new to group

[Guest guest]

Hi, Vonnie: I am new to this group also and it has already helped me quite a bit. I was diagnosed with IPF about five or six months ago and I too have sooooo many questions. Like why is IPF worse than PF? Anyone know?

Barb

It's my understanding that IPF is from unknown origin...PF is a bi~product of an auto~immune disease such as Lupus. At least that is the way I interpreted the explaination. kiss kiss

~Ginger~

[Guest guest]

Hi, Vonnie: I am new to this group also and it has already helped me quite a bit. I was diagnosed with IPF about five or six months ago and I too have sooooo many questions. Like why is IPF worse than PF? Anyone know? Barblittletorimommydrew wrote: Hi to everyone, so happy to have found this group! I have been reading what you all wrote. I too have so many questions. I was told about 7months ago I had IPF. At first the Dr. did nothing. I had to insist.He sent a respitory therapist who new more than him. God bless you all. I'm on ox at night. My name is yvonne or some call me vonny. Looking forward to chating with you. bye for now

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[Guest guest]

Thanks again Ginger, I am so glad you were on here tonight. I don't believe in coincidences. Maybe it was meant to be. BarbTongueDancer2U@... wrote: Hi, Vonnie: I am new to this group also and it has already helped me quite a bit. I was diagnosed with IPF about five or six months ago and I too have sooooo many questions. Like why is IPF worse than PF? Anyone know? Barb It's my understanding that IPF is from unknown origin...PF is a bi~product of an auto~immune disease such as Lupus. At least that is the way I interpreted the explaination. kiss kiss ~Ginger~

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[Guest guest]

Hi Vonnie ;

In response to your question, this is the best that I can figure out. The difference in the diseases is based on the results of the biopsies and thusly the prognosis. IPF is generally associated with the honeycombing of the lungs and has a poor prognosis. The IP is idio-pathic or unknown path or origin. In my case the biopsy showed honeycombing and the other good stuff which led to the initial diagnosis of IPF. But I also have enlarged lymphnodes so they changed the diagnosis to PF. But that really didn't seem to fit my situation so they changed the diagnosis to NSIP, non specific interstitial pneumonia, in other words " We don't know". There are actually quite a few different types of PF. DIP, BOOP, RB/ILD,etc,. The Pulmonary Fibrosis Foundation has a nice little handbook that briefly explains each of the diseases. I'm sure Leann (sp) co;uld get you a copy if you asked real nice and sent lots of cookies. Hope this helps.

Gordon

Re: New to group

Hi, Vonnie: I am new to this group also and it has already helped me quite a bit. I was diagnosed with IPF about five or six months ago and I too have sooooo many questions. Like why is IPF worse than PF? Anyone know?

Barblittletorimommydrew wrote:

Hi to everyone, so happy to have found this group! I have been reading what you all wrote. I too have so many questions. I was told about 7months ago I had IPF. At first the Dr. did nothing. I had to insist.He sent a respitory therapist who new more than him. God bless you all. I'm on ox at night. My name is yvonne or some call me vonny. Looking forward to chating with you. bye for now

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[Guest guest]

Vonnie,

You deserve better care than just being SENT HOME. If it is possible for you with insurance, etc. .... you should get a consult with another doc. "At first the Dr. did nothing. I had to insist" Hopefully, your insistence paid off.

I know this may sound strange.....But, one day out of sheer terror and frustration, I sat down with my list of pulmonary doctors and prayed for help. (By this time, I had been misdagnosed and mistreated for quite awhile) I chose a doc I had never heard of and made an appointment. He turned out to be the director of the Respiratory Department of a major hospital here. He got agressive right away. He sent me to a surgeon for open lung biopsy (some scraping,etc went along with that) and a new Rheumatologist. These docs have saved my life. That was 1997. I have fought this disease and have educated myself to the best of my ability to know how to fight. With God's help, I believe I have had years that I would not have had.

I have learned so much already in the last few weeks on this website. Stay tuned and let us know how you are doing.

WE CARE!

