08! He wants to put off

> doing a biopsy as I also have multiple sclerosis and diabetes. But

in

> the meantime I feel hung up with no info and lost in space. Would

love

> to have friends who will help me find myself again and who I can

help in

> anyway. Looking forward to meeting some.

> > noreen

> >

>

No virus found in this incoming message.

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

Version: 8.0.138 / Virus Database: 270.6.7/1628 - Release Date: 8/22/2008 6:32 PM

[Guest guest]

Ah yes this weather has been wonderful. I just started back to work

on Wed. Luckily I work in IT and am able to work from home when I

need to. I had been on Short Term Disability from work since March

and it is good to be back in the swing of things. Not pushing myself

too much, but it is not like I dig ditches for a living. Working

from home with this weather has been a dream. I go out on the deck

under the umbrella with my laptop on a little table and drink in the

outdoors. What a life!

HAve a good weekend.

Tom

> > > >

> > > > I've recently been dx'd with IPF and know almost nothing about

> > > it.. Have had 2 PFT's done and am waiting to do a 3rd. Haven't

> > > received much info from my doc as he is waiting to see how

things

> > > improve with my quitting smoking...quit 1/1/08! He wants to put

off

> > > doing a biopsy as I also have multiple sclerosis and diabetes.

But

> > in

> > > the meantime I feel hung up with no info and lost in space.

Would

> > love

> > > to have friends who will help me find myself again and who I can

> > help in

> > > anyway. Looking forward to meeting some.

> > > > noreen

> > > >

> > >

> >

> >

> >

> >No virus found in this incoming message.

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

> >Version: 8.0.138 / Virus Database: 270.6.7/1628 - Release Date:

8/22/2008 6:32 PM

> >

> >

>

[Guest guest]

Thanks Steve...this is all new to me. When I went into my mail tonight I had 78 messages. Is there a support area to go to that doesn't got through e-mail? Like a chat room? It seems all of you know about IPF and are being treated. I know nothing yet except that I have it and will have at least one more PFT before my doc says much of anything. I feel like I'm in limbo and it's very frustrating. I don't even kn ow what to expect for the future or how to plan it. I know I sound pretty whiny. I'm a very positive person when I know what I'm dealing with. thanks for the welcome

hiDate: Fri, 22 Aug 2008 20:00:56 -0700 (PDT)

I've recently been dx'd with IPF and know almost nothing about it. Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much info from my doc as he is waiting to see how things improve with my quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I also have multiple sclerosis and diabetes. But in the meantime I feel hung up with no info and lost in space. Would love to have friends who will help me find myself again and who I can help in anyway. Looking forward to meeting some.

noreen

[Guest guest]

Noreen, Welcome. You are not whiny..you're

scared! We've all been there!

Just keep asking questions, reading the posts and you'll get the

information you need.

This group has a live chat every other Thursday night by phone. We get

reminders on line .

We do not have a chat room. If you go on-line and Google IPF be careful

what you read. Some is way off

and some is wrong. This group of people have the right information

because we're living with PF in all its 200 forms.

Sorry you;'ve had to find us but thankful that you did. You will find

support here.

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

Noreen ONeil wrote:

Thanks Steve...this is all new to me. When I went into my mail

tonight I had 78 messages. Is there a support area to go to that

doesn't got through e-mail? Like a chat room? It seems all of you

know about IPF and are being treated. I know nothing yet except that I

have it and will have at least one more PFT before my doc says much of

anything. I feel like I'm in limbo and it's very frustrating. I don't

even kn ow what to expect for the future or how to plan it. I know I

sound pretty whiny. I'm a very positive person when I know what I'm

dealing with. thanks for the welcome

-----

Original Message ----

From: STEPHEN R WILSON <svwilson (AT) msn (DOT) com>

To: Breathe-Support

Sent: Friday, August 22, 2008 10:35:55 PM

Subject: RE: hi

Noreen, Welcome to this support group. You will find plenty of

friends and listeners here who will help you with understanding how to

best cope with this dx. good luck and talk again.

Steve 60 from Buckley WA

IPF 2006

From: Noreen

ONeil <noreen.oneil@ yahoo.com>

Reply-To: Breathe-Support@ yahoogroups. com

To: Breathe-Support@ yahoogroups. com

Subject: hi

Date: Fri, 22 Aug 2008 20:00:56 -0700 (PDT)

I've recently been dx'd with IPF and know almost nothing about it.

