Introduction

[Guest guest]

BJ.... I'm sorry you were told,

'1-2 years'....but remember, we don't have expiration dates on our butts!

Keep on keepin' on. Things will work out just the way they are supposed to.

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

introduction> > > To: Breathe-Support@ yahoogroups. com> > > Date: Tuesday, June 9, 2009, 7:26 PM> > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time> > > between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> > >>

[Guest guest]

I know that there is no expiration date. I was just responding to Peggy saying it felt like she had been given a death sentence.Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, Idaho

From: artquilterpeg <artquilterpeg@ yahoo.com>Subject: Re: introductionTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 10, 2009, 10:16 AM

Hi Beverly,I am 53 years old and had an acute illness in 2007 that precipitated all the appointments that eventually yielded this diagnosis. I live in Bellevue as my husband's job is in the city and we didn't want him to have to deal with traffic. It is a beautiful area although it is expensive.Let me know when you come and I'll get you a direct # for an appointment at UW. They're good there.How have you been doing since diagnosis? I think the worst part is the initial research of the disease - makes it feel like you've been given a death sentence doesn't it? It would be nice if they could be a little more hopeful.If you get this way, let's get together. :)Warmly,Peggy Ellis> > > > > > > > > From: artquilterpeg <artquilterpeg@ ...>> > > Subject: introduction> > > To: Breathe-Support@ yahoogroups. com> > > Date: Tuesday, June 9, 2009, 7:26 PM> > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time> > > between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> > >>

[Guest guest]

Peggy E,

Just a word about stability. Many of us are stable for a time, then progress some, then stablize for awhile again. It's very very individual.

With the particular form of pulmonary fibrosis that I have (Fibrotic NSIP) folks can remain stable for a long time. I've been stable since my diagnosis in May of 2006. My pulmonologist at Duke says he's seen folks with NSIP who have been "stable for decades". That's my wish obviously but I realize there are no guarantees.

The most important thing any of us can do is take excellent care of ourselves, maintain good overall health and reduce stress as much as possible. Easier said than done, right?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, June 10, 2009 1:02:10 PMSubject: Re: introduction

Hi Peggy,It's nice to have another Peggy too! I'm sorry that you too are in this boat however. :(Thanks for the nice welcome. I will take care of myself. I am a pretty healthy person for the most part and have never smoked. Actually it started rather acutely after a trip to the desert but wasn't Valley Fever or any of a host of other things. I'm going to get this GERD under control and see how that contributes to the overall progression. I am hoping that it is a big factor in my particular ILD. I am not keen about the biopsy. The doctor wants me to have it but I am just not feeling all that badly so why risk a bunch of stuff that might actually exacerbate the problem? Am I to understand that you were diagnosed in 2004? If so, how has your experience been? Are you stable? Is stable a state we can achieve? Everything I read is so gloomy but my doctor seems more positive. I want to know because if I am going to get way worse in

a few years I want to do what I can in terms of traveling etc. now but if I can stay stable for a decade or more I'd probably wait as $$$ is rather tight at the moment too. There seems to be so much to contemplate and also to prioritize. Until recently I really didn't think like this at all. I just lived like it would go on forever and now I feel like I should make more choices about what I really want to do with my time. I guess I should always have lived that way but it takes something like this to focus me I guess.I'm rambling - sorry. I might start a blog for this. I need to eat as my ride is coming in 30 minutes and then off to the quilt board meeting I go! Thanks again - Peggy Ellis> > > > Hi Everyone. I was diagnosed with ILD a year ago but

basically > thought the doctor was wrong so I stayed in denial until recently. I > might still be in denial on some level. I am seeing a great > pulmonologist at University of Washington in Seattle who is > researching GERD and ILD. I had a series of unusual events that > occurred that led him to think my ILD might be exacerbated by GERD or > maybe caused? He won't be specific. I get the impression that they > don't really know if GERD can cause ILD or not. So, this week I am > undergoing a host of tests for my lungs, heart and GERD. For the most > part I am doing really well and the only medication I am on is > omraprazole for the GERD and my hormone replacements. I am able to > play tennis but if I run for a few balls in a row my heart rate jumps > up really high. It comes back down again quickly so I have decided > for now to only play with people who have an

understanding of how > important it is for me to take my time between points even though > that is breaking the rules of tennis. I am suspecting that I should > probably switch to another form of exercise that is less 'fast > start'. Every thing I read about this disease is pretty depressing. > I'd love to talk to someone else out there who is doing well who and > is stable. I wonder how long I can stay stable and also if anyone has > had any success getting their ILD arrested in development by managing > their GERD.>

