Re: Pulmonay fibrosis diagnosis-then got a lot better?

[Guest guest]

Hi and welcome!

My situation is a bit different from yours but in some ways our experiences are similar. Back in June of 06 I was hospitalized. At that time I was in congestive heart failure and was diagnosed with pulmonary fibrosis. I had a lung biopsy done during that hospitalization. During that hospitalization they told me I had fibrosis but not what type. I learned that I had NSIP after I had been discharged. That diagnosis has been confirmed several times by various doctors.

I was extremely ill when I was in the hospital. And I was told I would always been on supplementary oxygen and except in limited circumstances that is true. The only time I can get along briefly without O2 is if I'm sitting, say watching tv or knitting or reading or if I'm driving in the car. Then I can take the O2 off for a half hour or so before my sats begin to drop. However if I'm up and moving around at all I must use it or my sats drop rapidly. But the good news is I've remained stable for over two years now. The hallmark of this disease is deterioration so I'm profoundly grateful to stay exactly where I am. My PFT's are stable, volumes, spirometry and diffusions. Occasionally the numbers improve somewhat but honestly I think for me at least, it's more a matter of having the tests done on a good day or a bad day. A day when I'm tired or not, or the weather is good or not or my allergies are

bothering me or not.

My CT scans have stayed pretty much the same. By the way your first doctor is absolutely, spectacularly wrong when he told you that imflammation and fibrosis cannot exist in the same lung at the same time. They can and they do. He can have a look at my biopsy slides.

I did get better. Better in the sense that my congestive heart failure resolved when my lung disease was stablized. Better in the sense that I can do most normal activities as long as I'm using my oxygen. Better in the sense that two years down the road I'm still here when back then there was no guarantee that I would be.

I think there's alot that the average doctor doesn't know about fibrosis in all it's varieties. It is always best to be evaluated at a medical center with specialists in interstitial lung disease. The average doctor, even the average pulmonologist just does not see enough fibrosis to be able to answer our questions and concerns. This field is changing and I for one want to know that my doctor is up to date on all that's going on in the field.

I would keep living your life and taking care of yourself. You are doing well and living with and managing your disease. Someone said (I think actually this person was talking about cancer but it applies to us too) "I have pulmonary fibrosis but it doesn't have me." That's how I feel about it!

Be kind to yourself!!

Beth

Age 49 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Pulmonay fibrosis diagnosis-then got a lot better?

I got a diagnosis of pulmonary fibrosis from my doctor in December,with a prognosis of 3 months to 2 years (very optimistic). Thisresulted from an acute episode that got worse over the course of aweek before I went into the hospital. The dr. said I would never beoff oxygen. He said everything he saw in my lungs was fibrosis(honeycombing) or early fibrosis (ground glass). He did not expect meto get any better. I had the some fibrosis that was stable for a fewyears, and got slightly worse about 9 months before thehospitalization. He said no one has fibrosis and inflammation at thesame time. If I had evidence of fibrosis, the ground glass appearancemust be fibrosis in the formative stage. He has not called this"idiopathic. "This is the only medical problem I have. I am 83. My GP said my EKGlooks like the EKG of someone 25 years old.I got another opinion a few months later, and that dr. said

I hadstable pulmonary fibrosis and the ground glass appearance in my lungslooked like inflammation. He consulted with a radiologist and lookedat films over a five year course. He wants to see if I continue toimprove, and then if the improvement stops, try low-dose steroids andimuran.Over the months, I have gotten a lot better. I can take a much biggerbreath, my breathing tests have been showing slight improvement, andthe rales in my lungs aren't as loud. My energy level has improved alot. The first dr. said I can be off the ox when sitting and walkingaround my home (one level). My imporvement is more consistent withthe diagnosis made by the second dr.Has anyone ever had this experience, where initially they were toldthey would just get progressively worse, and then they got better? Ifso, did you try steroids or other treatment and did it help? Did theimprovement last? How long? Did the

ground glass appearance go awayor improve on a CAT scan? Did the ox saturation across the alveoliimprove with treatment? So far, this measurement has improved from25% to 31% without treatment. If you got better without treatment,how long did it take until the improvement stabilized?Thank you for your help. Best of health to all!

[Guest guest]

I am glad that you are doing well. Thank you for responding.

The first doctor is supposed to be the top doctor in a major US city.