Have had 2 PFT's done and am waiting to do a 3rd. Haven't received

much info from my doc as he is waiting to see how things improve with

my quitting smoking...quit 1/1/08! He wants to put off doing a biopsy

as I also have multiple sclerosis and diabetes. But in the meantime I

feel hung up with no info and lost in space. Would love to have

friends who will help me find myself again and who I can help in

anyway. Looking forward to meeting some.

noreen

No virus found in this incoming message.

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

Version: 8.0.138 / Virus Database: 270.6.7/1629 - Release Date: 8/23/2008 1:16 PM

[Guest guest]

http://health.groups.yahoo.com/group/Breathe-Support/messages

That link brings you to the web page where I imagine you would be more comfortable from your message.

Is your doctor a pulmonologist experienced with PF? If not, I'd recommend one at a major teaching school or an IPF center of excellence.

Not sure what the other PFT is going to do toward determining whether or not you have PF. Its initially diagnosed primarily from CT's and then any further verification of the disease or classification by bronchoscopy sometimes and VATS more often. However, the determination of whether in Interstitial Lung Disease exists is almost always made from CT.

>> Thanks Steve...this is all new to me. When I went into my mail tonight I had 78 messages. Is there a support area to go to that doesn't got through e-mail? Like a chat room? It seems all of you know about IPF and are being treated. I know nothing yet except that I have it and will have at least one more PFT before my doc says much of anything. I feel like I'm in limbo and it's very frustrating. I don't even kn ow what to expect for the future or how to plan it. I know I sound pretty whiny. I'm a very positive person when I know what I'm dealing with. thanks for the welcome> > > > hi> Date: Fri, 22 Aug 2008 20:00:56 -0700 (PDT)> > > I've recently been dx'd with IPF and know almost nothing about it. Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much info from my doc as he is waiting to see how things improve with my quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I also have multiple sclerosis and diabetes. But in the meantime I feel hung up with no info and lost in space. Would love to have friends who will help me find myself again and who I can help in anyway. Looking forward to meeting some.> noreen> > __.._,_.___ > Messages in this topic (52) Reply (via web post) | Start a new topic > Messages | Files | Photos | Database | Polls | Members | Calendar > > Change settings via the Web (Yahoo! ID required) > Change settings via email: Switch delivery to Daily Digest | Switch format to Traditional > Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe > Recent Activity> * 7> New Members> * 2> New PhotosVisit Your Group > Meditation and> Lovingkindness> A Yahoo! Group> to share and learn.> Yahoo! Health> Memory Loss> Are you at risk> for Alzheimers?> Biz Resources> Y! Small Business> Articles, tools,> forms, and more.> .>

[Guest guest]

Hey Bruce

Thanks for all the info, advice, and support. I DO trust my pul doc, though know him mainly through reputation. Have only met him 2 x. I have a definite dx of PF, emphysema, and scar tissue from pneumonia's through a CT-scan and x-rays,PFT. Doc says "moderate" on PF and emph, though emph is improving since I quit smoking Jan. 1, 2008. I use a CPAP to help keep my oxygen level up while sleeping. The Combivent is just to

help keep my lungs flexible. It sounds like I'm a beginner. Maybe that is why doc is taking things so slow. All my docs, and I have many!, have recommended swimming for all my problems and I have just worked out a great deal at the athletic club. My financial situation is not very good, depend on the government for everything so have had to learn to wheel and deal some. I havee learned to deal with having m.s., diabetes, and a few other things so know I will learn to handle this.........but having hard time right now.

Thanks again. Please keep in touch.

noreen

Re: hi

NoreenYou can do this live on the internet too. Just click on your yahoo mygroups and come here. Thats the way I do it.Now, first....no one knows when it will kill you. Even with UIP, theshortest term one, 30% live over five years. Yes, many die within 3.With other forms people live much longer. As we say, none of us haveexpiration dates stamped on our butts.As to the VATS (biopsy), I've had it, glad I did, but it is a veryinvasive surgery. They take three pieces out of your lungs and its notthe easy innocent surgery they sometimes present. Some have no problems,some have few but residual pain from it and some have more. So likeeverything, just learn what to expect and decide on your own.Now, also, before you have it, it would be good to decide what you'regoing to do different depending on the outcome. Some do Imuran

andPrednisone regardless of the form. Some don't do them period. Some useit to decide. Did they seem certain you have PF from the CT's? If so,did they express an opinion as to the form?Sorry for so many questions but trying to understand so we'll be able totalk to you intelligently. You said you're taking Combivent? What was itprescribed for? Is it helping? It's used some for PF patients but itsmore a COPD med to clear the passageways. COPD is an obstructive diseasewhile PF is restrictive and actually scars the lungs. So guess you'renot on oxygen yet and your oxygen saturation is ok?I'm glad to see your doctor a little cautious about the biopsy as manyjust do it automatically. Doesn't mean you won't do it, but nice to seea doctor who isn't on automatic.Always feel free to ask or say anything here. Ours is a very open forumwhere we ask and we express our feelings from tears to laughter

