Re: Living and thriving not just surviving

[Guest guest]

MB,

I agree 1000% and you were the first one responding to me and gave me an attitude also. I want to be the one who sets the record for living the longest after diagnosis and give others a target to shoot for. There are other people in life far worse off than us. I don't know how I would handle being a paraplegic, or quad. We all have our crosses but the support I have found here has helped more than any medicine made. I can't imagine being totally alone and not have the computer to go to, and the friends I have made in such a short period of time.

   JOE/JOANIE JOE 59 IPF1/2008

GRIFFIN, GA.

-- Living and thriving not just surviving

Bruce,

Thank you so very much for those kind words. I appreciate them more than you know. It's amazing how the love and support that I get on this board makes such a HUGE difference in my life and my ability to carry on in spite of this ugly ugly disease.

Thinking back to when I was newly diagnosed and just out of the hospital.... I was flat out terrified, 46 years old, my son was just 20 and struggling mightily with many issues. The idea that I might not live to see him happy and moving in the right direction devastated me. I didn't know what to do or where to turn. The internet was a source of information but it was confusing and depressing. And then I found this group. It's not overstating it to say this group changed my life. I found Leanne, Peggy, Joyce, Sher, P, Phred, Grey and our beloved Ginger and many others who continued to LIVE with this disease. People who weren't waiting to die but continuing to live, enjoying their families, friends and pets, going on trips, having lunch, going to church etc etc. I knew that's what I wanted. Since then so many new people have joined the board, I've made two trips to meet folks in person (best trips of my life) and yes, I'm LIVING with PF not merely surviving.

I don't think anyone here realizes the extent to which we all affect one another. And just as important how we affect the hundreds of people who read this board but choose not to post. The inspiration,support, ideas, wisdom, humor and plain old practical horse sense is invaluable to all of us. Thanks to everyone, you are all a gift in my life and infinitely precious to me!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Sher

Beth

Well, you are a great example of living. You made major changes and compromises based on your condition. Surely it wasn't what you invisioned but you seem to be adjusting so well and getting use to North Carolina and you've found the best medical care. You went to spend time with Peggy and Leanne. You've become even more involved here. I understand you've got a disease and your condition, but I see a woman so alive and vibrant when I see you here.

Terry mentioned embracing the disease. Well, that may be going a bit too far in that all of us hate it. But, we do embrace it because we have no other good choice. All the other choices we have are so much worse.

I've mentioned before my uncle who was diagnosed 30 years ago with COPD and proceeded to spend the last 30 years in his recliner except when in bed, only leaving the house once or twice at most per year for funerals. He has now gone to the hospital with breathing problems but was only on 2 liters of oxygen at home. Another uncle emailed me "Louis has suffered for a number of years with this terrible lung problem". From what I have been told he isn't considered likely to make it out of the hospital although I don't know details. I know he's had some suffering and don't mean to not sound compassionate. In fact, I'm quite compassionate toward him because he wasn't fortunate enough to be in a community like ours where we learn how to live. Not knowing, he let his diagnosis become a death sentence and just waited. It's sad when I think of the fact that my disease is medically considered more serious, I'm on more oxygen, and I likely have far fewer years, yet I've gotten out of the house more times this year already than he has in 30 years and he was far more social and out and about type than me. They are all so shocked that I'm going to be traveling there soon after watching him. I wonder where he would have liked traveling but never realized he could. He never spent a night away from home and only portable he had was an E tank on cart.

> > > > > > > >> > > > > > > > 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> > > > > > > >> > > > > > >> > > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > > Caro> > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP> 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > Mississippi> > > > > ____________ _________ _________ _________ _________ __> > > > >

[Guest guest]

Joe

I want to be the one who sets the record for living the best.....

Actually I'm not even that greedy, just want to be smart enough to live

the best I can. You're so right about others. I know the time will come

when I'll need support here and from my counselor to not leg anger or

bitterness take hold of me, but, today, my life just is really pretty

good. I spend far more time worrying about others' problems than mine, a

weakness sometimes when I want to change the world. And, I don't think

its denial because there are moments when the reality hits me very hard.

It's refusing to let the disease or what's ahead define me or dictate

today.

> > > > > > > > >

> > > > > > > > > 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

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > Caro

> > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP

> > 01/08, RHEUMATOID ARTHRITIS 03/08

> > > > > > Mississippi

> > > > > > ____________ _________ _________ _________ _________ __

> > > > > >

[Guest guest]

AMEN FELLOW IPF!!!!!!!!!!!!!!!!!!!