The second doctor is a specialist in pulmonary fibrosis in the same city.

Did the lung disease make your heart worse? Did any doctor recommend

treatment for the NSIP? Do you have any idea what caused the lung

disease? Did the doctor tell you what happens to the inflammation if

it is not treated?

Thank you.

>

> Hi and welcome!

> My situation is a bit different from yours but in some ways our

experiences are similar. Back in June of 06 I was hospitalized. At

that time I was in congestive heart failure and was diagnosed with

pulmonary fibrosis. I had a lung biopsy done during that

hospitalization. During that hospitalization they told me I had

fibrosis but not what type. I learned that I had NSIP after I had been

discharged. That diagnosis has been confirmed several times by various

doctors.

> I was extremely ill when I was in the hospital. And I was told I

would always been on supplementary oxygen and except in

limited circumstances that is true. The only time I can get along

briefly without O2 is if I'm sitting, say watching tv or knitting or

reading or if I'm driving in the car. Then I can take the O2 off for a

half hour or so before my sats begin to drop. However if I'm up and

moving around at all I must use it or my sats drop rapidly. But the

good news is I've remained stable for over two years now. The hallmark

of this disease is deterioration so I'm profoundly grateful to stay

exactly where I am. My PFT's are stable, volumes, spirometry and

diffusions. Occasionally the numbers improve somewhat but honestly

I think for me at least, it's more a matter of having the tests done

on a good day or a bad day. A day when I'm tired or not, or the

weather is good or not or my allergies are bothering me or not.

> My CT scans have stayed pretty much the same. By the way your first

doctor is absolutely, spectacularly wrong when he told you that

imflammation and fibrosis cannot exist in the same lung at the same

time. They can and they do. He can have a look at my biopsy slides.

> I did get better. Better in the sense that my congestive heart

failure resolved when my lung disease was stablized. Better in the

sense that I can do most normal activities as long as I'm using my

oxygen. Better in the sense that two years down the road I'm still

here when back then there was no guarantee that I would be.

> I think there's alot that the average doctor doesn't know about

fibrosis in all it's varieties. It is always best to be evaluated at a

medical center with specialists in interstitial lung disease. The

average doctor, even the average pulmonologist just does

not see enough fibrosis to be able to answer our questions and

concerns. This field is changing and I for one want to know that my

doctor is up to date on all that's going on in the field.

> I would keep living your life and taking care of yourself. You are

doing well and living with and managing your disease. Someone said (I

think actually this person was talking about cancer but it applies to

us too) " I have pulmonary fibrosis but it doesn't have me. " That's

how I feel about it!

> Be kind to yourself!!

> Beth

> Age 49 Fibrotic NSIP 06/06 UCTD 07/08

>

> Change everything. Love and Forgive

>

>

>

>

>

> Pulmonay fibrosis diagnosis-then got a

lot better?

>

>

> I got a diagnosis of pulmonary fibrosis from my doctor in December,

> with a prognosis of 3 months to 2 years (very optimistic). This

> resulted from an acute episode that got worse over the course of a

> week before I went into the hospital. The dr. said I would never be

> off oxygen. He said everything he saw in my lungs was fibrosis

> (honeycombing) or early fibrosis (ground glass). He did not expect me

> to get any better. I had the some fibrosis that was stable for a few

> years, and got slightly worse about 9 months before the

> hospitalization. He said no one has fibrosis and inflammation at the

> same time. If I had evidence of fibrosis, the ground glass appearance

> must be fibrosis in the formative stage. He has not called this

> " idiopathic. "

>

> This is the only medical problem I have. I am 83. My GP said my EKG

> looks like the EKG of someone 25 years old.

>

> I got another opinion a few months later, and that dr. said I had

> stable pulmonary fibrosis and the ground glass appearance in my lungs

> looked like inflammation. He consulted with a radiologist and looked

> at films over a five year course. He wants to see if I continue to

> improve, and then if the improvement stops, try low-dose steroids and

> imuran.

>

> Over the months, I have gotten a lot better. I can take a much bigger

> breath, my breathing tests have been showing slight improvement, and

> the rales in my lungs aren't as loud. My energy level has improved a

> lot. The first dr. said I can be off the ox when sitting and walking

> around my home (one level). My imporvement is more consistent with

> the diagnosis made by the second dr.

