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that is so exciting. I too have a pulmo dude, but I also see a Dr. of Chinese medicine, she is from Austria and lives in Boulder co. I take 2 different kinds of Chinese tinctures. One is for the respiratory and the other for liver. Remember everyone if your liver is functioning to its fullest alot of things fall apart. When I see her she too is really all about how I'm feeling. She feels that I can maintain where I'm at and hopefully some day get back some of my scared lungs. This is not for everyone but what do I have to loose, nothing. Because what she does for me mentally too is give me hope, where as the other doctors its like I'm sorry!! I'm I still scared that it won't work, but nothing else is working for me either, so I just have to be

patient and hope that I will live for a long timeI'm so happy for you!!!!!!!!!!!!!!!! Keep me up on your progress please, your the first one that I know who may do this alternative type of medicine. Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009To: Breathe-Support ; pulmonaryfibrosis Sent: Fri, January 22, 2010 10:20:38 PMSubject: FW: Glitches & Being a 'Work In Progress' Part 1

WARNING…2

long POSTS coming….Ignore/Delete…. all those who hate such numbers! Hi Air

Family…it’s probably about time I filled you in on my latest

Discoveries AND my lovely new Respiratory Physician…my former Dude has left

Lismore so I had to find a Newbie….my Respiratory Rehab Nurse Specialist

told me of a new guy visiting Lismore every week from Brisbane, who’s set

up a 2nd Lung Clinic here, in the last year & she’d been

getting good reports…soooooo I give him a GO! WOW…I’ve

hit my JACKPOT with him…he’s been part of the main Brisbane Lung

Transplant Clinic but decided he wanted to go out on his own to be able to

offer a more Holistic approach to Lung Treatment..he’s Chinese Australian…...so

THAT makes sense! Suits me just fine! I can TALK to

him…he’s had a lot of Big Teaching Hospital experience but

he’s not averse to listening to where I was at in my own journey. He

offers several ‘Pathways of Treatment & Management’…he

talks in terms of OPTIONS & how there is NO one solution & as yet no

successful, PROVEN cure so it depends on which Pathway his Patients decide they

want to take with his guidance & support….From all my research &

reading this Forum I get the impression that he’s really up-to-date with

all the Trials & where it’s all at! OMG was I

HEARING right!

So…he

reviews everything.. ASKS my reaction to the possibility of Lung Transplant.. we

go into HUGE discussion of THAT from a Medical, Cultural, Esoteric, Spiritual

perspective…he RESPECTS my views (I don’t want a Transplant ..if I

had he’d have pushed to get me into evaluation & onto the List ASAP

‘cos I’m coming up to the Cut-off Age in OZ!)… & we move

on to DRUGS… Same

scenario…….we’ll visit there again…he has some very

different ways of approaching Drug Treatment that MAY allow me to consider them

at a stage down the track. Instead of the ‘naughty school-girl response

(that I’ve had from other Res Phys) I get LISTENED to & a discussion

of various pros & cons & creative ways of approaching the whole thing! He VALIDATED

my intelligence in researching everything & wasn’t at all

threatened.. he SAID he can have much better Management Plans with his

‘switched ON’ patients….. He also gave

me CREDIT for improved PFT outcomes since I’ve been putting in so much

effort into Exercise & Weight Loss…YES there is a DIRECT CONNECTION

between WEIGHT & PF outcomes. We CAN improve our Lung Function by losing

weight & getting Fitter…..he immediately noticed the Weight Loss when

he was reviewing my PFT’s from the last few years…… He asked

if it was intentional & was really interested in what I’d been doing.

He encouraged me to keep going but carefully given a few more complications

that have arisen (I’ll write about THAT in a separate Post!) Except for my

GP none of the others had noticed let alone asked me anything! Importantly,

he told me that it seemed to him that I’d never been fully & properly

evaluated, especially for Connective Tissue Disease (TRUE!) &

he’d have to get me up to Brisbane to do that……PF is a

Metropolitan Disease Management Scenario he said BUT he’d also be able to

see me on his Lismore visits for Support & Encouragement. He was HORRIFIED

that I was only trotting along once a Year to the former bloke! So he’s

set GOALS & Desired Outcomes & we’re working towards that! First my new

set of glitches have to be addressed ….on to Part 2 of the Work in

Progress Saga…if you’re still with me! HA! See you next

POST.. GIO So

in

Oz

IPF:

Fibrotic NSIP/UIP ??