Joyce

>> Hi to everyone, so happy to have found this group! I have been reading > what you all wrote. I too have so many questions. I was told about > 7months ago I had IPF. At first the Dr. did nothing. I had to insist.He > sent a respitory therapist who new more than him. God bless you all. > I'm on ox at night. My name is yvonne or some call me vonny. Looking > forward to chating with you. bye for now>

[Guest guest]

Hi guys just thought I would drop a note. In simple terms I think IPF

is worsse than PF because they don't know the cause. (idiopathic of

course means " of unknown origin " ) An example would be poison ivy -

you touch it and get a rash but if you stop touching it you can make

the rash go away. If they don't know where it comes from they have a

harder time stopping it. Hope that helps. Tom

> Hi to everyone, so happy to have found this group! I have been

reading

> what you all wrote. I too have so many questions. I was told about

> 7months ago I had IPF. At first the Dr. did nothing. I had to

insist.He

> sent a respitory therapist who new more than him. God bless you

all.

> I'm on ox at night. My name is yvonne or some call me vonny.

Looking

> forward to chating with you. bye for now

>

>

>

>

>

>

>

>

>

[Guest guest]

portia49...you will find a different story w/similarities from each of us. We have younger and older here. My name is Sher, I was confirmed ipf May 06. I too noticed sob and thought it was due to being overweight and out of shape. My dx began with a questionable chest x-ray (for an unrelated reason). Then came another cxr then Cscan..two more. Then a pulmonary workup ordered by my pcp. THEN on to a Pulmonologist who confirmed. I too have clubbing of fingers (and purple nail beds) that I noticed but had no idea the cause. I am on NAC and doing rehab 2x wk. No other meds. 02 was ordered today. I can only share my story...there are so many here who are much more knowledgeable. I'm sorry to hear of your family members. You'll love this board. Lots of love, patience, and honesty. Hang with us. Sher ipf 5-06

New to Group

I have a question for anyone in the group...How did your PF start? How old were most of you and did you feeling SOB initiate your going to the Pulmonologist? The reason I ask is I am 38 years and recently semi diagnosed with PF. My brother died at age 42 recently and another has been diagnosed with severe RA and PF and currently only has 50% function in 1 lung. I had a baby 3 months ago and during my pregnancy began having clubbing of my fingers and some SOB that I just associated with the pregnancy. After my c-section had a really bad episode of SOB. Went to my OB and was told I was having an allergic reaction to the Percocet I was taking for post-partem pain. Later my husband convinced me to see a pulmonologist because of my family hx and was diagnosed with ILD. I admit that I do have little difficult taking in deep breaths but for the most part I feel great!!! I walk most every day. Occasionally take the stairs and really lead a normal life. The Pulm Team is excited about my seeking treatment so early in the disease. They have never had anyone come to them for treatment until the disease is far advanced. I have not had a lung biopsy yet nor am I on any meds other than NAC and other antioxidant vitamins. Does anyone recommend the lung biopsy? Each PF test I have taken has been better than the last and will have a diffusion test in 3 weeks to see if there is any improvement. My Cat Scan shows ?PF in the lower bases of the lungs and little scarring. Any words of advice?

[Guest guest]

Portia,

You are so smart to seek early treatment. You may be totally clear and may be showing scarring from old pneumonia, etc. But...with a sibling having autoimmune disorder, this makes you genetically predisposed to the same thing.

I had coughing and pain in ribs first. Then shortness of breath and fatigue. I was misdiagnosed several times. The first time they defined fibrosis was in biopsy. I had a really hard time with biopsy, but having it saved my life. My fibrosis has moved slowly because it was related to Lupus and they were able to treat that somewhat. I am now nine years out from biopsy.

I hope you do not get a fibrosis diagnosis, but you are so young and there are so many promising treatments on the horizon. Don't despair. Worry makes you sick! You are doing all the right things. So many people ignore symptoms because they are so busy and hope that they will go away.

Let us know what the diagnosis is? Enjoy that sweet baby!