-- Re: Living and thriving not just surviving

JoeI want to be the one who sets the record for living the best.....Actually I'm not even that greedy, just want to be smart enough to livethe best I can. You're so right about others. I know the time will comewhen I'll need support here and from my counselor to not leg anger orbitterness take hold of me, but, today, my life just is really prettygood. I spend far more time worrying about others' problems than mine, aweakness sometimes when I want to change the world. And, I don't thinkits denial because there are moments when the reality hits me very hard.It's refusing to let the disease or what's ahead define me or dictatetoday.> > > > > > > > >> > > > > > > > > Sher,> > > > > > > > > I'm happy to hear the doctors have switched your> > diagnosis. NSIP> > > > > > > > is definitely preferable to IPF, the life expectancy ismuch> > longer> > > > > > > > and as a bonus, it does not always progress. As a matterof> > fact,> > > > > > > > Dr. on at Duke just told me last month that he'sseen> > patients> > > > > > > > with NSIP who have been "stable for decades." I mean Iknow> > that my> > > > > > > > experience may be different but anything that gives ushope> > is> > > > > > > > helpful!> > > > > > > > > Have they switched your dx based on the behavior ofthe> > disease or> > > > > > > > also on the ct scan results? NSIP is usually very> > identifiable by CT> > > > > > > > scan. To identify the type of NSIP (fibrotic, cellularor> > mixed) you> > > > > > > > would need a biopsy. But at this point it probablydoesn'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 getwhy> > you've> > > > > > > > chosen not to go down that road.> > > > > > > > > In the meantime, celebrate stability!! Stable is myhappy> > word!!> > > > > > > > > Beth> > > > > > > > > Age 48 Fibrotic NSIP 06/06> > > > > > > > >> > > > > > > > > Change everything. Love and Forgive> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > > Caro> > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP> > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > Mississippi> > > > > > ____________ _________ _________ _________ _________ __> > > > > >

[Guest guest]

Just make sure we're ALL buried with our Computers so we can keep in touch from the 'other' side........Oh & get some one to keep your Internet Service Provider Subs up to date.....

Just an Idea!

SGIO

> > > > > > > > > >> > > > > > > > > > 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> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > > Caro> > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP> > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > Mississippi> > > > > > > ____________ _________ _________ _________ _________ __> > > > > > >

[Guest guest]

Ahem,

Not wanting to rain on anyones parade, but I feel you need to consider this when deciding who's going to be the longest lived.

I am immortal

I am already 3000 years old I just say that I'm 38, because it's the age I was when I stopped looking older!

Love Ze xx

> > > > > > > > > > > > > > > > > > > > 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 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Caro > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP > > > 01/08, RHEUMATOID ARTHRITIS 03/08 > > > > > > > Mississippi > > > > > > > ____________ _________ _________ _________ _________ __ > > > > > > >

[Guest guest]

3000 exactly? or what precisely is your age? How old at your next

birthday? We don't want rounded numbers like 3000.

> > > > > > > > > > >

> > > > > > > > > > > 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

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > > Caro

> > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07,

> UIP

> > > > 01/08, RHEUMATOID ARTHRITIS 03/08

> > > > > > > > Mississippi

> > > > > > > > ____________ _________ _________ _________ _________ __

> > > > > > > >

[Guest guest]

3147 at my next birthday! I was born in 1139 BCE, in what you now call northern europe. I lived in a round house!

Really at my age, it's not surprising that things are beginning to go wrong.

Love Ze xx> > > > > > > > > > > >> > > > > > > > > > > > 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> > > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > > Caro> > > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07,> > UIP> > > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > > Mississippi> > > > > > > > > ____________ _________ _________ _________ _________ __> > > > > > > > >

[Guest guest]

Zena, I believe you. In following your posts it's easy to see you are not of this world.

Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Living and thriving not just survivingDate: Tue, 15 Apr 2008 13:42:36 -0000

3147 at my next birthday! I was born in 1139 BCE, in what you now call northern europe. I lived in a round house!

Really at my age, it's not surprising that things are beginning to go wrong.

Love Ze xx> > > > > > > > > > > >> > > > > > > > > > > > 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> > > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > > Caro> > > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07,> > UIP> > > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > > Mississippi> > > > > > > > > ____________ _________ _________ _________ _________ __> > > > > > > > >

[Guest guest]

Just the sort of background you'd expect a Warrior Princess to have!

SGIO> > > > > > > > > > > > >> > > > > > > > > > > > > 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> > > > > > > > > > > > >> > > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > >> > > > > > > > > >> > > > > > > > > >> > > > > > > > > >> > > > > > > > > >> > > > > > > > > >> > > > > > > > > > Caro> > > > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF> 08/07,> > > UIP> > > > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > > > Mississippi> > > > > > > > > > ____________ _________ _________ _________ _________> __> > > > > > > > > >

[Guest guest]

As a matter of interest, Ze, have you had your Mitochondrial DNA (only inherited through ones mother's genes) tested to discover which group your furthest back direct MATERNAL ancestor belonged to????

