Re: Newbie thoughts

[Guest guest]

Hi Barbara!

I was thinking of you while I was making my quick trip to Boone. The weather was spectacular while I was up there. Those mountains are just so incredibly beautiful. My only problem is the first 24-48 hours that I'm up there are miserable while I adjust to the altitude. And of course this trip was only about 24 hours so I never did adjust. Oh well it was good to get up there no matter what.

I have to admit that some of the things in your post made all the little alarms in my head go off. I am concerned that your pulmo has not discussed oxygen with you at all even if you don't need it at this point. Has he done a 6 minute walk with you? Do they test your sats when you're in the office at least? The fact that he said rehab would "change nothing" while you are stating you are coughing and sob and fatigued bothers me alot. Rehab while it will not change your diagnosis, nor change the condition of your lungs can drastically improve your quality of life. A decent rehab program will teach you how to exercise safely and you will know for sure whether or not you need oxygen when active.

Many pulmonologists do not see enough pulmonary fibrosis to feel comfortable dealing with it. They just see it as an incurable disease for which nothing can be done. In your position I would seriously consider getting another opinion. Since you're not too far from Duke that would be my choice. Come down here and be evaluated at a top notch facility. Even given that you are still going to want to make sure your local pulmonologist is someone you trust to look out for your best interests. I hope I'm not being too blunt but a doctor who's not encouraging even something as simple as rehab freaks me out and reminds me of how important it is to look out for ourselves!

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

"Take chances, make mistakes and get messy!"

Miss Frizzle

To: Breathe-Support Sent: Saturday, November 8, 2008 3:02:39 PMSubject: Newbie thoughts

Hello all! I've been watching this forum for several weeks now - started just after I was diagnosed with IPF. I have to say that I love the warmth and the caring and the sharing of the group. You (we!) are a great bunch of people. Being in the just-recently- diagnosed stage, I'm not on oxygen, prednisone, or rehab. (I am blessed - I think!) I like my pulomonologist very much, but now I question how good he is. He's not talked about an oximeter, nor oxygen. I do not know my "sats". He thinks that a biopsy is not going to reveal anything worth knowing. He believes that rehab would change nothing. He did talk about Prednisone but was not encouraging (which was okay with me, as it sounds as if the side effects are very un-nice). I wonder if I'm in a very early stage of this disease, and therefore don't need oxygen or rehab, or if he just feels that nothing will help. I feel pretty good - except for the

coughing and tiredness and sob. Anyway - just venting. I think I need to go to Duke, as was suggested by Beth, for a thorough evaluation. I did call my family doctor about that, but he said to talk to the pulmonologist. Sigh. I guess I will.

[Guest guest]

Barbara/MB

MB wasn't too blunt. Fact is, there are warning signs and his

comments on rehab is a serious one. I'd go to Duke and I'd also

search locally or near locally for someone else.

>

> Hi Barbara!

> I was thinking of you while I was making my quick trip to Boone.

The weather was spectacular while I was up there. Those mountains are

just so incredibly beautiful. My only problem is the first 24-48

hours that I'm up there are miserable while I adjust to the altitude.

And of course this trip was only about 24 hours so I never did

adjust. Oh well it was good to get up there no matter what.

>

> I have to admit that some of the things in your post made all the

little alarms in my head go off. I am concerned that your pulmo has

not discussed oxygen with you at all even if you don't need it at

this point. Has he done a 6 minute walk with you? Do they test your

sats when you're in the office at least? The fact that he said rehab

would " change nothing " while you are stating you are coughing and sob

and fatigued bothers me alot. Rehab while it will not change your

diagnosis, nor change the condition of your lungs can

drastically improve your quality of life. A decent rehab program will

teach you how to exercise safely and you will know for sure whether

or not you need oxygen when active.

> Many pulmonologists do not see enough pulmonary fibrosis to feel

comfortable dealing with it. They just see it as an incurable disease

for which nothing can be done. In your position I would seriously

consider getting another opinion. Since you're not too far from Duke

that would be my choice. Come down here and be evaluated at a top

notch facility. Even given that you are still going to want to make

sure your local pulmonologist is someone you trust to look out for

your best interests. I hope I'm not being too blunt but a doctor

who's not encouraging even something as simple as rehab freaks me out

and reminds me of how important it is to look out for ourselves!