Hugs,

Joyce PF 1997

>> I have a question for anyone in the group...How did your PF start? > How old were most of you and did you feeling SOB initiate your going > to the Pulmonologist? The reason I ask is I am 38 years and > recently semi diagnosed with PF. My brother died at age 42 recently > and another has been diagnosed with severe RA and PF and currently > only has 50% function in 1 lung. I had a baby 3 months ago and > during my pregnancy began having clubbing of my fingers and some SOB > that I just associated with the pregnancy. After my c-section had a > really bad episode of SOB. Went to my OB and was told I was having > an allergic reaction to the Percocet I was taking for post-partem > pain. Later my husband convinced me to see a pulmonologist because > of my family hx and was diagnosed with ILD. I admit that I do have > little difficult taking in deep breaths but for the most part I feel > great!!! I walk most every day. Occasionally take the stairs and > really lead a normal life. The Pulm Team is excited about my > seeking treatment so early in the disease. They have never had > anyone come to them for treatment until the disease is far > advanced. I have not had a lung biopsy yet nor am I on any meds > other than NAC and other antioxidant vitamins. Does anyone > recommend the lung biopsy? Each PF test I have taken has been > better than the last and will have a diffusion test in 3 weeks to > see if there is any improvement. My Cat Scan shows ?PF in the lower > bases of the lungs and little scarring. Any words of advice?>

[Guest guest]

Hi " Portia " I was diagnosed at 34 and went to the doc because doing

regular chores (mowing the lawn, etc) was making me short of breath.

I had the lung biopsy but only after my lung function test went down.

I am now at 48% lung volume. They are getting better at diagnosing

with cat scans but the biopsy is the be all to end all method. My doc

would not have had me do it if my lung tests were improving. That

said I am still not on O2 and I get along pretty well (I still work

but I don't like stairs and I don't do yard work anymore.) Feel free

to ask any questions there are a lot of experienced and informed

people here. Tom ipf 01-06

>

> I have a question for anyone in the group...How did your PF start?

> How old were most of you and did you feeling SOB initiate your

going

> to the Pulmonologist? The reason I ask is I am 38 years and

> recently semi diagnosed with PF. My brother died at age 42

recently

> and another has been diagnosed with severe RA and PF and currently

> only has 50% function in 1 lung. I had a baby 3 months ago and

> during my pregnancy began having clubbing of my fingers and some

SOB

> that I just associated with the pregnancy. After my c-section had

a

> really bad episode of SOB. Went to my OB and was told I was having

> an allergic reaction to the Percocet I was taking for post-partem

> pain. Later my husband convinced me to see a pulmonologist because

> of my family hx and was diagnosed with ILD. I admit that I do have

> little difficult taking in deep breaths but for the most part I

feel

> great!!! I walk most every day. Occasionally take the stairs and

> really lead a normal life. The Pulm Team is excited about my

> seeking treatment so early in the disease. They have never had

> anyone come to them for treatment until the disease is far

> advanced. I have not had a lung biopsy yet nor am I on any meds

> other than NAC and other antioxidant vitamins. Does anyone

> recommend the lung biopsy? Each PF test I have taken has been

> better than the last and will have a diffusion test in 3 weeks to

> see if there is any improvement. My Cat Scan shows ?PF in the

lower

> bases of the lungs and little scarring. Any words of advice?

>

[Guest guest]

Tom,

Great to hear from you. When you say you have 48%

lung vol, does that mean you are only functioning at

48%? I am finding it hard to accept that this disease

is going to move so quickly through my lungs. I do

have some shortness of breath with exertion but can

easily walk 3 miles a day. What medications are you

taking? I am only taking NAC and it seems to be

drying me out really bad. My throat/windpipe is sore

constantly-relieved with advil. Do you have the same

problems? What have docs told you about your

prognosis? I pray and hope that if I must have this

disease then allow me to live with what lung functions

I have now for the next 50 years. I will be satisfied

with that hope.

Portia

--- topamo wrote:

> Hi " Portia " I was diagnosed at 34 and went to the

> doc because doing

> regular chores (mowing the lawn, etc) was making me

> short of breath.

> I had the lung biopsy but only after my lung

> function test went down.

> I am now at 48% lung volume. They are getting better

> at diagnosing

> with cat scans but the biopsy is the be all to end

> all method. My doc

> would not have had me do it if my lung tests were

> improving. That

> said I am still not on O2 and I get along pretty

> well (I still work

> but I don't like stairs and I don't do yard work

> anymore.) Feel free

> to ask any questions there are a lot of experienced

> and informed

> people here. Tom ipf 01-06

>

>

>

> >

> > I have a question for anyone in the group...How

> did your PF start?