I got mine done several years ago through the Oxford University mob...they were responsible for the global Human Genome Project.

My ( & daughters & grandchildren) gene test showed that we belong to a group of people that lived 20,000 years ago in the South of France...they came out of Africa & eventualy moved around the shores of the Meditteranean until they reached the rich Oyster Beds of the Camargue Region of France. Some moved with the groups up to the Dordogne Valley & became the Cave Dwellers there. Others moved over the Pyrennes to Northern France & became the Basques & the Asturians & Gallicians.

THe furtherest back I can Literally trace my Maternal line is to Wales around Camorgan..circa 1600's. Since the Welsh didn't move far afield it is highly likely that they were the migrants from Europearound 12000 years ago!

If you think of ones genes as physical 'message sticks' from one's Remote Ancestors then I FEEL that part of me HAS lived 20,000 years 'cos I know some of my story from that far back in time!

Cheers,

GIO

PS I LOVE eating oysters...no sauce...straight off the rocks as nature intended them!

> > > > > > > > > > > > >> > > > > > > > > > > > > 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> > > > > > > > > > > > >> > > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > >> > > > > > > > > >> > > > > > > > > >> > > > > > > > > >> > > > > > > > > >> > > > > > > > > >> > > > > > > > > > Caro> > > > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF> 08/07,> > > UIP> > > > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > > > Mississippi> > > > > > > > > > ____________ _________ _________ _________ _________> __> > > > > > > > > >

[Guest guest]

Not me, uncle, uncle, uncle on this one.

I want to go sliding under the gates of Heaven with a dark chocolate

bar in one hand, my favorite music playing (think 70's rock) wearing

really great shoes.

I don't want to live forever, just long enough.

S, Lubbock, TX

NSIP w/PF, 12/2006

> > > > > > > > > > >

> > > > > > > > > > > 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

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > > Caro

> > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF

08/07,

> UIP

> > > > 01/08, RHEUMATOID ARTHRITIS 03/08

> > > > > > > > Mississippi

> > > > > > > > ____________ _________ _________ _________ _________

__

> > > > > > > >

[Guest guest]

But , I am very much of this world! I've been here for so very very long!

Love Ze xx

[Guest guest]

Hi ,

Do you know it hasn't even occured to me. I'll have to check that out. I believe we have some french in us as we are supposedly related to the hugenots, my nans maiden name is a corruption of a hugenot name. But my own surname is a derivative of an ancient kentish name.

I've had fresh oysters. Best presented bit of seawater I've ever tasted! I do love other shellfish though. Mussels cooked in lager with a little onion and garlic - yum

Love Ze xx> > > > > > > > > > > > > >> > > > > > > > > > > > > > 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> > > > > > > > > > > > > >> > > > > > > > > > > > >> > > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > > > Caro> > > > > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF> > 08/07,> > > > UIP> > > > > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > > > > Mississippi> > > > > > > > > > > ____________ _________ _________ _________ _________> > __> > > > > > > > > > >

[Guest guest]

,

Now that's a great picture!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Living and thriving not just surviving

Not me, uncle, uncle, uncle on this one.I want to go sliding under the gates of Heaven with a dark chocolate bar in one hand, my favorite music playing (think 70's rock) wearing really great shoes.I don't want to live forever, just long enough. S, Lubbock, TXNSIP w/PF, 12/2006> > > > > > > > > > >> > > > > > > > > > >

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> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > >

> >> > > > > > > >> > > > > > > > Caro> > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07,> UIP> > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > Mississippi> > > > > > > > ____________ _________ _________ _________ _________ __> > > > > > > >

[Guest guest]

Is this Nan on her Maternal line or Paternal line?

It is the Direct Maternal line that can be traced using a gene test.

Cheers,

GIO

PS Myself, my Hubby, 2 daughters & 3 grandchildren visited the area I was speaking of in the South of France after we'd been to Cornwall last October - November. It was something very special to have 3 generations all together, exploring the regions of our furtherest back known female ancestor . The kids got so much out of it...the 2 oldest now love watching the British Time Team Program in the early evening.

They really relate to all that old stuff (I think Harry Potter helps with that too.) Imagine how excited they were to find out we have family links to quite a few of the castles where the Harry Potter Films were made. They're BUSTING to get back to Britain to visit those as well...Alnwick Castle etc. I was there in 2006 & had a ball in Northumberland & the Borders of Scotland before going over to Northern Ireland.

The trip we did last year was a deliberate act after I'd been diagnosed...we all decided THAT was the thing we MOST wanted to experience as a family before it was too late! It took a lot of effort, time, career, money wise for my daughters but we had a FABBY time & now have wondrous memories!

