Re: Sher-NSIP

[Guest guest]

MB...pulmonologist changed dx due to lack of progression and pfts and scans. I'm about 5% changed since Mar. '06.

I am grateful. Funny how it is difficult to "change " my mindset however...

If I begin to progress noticeably I will make another decision I'm sure. But for right now, "If it works, don't fix it!".

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Sher-NSIP

Sher,

I'm happy to hear the doctors have switched your diagnosis. NSIP is definitely preferable to IPF, the life expectancy is much longer and as a bonus, it does not always progress. As a matter of fact, Dr. on at Duke just told me last month that he's seen patients with NSIP who have been "stable for decades." I mean I know that my experience may be different but anything that gives us hope is helpful!

Have they switched your dx based on the behavior of the disease or also on the ct scan results? NSIP is usually very identifiable by CT scan. To identify the type of NSIP (fibrotic, cellular or mixed) you would need a biopsy. But at this point it probably doesn't matter as long as your stable. I understand why you wouldn't put yourself through that. I don't regret my biopsy but I totally get why you've chosen not to go down that road.

In the meantime, celebrate stability!! Stable is my happy word!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

[Guest guest]

Sher,

I hear you and I totally get it. Another way to put it would be 'let sleeping dogs lie' right? That's one of the reasons I'm not doing any treatment for my NSIP at all. Dr. on told me if I start to deteriorate in any way, we'll be 'aggressive' in treating it, probably prednisone and Immuran but for now, I'm stable and happy to be so.

I'd use the dreaded prednisone again without hesitating for an instant given how quickly it stablized me last time around. For me it was worth it but I do realize that's not everyones experience.

In the meantime let's concentrate on STABILITY!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Sher-NSIP

Sher,

I'm happy to hear the doctors have switched your diagnosis. NSIP is definitely preferable to IPF, the life expectancy is much longer and as a bonus, it does not always progress. As a matter of fact, Dr. on at Duke just told me last month that he's seen patients with NSIP who have been "stable for decades." I mean I know that my experience may be different but anything that gives us hope is helpful!

Have they switched your dx based on the behavior of the disease or also on the ct scan results? NSIP is usually very identifiable by CT scan. To identify the type of NSIP (fibrotic, cellular or mixed) you would need a biopsy. But at this point it probably doesn't matter as long as your stable. I understand why you wouldn't put yourself through that. I don't regret my biopsy but I totally get why you've chosen not to go down that road.

In the meantime, celebrate stability!! Stable is my happy word!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

[Guest guest]

MB...I think I'll tiptoe around so I won't wake up "those dogs"...lol.

Have I by chance missed an address for Gwynnie? I've had a card for her since day one and didn't know where to send it. I'm glad I did not end up sending to hospital. She was home so darn quick she wouldn't have it at all.

Thanks

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Sher-NSIP

Sher,

I'm happy to hear the doctors have switched your diagnosis. NSIP is definitely preferable to IPF, the life expectancy is much longer and as a bonus, it does not always progress. As a matter of fact, Dr. on at Duke just told me last month that he's seen patients with NSIP who have been "stable for decades." I mean I know that my experience may be different but anything that gives us hope is helpful!

Have they switched your dx based on the behavior of the disease or also on the ct scan results? NSIP is usually very identifiable by CT scan. To identify the type of NSIP (fibrotic, cellular or mixed) you would need a biopsy. But at this point it probably doesn't matter as long as your stable. I understand why you wouldn't put yourself through that. I don't regret my biopsy but I totally get why you've chosen not to go down that road.

In the meantime, celebrate stability!! Stable is my happy word!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

[Guest guest]

I haven't seen an address for Gwynne either. I e-mailed the Signatures with a little Congrats from everyone. I hope we get an up date soon. She is really a trooper.I am sooo glad your done with the eye stuff. NO GLASSES... wonderful.I sent your Bible in a big post office envelope. I hope it will fit in your box.. just thought about that. I sent two to Kathie in a bigger one. I am nervous to see how they arrive.. PLEASE, PLEASE, let them arrive nicely.  Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." MB...I think I'll tiptoe around so I won't wake up "those dogs"...lol.Have I by chance missed an address for Gwynnie? I've had a card for her since day one and didn't know where to send it. I'm glad I did not end up sending to hospital. She was home so darn quick she wouldn't have it at all.Thanks Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!  Sher-NSIPSher,I'm happy to hear the doctors have switched your diagnosis. NSIP is definitely preferable to IPF, the life expectancy is much longer and as a bonus, it does not always progress. As a matter of fact, Dr. on at Duke just told me last month that he's seen patients with NSIP who have been "stable for decades." I mean I know that my experience may be different but anything that gives us hope is helpful!Have they switched your dx based on the behavior of the disease or also on the ct scan results? NSIP is usually very identifiable by CT scan. To identify the type of NSIP (fibrotic, cellular or mixed) you would need a biopsy. But at this point it probably doesn't matter as long as your stable. I understand why you wouldn't put yourself through that.  I don't regret my biopsy but I totally get why you've chosen not to go down that road.In the meantime, celebrate stability!! Stable is my happy word!!Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive      