> > How old were most of you and did you feeling SOB

> initiate your

> going

> > to the Pulmonologist? The reason I ask is I am 38

> years and

> > recently semi diagnosed with PF. My brother died

> at age 42

> recently

> > and another has been diagnosed with severe RA and

> PF and currently

> > only has 50% function in 1 lung. I had a baby 3

> months ago and

> > during my pregnancy began having clubbing of my

> fingers and some

> SOB

> > that I just associated with the pregnancy. After

> my c-section had

> a

> > really bad episode of SOB. Went to my OB and was

> told I was having

> > an allergic reaction to the Percocet I was taking

> for post-partem

> > pain. Later my husband convinced me to see a

> pulmonologist because

> > of my family hx and was diagnosed with ILD. I

> admit that I do have

> > little difficult taking in deep breaths but for

> the most part I

> feel

> > great!!! I walk most every day. Occasionally

> take the stairs and

> > really lead a normal life. The Pulm Team is

> excited about my

> > seeking treatment so early in the disease. They

> have never had

> > anyone come to them for treatment until the

> disease is far

> > advanced. I have not had a lung biopsy yet nor am

> I on any meds

> > other than NAC and other antioxidant vitamins.

> Does anyone

> > recommend the lung biopsy? Each PF test I have

> taken has been

> > better than the last and will have a diffusion

> test in 3 weeks to

> > see if there is any improvement. My Cat Scan

> shows ?PF in the

> lower

> > bases of the lungs and little scarring. Any words

> of advice?

> >

>

>

>

>

>

__________________________________________________

[Guest guest]

Dear Portia,

You ask good questions. My illness started very silently. I noticed at

the gym that I couldn't do the treadmill quite as well as before, which

I attributed to age. But when I started to get winded climbing the

stairs I knew I should see the doctor. As happens, he never notified me

of the x-ray report, which showed fibrosis. Fortunately, when I went

to the allergist, she pulled the report and ordered a CT scan. The CT

scan report came back as normal, which didn't make any sense to me. So

I took the films to another radiologist who pointed out the typical

findings of interstitial pneumonia. Then for a couple of months I

grieved and complained and lost sleep and felt sorry for myself and my

family because I had been given a death sentence. Eventually, I had a

lung biopsy. The local pathologist diagnosed it as idiopathic pulmonary

fibrosis, the more common kind of pulmonary fibrosis. Then a couple of

days later my pulmonologist told me the report from the Mayo clinic

hotshot pathologist diagnosed non-specific interstitial pneumonitis,

which is supposed to have a better prognosis. With that I've felt ever

since that I've been given some extra plays on the pinball machine to enjoy.

I really recommend the biopsy. I really wanted to know for sure what I

have. There are so many different kinds of fibrosis, all with different

causes and prognosis. Another option is to get a second opinion from

the nearest ivory tower university medical center. That way you can be

pretty sure they got the diagnosis right. I don't think ILD is a very

specific diagnosis. My pulmonologist told me it was possible for the

pulmonary fibrosis to be the first sign of RA.

What is NAC?

keep your hope alive,

Portia Loveless wrote:

> Tom,

>

> Great to hear from you. When you say you have 48%

> lung vol, does that mean you are only functioning at

> 48%? I am finding it hard to accept that this disease

> is going to move so quickly through my lungs. I do

> have some shortness of breath with exertion but can

> easily walk 3 miles a day. What medications are you

> taking? I am only taking NAC and it seems to be

> drying me out really bad. My throat/windpipe is sore

> constantly-relieved with advil. Do you have the same

> problems? What have docs told you about your

> prognosis? I pray and hope that if I must have this

> disease then allow me to live with what lung functions

> I have now for the next 50 years. I will be satisfied

> with that hope.

>

> Portia

>

> --- topamo <tomandcathy99@...

> <mailto:tomandcathy99%40peoplepc.com>> wrote:

>

> > Hi " Portia " I was diagnosed at 34 and went to the

> > doc because doing

> > regular chores (mowing the lawn, etc) was making me

> > short of breath.

> > I had the lung biopsy but only after my lung

> > function test went down.