Reynauds'

May

2007

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click here!

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Hi ..yeah while this guy is a 'Regular' Specialist he's clearly not averse to me working with other modalities (acupuncture/ herbal medicine/ anti-oxident therapy..Refreshing!). It makes it so much easier to be upfront about things!

I notice you too have Raynaud's...he said 40% of NSIP PF folk have Raynaud's while only 10% of UIP patients present with it!

Cheers,

ort , Gascoigne wrote:>> that is so exciting. I too have a pulmo dude, but I also see a Dr. of Chinese medicine, she is from Austria and lives in Boulder co. I take 2 different kinds of Chinese tinctures. One is for the respiratory and the other for liver. Remember everyone if your liver is functioning to its fullest alot of things fall apart. When I see her she too is really all about how I'm feeling. She feels that I can maintain where I'm at and hopefully some day get back some of my scared lungs. This is not for everyone but what do I have to loose, nothing. Because what she does for me mentally too is give me hope, where as the other doctors its like I'm sorry!! I'm I still scared that it won't work, but nothing else is working for me either, so I just have to be patient and hope that I will live for a long time> > I'm so happy for you!!!!!!!!!!!!!!!! Keep me up on your progress please, your the first one that I know who may do this alternative type of medicine.> > Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009> > > > > > ________________________________> To: Breathe-Support ; pulmonaryfibrosis > Sent: Fri, January 22, 2010 10:20:38 PM> Subject: FW: Glitches & Being a 'Work In Progress' Part 1> > > > WARNING…2> long POSTS coming….Ignore/Delete…. all those who hate such numbers!> Hi Air> Family…it’s probably about time I filled you in on my latest> Discoveries AND my lovely new Respiratory Physician…my former Dude has left> Lismore so I had to find a Newbie….my Respiratory Rehab Nurse Specialist> told me of a new guy visiting Lismore every week from Brisbane, who’s set> up a 2nd Lung Clinic here, in the last year & she’d been> getting good reports…soooooo I give him a GO!> WOW…I’ve> hit my JACKPOT with him…he’s been part of the main Brisbane Lung> Transplant Clinic but decided he wanted to go out on his own to be able to> offer a more Holistic approach to Lung Treatment..he’s Chinese Australian…..so> THAT makes sense! Suits me just fine!> I can TALK to> him…he’s had a lot of Big Teaching Hospital experience but> he’s not averse to listening to where I was at in my own journey. He> offers several ‘Pathways of Treatment & Management’…he> talks in terms of OPTIONS & how there is NO one solution & as yet no> successful, PROVEN cure so it depends on which Pathway his Patients decide they> want to take with his guidance & support…..From all my research & > reading this Forum I get the impression that he’s really up-to-date with> all the Trials & where it’s all at! > OMG was I> HEARING right!> So…he> reviews everything.. ASKS my reaction to the possibility of Lung Transplant.. we> go into HUGE discussion of THAT from a Medical, Cultural, Esoteric, Spiritual> perspective…he RESPECTS my views (I don’t want a Transplant ..if I> had he’d have pushed to get me into evaluation & onto the List ASAP> ‘cos I’m coming up to the Cut-off Age in OZ!)… & we move> on to DRUGS…> Same> scenario…….we’ll visit there again…he has some very> different ways of approaching Drug Treatment that MAY allow me to consider them> at a stage down the track. Instead of the ‘naughty school-girl response> (that I’ve had from other Res Phys) I get LISTENED to & a discussion> of various pros & cons & creative ways of approaching the whole thing!> He VALIDATED> my intelligence in researching everything & wasn’t at all> threatened.. he SAID he can have much better Management Plans with his> ‘switched ON’ patients…..> He also gave> me CREDIT for improved PFT outcomes since I’ve been putting in so much> effort into Exercise & Weight Loss…YES there is a DIRECT CONNECTION> between WEIGHT & PF outcomes. We CAN improve our Lung Function by losing> weight & getting Fitter…..he immediately noticed the Weight Loss when> he was reviewing my PFT’s from the last few years…… He asked> if it was intentional & was really interested in what I’d been doing.> He encouraged me to keep going but carefully given a few more complications> that have arisen (I’ll write about THAT in a separate Post!)> Except for my> GP none of the others had noticed let alone asked me anything! > Importantly,> he told me that it seemed to him that I’d never been fully & properly> evaluated, especially for Connective Tissue Disease (TRUE!) & > he’d have to get me up to Brisbane to do that……PF is a> Metropolitan Disease Management Scenario he said BUT he’d also be able to> see me on his Lismore visits for Support & Encouragement. He was HORRIFIED> that I was only trotting along once a Year to the former bloke!> So he’s> set GOALS & Desired Outcomes & we’re working towards that! > First my new> set of glitches have to be addressed ….on to Part 2 of the Work in> Progress Saga…if you’re still with me! HA!> See you next> POST..> GIO> > > > > > > > > So> > > > > > > in> Oz > > IPF:> Fibrotic NSIP/UIP ??> Reynauds' > May> 2007 > > > > > > ________________________________> > Express yourself with over 10,000 FREE Email Smileys - click here!>