>

> Beth-Moderator

> Fibrotic NSIP 06/06 UCTD 06/08

>

> " Take chances, make mistakes and get messy! "

> Miss Frizzle

>

>

>

>

> ________________________________

>

> To: Breathe-Support

> Sent: Saturday, November 8, 2008 3:02:39 PM

> Subject: Newbie thoughts

>

>

> Hello all! I've been watching this forum for several weeks now -

> started just after I was diagnosed with IPF. I have to say that I

love

> the warmth and the caring and the sharing of the group. You (we!)

are

> a great bunch of people. Being in the just-recently- diagnosed

stage,

> I'm not on oxygen, prednisone, or rehab. (I am blessed - I think!)

I

> like my pulomonologist very much, but now I question how good he

is.

> He's not talked about an oximeter, nor oxygen. I do not know

> my " sats " . He thinks that a biopsy is not going to reveal anything

> worth knowing. He believes that rehab would change nothing. He did

> talk about Prednisone but was not encouraging (which was okay with

me,

> as it sounds as if the side effects are very un-nice). I wonder if

I'm

> in a very early stage of this disease, and therefore don't need

oxygen

> or rehab, or if he just feels that nothing will help. I feel pretty

> good - except for the coughing and tiredness and sob.

>

> Anyway - just venting. I think I need to go to Duke, as was

suggested

> by Beth, for a thorough evaluation. I did call my family

doctor

> about that, but he said to talk to the pulmonologist. Sigh. I guess

I

> will.

>

[Guest guest]

Barbara -Jewish in St. louis is excellant also. these docs and staff take very good care of their patients!! george ks/mo T 09-24-08

To: Breathe-Support Sent: Saturday, November 8, 2008 2:43:32 PMSubject: Re: Newbie thoughts

Barbara/MBMB wasn't too blunt. Fact is, there are warning signs and his comments on rehab is a serious one. I'd go to Duke and I'd also search locally or near locally for someone else. >> Hi Barbara!> I was thinking of you while I was making my quick trip to Boone. The weather was spectacular while I was up there. Those mountains are just so incredibly beautiful. My only problem is the first 24-48 hours that I'm up there are miserable while I adjust to the altitude. And of course this trip was only about 24 hours so I never did adjust. Oh well it was good to get up there no matter what.> > I have to admit that some of the things in your

post made all the little alarms in my head go off. I am concerned that your pulmo has not discussed oxygen with you at all even if you don't need it at this point. Has he done a 6 minute walk with you? Do they test your sats when you're in the office at least? The fact that he said rehab would "change nothing" while you are stating you are coughing and sob and fatigued bothers me alot. Rehab while it will not change your diagnosis, nor change the condition of your lungs can drastically improve your quality of life. A decent rehab program will teach you how to exercise safely and you will know for sure whether or not you need oxygen when active. > Many pulmonologists do not see enough pulmonary fibrosis to feel comfortable dealing with it. They just see it as an incurable disease for which nothing can be done. In your position I would seriously

consider getting another opinion. Since you're not too far from Duke that would be my choice. Come down here and be evaluated at a top notch facility. Even given that you are still going to want to make sure your local pulmonologist is someone you trust to look out for your best interests. I hope I'm not being too blunt but a doctor who's not encouraging even something as simple as rehab freaks me out and reminds me of how important it is to look out for ourselves! > > Beth-Moderator> Fibrotic NSIP 06/06 UCTD 06/08 > > "Take chances, make mistakes and get messy!"> Miss Frizzle> > > > > ____________ _________ _________ __> > To: Breathe-Support@ yahoogroups. com> Sent: Saturday, November 8, 2008 3:02:39 PM> Subject: Newbie thoughts> > > Hello all! I've been watching this forum for several weeks now - > started just after I was diagnosed with IPF. I have to say that I love > the warmth and the caring and the sharing of the group. You (we!) are > a great bunch of people. Being in the just-recently- diagnosed stage, > I'm not on oxygen, prednisone, or rehab. (I am blessed - I think!) I > like my pulomonologist very much, but now I question how good he is. > He's not talked about an oximeter, nor oxygen. I do not know > my "sats". He thinks that a biopsy is not going to reveal anything > worth knowing. He believes that rehab would change nothing. He did > talk about Prednisone but was not

encouraging (which was okay with me, > as it sounds as if the side effects are very un-nice). I wonder if I'm > in a very early stage of this disease, and therefore don't need oxygen > or rehab, or if he just feels that nothing will help. I feel pretty > good - except for the coughing and tiredness and sob. > > Anyway - just venting. I think I need to go to Duke, as was suggested > by Beth, for a thorough evaluation. I did call my family doctor > about that, but he said to talk to the pulmonologist. Sigh. I guess I > will.>