[Guest guest]

Peggy... not here yet. Mail comes in the morning...Mailgirl usually puts bigger things in a wide bottom box that locks and puts the key in our mailbox....apt style stuff you know.

Can't wait to see it!

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Sher-NSIP

Sher,

I'm happy to hear the doctors have switched your diagnosis. NSIP is definitely preferable to IPF, the life expectancy is much longer and as a bonus, it does not always progress. As a matter of fact, Dr. on at Duke just told me last month that he's seen patients with NSIP who have been "stable for decades." I mean I know that my experience may be different but anything that gives us hope is helpful!

Have they switched your dx based on the behavior of the disease or also on the ct scan results? NSIP is usually very identifiable by CT scan. To identify the type of NSIP (fibrotic, cellular or mixed) you would need a biopsy. But at this point it probably doesn't matter as long as your stable. I understand why you wouldn't put yourself through that. I don't regret my biopsy but I totally get why you've chosen not to go down that road.

In the meantime, celebrate stability!! Stable is my happy word!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

[Guest guest]

Beth,

I am begining to think i too have NSIP and not IPF,

I was diagnosed in 1995

I have responded well to prednisone

I am stable for long periods( as at present

Each time the dosage is increased my cough lessens and lung condn.

improves.

I have been on o2 since 3 years 2L on rest and 4 L on exertion.

what do you feel?

Geeta

>

> Sher,

> I'm happy to hear the doctors have switched your diagnosis. NSIP

is definitely preferable to IPF, the life expectancy is much longer

and as a bonus, it does not always progress. As a matter of fact,

Dr. on at Duke just told me last month that he's seen patients

with NSIP who have been " stable for decades. " I mean I know that my

experience may be different but anything that gives us hope is

helpful!

> Have they switched your dx based on the behavior of the disease or

also on the ct scan results? NSIP is usually very identifiable by CT

scan. To identify the type of NSIP (fibrotic, cellular or mixed) you

would need a biopsy. But at this point it probably doesn't matter as

long as your stable. I understand why you wouldn't put yourself

through that. I don't regret my biopsy but I totally get why you've

chosen not to go down that road.

> In the meantime, celebrate stability!! Stable is my happy word!!

> Beth

> Age 48 Fibrotic NSIP 06/06

>

> Change everything. Love and Forgive

>

[Guest guest]

Gita,

That would probably be a good question to ask your doctor. I wouldn't dream of telling you I think you have one disease or the other. Just because IPF usually behaves one way doesn't mean that it will always behave that way. There are people with IPF that have been helped by prednisone and some live much longer than the predicted life span. I'm told that NSIP looks pretty unique on a CT scan so it's pretty identifiable but that doesn't mean it always is.

Please remember no one here is a doctor, I'm a patient just like you. I may be a nurse by education but I hadn't heard of pulmonary fibrosis till I was diagnosed with it.

I would definitely ask my doctor if it's possible that I could have survived 13 years with IPF or is it likely it's one of the othe forms. It would be interesting to hear what he has to say!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Sher-NSIP

Beth,I am begining to think i too have NSIP and not IPF, I was diagnosed in 1995I have responded well to prednisone I am stable for long periods( as at presentEach time the dosage is increased my cough lessens and lung condn. improves.I have been on o2 since 3 years 2L on rest and 4 L on exertion. what do you feel?Geeta>> Sher,> I'm happy to hear the doctors have switched your diagnosis. NSIP is definitely preferable to IPF, the life expectancy is much longer and as a bonus, it does not always progress. As a matter of fact, Dr. on at Duke just told me last month that he's seen patients with NSIP who have been "stable for decades." I mean I know

that my experience may be different but anything that gives us hope is helpful!> Have they switched your dx based on the behavior of the disease or also on the ct scan results? NSIP is usually very identifiable by CT scan. To identify the type of NSIP (fibrotic, cellular or mixed) you would need a biopsy. But at this point it probably doesn't matter as long as your stable. I understand why you wouldn't put yourself through that. I don't regret my biopsy but I totally get why you've chosen not to go down that road.> In the meantime, celebrate stability!! Stable is my happy word!!> Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive>