> > I am now at 48% lung volume. They are getting better

> > at diagnosing

> > with cat scans but the biopsy is the be all to end

> > all method. My doc

> > would not have had me do it if my lung tests were

> > improving. That

> > said I am still not on O2 and I get along pretty

> > well (I still work

> > but I don't like stairs and I don't do yard work

> > anymore.) Feel free

> > to ask any questions there are a lot of experienced

> > and informed

> > people here. Tom ipf 01-06

> >

> >

> >

> > >

> > > I have a question for anyone in the group...How

> > did your PF start?

> > > How old were most of you and did you feeling SOB

> > initiate your

> > going

> > > to the Pulmonologist? The reason I ask is I am 38

> > years and

> > > recently semi diagnosed with PF. My brother died

> > at age 42

> > recently

> > > and another has been diagnosed with severe RA and

> > PF and currently

> > > only has 50% function in 1 lung. I had a baby 3

> > months ago and

> > > during my pregnancy began having clubbing of my

> > fingers and some

> > SOB

> > > that I just associated with the pregnancy. After

> > my c-section had

> > a

> > > really bad episode of SOB. Went to my OB and was

> > told I was having

> > > an allergic reaction to the Percocet I was taking

> > for post-partem

> > > pain. Later my husband convinced me to see a

> > pulmonologist because

> > > of my family hx and was diagnosed with ILD. I

> > admit that I do have

> > > little difficult taking in deep breaths but for

> > the most part I

> > feel

> > > great!!! I walk most every day. Occasionally

> > take the stairs and

> > > really lead a normal life. The Pulm Team is

> > excited about my

> > > seeking treatment so early in the disease. They

> > have never had

> > > anyone come to them for treatment until the

> > disease is far

> > > advanced. I have not had a lung biopsy yet nor am

> > I on any meds

> > > other than NAC and other antioxidant vitamins.

> > Does anyone

> > > recommend the lung biopsy? Each PF test I have

> > taken has been

> > > better than the last and will have a diffusion

> > test in 3 weeks to

> > > see if there is any improvement. My Cat Scan

> > shows ?PF in the

> > lower

> > > bases of the lungs and little scarring. Any words

> > of advice?

> > >

> >

> >

> >

> >

> >

>

> __________________________________________________

>

[Guest guest]

Hello my name is sandy/oklahoma:

I have been told I have copd by one pcp. They sent me to a pulmo

doctor he has ran some test. He thinks it may be fibrosis.So I really

do not know where or what group I should be in.Your group seem so

helpful. They are treating me with

spirivia,albut,advair,clarinex,singular.Do pulmonary fibrosis take same

type of medicines. I am so confused on what I might have.any one else

been through this? I am almost 59 in a couple of days. smoked for 20

years but stoped two years ago when told I have copd or fibrosis exrays

show right lung get no air or flow into it. real white.also says

trapping upper don't know what that is either. Doctors seem to not want

to spend time to tell you any thing. also I have ask for a rehab he

says it just need to wait until they get test results back. well if you

can give me so input please do. thanks sandy/okla

[Guest guest]

Hi Sandy in Oklahoma,

Did the pulmonary doctor do a CT scan? Or a lung scan? Or a biopsy? or are they guessing? Did you do the PFT test or a walking test?

COPD is a constrictive disease. Fibrosis is a restrictive disease. I developed Bronchiectasis as my fibrosis progressed. I use inhalers and nebulizers for that. It is considered COPD. So, I fit all the descriptions, I guess.

This is a great site for learning. You can go back and scan through the posts and almost every lung disease known to mankind is covered! New treatments and trials are discussed. We are here to learn, to offer understanding and to try to help each other get through the horrors of lung disease. Of course, you are welcome.

Hugs,

Joyce PF 1997>> Hello my name is sandy/oklahoma:> I have been told I have copd by one pcp. They sent me to a pulmo> doctor he has ran some test. He thinks it may be fibrosis.So I really > do not know where or what group I should be in.Your group seem so > helpful. They are treating me with > spirivia,albut,advair,clarinex,singular.Do pulmonary fibrosis take same > type of medicines. I am so confused on what I might have.any one else > been through this? I am almost 59 in a couple of days. smoked for 20 > years but stoped two years ago when told I have copd or fibrosis exrays > show right lung get no air or flow into it. real white.also says > trapping upper don't know what that is either. Doctors seem to not want > to spend time to tell you any thing. also I have ask for a rehab he > says it just need to wait until they get test results back. well if you > can give me so input please do. thanks sandy/okla>

[Guest guest]

Welcome from me too, Sandy. I'm fairly new to the board and recently confirmed with ipf so I'm not as knowledgeable or experienced as others. I do know this is a great place to land. You'll love us. Sher ipf 5-06

Re: new to group

Hi Sandy in Oklahoma,

Did the pulmonary doctor do a CT scan? Or a lung scan? Or a biopsy? or are they guessing? Did you do the PFT test or a walking test?