[Guest guest]

Barbara by all means get into a rehab program somewhere!! It will help stay in shape!! ks/mo t 09-24-08

To: Breathe-Support Sent: Saturday, November 8, 2008 2:02:39 PMSubject: Newbie thoughts

Hello all! I've been watching this forum for several weeks now - started just after I was diagnosed with IPF. I have to say that I love the warmth and the caring and the sharing of the group. You (we!) are a great bunch of people. Being in the just-recently- diagnosed stage, I'm not on oxygen, prednisone, or rehab. (I am blessed - I think!) I like my pulomonologist very much, but now I question how good he is. He's not talked about an oximeter, nor oxygen. I do not know my "sats". He thinks that a biopsy is not going to reveal anything worth knowing. He believes that rehab would change nothing. He did talk about Prednisone but was not encouraging (which was okay with me, as it sounds as if the side effects are very un-nice). I wonder if I'm in a very early stage of this disease, and therefore don't need oxygen or rehab, or if he just feels that nothing will help. I feel pretty good - except for the

coughing and tiredness and sob. Anyway - just venting. I think I need to go to Duke, as was suggested by Beth, for a thorough evaluation. I did call my family doctor about that, but he said to talk to the pulmonologist. Sigh. I guess I will.

[Guest guest]

Thank you , Bruce and Beth. I will get working on this on Monday. I appreciate your insights; it helps to know there are others who have blazed a trail.

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Saturday, November 8, 2008 4:24:18 PMSubject: Re: Newbie thoughts

Barbara by all means get into a rehab program somewhere!! It will help stay in shape!! ks/mo t 09-24-08

From: Barbara <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, November 8, 2008 2:02:39 PMSubject: Newbie thoughts

Hello all! I've been watching this forum for several weeks now - started just after I was diagnosed with IPF. I have to say that I love the warmth and the caring and the sharing of the group. You (we!) are a great bunch of people. Being in the just-recently- diagnosed stage, I'm not on oxygen, prednisone, or rehab. (I am blessed - I think!) I like my pulomonologist very much, but now I question how good he is. He's not talked about an oximeter, nor oxygen. I do not know my "sats". He thinks that a biopsy is not going to reveal anything worth knowing. He believes that rehab would change nothing. He did talk about Prednisone but was not encouraging (which was okay with me, as it sounds as if the side effects are very un-nice). I wonder if I'm in a very early stage of this disease, and therefore don't need oxygen or rehab, or if he just feels that nothing will help. I feel pretty good - except for the

coughing and tiredness and sob. Anyway - just venting. I think I need to go to Duke, as was suggested by Beth, for a thorough evaluation. I did call my family doctor about that, but he said to talk to the pulmonologist. Sigh. I guess I will.

[Guest guest]

Hi Barbara!

I was diagnosed in 1998 with IPF. I go to a supervised exercise class at the wellness center that is owned by the local hospital. I am monitored while I exercise and they provide oxygen for me ( as I can save mine) There is no pulmonary rehab near my town so I have tried to increase my stamina on my own. Beth & Leanne have given me some good ideas. Because I have a pulse oximeter, I can check my saturations and know the intensity I need to achieve. (and I turn up the oxygen).

I have learned soooo much from everyone on this board and I know you will, too!

Welcome!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Hello all! I've been watching this forum for several weeks now - > started just after I was diagnosed with IPF. I have to say that I love > the warmth and the caring and the sharing of the group. You (we!) are > a great bunch of people. Being in the just-recently-diagnosed stage, > I'm not on oxygen, prednisone, or rehab. (I am blessed - I think!) I > like my pulomonologist very much, but now I question how good he is. > He's not talked about an oximeter, nor oxygen. I do not know > my "sats". He thinks that a biopsy is not going to reveal anything > worth knowing. He believes that rehab would change nothing. He did > talk about Prednisone but was not encouraging (which was okay with me, > as it sounds as if the side effects are very un-nice). I wonder if I'm > in a very early stage of this disease, and therefore don't need oxygen > or rehab, or if he just feels that nothing will help. I feel pretty > good - except for the coughing and tiredness and sob. > > Anyway - just venting. I think I need to go to Duke, as was suggested > by Beth, for a thorough evaluation. I did call my family doctor > about that, but he said to talk to the pulmonologist. Sigh. I guess I > will.>

[Guest guest]

Barbara

hi, and welcome aboard.

have to agree with bruce/mary beth.

when i read what transpired with your pulmonologist i was horrified.