>

> Has anyone ever had this experience, where initially they were told

> they would just get progressively worse, and then they got better? If

> so, did you try steroids or other treatment and did it help? Did the

> improvement last? How long? Did the ground glass appearance go away

> or improve on a CAT scan? Did the ox saturation across the alveoli

> improve with treatment? So far, this measurement has improved from

> 25% to 31% without treatment. If you got better without treatment,

> how long did it take until the improvement stabilized?

>

> Thank you for your help. Best of health to all!

>

[Guest guest]

techeml, Welcome, What's your name? and

where are you?

It really helps to know to keep all of us straight.

I have NSIP...I was DX'd 3 years ago almost to this day.

After all the booldtests known to man, PFT's, HRCTand 6 minute walls

and an open lung biopsy , no cause could be determined and the

fibrosis pattern was

consistant with NSIP ...not IPF..NS= Non-specific( in other words ,

they haven't a clue)

IP= intersititial pnuemonitis..inflammation if the interstitiial walls

of the lungs

They guess that I was infectd by a virus or bacterial infection in the

Spring and it left leaving my lungs scarred

with fibrosis. I never smoked, worked in hazardous areas, or did

drugs,etc.

I've been on prednisone and Imuran from DX in 2005. I've been stable

since DX,

even though the dosage of prednisone has been lowered from 40 to 10

over that time

and now the imuran is being lessened as well.

I have a form of NSIP that Thank G-d responds to prednisone..not all do.

I've also had just about every miserable side effect that drug brings

with it.

The data bases at the bottom of this page have lists of side effects

and many of us have

posted our experiences.

Good luck in your search for asnswers . I'm sure many of us will

respond to you.

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

techeml wrote:

I am glad that you are doing well. Thank you for responding.

The first doctor is supposed to be the top doctor in a major US city.

The second doctor is a specialist in pulmonary fibrosis in the same

city.

Did the lung disease make your heart worse? Did any doctor recommend

treatment for the NSIP? Do you have any idea what caused the lung

disease? Did the doctor tell you what happens to the inflammation if

it is not treated?

Thank you.

>

> Hi and welcome!

> My situation is a bit different from yours but in some ways our

experiences are similar. Back in June of 06 I was hospitalized. At

that time I was in congestive heart failure and was diagnosed with

pulmonary fibrosis. I had a lung biopsy done during that

hospitalization. During that hospitalization they told me I had

fibrosis but not what type. I learned that I had NSIP after I had been

discharged. That diagnosis has been confirmed several times by various

doctors.

> I was extremely ill when I was in the hospital. And I was told I

would always been on supplementary oxygen and except in

limited circumstances that is true. The only time I can get along

briefly without O2 is if I'm sitting, say watching tv or knitting or

reading or if I'm driving in the car. Then I can take the O2 off for a

half hour or so before my sats begin to drop. However if I'm up and

moving around at all I must use it or my sats drop rapidly. But the

good news is I've remained stable for over two years now. The hallmark

of this disease is deterioration so I'm profoundly grateful to stay

exactly where I am. My PFT's are stable, volumes, spirometry and

diffusions. Occasionally the numbers improve somewhat but honestly

I think for me at least, it's more a matter of having the tests done

on a good day or a bad day. A day when I'm tired or not, or the

weather is good or not or my allergies are bothering me or not.

> My CT scans have stayed pretty much the same. By the way your first

doctor is absolutely, spectacularly wrong when he told you that

imflammation and fibrosis cannot exist in the same lung at the same

time. They can and they do. He can have a look at my biopsy slides.

> I did get better. Better in the sense that my congestive heart

failure resolved when my lung disease was stablized. Better in the

sense that I can do most normal activities as long as I'm using my

oxygen. Better in the sense that two years down the road I'm still

here when back then there was no guarantee that I would be.

> I think there's alot that the average doctor doesn't know about

fibrosis in all it's varieties. It is always best to be evaluated at a

medical center with specialists in interstitial lung disease. The

average doctor, even the average pulmonologist just does

not see enough fibrosis to be able to answer our questions and

concerns. This field is changing and I for one want to know that my

doctor is up to date on all that's going on in the field.

> I would keep living your life and taking care of yourself. You are

doing well and living with and managing your disease. Someone said (I

think actually this person was talking about cancer but it applies to

us too) "I have pulmonary fibrosis but it doesn't have me." That's

how I feel about it!