[Guest guest]

Beth,

Part of the reason I'm NOT sure of the type of IPF I have is that my HRCT scan showed Honeycombing (the hallmark ofUIP) quite clearly & looked like the typical UIP pattern, However, the Vats Lung Biopsy Report favoured Fibrotic NSIP...albeit the surgeon only took one sample from a part of my lung badly affected by consolidation & therefore the sample was considered 'unreliable' because it was so thin.

because of this I was refused entry to the Buid 3 Trial....

I remain in the dark & have decided that it really doesn't matter, life will go on regardless of the technicalities. I DO however, remain miffed that I went to all that trouble, pain & recovery to be MORE confused than before!

Since all of this I have read up-to-date research that indicates it is possible to have NSIP in one part of the lung & UIP in other parts.....go FIGURE?????????

in Oz

IPF: Fibrotic NSIP/UIP?????

Reynauds'

> >> > Sher,> > I'm happy to hear the doctors have switched your diagnosis. NSIP > is definitely preferable to IPF, the life expectancy is much longer > and as a bonus, it does not always progress. As a matter of fact, > Dr. on at Duke just told me last month that he's seen patients > with NSIP who have been "stable for decades." I mean I know that my > experience may be different but anything that gives us hope is > helpful!> > Have they switched your dx based on the behavior of the disease or > also on the ct scan results? NSIP is usually very identifiable by CT > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you > would need a biopsy. But at this point it probably doesn't matter as > long as your stable. I understand why you wouldn't put yourself > through that. I don't regret my biopsy but I totally get why you've > chosen not to go down that road.> > In the meantime, celebrate stability!! Stable is my happy word!!> > Beth > > Age 48 Fibrotic NSIP 06/06> > > > Change everything. Love and Forgive> >>

[Guest guest]

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

[Guest guest]

Jane....what's the difference between NSIP and UIP? I know what the acronyms mean but is there treatment for one over the other?

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

[Guest guest]

Sher,

As I understand it, UIP is pretty much the same thing as IPF and generally speaking there is no effective treatment and the life expectancy they will tell you is 2-5 years. NSIP more often responds positively to treatment with steroids (prednisone) and the life expectancy is thought to be considerably longer, 10-15 years. The other thing, I've been told by two different doctors is that NSIP "does not always progress". In other words, it can remain stable indefinitely. As I posted the other day, Dr. on at Duke told me he has seen patients with NSIP who have been "stable for decades". That's not generally the experience with UIP.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different

but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

[Guest guest]

Sher, More than 10 years ago when I started having problems with SOB I went to my first pulmo doc. He did every test he could, short of having a biopsy. I had CT with and without contrast, etc. That was in 1998. My doc then came to the conclusion that mine was NSIP. He prescribed a lot of prednisone. In May 2003, I had the VATS and it confirmed that it was NSIP. My first pulmo doc retired and the new pulmo doc wanted me to stay on 10 mg of prednisone. Plus, my new pulmo doc asked if I wanted a second opinion. I said yes and went to Emory in Jan 2004. My pulmo doc at Emory started in on Actimunne. In February he prescribed Actimunne. He wanted me to stay on prednisone until the actimunne kicked in. By the end of May, he had a plan for me to wean off of prednisone and I was still on Actimunne. The Emory Doc also wanted my biopsy slides to be examined at Emory by their lung pathologist. They determined that my IPF was NOT NSIP, but UIP/IPF. It has been ten years since I was diagnosed. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia

> > > >> > > > Sher,> > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > is definitely preferable to IPF, the life expectancy is much longer> > > and as a bonus, it does not always progress. As a matter of fact,> > > Dr. on at Duke just told me last month that he's seen patients> > > with NSIP who have been "stable for decades." I mean I know that my> > > experience may be different but anything that gives us hope is> > > helpful!> > > > Have they switched your dx based on the behavior of the disease or> > > also on the ct scan results? NSIP is usually very identifiable by CT> > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > > would need a biopsy. But at this point it probably doesn't matter as> > > long as your stable. I understand why you wouldn't put yourself> > > through that. I don't regret my biopsy but I totally get why you've> > > chosen not to go down that road.> > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > >> >>

[Guest guest]

MB....yes, I remember your post saying almost this same thing. One thing that stymies me is I can be in the store, nearly panting...check my sats and be in low 90s but know I need O2.