to angerto joy to fear.> >> > I've recently been dx'd with IPF and know almost nothing about> it.. Have had 2 PFT's done and am waiting to do a 3rd. Haven't> received much info from my doc as he is waiting to see how things> improve with my quitting smoking...quit 1/1/08! He wants to put off> doing a biopsy as I also have multiple sclerosis and diabetes. But in> the

meantime I feel hung up with no info and lost in space. Would love> to have friends who will help me find myself again and who I can helpin> anyway. Looking forward to meeting some.> > noreen> >>

[Guest guest]

Joyce I understand about the prednisone. I love and hate it. Sorry this monster is beating you up.I had such a hard time getting off of it.  I'm glad Jerry is gaining weight and doing well. Have you been to Orlando lately ? In April there will be a meeting of the caretakers and we sickies..We have had two gatherings. there are pictures in the photos. I wouldn't miss them for the world.Take Care of You.  Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." hi peggyi am doing ok--using 4 liters on exertion, walking the dog, etc.  had a flare up in the spring, transplant doc suggested listing, but increased prednisone to 40 and flare up went down, have been weaning pred down to 15.  Just increased to 17.5 due to weird feelings.  Think it may have been change in blood pressure meds.  Blue Cross refused to pay for what i was taking, so changed to  something else and weird symptoms started about the same time, so off of BP med for now--weird feelings went away. will see family doc sept 15ththis has been one very hot and humid summer, hard to get motivated until last couple of weeks, spent a lot of time in my garden--don't have the energy for it that I used to havebending down is a problem--makes me cough, so if i plan ahead, i bring a stool into garden when i work can't drive long distances anymore--when the tires hit the side of the road, I woke uphad a sleep study and nap study--no sleep apnea, waiting for follow-up to nap study Jerry is doing well--he's gaining weight, kidney stones are disolving, glad he changed docs noticed a lot of the same names on web site and a lot of new nameshope every one is doing okas for the new names, sorry to see them, but glad you found this support group Pink Joyce IPF 3/06  Pennslvania 

[Guest guest]

Can Duoneb be used for coughing with IPF? That's my only complaint, and if I didn't cough when cold or in humidity (after a shower) I don't think I would know that I had this disease. Jack79/IPF - UIP/dx06/05 Maine

Hi

HI! How is everyone doing today?

I just wanted to make a comment on the issue of using DuoNeb, which is prescribed for obstructive pulmonary disease.

I started using DuoNeb some years ago when I was having bad coughing. Then I started using it only if I needed it. I still do. When my allergies flair up, it really helps my breathing.

As you know, I am in the Step Trial which is coming to a close soon. At one of the PFTs this past summer, I was given 4 inhalations of albutrol. There was not a lot of difference in the breathing tests after the inhalations but just a little. There was noticeble improvement at my 6 MW. I had the albuterol when I did not know if I was on the placebo or the drug.

I will continue to use the DuoNeb if I have chest congestion and I need to get it up and out. I used it a lot when I had pneumonia in 2005.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Jack,

That would be a really good question to ask your doctor. As you may have read I was on Duoneb for several months after my diagnosis. Initially I was using it 4 times a day per my doctors instructions. I HATED it. The albuterol made me very shakey and made my heart race. I was willing to use it however if it was doing anything for me. It's primarily a bronchodilator which means all it's going to do is open up the larger breathing passages leading to our lungs. If those passages are not constricted, as they are in someone who has asthma or COPD then it's not going to do much for us.

If you have alot of mucus that you're coughing up, you could ask the doctor to try this or ask if you could nebulize with sterile saline (salt water) that would help get gunk up and out without the effects of the albuterol.

Many people have a combination of respiratory problems, IPF and emphysema or IPF and asthma and for them using DuoNeb makes sense. Or a physician may have a specific reason for prescribing DuoNeb for someone with IPF. Talk it over with your doctor and see what he/she suggests for the cough.

It sounds like you cough in very specific situations much like I do. The reaction to extreme cold is one that I share. You can solve that problem by getting your fanny down to NC. LOL

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

Hi

HI! How is everyone doing today?

I just wanted to make a comment on the issue of using DuoNeb, which is prescribed for obstructive pulmonary disease.

I started using DuoNeb some years ago when I was having bad coughing. Then I started using it only if I needed it. I still do. When my allergies flair up, it really helps my breathing.