> > > > > > > > > > > > > > >> > > > > > > > > > > > > > > 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> > > > > > > > > > > > > > >> > > > > > > > > > > > > >> > > > > > > > > > > > >> > > > > > > > > > > >> > > > > > > > > > > >> > > > > > > > > > > >> > > > > > > > > > > >> > > > > > > > > > > >> > > > > > > > > > > >> > > > > > > > > > > > Caro> > > > > > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF> > > 08/07,> > > > > UIP> > > > > > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > > > > > Mississippi> > > > > > > > > > > > ____________ _________ _________ _________> _________> > > __> > > > > > > > > > > >

[Guest guest]

Maternal line, but obviously it was my nan's paternal line. My mum tried tracing her family tree once, but only managed to get back as far as the 17thC where we were peasant farmers. What was weird was that we were at the church where my family was buried and in british churches we have the big important graves at the front and the rest at the back. Well we were a bit early, the vicar was going to let us have a look in his records to see what we could find, so we were tramping around the graveyard and there were 3 gravestones to the side of the church. We thought that was a bit odd, but I looked and said 'That one says Hutton' (Hutton being my mums maiden name). My mum and aunt couldn't make out any name on the stone, neither could the vicar, but I was adamant that it said Hutton. Any way the vicar looked at the records and it was indeed Hutton, and this grave and 2 other graves were the ones we'd come to find. I don't know why I could make out the name. I knew we were looking for Hutton, but we didn't know the first names of anyone that we might find. > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > 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> > > > > > > > > > > > > > > >> > > > > > > > > > > > > > >> > > > > > > > > > > > > >> > > > > > > > > > > > >> > > > > > > > > > > > >> > > > > > > > > > > > >> > > > > > > > > > > > >> > > > > > > > > > > > >> > > > > > > > > > > > >> > > > > > > > > > > > > Caro> > > > > > > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF> > > > 08/07,> > > > > > UIP> > > > > > > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > > > > > > Mississippi> > > > > > > > > > > > > ____________ _________ _________ _________> > _________> > > > __> > > > > > > > > > > > >

[Guest guest]

Whereabouts in England was this grave, Ze? You're doing pretty well to get back to the 17C with peasant stock. Mostly their lives go unrecorded. It IS your Mum's direct line that is the one that will in to the gene test.

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> > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > >> > > > > > > > > > > > > > >> > > > > > > > > > > > > >> > > > > > > > > > > > > >> > > > > > > > > > > > > >> > > > > > > > > > > > > >> > > > > > > > > > > > > >> > > > > > > > > > > > > >> > > > > > > > > > > > > > Caro> > > > > > > > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06,> IPF> > > > > 08/07,> > > > > > > UIP> > > > > > > > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > > > > > > > Mississippi> > > > > > > > > > > > > > ____________ _________ _________ _________> > > _________> > > > > __> > > > > > > > > > > > > >

[Guest guest]

The grave is in Margaretting, Essex. It's not too hard to get back to the late 17thC as most records go back that far, but it is church records and you do need to know which parish to go to. (This was before people had internet at home.) Before that things are a bit hit and miss, unless you were nobility, in which case your family line would be guarded like a pedigree.

Love Ze xx> > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > > 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> > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > >> > > > > > > > > > > > > > >> > > > > > > > > > > > > > >> > > > > > > > > > > > > > >> > > > > > > > > > > > > > >> > > > > > > > > > > > > > >> > > > > > > > > > > > > > >> > > > > > > > > > > > > > > Caro> > > > > > > > > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06,> > IPF> > > > > > 08/07,> > > > > > > > UIP> > > > > > > > > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > > > > > > > > Mississippi> > > > > > > > > > > > > > > ____________ _________ _________ _________> > > > _________> > > > > > __> > > > > > > > > > > > > > >

[Guest guest]

I'll mail you privately re family history stuff now Ze if that's OK with you!

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> > > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > Caro> > > > > > > > > > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD> 02/06,> > > IPF> > > > > > > 08/07,> > > > > > > > > UIP> > > > > > > > > > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > > > > > > > > > Mississippi> > > > > > > > > > > > > > > > ____________ _________ _________ _________> > > > > _________> > > > > > > __> > > > > > > > > > > > > > > >

[Guest guest]

Anytime > > > > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > > > > 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> > > > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > Caro> > > > > > > > > > > > > > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD> > 02/06,> > > > IPF> > > > > > > > 08/07,> > > > > > > > > > UIP> > > > > > > > > > > > > 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > > > > > > > > > > > > > Mississippi> > > > > > > > > > > > > > > > > ____________ _________ _________> _________> > > > > > _________> > > > > > > > __> > > > > > > > > > > > > > > > >