> Be kind to yourself!!

> Beth

> Age 49 Fibrotic NSIP 06/06 UCTD 07/08

>

> Change everything. Love and Forgive

>

>

>

>

>

> Pulmonay fibrosis diagnosis-then got a

lot better?

>

>

> I got a diagnosis of pulmonary fibrosis from my doctor in December,

> with a prognosis of 3 months to 2 years (very optimistic). This

> resulted from an acute episode that got worse over the course of a

> week before I went into the hospital. The dr. said I would never be

> off oxygen. He said everything he saw in my lungs was fibrosis

> (honeycombing) or early fibrosis (ground glass). He did not expect

me

> to get any better. I had the some fibrosis that was stable for a

few

> years, and got slightly worse about 9 months before the

> hospitalization. He said no one has fibrosis and inflammation at

the

> same time. If I had evidence of fibrosis, the ground glass

appearance

> must be fibrosis in the formative stage. He has not called this

> "idiopathic. "

>

> This is the only medical problem I have. I am 83. My GP said my EKG

> looks like the EKG of someone 25 years old.

>

> I got another opinion a few months later, and that dr. said I had

> stable pulmonary fibrosis and the ground glass appearance in my

lungs

> looked like inflammation. He consulted with a radiologist and

looked

> at films over a five year course. He wants to see if I continue to

> improve, and then if the improvement stops, try low-dose steroids

and

> imuran.

>

> Over the months, I have gotten a lot better. I can take a much

bigger

> breath, my breathing tests have been showing slight improvement,

and

> the rales in my lungs aren't as loud. My energy level has improved

a

> lot. The first dr. said I can be off the ox when sitting and

walking

> around my home (one level). My imporvement is more consistent with

> the diagnosis made by the second dr.

>

> Has anyone ever had this experience, where initially they were told

> they would just get progressively worse, and then they got better?

If

> so, did you try steroids or other treatment and did it help? Did

the

> improvement last? How long? Did the ground glass appearance go away

> or improve on a CAT scan? Did the ox saturation across the alveoli

> improve with treatment? So far, this measurement has improved from

> 25% to 31% without treatment. If you got better without treatment,

> how long did it take until the improvement stabilized?

>

> Thank you for your help. Best of health to all!

>

No virus found in this incoming message.

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

Version: 8.0.138 / Virus Database: 270.6.10/1638 - Release Date: 8/27/2008 7:06 PM

[Guest guest]

Techeml

First.....you used a key word- " suppose " to be a top doctor. If he said

what you described without qualifying it and telling you that it could

be much longer then he's not a top doctor. Doctoring is more than

diagnosing and statistics. The last I knew of statistics you died 6

years or so ago and yet thats not true, but statistics say we don't live

until 83. I don't know what form of NSIP you do have but people live

with NSIP 10 or 12 or more years sometimes. As to the honeycombing, it

could be an indication of UIP or it could be a misinterpretation of a

CT.

Now, others have given you information on the common treatment and more

on the disease. However, you're here doing the right thing and that is

educating yourself so you can make the right choices for you.

As to being on oxygen, don't think of that as a bad thing. It's a good

thing-oxygen is your friend. It can protect other organs and give you

energy and breath. We have an image of being on oxygen. Just please get

an oximeter and keep your saturation levels up.

Also don't let PFT's unduly influence you. How do you feel? How do you

feel on oxygen? I had horrible PFT's in February-even worse than my

normal. Why? The mouthpiece was too big for my mouth. Since I've gotten

the flexible extensions and do much better. So many factors can effect

and every piece of equipment and scoring system is different.

As to causes, I can choose quite a few possibilities for mine...so pick

one. In reality even those who think they have identified the cause

can't be sure. There is far less we don't know than we do.

Just lean on friends here, learn what you can, but live and enjoy life

the most possible. None of us knows what our future holds so all we can

effect is our present. For me, today was good. I'm going to make

tomorrow good. I have no idea beyond that yet. But I do know that as

long as i focus on living, I'm best off. If I focused on the probable

statistics from the time I was diagnosed I'd feel much worse off than i

do. ly, i feel a whole lot better than I am. Partly because I

learned so much from others I met here shortly after diagnosis.