As you know, I am in the Step Trial which is coming to a close soon. At one of the PFTs this past summer, I was given 4 inhalations of albutrol. There was not a lot of difference in the breathing tests after the inhalations but just a little. There was noticeble improvement at my 6 MW. I had the albuterol when I did not know if I was on the placebo or the drug.

I will continue to use the DuoNeb if I have chest congestion and I need to get it up and out. I used it a lot when I had pneumonia in 2005.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

I use albuterol at times three times a day. (two puffs at a time) All depends on how tight my chest is. I have two on hand right now.One has a date of 8/08 and the other 10/08 well Maybe thats why they don't cause any side effects. But I'll tell ya one thing when I need it I NEED IT. When I was first Dx it was with IPF, COPD and emphysema. The only thing ever mentioned is the IPF.. odd huh. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Jack,That would be a really good question to ask your doctor.  As you may have read I was on Duoneb for several months after my diagnosis. Initially I was using it 4 times a day per my doctors instructions. I HATED it. The albuterol made me very shakey and made my heart race. I was willing to use it however if it was doing anything for me.  It's primarily a bronchodilator which means all it's going to do is open up the larger breathing passages leading to our lungs. If those passages are not constricted, as they are in someone who has asthma or COPD then it's not going to do much for us.If you have alot of mucus that you're coughing up, you could ask the doctor to try this or ask if you could nebulize with sterile saline (salt water) that would help get gunk up and out without the effects of the albuterol. Many people have a combination of respiratory problems, IPF and emphysema or IPF and asthma and for them using DuoNeb makes sense. Or a physician may have a specific reason for prescribing DuoNeb for someone with IPF. Talk it over with your doctor and see what he/she suggests for the cough. It sounds like you cough in very specific situations much like I do. The reaction to extreme cold is one that I share. You can solve that problem by getting your fanny down to NC. LOL  Beth-ModeratorFibrotic NSIP 06/06 UCTD 06/08         HiHI!  How is everyone doing today?I just wanted to make a comment on the issue of using DuoNeb, which is prescribed for obstructive pulmonary disease.I started using DuoNeb some years ago when I was having bad coughing. Then I started using it only if I needed it. I still do.  When my allergies flair up, it really helps my breathing.As you know, I am in the Step Trial which is coming to a close soon.  At one of the PFTs this past summer, I was given 4 inhalations of albutrol.  There was not a lot of difference in the breathing tests after the inhalations but just a little.  There was noticeble improvement at my 6 MW.  I had the albuterol when I did not know if I was on the placebo or the drug. I will continue to use the DuoNeb if I have chest congestion and I need to get it up and out.  I used it a lot when I had pneumonia in 2005. Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Thanks, MB. I see this morning and will bring up the question. Jack79/IPF - UIP/dx06/05 Maine

Hi

HI! How is everyone doing today?

I just wanted to make a comment on the issue of using DuoNeb, which is prescribed for obstructive pulmonary disease.

I started using DuoNeb some years ago when I was having bad coughing. Then I started using it only if I needed it. I still do. When my allergies flair up, it really helps my breathing.

As you know, I am in the Step Trial which is coming to a close soon. At one of the PFTs this past summer, I was given 4 inhalations of albutrol. There was not a lot of difference in the breathing tests after the inhalations but just a little. There was noticeble improvement at my 6 MW. I had the albuterol when I did not know if I was on the placebo or the drug.

I will continue to use the DuoNeb if I have chest congestion and I need to get it up and out. I used it a lot when I had pneumonia in 2005.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

I want to apologize to everyone and especially Bruce for this post. I intended to email Peggy alone, not the entire board. Even emailing this to Peggy was a mistake. I had already expressed my concern about his post to Bruce and that should have ended it.

I'm sorry everyone. Please chalk it up to poor judgement and lack of oxygen to the brain.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 UCTD 06/08

"Take chances, make mistakes and get messy!"

Miss Frizzle

[Guest guest]

How about 15 degrees here in sunny Maine. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Saturday, November 22, 2008 9:24:56 AMSubject: Hi

Good morning to you too and I can beat your 39, it's 28 here! Brrrrrr

Can I ask you what in heavens name is wrong with Bruce? Telling she doesn't have pf because she has nsip....I mean what the heck is he thinking of?

Love ya!

mb

To: Breathe-Support Sent: Saturday, November 22, 2008 8:48:48 AMSubject: Re: Re: Help with PaperGood Mornin, How are you this pretty COLD day?? Bill & Sandy are outside setting up a yard sale. It's 39... NUTS

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

[Guest guest]

Jack and Beth--- STAY INSIDE.. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."