I deal alot with docs in a another capacity not just a pt. and some

just don't get it or embarrassed that they don't know alot about

the disease. i was OFFICIALLY diagnosed 06. but it showed up on

chest xray in '99, and it dropped between the cracks no further

testing etc till i had enough... with my shortness of breath and

doing things i loved to do..BUSH GARDENS in VA was the straw that

broke this camels back. I told my PCPhysician that i wanted to see a

pulomonologist.Had to do a stress test to rule out my heart; which i

already knew it was not, My pulmonolisist Of course, as i told him

he was to make me better, increase my quality of life the past

couple weeks. You need to have someone you totally trust and i am

lucky m gu told me he will be with me through everything, physical,

mental and even spiritually. I do trust him, except he is like a

son to me. We can talk about anything and EVERYTHING( even jokes

about revatio)...

You need you MD to tell you exactly what is going on, and you need

testing. HE needs to be accountable. Bottom line tell him to block

time out for you and show you your xry/CAT scan explain it to you

thouroughly and what is the plan. take care and blessings on

MONDAY. patti

>

> Hello all! I've been watching this forum for several weeks now -

> started just after I was diagnosed with IPF. I have to say that I

love

> the warmth and the caring and the sharing of the group. You (we!)

are

> a great bunch of people. Being in the just-recently-diagnosed

stage,

> I'm not on oxygen, prednisone, or rehab. (I am blessed - I

think!) I

> like my pulomonologist very much, but now I question how good he

is.

> He's not talked about an oximeter, nor oxygen. I do not know

> my " sats " . He thinks that a biopsy is not going to reveal

anything

> worth knowing. He believes that rehab would change nothing. He

did

> talk about Prednisone but was not encouraging (which was okay with

me,

> as it sounds as if the side effects are very un-nice). I wonder

if I'm

> in a very early stage of this disease, and therefore don't need

oxygen

> or rehab, or if he just feels that nothing will help. I feel

pretty

> good - except for the coughing and tiredness and sob.

>

> Anyway - just venting. I think I need to go to Duke, as was

suggested

> by Beth, for a thorough evaluation. I did call my family

doctor

> about that, but he said to talk to the pulmonologist. Sigh. I

guess I

> will.

>

[Guest guest]

you do need to go to a pulmonologist who "specializes" in interstitial lung diseases

March--the pulmonologist who diagnosed me said that there was nothing he could do for me

he suggested going to Penn or Temple where there are specialized lung departments

so I went to Penn

my pulmo talked about a lung biopsy when i first met him, but decided it wasn't really necessary--phew!!! What a relief!!!

the way he explained it at the time made sense, and i still think it makes sense

April--he did recommend pulmonary rehab right away and prescribed a low dose of prednisone--that made a big difference, after two weeks of prednisone, things calmed down a lot--

he also referred me to the transplant department just in case there is need down the road

July--the 3 day transplant evaluation was done

at that time, my lungs were too healthy, and i was not ruled out as a potential candidate

I am "on the list to be Listed"

summer -- rehab suggested o2 while at rehab

september --pulmonary suggested o2 at home for exertion--eventually I went 24/7--my body told me when to increase the frequency and eventually, the lpm

no one ever suggested an oximeter, i just got that on my ownPink Joyce IPF 3/06 Pennsylvania

Subject: Re: Newbie thoughtsTo: Breathe-Support Date: Saturday, November 8, 2008, 9:05 PM