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Yea we will see where I'm at on Feb 1-5 going to Denver to National Jewish for more tests, we will see what their Diagnosis will be. YES IT REFRESHING!!!!!! I know that most people are not into all that stuff, but I have not really ever been one for putting unnecessary stuff into me that wasn't from natural items, unless it was the last resort. I will let you know how things go for me in Denver, and with seeing my Dr. of Chinese medicine after 3 months. I go and see her every 3 months and I so look forward to that trip. Being in her presence just makes me feel better Gascoigne SD, 50 yrs old,

Renaud's 2008, IPF 7/2009To: Breathe-Support Sent: Fri, January 22, 2010 11:01:37 PMSubject: Re: FW: Glitches & Being a 'Work In Progress' Part 1

Hi ..yeah while this guy is a 'Regular' Specialist he's clearly not averse to me working with other modalities (acupuncture/ herbal medicine/ anti-oxident therapy..Refreshing !). It makes it so much easier to be upfront about things!

I notice you too have Raynaud's... he said 40% of NSIP PF folk have Raynaud's while only 10% of UIP patients present with it!

Cheers,

ort (AT) yahoogroups (DOT) com, Gascoigne <michelle.gascoigne@ ...> wrote:>> that is so exciting. I too have a pulmo dude, but I also see a Dr. of Chinese medicine, she is from Austria and lives in Boulder co. I take 2 different kinds of Chinese tinctures. One is for the respiratory and the other for liver. Remember everyone if your liver is functioning to its fullest alot of things fall apart. When I see her she too is really all about how I'm feeling. She feels that I can maintain where I'm at and hopefully some day get back some of my scared lungs. This is not for everyone but what do I have to loose, nothing. Because what she does for me mentally too is give me hope, where as the other doctors its like I'm sorry!! I'm I still scared that it won't work, but nothing else is working for me either, so I just have to be patient and hope that I will live for a long

time> > I'm so happy for you!!!!!!!!! !!!!!!! Keep me up on your progress please, your the first one that I know who may do this alternative type of medicine.> > Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009> > > > > > ____________ _________ _________ __> From: Francis gina.francis3@ ...> To: Breathe-Support@ yahoogroups. com; pulmonaryfibrosis@ yahoogroups. com> Sent: Fri, January 22, 2010 10:20:38 PM> Subject: FW: Glitches & Being a 'Work In Progress' Part 1> > > > WARNING…2> long POSTS coming….Ignore/Delete…. all those who hate such numbers!> Hi Air> Family…it’s probably about time I filled you in on my latest> Discoveries AND my lovely new Respiratory Physician…my former Dude has left> Lismore so I had to find a