COPD is a constrictive disease. Fibrosis is a restrictive disease. I developed Bronchiectasis as my fibrosis progressed. I use inhalers and nebulizers for that. It is considered COPD. So, I fit all the descriptions, I guess.

This is a great site for learning. You can go back and scan through the posts and almost every lung disease known to mankind is covered! New treatments and trials are discussed. We are here to learn, to offer understanding and to try to help each other get through the horrors of lung disease. Of course, you are welcome.

Hugs,

Joyce PF 1997>> Hello my name is sandy/oklahoma:> I have been told I have copd by one pcp. They sent me to a pulmo> doctor he has ran some test. He thinks it may be fibrosis.So I really > do not know where or what group I should be in.Your group seem so > helpful. They are treating me with > spirivia,albut,advair,clarinex,singular.Do pulmonary fibrosis take same > type of medicines. I am so confused on what I might have.any one else > been through this? I am almost 59 in a couple of days. smoked for 20 > years but stoped two years ago when told I have copd or fibrosis exrays > show right lung get no air or flow into it. real white.also says > trapping upper don't know what that is either. Doctors seem to not want > to spend time to tell you any thing. also I have ask for a rehab he > says it just need to wait until they get test results back. well if you > can give me so input please do. thanks sandy/okla>

[Guest guest]

There are so many different kinds of fibrosis

...many different kinds of fibrosis???? Thought I'd read everything there ws on this subject.

kiss kiss,

~Ginger~

IPF 9/04

[Guest guest]

I am new to this group and disease and know very little. I was diagnosed in Dec. 05. I was so upset after seeing to doc, I got a ticket on the way home. 17 miles over the speed limit. I thought coughing was a part of the disease for everbody. Let me know.Peggy wrote: Hi Sandy/ Ok., Welcome to our group. I just hate welcoming new people, but know that we are all here for you. Yes you are in the right spot. My name is Peggy, 63 years young. diagnosed in Sept. 04. with ipf. I am on oxygen. No

medications except NACthat is a supplement.. I don't have a cough as some do. (God is Good) I took prednisone for a while and used Advair. Are you bothered with thrush?? I had a fit with it. God Bless you and Comfort you...I will be praying for you...Peggy 09/04 ipf Hello my name is sandy/oklahoma:I have been told I have copd by one pcp. They sent me to a pulmodoctor he has ran some test. He thinks it may be fibrosis.So I really do not know where or what group I should be in.Your group seem so helpful. They are treating me with spirivia,albut,advair,clarinex,singular.Do pulmonary fibrosis take same type of medicines. I am so confused on what I might have.any one else been through this? I am almost 59 in a couple of days. smoked for 20 years but stoped two years ago when told I have copd or fibrosis exrays show right lung get no air or flow into it. real white.also says trapping

upper don't know what that is either. Doctors seem to not want to spend time to tell you any thing. also I have ask for a rehab he says it just need to wait until they get test results back. well if you can give me so input please do. thanks sandy/okla

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Hi , The cough is a big part of my disease. Before I was diagnosed all I did was cough. My husband kept getting on my case to get in checked which I did periodically (chest xray) but nothing really showed up until I got SOB (short of breath) and then diagnosed with pneumonia NOT. To biopsy or not to biopsy?? I did have a biopsy and I'm one of the people on this board who is definately against one. It was the hardest operation I've had so far. I was in the hospital 4 days and home 2 weeks and I didn't event have any complications. They really couldn't tell anything from my biopsy - they were confused. The pft and the HRCT told them what they needed to know. You could see the fibrosis pretty clearly on the CT. Tom's experience with the VATS was a much better one. My personal opinion is that there are a small amount of