[Guest guest]

Hi Beth,

That is good news that your doctor has stable clients for that long. Yes, I do

believe that stress is a factor in all our health issues and my life has been

pretty stressful these past 4 to 5 years but I am working on maintaining my

sense of humor and it does come pretty easily to me. My father was a fun and

funny man and joked right up to his death so he was a good role model on how to

live and how to laugh at even the roughest stuff.

I'm going to do my best to maintain my good health and hope I can be one of

those who stay stable for a long time. There are times when I think I've

already had this for much of my life but I had something else a couple years ago

that exacerbated it for a bit then resolved but caused me to seek out an

excellent hospital. I was lucky as I lived in Denver where National Jewish

Hospital is - an internationally recognized pulmonary hospital so I went there

and then followed through with everything then moved her and got in with Dr.

Ganesh Raghu at Univ Wash who is an expert. I am wondering now if the real

reason we actually transferred here is so that I could be treated by him since

he is seriously interested in GERD and ILD and since my GERD has been being

treated many of my worst symptoms have nearly vanished. It's amazing how often

in life things fall into place to support me just when I felt like it was

falling apart. Gives me pause to count my blessings.

I have already given this web site to another person who heard of a man who was

told he had a terrible lung disease etc. and although I don't know for sure if

it is PF or ILD he will have the support if it is.

Thanks so much for everything.

Peggy Ellis ILD 2007, 53yo, Bellevue, mother, wife, quilter, tennis player! I

am more than just my disease and my age!

> >

> >

> >

> > Hi Everyone. I was diagnosed with ILD a year ago but basically

> > thought the doctor was wrong so I stayed in denial until recently. I

> > might still be in denial on some level. I am seeing a great

> > pulmonologist at University of Washington in Seattle who is

> > researching GERD and ILD. I had a series of unusual events that

> > occurred that led him to think my ILD might be exacerbated by GERD or

> > maybe caused? He won't be specific. I get the impression that they

> > don't really know if GERD can cause ILD or not. So, this week I am

> > undergoing a host of tests for my lungs, heart and GERD. For the most

> > part I am doing really well and the only medication I am on is

> > omraprazole for the GERD and my hormone replacements. I am able to

> > play tennis but if I run for a few balls in a row my heart rate jumps

> > up really high. It comes back down again quickly so I have decided

> > for now to only play with people who have an understanding of how

> > important it is for me to take my time between points even though

> > that is breaking the rules of tennis. I am suspecting that I should

> > probably switch to another form of exercise that is less 'fast

> > start'. Every thing I read about this disease is pretty depressing.

> > I'd love to talk to someone else out there who is doing well who and

> > is stable. I wonder how long I can stay stable and also if anyone has

> > had any success getting their ILD arrested in development by managing

> > their GERD.

> >

>

[Guest guest]

Hi Sher,

Yes, you call. Remember the saying about the squeaky wheel! I didn't go

through any of that to get an appt. Just tell them that we linked up on this

site and I gave you their number and suggested you call for an appt. I make my

appts. directly with them. Once you are in, you're golden!

Good luck and we'll get together when you come up for those appts. there is a

lovely tea room with beautiful views!

Peggy

> >

> > I live in Oregon, about 25 miles south of Portland. I'll be going to UWMC

too when my name comes up for appt. I'm on the 'waiting list'.

> > I was dx over 3 years ago and have remained fairly stable. Whatever form

of PF I have it is slow progressing. I'm anxious to find out the strain.

> > For me and for others on the board who may be like me but can't/don't go

to a teaching hospital.

> > What is your name and in what state do you live?

> > Welcome to our board. We'll get acquainted as time goes by. You're in the

best place you can be as we share our common disease.

> > MamaSher; 70, IPF 3-06, OR.

> > Nasturtiums

> > Don't fret about tomorrow, God is already there!