Newbie….my Respiratory Rehab Nurse Specialist> told me of a new guy visiting Lismore every week from Brisbane, who’s set> up a 2nd Lung Clinic here, in the last year & she’d been> getting good reports…soooooo I give him a GO!> WOW…I’ve> hit my JACKPOT with him…he’s been part of the main Brisbane Lung> Transplant Clinic but decided he wanted to go out on his own to be able to> offer a more Holistic approach to Lung Treatment..he’s Chinese Australian…..so> THAT makes sense! Suits me just fine!> I can TALK to> him…he’s had a lot of Big Teaching Hospital experience but> he’s not averse to listening to where I was at in my own journey. He> offers several ‘Pathways of Treatment & Management’…he> talks in terms of OPTIONS & how there is NO one solution

& as yet no> successful, PROVEN cure so it depends on which Pathway his Patients decide they> want to take with his guidance & support…..From all my research & > reading this Forum I get the impression that he’s really up-to-date with> all the Trials & where it’s all at! > OMG was I> HEARING right!> So…he> reviews everything.. ASKS my reaction to the possibility of Lung Transplant.. we> go into HUGE discussion of THAT from a Medical, Cultural, Esoteric, Spiritual> perspective…he RESPECTS my views (I don’t want a Transplant ..if I> had he’d have pushed to get me into evaluation & onto the List ASAP> ‘cos I’m coming up to the Cut-off Age in OZ!)… & we move> on to DRUGS…> Same> scenario…….we’ll visit there again…he has some very>

different ways of approaching Drug Treatment that MAY allow me to consider them> at a stage down the track. Instead of the ‘naughty school-girl response> (that I’ve had from other Res Phys) I get LISTENED to & a discussion> of various pros & cons & creative ways of approaching the whole thing!> He VALIDATED> my intelligence in researching everything & wasn’t at all> threatened.. he SAID he can have much better Management Plans with his> ‘switched ON’ patients…..> He also gave> me CREDIT for improved PFT outcomes since I’ve been putting in so much> effort into Exercise & Weight Loss…YES there is a DIRECT CONNECTION> between WEIGHT & PF outcomes. We CAN improve our Lung Function by losing> weight & getting Fitter…..he immediately noticed the Weight Loss when> he was reviewing my

PFT’s from the last few years…… He asked> if it was intentional & was really interested in what I’d been doing.> He encouraged me to keep going but carefully given a few more complications> that have arisen (I’ll write about THAT in a separate Post!)> Except for my> GP none of the others had noticed let alone asked me anything! > Importantly,> he told me that it seemed to him that I’d never been fully & properly> evaluated, especially for Connective Tissue Disease (TRUE!) & > he’d have to get me up to Brisbane to do that……PF is a> Metropolitan Disease Management Scenario he said BUT he’d also be able to> see me on his Lismore visits for Support & Encouragement. He was HORRIFIED> that I was only trotting along once a Year to the former bloke!> So he’s> set GOALS &

Desired Outcomes & we’re working towards that! > First my new> set of glitches have to be addressed ….on to Part 2 of the Work in> Progress Saga…if you’re still with me! HA!> See you next> POST..> GIO> > > > > > > > > So> > > > > > > in> Oz > > IPF:> Fibrotic NSIP/UIP ??> Reynauds' > May> 2007 > > > > > > ____________ _________ _________ __> > Express yourself with over 10,000 FREE Email Smileys - click here!>

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, My

very prolific writer sister in OZ...Wow those two post had

loads of information.

How do you keep it all straight? You seem to have been lucky with the

new docs. They will work together!!

What a concept...many would be less eager to do that. My two main

docs..GP and Pulmodude are OK with the

sharing of information and have even spoken to each other when I needed

them to do so.

Anyway...hopefully yours will get it all figured out and you can have

that sort of uneventful 2010 you were

hoping for.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Francis wrote:

WARNING…2

long POSTS coming….Ignore/Delete…. all those who hate such numbers!

Hi

Air

Family…it’s probably about time I filled you in on my latest

Discoveries AND my lovely new Respiratory Physician…my former Dude has

left

Lismore so I had to find a Newbie….my Respiratory Rehab Nurse

Specialist

told me of a new guy visiting Lismore every week from Brisbane, who’s

set

up a 2nd Lung Clinic here, in the last year & she’d been

getting good reports…soooooo I give him a GO!