I guess I'll use O2 PRN and not worry about the darn numbers!

It's all so confusing. "It's" this way unless "it's" that way and sometimes "it" can be treated and sometimes not.

We are very similar....you take no meds and I don't either. You are on O2 as I am. What is the use of O2 for you??? Why do YOU have it???

Thanks MB.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

[Guest guest]

Jane....thanks for sharing this with me! I don't think my recent Dx of NSIP is based on much other than logic....and that's a good basis. Primarily very little progression in the past two years leads my Dr to say IPF progresses more rapidly so let's look at something else.

I just do not want to have a lung bio unless it becomes absolutely mandatory for some reason. I'm just getting too old for these major procedures.

So....if you now know you have UIP/IPF what is the current treatment? If you had known this 7-8 years before would treatment have been different?

I remember thinking some time back that being 10 years out is encouraging.

No matter how we cut it, it's a tough road isn't it Jane?

Hope is doing well and maybe has a job lead.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Sher-NSIP

Sher, More than 10 years ago when I started having problems with SOB I went to my first pulmo doc. He did every test he could, short of having a biopsy. I had CT with and without contrast, etc. That was in 1998. My doc then came to the conclusion that mine was NSIP. He prescribed a lot of prednisone. In May 2003, I had the VATS and it confirmed that it was NSIP. My first pulmo doc retired and the new pulmo doc wanted me to stay on 10 mg of prednisone. Plus, my new pulmo doc asked if I wanted a second opinion. I said yes and went to Emory in Jan 2004. My pulmo doc at Emory started in on Actimunne. In February he prescribed Actimunne. He wanted me to stay on prednisone until the actimunne kicked in. By the end of May, he had a plan for me to wean off of prednisone and I was still on Actimunne. The Emory Doc also wanted my biopsy slides to be examined at Emory by their lung pathologist. They determined that my IPF was NOT NSIP, but UIP/IPF. It has been ten years since I was diagnosed. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia

> > > >> > > > Sher,> > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > is definitely preferable to IPF, the life expectancy is much longer> > > and as a bonus, it does not always progress. As a matter of fact,> > > Dr. on at Duke just told me last month that he's seen patients> > > with NSIP who have been "stable for decades." I mean I know that my> > > experience may be different but anything that gives us hope is> > > helpful!> > > > Have they switched your dx based on the behavior of the disease or> > > also on the ct scan results? NSIP is usually very identifiable by CT> > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > > would need a biopsy. But at this point it probably doesn't matter as> > > long as your stable. I understand why you wouldn't put yourself> > > through that. I don't regret my biopsy but I totally get why you've> > > chosen not to go down that road.> > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > >> >>

[Guest guest]

Sher,

I've been on O2 24/7 since I was diagnosed. To quote my sister, "without the oxygen you would rapidly become a speed bump." (Isn't she just hilarious? Not really huh?) Unfortunately she's absolutely correct. I can sit still, without talking with no oxygen for 15 minutes or so but the minute I get up and move around I have to have it. I desat very rapidly with any activty without the oxygen. I need 3 liters at rest and while I'm sleeping and 4-5 with moderate activity. To exercise on the treadmill, I need 12 liters with a mask to keep my sats up. In short I use the O2 because without it I would die.

I would say that my lung function is more compromised than yours is. I remember someone posting, or maybe I read it somewhere but when we feel sob and our sats are in the 90's it's because our lungs are stiff and our brains interpret that as shortness of breath so that's why we feel that way. It does make sense and it does happen to me. I'll feel sob and I'll check my sats to see if I need to turn my O2 up and my sats are fine. So weird, isn't it?

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different

but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

[Guest guest]

Jane,

See that's why this is all so confusing and why we all need to take what we're told with a grain of salt. Especially when they tell us how long we're going to live. If every doctor tells you something different and they disagree on what we actually have. Ugh I hate it all!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Sher-NSIP

Sher, More than 10 years ago when I started having problems with SOB I went to my first pulmo doc. He did every test he could, short of having a biopsy. I had CT with and without contrast, etc. That was in 1998. My doc then came to the conclusion that mine was NSIP. He prescribed a lot of prednisone. In May 2003, I had the VATS and it confirmed that it was NSIP. My first pulmo doc retired and the new pulmo doc wanted me to stay on 10 mg of prednisone. Plus, my new pulmo doc asked if I wanted a second opinion. I said yes and went to Emory in Jan 2004. My pulmo doc at Emory started in on Actimunne. In February he prescribed Actimunne. He wanted me to stay on prednisone until the actimunne kicked in. By the end of May, he had a plan for me to wean off of prednisone and I was still on Actimunne. The Emory Doc also wanted my biopsy

slides to be examined at Emory by their lung pathologist. They determined that my IPF was NOT NSIP, but UIP/IPF. It has been ten years since I was diagnosed. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia

> > > >> > > > Sher,> > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > is definitely preferable to IPF, the life expectancy is much longer> > > and as a bonus, it does not always progress. As a matter of fact,> > > Dr. on at Duke just told me last month that he's seen patients> > > with NSIP who have been "stable for decades." I mean I know that my> > >

experience may be different but anything that gives us hope is> > > helpful!> > > > Have they switched your dx based on the behavior of the disease or> > > also on the ct scan results? NSIP is usually very identifiable by CT> > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > > would need a biopsy. But at this point it probably doesn't matter as> > > long as your stable. I understand why you wouldn't put yourself> > > through that. I don't regret my biopsy but I totally get why you've> > > chosen not to go down that road.> > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > >>

>>

[Guest guest]

MB, I don't really know what to believe about my diagnosis either. Fortunately, I have never heard how long I would have, except when I was sick & critically ill and yet, I am here.

Jane UIP/IPF 12/1998 > > > > >> > > > > Sher,> > > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > > is definitely preferable to IPF, the life expectancy is much longer> > > > and as a bonus, it does not always progress. As a matter of fact,> > > > Dr. on at Duke just told me last month that he's seen patients> > > > with NSIP who have been "stable for decades." I mean I know that my> > > > experience may be different but anything that gives us hope is> > > > helpful!> > > > > Have they switched your dx based on the behavior of the disease or> > > > also on the ct scan results? NSIP is usually very identifiable by CT> > > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > > > would need a biopsy. But at this point it probably doesn't matter as> > > > long as your stable. I understand why you wouldn't put yourself> > > > through that. I don't regret my biopsy but I totally get why you've> > > > chosen not to go down that road.> > > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > > Beth> > > > > Age 48 Fibrotic NSIP 06/06> > > > >> > > > > Change everything. Love and Forgive> > > > >> > > >> > >> >>

[Guest guest]

MB... yes, it is weird! I've been thinking if my SATS are ok then I don't need O2....in fact the Dr. told me that O2 does nothing for me if my SATS are not down. Well, she aint' walkin' in my moccasins! When I'm really SOB I've started using the O2 even if my SATS are ok. It DOES HELP.

Whatever....I could get obsessive over this SAT stuff!

Thanks for your replies.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

[Guest guest]

Hey Mama-Sher! Yes, the road is tough. I would not have done anything different except I wouldn't have taken all the prednisone and gotten all messed up! I would of thought of other ways to become more healthy. I did exercise but I would have tried to eat a good diet, and stayed away from sick people. I have ALWAYS gotten sickconstantly. I don't think it really matters what my pulmonary fibrosis is. The other thing that I needed to do is to get more rest. I was always so overinvolved, especially as a chaperone for and what she was in. Even though I am trying hard now to try to be the best that I can, that is all that I can do. I CAN understand why you don't want a biopsy. There is no known cure for any of it so you wouldn't be doing it for a drug trial or a lung biopsy, etc. Why go through all of that horrible pain if you don't have to. The lung biopsy that I had kind of ruined my health some. I primarily did it because of my age at the time (44 years old) and I had thought about transplant but now I am more excited about the drug trial that I am hopefully going to participate in. That is the most important thing that I can do for pulmonary fibrosis. Mama-Sher, just keep having fun! Toodles! Jane UIP/IPF 12/1998 aka pianolady_musicgirl P.S does not have a job yet. Keep praying!

> > > > >> > > > > Sher,> > > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > > is definitely preferable to IPF, the life expectancy is much longer> > > > and as a bonus, it does not always progress. As a matter of fact,> > > > Dr. on at Duke just told me last month that he's seen patients> > > > with NSIP who have been "stable for decades." I mean I know that my> > > > experience may be different but anything that gives us hope is> > > > helpful!> > > > > Have they switched your dx based on the behavior of the disease or> > > > also on the ct scan results? NSIP is usually very identifiable by CT> > > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > > > would need a biopsy. But at this point it probably doesn't matter as> > > > long as your stable. I understand why you wouldn't put yourself> > > > through that. I don't regret my biopsy but I totally get why you've> > > > chosen not to go down that road.> > > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > > Beth> > > > > Age 48 Fibrotic NSIP 06/06> > > > >> > > > > Change everything. Love and Forgive> > > > >> > > >> > >> >>

[Guest guest]

Just to add to this...there are 3 forns of NSIP...Cellular, Mixed & Fibrotic. Of these it's the Cellular that responds best to Steroid treatment.