> >

> > introduction

> >

> >

> >

> >

> >

> > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the

doctor was wrong so I stayed in denial until recently. I might still be in

denial on some level. I am seeing a great pulmonologist at University of

Washington in Seattle who is researching GERD and ILD. I had a series of unusual

events that occurred that led him to think my ILD might be exacerbated by GERD

or maybe caused? He won't be specific. I get the impression that they don't

really know if GERD can cause ILD or not. So, this week I am undergoing a host

of tests for my lungs, heart and GERD. For the most part I am doing really well

and the only medication I am on is omraprazole for the GERD and my hormone

replacements. I am able to play tennis but if I run for a few balls in a row my

heart rate jumps up really high. It comes back down again quickly so I have

decided for now to only play with people who have an understanding of how

important it is for me to take my time between points even though that is

breaking the rules of tennis. I am suspecting that I should probably switch to

another form of exercise that is less 'fast start'. Every thing I read about

this disease is pretty depressing. I'd love to talk to someone else out there

who is doing well who and is stable. I wonder how long I can stay stable and

also if anyone has had any success getting their ILD arrested in development by

managing their GERD.

> >

>

[Guest guest]

Peggy...ok, I called and left a msg...we'll see what we will see.

Thanks.

Tea room sounds nice.

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

introduction> > > > > > > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> >>

[Guest guest]

Peggy....you are just too sweet.

I did call and no, calling does not speed up the process...

So it's just a waiting game now. It's ok. What with us planning on moving in maybe 45-60 days I wouldn't want to squeeze in a trip to Seattle too.

And, I am not critically ill so I'm able to wait.

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

introduction> > > > > > > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> >>

[Guest guest]

Hi MamaSher,Is that what you prefer to be called? Well, I hope it all works out perfectly that you can move and have your appointment all in a convenient time. Keep me posted on the progress. Moving is so much work. I know, did it 4 times since 2004. Hopefully we can stay here for at least a decade. Much of that will depend on how my health does I suspect.I sure am enjoying my freedom from that wire - oh my gosh that was annoying.Cheers,Peggy E.

From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: Re: introductionTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 10:25 AM

Peggy...ok, I called and left a msg...we'll see what we will see.

Thanks.

Tea room sounds nice.

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

introduction> > > > > > > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> >>

[Guest guest]

Peggy... MamaSher is fine or Sher...I "mother" everyone on the board so I guess it's a good name.

We are really looking forward to this move... our final move unless illness gets so severe something takes place.

We are about 4 minutes from our daughter! As close as we can get without moving in!

We've been waiting for about 4 years...to get closer to Lysa, get downstairs and feel we are there to stay.

This will be a bit different and we are already mentally trying to adjust to a more "independent living" residence.

One main door, lockup at night. All apts off inside hallways. No decks or porches. We will miss that but as I said, Lysa/family are 4 min away and they have a beautiful yard with fountains and all.

This place, Brentwood, has a lovely patio (w/fountain) and nice patio furniture. It's just simply the next step.

I'll return the chairs we just bought to Fred Meyers. No point in giving them away.

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

introduction> > > > > > > > > > > > Hi Everyone. I was diagnosed with ILD a year ago but basically thought the doctor was wrong so I stayed in denial until recently. I might still be in denial on some level. I am seeing a great pulmonologist at University of Washington in Seattle who is researching GERD and ILD. I had a series of unusual events that occurred that led him to think my ILD might be exacerbated by GERD or maybe caused? He won't be specific. I get the impression that they don't really know if GERD can cause ILD or not. So, this week I am undergoing a host of tests for my lungs, heart and GERD. For the most part I am doing really well and the only medication I am on is omraprazole for the GERD and my hormone replacements. I am able to play tennis but if I run for a few balls in a row my heart rate jumps up really high. It comes back down again quickly so I have decided for now to only play with people who have an understanding of how important it is for me to take my time between points even though that is breaking the rules of tennis. I am suspecting that I should probably switch to another form of exercise that is less 'fast start'. Every thing I read about this disease is pretty depressing. I'd love to talk to someone else out there who is doing well who and is stable. I wonder how long I can stay stable and also if anyone has had any success getting their ILD arrested in development by managing their GERD.> >>

[Guest guest]