WOW…I’ve

hit my JACKPOT with him…he’s been part of the main Brisbane Lung

Transplant Clinic but decided he wanted to go out on his own to be able

to

offer a more Holistic approach to Lung Treatment..he’s Chinese

Australian…..so

THAT makes sense! Suits me just fine!

I

can TALK to

him…he’s had a lot of Big Teaching Hospital experience but

he’s not averse to listening to where I was at in my own journey. He

offers several ‘Pathways of Treatment & Management’…he

talks in terms of OPTIONS & how there is NO one solution & as

yet no

successful, PROVEN cure so it depends on which Pathway his Patients

decide they

want to take with his guidance & support….From all my research

&

reading this Forum I get the impression that he’s really up-to-date

with

all the Trials & where it’s all at!

OMG

was I

HEARING right!

So…he

reviews everything.. ASKS my reaction to the possibility of Lung

Transplant..we

go into HUGE discussion of THAT from a Medical, Cultural, Esoteric,

Spiritual

perspective…he RESPECTS my views (I don’t want a Transplant ..if I

had he’d have pushed to get me into evaluation & onto the List ASAP

‘cos I’m coming up to the Cut-off Age in OZ!)… & we move

on to DRUGS…

Same

scenario…….we’ll visit there again…he has some very

different ways of approaching Drug Treatment that MAY allow me to

consider them

at a stage down the track. Instead of the ‘naughty school-girl response

(that I’ve had from other Res Phys) I get LISTENED to & a

discussion

of various pros & cons & creative ways of approaching the whole

thing!

He

VALIDATED

my intelligence in researching everything & wasn’t at all

threatened..he SAID he can have much better Management Plans with

his

‘switched ON’ patients…..

He

also gave

me CREDIT for improved PFT outcomes since I’ve been putting in so much

effort into Exercise & Weight Loss…YES there is a DIRECT CONNECTION

between WEIGHT & PF outcomes. We CAN improve our Lung Function by

losing

weight & getting Fitter…..he immediately noticed the Weight Loss

when

he was reviewing my PFT’s from the last few years…… He asked

if it was intentional & was really interested in what I’d been

doing.

He encouraged me to keep going but carefully given a few more

complications

that have arisen (I’ll write about THAT in a separate Post!)

Except

for my

GP none of the others had noticed let alone asked me anything!

Importantly,

he told me that it seemed to him that I’d never been fully &

properly

evaluated, especially for Connective Tissue Disease (TRUE!) &

he’d have to get me up to Brisbane to do that……PF is a

Metropolitan Disease Management Scenario he said BUT he’d also be able

to

see me on his Lismore visits for Support & Encouragement. He was

HORRIFIED

that I was only trotting along once a Year to the former bloke!

So

he’s

set GOALS & Desired Outcomes & we’re working towards that!

First

my new

set of glitches have to be addressed ….on to Part 2 of the Work in

Progress Saga…if you’re still with me! HA!

See

you next

POST..

GIO

So

in

Oz

IPF:

Fibrotic NSIP/UIP ??

Reynauds'

May

2007

Express yourself with over 10,000 FREE Email

Smileys -

click

here!

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didn't read 's long posts yet

as to Chinese medicine, my children really believe in it

my daughter was trying to get pregnant,

she got a chinese recipe of some concoction [it really looked gross in my opinion]

and i have a granddaughter!

was it the chinese medicine or just a coincidence, i will never know, but they believe in it and it worked for her

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: FW: Glitches & Being a 'Work In Progress' Part 1To: Breathe-Support Date: Friday, January 22, 2010, 11:45 PM

that is so exciting. I too have a pulmo dude, but I also see a Dr. of Chinese medicine, she is from Austria and lives in Boulder co. I take 2 different kinds of Chinese tinctures. One is for the respiratory and the other for liver. Remember everyone if your liver is functioning to its fullest alot of things fall apart. When I see her she too is really all about how I'm feeling. She feels that I can maintain where I'm at and hopefully some day get back some of my scared lungs. This is not for everyone but what do I have to loose, nothing. Because what she does for me mentally too is give me hope, where as the other doctors its like I'm sorry!! I'm I still scared that it won't work, but nothing else is working for me either, so I just have to be patient and hope that I will live for a long timeI'm so happy for

you!!!!!!!!! !!!!!!! Keep me up on your progress please, your the first one that I know who may do this alternative type of medicine.

Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009

From: Francis <gina.francis3@ bigpond.com>To: Breathe-Support@ yahoogroups. com; pulmonaryfibrosis@ yahoogroups. comSent: Fri, January 22, 2010 10:20:38 PMSubject: FW: Glitches & Being a 'Work In Progress' Part 1

WARNING…2 long POSTS coming….Ignore/Delete…. all those who hate such numbers!

Hi Air Family…it’s probably about time I filled you in on my latest Discoveries AND my lovely new Respiratory Physician…my former Dude has left Lismore so I had to find a Newbie….my Respiratory Rehab Nurse Specialist told me of a new guy visiting Lismore every week from Brisbane, who’s set up a 2nd Lung Clinic here, in the last year & she’d been getting good reports…soooooo I give him a GO!

WOW…I’ve hit my JACKPOT with him…he’s been part of the main Brisbane Lung Transplant Clinic but decided he wanted to go out on his own to be able to offer a more Holistic approach to Lung Treatment..he’s Chinese Australian…...so THAT makes sense! Suits me just fine!

I can TALK to him…he’s had a lot of Big Teaching Hospital experience but he’s not averse to listening to where I was at in my own journey. He offers several ‘Pathways of Treatment & Management’…he talks in terms of OPTIONS & how there is NO one solution & as yet no successful, PROVEN cure so it depends on which Pathway his Patients decide they want to take with his guidance & support….From all my research & reading this Forum I get the impression that he’s really up-to-date with all the Trials & where it’s all at!

OMG was I HEARING right!

So…he reviews everything.. ASKS my reaction to the possibility of Lung Transplant.. we go into HUGE discussion of THAT from a Medical, Cultural, Esoteric, Spiritual perspective…he RESPECTS my views (I don’t want a Transplant ..if I had he’d have pushed to get me into evaluation & onto the List ASAP ‘cos I’m coming up to the Cut-off Age in OZ!)… & we move on to DRUGS…

Same scenario…….we’ll visit there again…he has some very different ways of approaching Drug Treatment that MAY allow me to consider them at a stage down the track. Instead of the ‘naughty school-girl response (that I’ve had from other Res Phys) I get LISTENED to & a discussion of various pros & cons & creative ways of approaching the whole thing!

He VALIDATED my intelligence in researching everything & wasn’t at all threatened.. he SAID he can have much better Management Plans with his ‘switched ON’ patients…..

He also gave me CREDIT for improved PFT outcomes since I’ve been putting in so much effort into Exercise & Weight Loss…YES there is a DIRECT CONNECTION between WEIGHT & PF outcomes. We CAN improve our Lung Function by losing weight & getting Fitter…..he immediately noticed the Weight Loss when he was reviewing my PFT’s from the last few years…… He asked if it was intentional & was really interested in what I’d been doing. He encouraged me to keep going but carefully given a few more complications that have arisen (I’ll write about THAT in a separate Post!)

Except for my GP none of the others had noticed let alone asked me anything!

Importantly, he told me that it seemed to him that I’d never been fully & properly evaluated, especially for Connective Tissue Disease (TRUE!) & he’d have to get me up to Brisbane to do that……PF is a Metropolitan Disease Management Scenario he said BUT he’d also be able to see me on his Lismore visits for Support & Encouragement. He was HORRIFIED that I was only trotting along once a Year to the former bloke!

So he’s set GOALS & Desired Outcomes & we’re working towards that!

First my new set of glitches have to be addressed ….on to Part 2 of the Work in Progress Saga…if you’re still with me! HA!

See you next POST..

GIO

So

in Oz IPF: Fibrotic NSIP/UIP ??Reynauds'

May 2007

Express yourself with over 10,000 FREE Email Smileys - click here!

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Oh this is the first post I have read today and am crying already I am sooooo happy for you. I know your over the moon to have such a good caring Doc.Post actually wasn't long enough. I wanna hear more.. Love ya, TELL ALL.

Love & PrayersPeggyIPF, 2004

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