cases where a lung biopsy is warranted, but before having any kind of surgery, do research. Learn all you can beforehand. If I knew then what I know now I would NEVER have had the surgery. Of course I didn't know they weren't going to come up with anything. Anyway, this is a great place to get your questions answered. There are a lot of very knowledgeable and compassionate people on this site. We are all in various stages of the disease and I believe we have a lot to learn from each other. God bless you. Leanne ipf 1/03 Moderator Executive Assistant and Patient Advocate Pulmonary Fibrosis Foundation wrote: I am new to this group and disease and know very little. I was diagnosed in Dec. 05. I was so upset after seeing to doc, I got a ticket on the way home. 17 miles over the speed limit. I thought coughing was a part of the disease for everbody. Let me know.Peggy wrote: Hi Sandy/ Ok., Welcome to our group. I just hate welcoming new people, but know that we are all here for you. Yes you are in the right spot. My name is Peggy, 63 years young. diagnosed in Sept. 04. with ipf. I am on

oxygen. No medications except NACthat is a supplement.. I don't have a cough as some do. (God is Good) I took prednisone for a while and used Advair. Are you bothered with thrush?? I had a fit with it. God Bless you and Comfort you...I will be praying for you...Peggy 09/04 ipf Hello my name is sandy/oklahoma:I have been told I have copd by one pcp. They sent me to a pulmodoctor he has ran some test. He thinks it may be fibrosis.So I really do not know where or what group I should be in.Your group seem so helpful. They are treating me with spirivia,albut,advair,clarinex,singular.Do pulmonary fibrosis take same type of medicines. I am so confused on what I might have.any one else been through this? I am almost 59 in a couple of days. smoked for 20 years but stoped two years ago when told I have copd or fibrosis exrays show right lung get no air or flow into it. real white.also says

trapping upper don't know what that is either. Doctors seem to not want to spend time to tell you any thing. also I have ask for a rehab he says it just need to wait until they get test results back. well if you can give me so input please do. thanks sandy/okla Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

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The diagnosos is interstatial lung disease which from what I have read means they don't know what the problem is except fibrosis. I have not filled out a profile. How do I do that? I am not very good on the computer. I have real everything I can online. My next PF test and Dr's appointment is in August.Peggy wrote: Hi E, (we have another ) Again I hate to welcome anyone to this group but Welcome. What was your diagnosis? Have you read any information on line? It can scare the

pageeeze out of you. We are here to answer any questions can. I am pretty sure you will get an answer to any question you might have. I do understand the ticket part. It puts you in a different place when you hear this kind of diagnosis.Did you fill out a profile. I ask because I can't remember who has and who hasn't we are getting so many newbies lately..Gotta hate that..God Bless you and give you peace with all the feelings you are going through. Remember you are not alone and that we are always here for you... Peggy 09/04 ipf I am new to this group and disease and know very little. I was diagnosed in Dec. 05. I was so upset after seeing to doc, I got a ticket on the way home. 17 miles over the speed limit. I thought coughing was a part of the disease for everbody. Let me know.Peggy wrote: Hi

Sandy/ Ok., Welcome to our group. I just hate welcoming new people, but know that we are all here for you. Yes you are in the right spot. My name is Peggy, 63 years young. diagnosed in Sept. 04. with ipf. I am on oxygen. No medications except NACthat is a supplement.. I don't have a cough as some do. (God is Good) I took prednisone for a while and used Advair. Are you bothered with thrush?? I had a fit with it. God Bless you and Comfort you...I will be praying for you...Peggy 09/04 ipf Hello my name is sandy/oklahoma:I have been told I have copd by one pcp. They sent me to a pulmodoctor he has ran some test. He thinks it may be fibrosis.So I really do not know where or what group I should be in.Your group seem so helpful. They are treating me with spirivia,albut,advair,clarinex,singular.Do pulmonary fibrosis take same type of medicines. I am so confused on what I might have.any

one else been through this? I am almost 59 in a couple of days. smoked for 20 years but stoped two years ago when told I have copd or fibrosis exrays show right lung get no air or flow into it. real white.also says trapping upper don't know what that is either. Doctors seem to not want to spend time to tell you any thing. also I have ask for a rehab he says it just need to wait until they get test results back. well if you can give me so input please do. thanks sandy/okla Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.