Hello IPF Ggroup!I'm so glad to find this support group for those living with pulmonary fibrosis. I was just diagnosed in May of this year and am still dealing with shock and fear. I am a 53 year old single mother of 3 adult children, 2 of them I am still supporting through college and they are just as terrified as I am. I live in the beautiful state of Washington and work full time, my job is administrative and sedentary, so hopefully I'll be able to continue to work for a long time. I live alone with my dog and cat, so I need the support and encouragement of others who understand what I am going through. I went to the doctors in May for coughing and breathlessness that I had been experiencing for almost a year. I thought I might have COPD and just needed to quit

smoking. They did a chest x-ray, then a cat scan, then a high resolution cat scan and diagnosed IPF. I was referred to a pulmonary specialist doctor, had a breathing test and then a bronchoscopy confirming IPF. The doctor says I'm already at a moderate-severe stage of the disease with honeycombing present. My TLC is 49%. Three years ago, I went to the doctors for coughing and breathlessness. They did a chest x-ray and diagnosed me with pneumonia and sent me home with an antibiotic. My pulmonary doctor said that x-ray showed visible signs of IPF and I should have been followed up. So, I guess I've been living with this disease for about 3 years without treatment, lots of time for it to grow. The good news is that my inflammation is low, so the growth is slow. He started me on Prednisone, Azathioprine, and Acetylcsteine and feels positive the medicines will stop any further growth of scarring. The medicines are powerful drugs

with many side effects and I was scared to take them the first week, but then I was more scared to not take them. I am starting to deal with this a little better each day. I have so many questions and thoughts racing through my mind, but just wanted to start by asking you all for any encouraging thoughts you might have for me. Thanks, worth

[Guest guest]

Hi ... well finally a member fairly close by..

I live in Oregon...about 25 miles south of PTLD. Where are you?

Sorry to hear you share our common illness but this is the best place you can as we share with each other.

I am 3+ years out from dx. Still holding fairly stable. I take no med for PF but do use o2 w/exertion and at night. I also use a cpap machine for sleep apnea.

We'll just keep on keepin' on and remember, we have no expiration date stamped on our butts!

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

Introduction

Hello IPF Ggroup!I'm so glad to find this support group for those living with pulmonary fibrosis. I was just diagnosed in May of this year and am still dealing with shock and fear. I am a 53 year old single mother of 3 adult children, 2 of them I am still supporting through college and they are just as terrified as I am. I live in the beautiful state of Washington and work full time, my job is administrative and sedentary, so hopefully I'll be able to continue to work for a long time. I live alone with my dog and cat, so I need the support and encouragement of others who understand what I am going through. I went to the doctors in May for coughing and breathlessness that I had been experiencing for almost a year. I thought I might have COPD and just needed to quit smoking. They did a chest x-ray, then a cat scan, then a high resolution cat scan and diagnosed IPF. I was referred to a pulmonary specialist doctor, had a breathing test and then a bronchoscopy confirming IPF. The doctor says I'm already at a moderate-severe stage of the disease with honeycombing present. My TLC is 49%. Three years ago, I went to the doctors for coughing and breathlessness. They did a chest x-ray and diagnosed me with pneumonia and sent me home with an antibiotic. My pulmonary doctor said that x-ray showed visible signs of IPF and I should have been followed up. So, I guess I've been living with this disease for about 3 years without treatment, lots of time for it to grow. The good news is that my inflammation is low, so the growth is slow. He started me on Prednisone, Azathioprine, and Acetylcsteine and feels positive the medicines will stop any further growth of scarring. The medicines are powerful drugs with many side effects and I was scared to take them the first week, but then I was more scared to not take them. I am starting to deal with this a little better each day. I have so many questions and thoughts racing through my mind, but just wanted to start by asking you all for any encouraging thoughts you might have for me. Thanks, worth

[Guest guest]

Hi and welcome!

I'm glad you found us though I am very sorry you had reason to look for a group like this. You and I have alot in common. I was almost 47 when I was diagnosed 3 years ago. I turned 50 last week and I'm still here! I've been stable since my diagnosis and am working hard to stay that way. I am also a single mom of one adult son. Matt just turned 24. He was not quite 21 when I was diagnosed and we were both terrified. Now I think he tries to put it out of his mind as much as he can. But when we spend time together he's really very solicitous and goes out of his way to help me. I'm taking a vacation with my son and his girlfriend the first week in August and we're all looking forward to it. Trying to make memories while we can.

None of us comes with an expiration date but obviously there are no guarantees. Having this disease has shifted my focus to the things that really matter to me and helped me to ditch the things that have no lasting value.