Fibrotic NSIP is the one that has researchers still in a conundrum about with regard to it's relationship to UIP. The big question is why are they finding both types in the same lung at biospy. It is being speculated that Fibrotic NSIP becomes UIP at some point!

Where there is a discrepancy between HRCT result & Pathology from the VATS biopsy, then many researchers are saying that the overall diagnosis should be UIP not NSIP!

GIO

> > > >> > > > Sher,> > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > is definitely preferable to IPF, the life expectancy is much longer> > > and as a bonus, it does not always progress. As a matter of fact,> > > Dr. on at Duke just told me last month that he's seen patients> > > with NSIP who have been "stable for decades." I mean I know that my> > > experience may be different but anything that gives us hope is> > > helpful!> > > > Have they switched your dx based on the behavior of the disease or> > > also on the ct scan results? NSIP is usually very identifiable by CT> > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > > would need a biopsy. But at this point it probably doesn't matter as> > > long as your stable. I understand why you wouldn't put yourself> > > through that. I don't regret my biopsy but I totally get why you've> > > chosen not to go down that road.> > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > >> >>

[Guest guest]

My pulmo told me there is NO TREATMENT at all effective on UIP, not even to slow it down. They can more or less just try to keep you "comfortable" until the end. Caro Beth wrote: Sher, As I understand it, UIP is pretty much the same thing as IPF and generally speaking there is no effective treatment and the life expectancy they will tell you is 2-5 years. NSIP more

often responds positively to treatment with steroids (prednisone) and the life expectancy is thought to be considerably longer, 10-15 years. The other thing, I've been told by two different doctors is that NSIP "does not always progress". In other words, it can remain stable indefinitely. As I posted the other day, Dr. on at Duke told me he has seen patients with NSIP who have been "stable for decades". That's not generally the experience with UIP. Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Sher-NSIP , I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of

pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl > > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with

NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >> CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi __________________________________________________

[Guest guest]

Caro... I just noticed your name at the bottom of your post about my picture....thanks. That's my Rosebud.

I see you were Dx IPf in '07 and then UIP in '08. That's a double whammy isn't it? I wonder why you were given 2 Dxs of pretty much the same thing, as MB says? Hey, one "thing" is enough isn't it!

I'm going to have to stop fretting about "when" to use O2...SATS up or down.... I drive myself up the wall.

The way it is is the way it is. So if I feel the need for O2, I'll use it, regardless.

I hope you have a nice weekend.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

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[Guest guest]

MB...I'm thinking then, that your NSIP must have been fairly progressed when you were Dx...?

Is the disease staying stable since '06?

These acronyms are so confusing.

Dr. notes state I'm "now O2 dependent"...that's new....and also that "it's most important that I maintain oxygenation to prevent occurrence or progression of secondary PH."

I'm so anxious to hear results of the Echo.........

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

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[Guest guest]

Sher, When I got my report from my last visit it said UIP/IPF. I think they are thesame. And a bunch of other stuff. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Caro... I just noticed your name at the bottom of your post about my picture....thanks. That's my Rosebud.I see you were Dx IPf in '07 and then UIP in '08. That's a double whammy isn't it? I wonder why you were given 2 Dxs of pretty much the same thing, as MB says?  Hey, one "thing" is enough isn't it!I'm going to have to stop fretting about "when" to use O2...SATS up or down.... I drive myself up the wall.The way it is is the way it is. So if I feel the need for O2, I'll use it, regardless.I hope you have a nice weekend. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!  Re: Sher-NSIP, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing.  I had the same issue.  For about 4 years, mine was diagnosed NSIP.  then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF.  My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides.  I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial.  Whew!  I know it is confusing.  Maybe different parts of our lungs can have different kinds of pulmonary fibrosis!  (This statement came from me!)  Toodles!  Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi__________________________________________________

[Guest guest]

Peggy...now the light dawns! The UIP/IPF means that UIP is a strain of IPF! As NSIP/IPF is a strain of...........finally it makes sense.

How are you feeling Peggy? You talk so little about yourself...I really want to know ladybug.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

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