> > >

> > > Hi and welcome!

> > > My situation is a bit different from yours but in some ways our

> > experiences are similar. Back in June of 06 I was hospitalized. At

> > that time I was in congestive heart failure and was diagnosed with

> > pulmonary fibrosis. I had a lung biopsy done during that

> > hospitalization. During that hospitalization they told me I had

> > fibrosis but not what type. I learned that I had NSIP after I had

been

> > discharged. That diagnosis has been confirmed several times by

various

> > doctors.

> > > I was extremely ill when I was in the hospital. And I was told I

> > would always been on supplementary oxygen and except in

> > limited circumstances that is true. The only time I can get along

> > briefly without O2 is if I'm sitting, say watching tv or knitting or

> > reading or if I'm driving in the car. Then I can take the O2 off for

a

> > half hour or so before my sats begin to drop. However if I'm up and

> > moving around at all I must use it or my sats drop rapidly. But the

> > good news is I've remained stable for over two years now. The

hallmark

> > of this disease is deterioration so I'm profoundly grateful to stay

> > exactly where I am. My PFT's are stable, volumes, spirometry and

> > diffusions. Occasionally the numbers improve somewhat but honestly

> > I think for me at least, it's more a matter of having the tests done

> > on a good day or a bad day. A day when I'm tired or not, or the

> > weather is good or not or my allergies are bothering me or not.

> > > My CT scans have stayed pretty much the same. By the way your

first

> > doctor is absolutely, spectacularly wrong when he told you that

> > imflammation and fibrosis cannot exist in the same lung at the same

> > time. They can and they do. He can have a look at my biopsy slides.

> > > I did get better. Better in the sense that my congestive heart

> > failure resolved when my lung disease was stablized. Better in the

> > sense that I can do most normal activities as long as I'm using my

> > oxygen. Better in the sense that two years down the road I'm still

> > here when back then there was no guarantee that I would be.

> > > I think there's alot that the average doctor doesn't know about

> > fibrosis in all it's varieties. It is always best to be evaluated at

a

> > medical center with specialists in interstitial lung disease. The

> > average doctor, even the average pulmonologist just does

> > not see enough fibrosis to be able to answer our questions and

> > concerns. This field is changing and I for one want to know that my

> > doctor is up to date on all that's going on in the field.

> > > I would keep living your life and taking care of yourself. You are

> > doing well and living with and managing your disease. Someone said

(I

> > think actually this person was talking about cancer but it applies

to

> > us too) " I have pulmonary fibrosis but it doesn't have me. " That's

> > how I feel about it!

> > > Be kind to yourself!!

> > > Beth

> > > Age 49 Fibrotic NSIP 06/06 UCTD 07/08

> > >

> > > Change everything. Love and Forgive

> > >

> > >

> > >

> > >

> > >

> > > Pulmonay fibrosis diagnosis-then got a

> > lot better?

> > >

> > >

> > > I got a diagnosis of pulmonary fibrosis from my doctor in

December,

> > > with a prognosis of 3 months to 2 years (very optimistic). This

> > > resulted from an acute episode that got worse over the course of a

> > > week before I went into the hospital. The dr. said I would never

be

> > > off oxygen. He said everything he saw in my lungs was fibrosis

> > > (honeycombing) or early fibrosis (ground glass). He did not expect

me

> > > to get any better. I had the some fibrosis that was stable for a

few

> > > years, and got slightly worse about 9 months before the

> > > hospitalization. He said no one has fibrosis and inflammation at

the

> > > same time. If I had evidence of fibrosis, the ground glass

appearance

> > > must be fibrosis in the formative stage. He has not called this

> > > " idiopathic. "

> > >

> > > This is the only medical problem I have. I am 83. My GP said my

EKG

> > > looks like the EKG of someone 25 years old.

> > >

> > > I got another opinion a few months later, and that dr. said I had

> > > stable pulmonary fibrosis and the ground glass appearance in my

lungs

> > > looked like inflammation. He consulted with a radiologist and

looked

> > > at films over a five year course. He wants to see if I continue to

> > > improve, and then if the improvement stops, try low-dose steroids

and

> > > imuran.