Barbarahi, and welcome aboard.have to agree with bruce/mary beth.when i read what transpired with your pulmonologist i was horrified. I deal alot with docs in a another capacity not just a pt. and some just don't get it or embarrassed that they don't know alot about the disease. i was OFFICIALLY diagnosed 06. but it showed up on chest xray in '99, and it dropped between the cracks no further testing etc till i had enough... with my shortness of breath and doing things i loved to do..BUSH GARDENS in VA was the straw that broke this camels back. I told my PCPhysician that i wanted to see a pulomonologist. Had to do a stress test to rule out my heart; which i already knew it was not, My pulmonolisist Of course, as i told him he was to make me better, increase my quality of life the past couple weeks. You need to have someone you totally trust and i am lucky m gu told me he will be with me

through everything, physical, mental and even spiritually. I do trust him, except he is like a son to me. We can talk about anything and EVERYTHING( even jokes about revatio)...You need you MD to tell you exactly what is going on, and you need testing. HE needs to be accountable. Bottom line tell him to block time out for you and show you your xry/CAT scan explain it to you thouroughly and what is the plan. take care and blessings on MONDAY. patti>> Hello all! I've been watching this forum for several weeks now - > started just after I was diagnosed with IPF. I have to say that I love > the warmth and the caring and the sharing of the group. You (we!) are > a great bunch of people. Being in the just-recently-

diagnosed stage, > I'm not on oxygen, prednisone, or rehab. (I am blessed - I think!) I > like my pulomonologist very much, but now I question how good he is. > He's not talked about an oximeter, nor oxygen. I do not know > my "sats". He thinks that a biopsy is not going to reveal anything > worth knowing. He believes that rehab would change nothing. He did > talk about Prednisone but was not encouraging (which was okay with me, > as it sounds as if the side effects are very un-nice). I wonder if I'm > in a very early stage of this disease, and therefore don't need oxygen > or rehab, or if he just feels that nothing will help. I feel pretty > good - except for the coughing and tiredness and sob. > > Anyway - just venting. I think I need to go to Duke, as was suggested > by Beth, for a thorough evaluation. I did call my

family doctor > about that, but he said to talk to the pulmonologist. Sigh. I guess I > will.>

[Guest guest]

Barbara ... I don't think I am impressed with your Dr. Do find a good pulmonologist and get the Pulmonary Function Tests done. There are quite a few, none painful, just breathing mostly.

Buy yourself an oximeter on www.portablenebs.com. $65 and FDA approved. Many of us, including me have one (the yellow one) and it works just fine.

There will be one way you can know where you are. Keep the o2 in your blood at LEAST 90. Don't fall below....if you do you need o2. Request a script from Dr.

You'll learn lots of good stuff here...

Keep on keepin' on.

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

Newbie thoughts

Hello all! I've been watching this forum for several weeks now - started just after I was diagnosed with IPF. I have to say that I love the warmth and the caring and the sharing of the group. You (we!) are a great bunch of people. Being in the just-recently-diagnosed stage, I'm not on oxygen, prednisone, or rehab. (I am blessed - I think!) I like my pulomonologist very much, but now I question how good he is. He's not talked about an oximeter, nor oxygen. I do not know my "sats". He thinks that a biopsy is not going to reveal anything worth knowing. He believes that rehab would change nothing. He did talk about Prednisone but was not encouraging (which was okay with me, as it sounds as if the side effects are very un-nice). I wonder if I'm in a very early stage of this disease, and therefore don't need oxygen or rehab, or if he just feels that nothing will help. I feel pretty good - except for the coughing and tiredness and sob. Anyway - just venting. I think I need to go to Duke, as was suggested by Beth, for a thorough evaluation. I did call my family doctor about that, but he said to talk to the pulmonologist. Sigh. I guess I will.

[Guest guest]

HI Barbara..WELCOME....you must be in a bit of a whirl..we all remember those early days well. I just want to share some feedback on Pulmonary Rehab with you.

When I was first diagnosed I was totally in the dark about how much activity I could do. Since I'd been ill with a Chest Infection just prior to my diagnosis I was advised to do very little!

It's VERY easy to do one of two things after initial diagnosis..go into DENIAL & start exerising madly as if to tell oneself that 'all is well REALLY' OR BECOME EXERCISE PHOBIC....since I knew the harm that low O2 levels could cause to major organs AND I'd been told to do very little I became the latter.

Luckily for me I saw a flyer in my Doc's Waiting Room about Pul Rehab & I asked my GP (General Practitioner) about it..he rang the Rehab Nurse for me & got it all set up (BUT he waould NEVER have suggested it himself!)

Well I've never looked back since.....under her care & with the Physio also in attendance I learnt how to become more active again SAFELY!

Listen up good to the next bit: the stronger & fitter * leaner your large muscles are the LESS O2 they need to work!

It's THAT Simple.....fitter & leaner means I can last longer before I need to go on to supplemebtary O2.....fitter & leaner means once I'm on O2 I'll stay at lower levels for longer......