Welcome aboard, we're glad you're here. I hope you find some of the support and friendship here that I have!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, July 20, 2009 1:40:33 PMSubject: Introduction

Hello IPF Ggroup!I'm so glad to find this support group for those living with pulmonary fibrosis. I was just diagnosed in May of this year and am still dealing with shock and fear. I am a 53 year old single mother of 3 adult children, 2 of them I am still supporting through college and they are just as terrified as I am. I live in the beautiful state of Washington and work full time, my job is administrative and sedentary, so hopefully I'll be able to continue to work for a long time. I live alone with my dog and cat, so I need the support and encouragement of others who understand what I am going through. I went to the doctors in May for coughing and breathlessness that I had been experiencing for almost a year. I thought I might have COPD and just needed to quit smoking. They did a chest x-ray, then a cat scan, then a high resolution cat scan and diagnosed IPF. I was referred to a pulmonary specialist doctor, had

a breathing test and then a bronchoscopy confirming IPF. The doctor says I'm already at a moderate-severe stage of the disease with honeycombing present. My TLC is 49%. Three years ago, I went to the doctors for coughing and breathlessness. They did a chest x-ray and diagnosed me with pneumonia and sent me home with an antibiotic. My pulmonary doctor said that x-ray showed visible signs of IPF and I should have been followed up. So, I guess I've been living with this disease for about 3 years without treatment, lots of time for it to grow. The good news is that my inflammation is low, so the growth is slow. He started me on Prednisone, Azathioprine, and Acetylcsteine and feels positive the medicines will stop any further growth of scarring. The medicines are powerful drugs with many side effects and I was scared to take them the first week, but then I was more scared to not take them. I am starting to deal with this a little

better each day. I have so many questions and thoughts racing through my mind, but just wanted to start by asking you all for any encouraging thoughts you might have for me. Thanks, worth

[Guest guest]

Hi , Welcome to our group (Air Family) I felt your fear and pain at your diagnosis. Please know you are not alone. we have had so many new members lately that I just haven't responded to and feel really bad about that but I am sure everyone knows they are supported here.I am 66 and was dx in 2004. I am sure I had IPF for at least 6 years before I was dx. I am now 5 years from dx. and have declined rapidly this past year. BUT I am still here, still breathing and still so grateful for each and every day. I admit some are quite rough but I try not to think of that part.. It is what it is. My family was scared stiff also but once everyone found out about the disease we all talk about it freely because I feel they all need to be prepared for anything that may arise. I have often said I am not afraid of death but it is the die-ing part I hate so much.. this disease is not for sissies. I do know you will make friends and get support here so hang in and ask any questions, vent or whatever you need.God Bless. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Hello IPF Ggroup!I'm so glad to find this support group for those living with pulmonary fibrosis. I was just diagnosed in May of this year and am still dealing with shock and fear. I am a 53 year old single mother of 3 adult children, 2 of them I am still supporting through college and they are just as terrified as I am. I live in the beautiful state of Washington and work full time, my job is administrative and sedentary, so hopefully I'll be able to continue to work for a long time. I live alone with my dog and cat, so I need the support and encouragement of others who understand what I am going through. I went to the doctors in May for coughing and breathlessness that I had been experiencing for almost a year. I thought I might have COPD and just needed to quit smoking. They did a chest x-ray, then a cat scan, then a high resolution cat scan and diagnosed IPF. I was referred to a pulmonary specialist doctor, had a breathing test and then a bronchoscopy confirming IPF. The doctor says I'm already at a moderate-severe stage of the disease with honeycombing present. My TLC is 49%. Three years ago, I went to the doctors for coughing and breathlessness. They did a chest x-ray and diagnosed me with pneumonia and sent me home with an antibiotic. My pulmonary doctor said that x-ray showed visible signs of IPF and I should have been followed up. So, I guess I've been living with this disease for about 3 years without treatment, lots of time for it to grow. The good news is that my inflammation is low, so the growth is slow. He started me on Prednisone, Azathioprine, and Acetylcsteine and feels positive the medicines will stop any further growth of scarring. The medicines are powerful drugs with many side effects and I was scared to take them the first week, but then I was more scared to not take them. I am starting to deal with this a little better each day. I have so many questions and thoughts racing through my mind, but just wanted to start by asking you all for any encouraging thoughts you might have for me. Thanks, worth