> > >

> > > Over the months, I have gotten a lot better. I can take a much

bigger

> > > breath, my breathing tests have been showing slight improvement,

and

> > > the rales in my lungs aren't as loud. My energy level has improved

a

> > > lot. The first dr. said I can be off the ox when sitting and

walking

> > > around my home (one level). My imporvement is more consistent with

> > > the diagnosis made by the second dr.

> > >

> > > Has anyone ever had this experience, where initially they were

told

> > > they would just get progressively worse, and then they got better?

If

> > > so, did you try steroids or other treatment and did it help? Did

the

> > > improvement last? How long? Did the ground glass appearance go

away

> > > or improve on a CAT scan? Did the ox saturation across the alveoli

> > > improve with treatment? So far, this measurement has improved from

> > > 25% to 31% without treatment. If you got better without treatment,

> > > how long did it take until the improvement stabilized?

> > >

> > > Thank you for your help. Best of health to all!

> > >

> >

> >

> >

> >No virus found in this incoming message.

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

> >Version: 8.0.138 / Virus Database: 270.6.10/1638 - Release Date:

8/27/2008 7:06 PM

> >

> >

>

[Guest guest]

Techeml,(what is your name, by the way?)

Good morning! To answer your questions...the lung disease caused my heart issues. I was in congestive heart failure because my heart was having to work way to hard to get oxygen from my severely compromised lungs to the rest of my body. Once I began treatment for my lung disease, my heart issues resolved rapidly. I was told by my cardiologist in the hospital that my cardiac problems were secondary to my lung issues and that getting the lung situation under control would resolve my heart problems. That has proved true.

NSIP is one of the forms of pulmonary fibrosis that often responds to treatment with prednisone. I was on high doses (up to 100mg daily) for several months between June of 06 and February of 07 when I was finally weaned off the steroid. I have been stable since that time. I have PFT's and an echocardiogram every 3 or 4 months to monitor my condition but so far, so good.

In my case it's likely that the NSIP was caused by an auto-immune disease. I was recently diagnosed with undifferentiated connective tissue disease. I'm told that sometimes the lung disease can be the presenting symptom of such an auto-immune disease. That's good news in the sense that it means that the treatment of choice for the UCTD would also treat my lung disease. The steroids for all the lousy side effects are what is going to help me should my disease flare up.

Your last question....lung inflammation that's untreated causes that tissue to become fibrotic or scarred. That's why forms of PF that have large amounts of inflammation generally respond favorably to treatment with steroids (prednisone). It's the king of anti-inflammatory drugs.

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Pulmonay fibrosis diagnosis-then got alot better?> > > I got a diagnosis of pulmonary fibrosis from my doctor in December,> with a prognosis of 3 months to 2 years (very optimistic). This> resulted from an acute episode that got worse over the course of a> week before I went into the hospital. The dr. said I would never be> off oxygen. He said everything he saw in my lungs was fibrosis> (honeycombing) or early

fibrosis (ground glass). He did not expect me> to get any better. I had the some fibrosis that was stable for a few> years, and got slightly worse about 9 months before the> hospitalization. He said no one has fibrosis and inflammation at the> same time. If I had evidence of fibrosis, the ground glass appearance> must be fibrosis in the formative stage. He has not called this> "idiopathic. "> > This is the only medical problem I have. I am 83. My GP said my EKG> looks like the EKG of someone 25 years old.> > I got another opinion a few months later, and that dr. said I had> stable pulmonary fibrosis and the ground glass appearance in my lungs> looked like inflammation. He consulted with a radiologist and looked> at films over a five year course. He wants to see if I continue to> improve, and then if the improvement stops, try low-dose steroids

and> imuran.> > Over the months, I have gotten a lot better. I can take a much bigger> breath, my breathing tests have been showing slight improvement, and> the rales in my lungs aren't as loud. My energy level has improved a> lot. The first dr. said I can be off the ox when sitting and walking> around my home (one level). My imporvement is more consistent with> the diagnosis made by the second dr.> > Has anyone ever had this experience, where initially they were told> they would just get progressively worse, and then they got better? If> so, did you try steroids or other treatment and did it help? Did the> improvement last? How long? Did the ground glass appearance go away> or improve on a CAT scan? Did the ox saturation across the alveoli> improve with treatment? So far, this measurement has improved from> 25% to 31% without treatment. If

you got better without treatment,> how long did it take until the improvement stabilized?> > Thank you for your help. Best of health to all!>