Fitter & Leaner will help me LIVE LONGER...it's that simple......

It won't CURE me or stop my lungs scarring BUT it will help me make much better use of the Oxygen I've got to play with!

Now I've built up my program so that I excercise in one form or another Evry single day.....today I've just come back from my first DEEP WATER RUNNING Session, under the supervision of an Olympic Triathalon Athlete who's running a program at our local pool. I explained my situation to her... she's put me in her regular class & has me do stuff at my own pace. She times us all, puts in 'Recovery breaks' & checks our vital signs. I feel so good joining in with REGULAR folk! I KEPT UP... I feel FANTASTIC.... & I feel SAFE!

So, I've cleaned up my diet & improved my activity levels MAJORLY....I've been stable for over a year now, don't take any meds for the PF...I don't kid myself about the future but that will take care of itself.

Meanwhile I'm doing everything I can to meet the Challenge HEAD ON!

My Pulmonary Rehab Nurse is STILL my main Health Support person & she meets with a mob of us with various Chronic Lung Diseases every single month & checks our Sats before we have a meeting with regular Guest Speakers & general support of each other. Some of us meet up every single Friday at a local Park to walk together & have a chat! I'm the only person there with PF but it doesn't matter...we're all in the same boat!

Reach out...don't let your Dr keep you away from something that could do you a whole lot of GOOD! Insist that he organise to let you have a go!

I call it the 'Honeymoon' Phase...hang onto it for as long as you darn well can!

Cheers & Good Luck,

in Oz (Australia)

>> Hello all! I've been watching this forum for several weeks now - > started just after I was diagnosed with IPF. I have to say that I love > the warmth and the caring and the sharing of the group. You (we!) are > a great bunch of people. Being in the just-recently-diagnosed stage, > I'm not on oxygen, prednisone, or rehab. (I am blessed - I think!) I > like my pulomonologist very much, but now I question how good he is. > He's not talked about an oximeter, nor oxygen. I do not know > my "sats". He thinks that a biopsy is not going to reveal anything > worth knowing. He believes that rehab would change nothing. He did > talk about Prednisone but was not encouraging (which was okay with me, > as it sounds as if the side effects are very un-nice). I wonder if I'm > in a very early stage of this disease, and therefore don't need oxygen > or rehab, or if he just feels that nothing will help. I feel pretty > good - except for the coughing and tiredness and sob. > > Anyway - just venting. I think I need to go to Duke, as was suggested > by Beth, for a thorough evaluation. I did call my family doctor > about that, but he said to talk to the pulmonologist. Sigh. I guess I > will.>

[Guest guest]

Barbara/

This applies at all stages too even though the nature of the rehab

changes. I remember Gwynne was doing laps in her house at very slow pace

and on 15 lpm until shortly before her transplant. I believe that her

condition physically (other than lungs) played a role in her successful

transplant and I know without question it played a role in her

post-transplant recovery.

I ignored all the calls to exercise most of my life. Made excuses. Said

i'm doing fine as I am. But shortly after diagnosis I started. I use my

treadmill and I do breathing exercises. Do they help? Absolutely. I have

had to go five days in a row without exercise twice for some medical

tests. Both times I could tell that I lost a little bit and took me

several days to get back where I was.

> >

> > Hello all! I've been watching this forum for several weeks now -

> > started just after I was diagnosed with IPF. I have to say that I

love

> > the warmth and the caring and the sharing of the group. You (we!)

are

> > a great bunch of people. Being in the just-recently-diagnosed stage,

> > I'm not on oxygen, prednisone, or rehab. (I am blessed - I think!) I

> > like my pulomonologist very much, but now I question how good he is.

> > He's not talked about an oximeter, nor oxygen. I do not know

> > my " sats " . He thinks that a biopsy is not going to reveal anything

> > worth knowing. He believes that rehab would change nothing. He did

> > talk about Prednisone but was not encouraging (which was okay with

me,

> > as it sounds as if the side effects are very un-nice). I wonder if

I'm

> > in a very early stage of this disease, and therefore don't need

oxygen

> > or rehab, or if he just feels that nothing will help. I feel pretty

> > good - except for the coughing and tiredness and sob.

> >

> > Anyway - just venting. I think I need to go to Duke, as was

suggested

> > by Beth, for a thorough evaluation. I did call my family doctor

> > about that, but he said to talk to the pulmonologist. Sigh. I guess

I

> > will.

> >

>